Facility,  Contact info	Location of mets	Regimen	Results	Length of treatment	Comments,  concurrent treatments	Adverse Reactions
COLOR KEY:	WHITE = current	YELLOW = no recent updates	GREEN = discontinued treatment		BLUE = deceased	ORANGE =  Do not post.
Anastozole (Arimidex) anti-estrogen hormone treatment usually used for breast CA.  An inhibitor, not a chemo drug.		lung - see Vinorelbine entry		4-05: Last week I went for my three month scan and the disease has stabilized again!. 9-05 Update:  have had 2 scans that have indicated stable disease.  10-05:  I just got the results of my latest scan checking on numerous lung mets and a few small suspected liver mets.  After 9 months on Arimidex, my disease remains stable!  1-06: stable disease, no new mets  4-06:  I have been on Arimidex for 15 months and my latest scans continue to show no new tumors and no growth.  I have numerous lung tumors and a few spots on my liver. 6-06:  stable disease   9-06:  stable disease	started 1-05.  Still on 1-06	Previously, I was on Navelbine which provided stability for about 6-7 months before the disease became active again.  My doctor said that it is common in ACC to have a treatment work for a time and then resume growth.  So...I expect that I will be looking for other treatments as time goes on.  6-06: I just received the results of my most recent 3 mos. interval CT scan- still stable. I have been on Arimidex (hormone treatment) for 18 months for numerous lung mets and two spots on the liver. Although there has been minor growth (largest nodule:1.6 cm to 1.8 cm) this is negligible and considered stable for an 18 month span. There has also been no report of new nodules over this period of time.  Prior to Arimidex, I enjoyed an 8 month period of stable disease while taking the chemo, Navelbine. These regimens were prescribed following recommendations by a chemo doctor at Sloan Kettering.	9-06:  I am now developing some morning joint discomfort and stiffness in my hands and feet- but it works out quickly.
BMS-188797 (clinical trial med, probably a taxane derivative similar to paclitaxel, docetaxel)		lung		continued growth.	9-2001 thru 5-2002	IRB protocol, which is a Phase 1 trial of weekly BMF-18879 for advanced malignancy between September, 2001 and may 2002 {I cannot find any information on this entry, but it is probably BMS-188797 by Bristol Myers Squibb)
Bevacizumab (Avastin)  (a VEGF inhibitor, not a chemo drug)		sinus recurrence, lung mets			may start 4-2006 following IMRT	Follow up IMRT (likely along with Erbitux) and Avastin/Tarceva.  Maybe  RFA on the two lung mets, too.  We've already started her on Doxyxycline (as a broad-spectrum MMP inhibitor, since an MMP inhibitor seems to have worked for her for 7 years) but are waiting on the other follow-up treatments until wound healing progresses further.
Bevacizumab (Avastin)  (a VEGF inhibitor, not a chemo drug)		lung, brain		deceased 3-06	started 10-05	also on paclitaxel and carboplatin.  See paclitaxel cocktail entry.
Bevacizumab (Avastin)  (a VEGF inhibitor, not a chemo drug), Carboplatin (Paraplatin), and Paclitaxel (Taxol)		spine, liver		My mets are in my liver and spine, after 3 treatments I received a cat scan and the tumors have shrunk significantly!!!!!  I saw them to be about a quarter of the size that they were before. I will have a pet scan after the sixth treatment.   10-06:  starting capecitabine / docetaxel   6-07:  After 1 year my cancer did come back so I have been switched to a new drug called Sutent.	6-06:  I am currently on Carboplatin, Taxol, Avastin and Aredia (a bone strengthener).   I have had 4 treatments, to day will be my 5th.  Took 4-06 - 4-07	I have tolerated this treatment really well. I have it every 3 weeks. I am absolutely fine two days following chemo. I actually go to work those days. The fourth day I feel very very tired, (hit by a truck tired) they give me relafen for joint aches and compazine for nausea ( but I have had no nausea) By the fifth day I'm back at work for 2 more weeks and then we do it again.	One side effect I did have after the fourth treatment was a rash on my face and chest. It has cleared up in time to get hit again. I am eating a very healthy diet, lots of vegetables and protein, no sugar or processed foods. I also take some immune building supplements.
Bevacizumab (Avastin) + Irinotecan / Leaucovorin / 5FU						listed under Irinotecan (see below)
Bevacizumab (Avastin)  (a VEGF inhibitor, not a chemo drug) + Sonfrenib (an inhibitor)		lung, bone, liver	clinical trial by NIH	I have the first very small shrinkage I ever had in 16 years of breast  acc.  My oncologist is a specialist in new therapeutic and used my macro assay information to determine my treatments. Genomics may be the way to go for chemo resistant tumors.  Expired 9-06	12-2005 to 7-2006	7-06:  just came off 6 months NCI clinical trial Sorafenib/Avastin combination........Tough stuff!!  I had stable lung mets before trial and they remained stable.I also had a new liver met before trial and do not know how this reacted. I will know next week as I am having some new tests done.The side effects I experienced were unbearable and although I was not taken off the trial, I did stop the drugs voluntarily. Many on the trial did not experience what I did. I will not go into detail as it will probably influence you and mine was an extreme case. I was the only acc on the trial. I also had the smallest dose of anybody on the trial and there were 36 of us.
Bortezomib (Velcade)  (a proteosome inhibitor, not a chemo drug)				Yesterday's cat scan showed stable after 7 mo.  5-05:  After 8 months, growth in tumor.  7-05:  moved to a nursing home, doing about the same.	3-05:7 months	5-05:  I was on velcade for 8 mo. Went off because of neuropathy and increase in growth now, 2mm each tumor.	neuropathy
Bortezomib (Velcade) + Topotecan (Hycamtin)		lung	weekly infusions x 3 weeks, then off 1 week	8-06:  A CT scan after two months revealed significant additional growth so I've been taken out of the clinical trial.	started in early June 2006 at UC Davis (Sacramento, CA) for treatment of lung mets.
Bortezomib (Velcade) + Cetuximab (Erbitux) - EGFR inhibitor		primary - tongue base, lung mets	I get the infusion of certuximab and the injection of velcade every friday.  My 5th treatment is tomorrow.	no new growth of my lung mets  8-07:  first six week scan showed stopped grow and her second 6 week scan is this Friday.  9-07:  It has stopped her lung mets from growing.	6/7/2007, continuing through july 07.  We are going to be continuing on with the chemo trial for another 6 weeks (2 cycles) and then I will have another CT scan to assess my progress.	stage 1 trial.  I have the ACC primary tumor in the tongue base for which I received Neutrom beam radiation but no surgery.  That tumor has been consistantly shrinking for the last 6 months.  I have about 7 asymptomatic lung mets, the largest about 2 cm.	9-07:  They have removed  her from the study due to the side effects.  She is very unstable and has had a few problems with her breathing.  Her blood pressure has dropped to  very low and unsafe levels making the simplest chores a difficulty.
Bortezomib (Velcade) +/- Doxorubicin (Adriamycin/Doxil)  An inhibitor + traditional chemo regimen		lung	clinical trial - borzetomib only for first phase, then add doxorubicin.	5-05  my lung mets have grown by just over 20% .  My mets while growing rapidly are not near anything that would immediately cause me discomfort so I am still symptom free and should be for a while yet.  My largest nodule seems to be about 4.7 x 3.3 and the 2nd one is 3.5 x 3.5 and the last one they are tracking is 3.1 x 2.7.   6-05:  my lung mets have continued to grow while on the clinical trial.  While my growth slowed, it grew more like 7%, they have given me the impression that if it hasn't shrunk my tumors at this juncture, it probably won't if I continue.	start clinical trial 4-05.  5-05:  I just met with the doctor from the clinical trial and his recommendation is to continue for one more cycle with bortezomib - (the inhibitor) and the added chemo (doxorubicin).  Discontinued this treatment 6-05.	I have only been in the trial for 6 weeks and have only taken the bortezomib.  I now have to decide whether or not to continue with just the bortezomib (if allowed) or to continue with the bortezomib and the doxrubicin or try something new altogether.   6-05:   I have contacted the closest (Phili) medical center to me that has the clinical trial for:  Lapatinib in Treating Patients With Recurrent and/or Metastatic Adenoid Cystic Cancer or Other Salivary Gland Cancers to see if I qualify.  I am also going to have a new consultation with Dr. Kies at MD Anderson and then will decide.	No real side effects to speak of.  Maybe a little tired.
Capecitabine (Xeloda)		Lung	unknown	Lung nodules still growing	data from Chemo list (Spring '03)	I'm one of two ACC'ers who've tried Xeloda, and reported "lung nodules still growing." I had new MRIs/CAT scans last month. Both my head tumor and lung lesions showed no signs of growth after 6 mo of treatment. Largest lung lesion showed slight reduction in size. Oncologist is hopeful, will keep me on Xeloda and repeat scans in Oct.	unknown
Capecitabine (Xeloda)		Lung, more than 70 mets with a fast growth rate in both number and size.  largest 4-5 being around 2cm	started 3-04 at 2000mg/day. I took a pill for 3 weeks on and one week off.   7-04 dosage increased to 4000mg per day	7-04: Good news!!!!  Last Scan showed only slight increases to size and number, down from very rapid growth  9-04 update: Dosage changed to 4000mg per day starting in July.  On 10th day of 14 day cycle had to stop due to sever feet blisters and stomach cramps. Not going to start any dosage again until review of CT scheduled for mid Sept.  Jan 05:  Mets showed 25% growth in size.  8-05 update:  I am having a CT done to determine which area we are going to biopsy.  The biopsy will be sent for analysis to determine which chemo or clinical trial will be best for me.	Started 3-04, Stopped Xeloda in December 04 due to severe fatigue.   CT in Jan 05 showed 20% more growth so doctor and I agreed that Xeloda had not been working. MRI of spine (March 05) showed 2 growths on neck so I am trying to control pain from this.	Doctor also prescribed Celebrex 2 months ago to help with hand & foot syndrome associated with this chemo treatment.  Also told me to take Vitamin B6 100mg twice a day with chemo, also suppose to help with dry cracking skin around feet & hands.	some fatigue, but I had this before chemo as well.  some loose bowels, but had constipation problems before, so this is good too.  I developed shingles on my scalp going down toward my left eye.  Very painful.
Capecitabine (Xeloda)		Lung	two 3 week sessions	Shrinkage of 10%-15%  1-01:  I had a scan yesterday, and my lung nodules grew slightly. I've been on the drug since February with a little shrinkage with the few scans, then stability for awhile. So, along with all the other drugs, this seems to work a bit a first, but after some time the cancer figures it out and fights it.	No follow up after 02-05
Capecitabine (Xeloda)		Lung, spleen, ribs, vertebrae	6 cycles: 2 wks on, 1 wk off; began 9-29-02; restarted 4-03 after lung lesions resumed growth.  Beginning 9/16/03 will begin treatment with 5-FU/Leucovorin + carboplatin; treatment cycle will be 4 weeks on/2 weeks off.	Apparent stability, with possibly some minimal shrinkage; stopped treatment for 3 months to see if stability could be maintained w/o Xeloda.  During the 5 cycles of treatment, lung mets seemed again stable, but clinically, I developed a worsening shortness of breath, so am ceasing Xeloda to begin new systemic treatment. 11-03  Passed away.	4 months, beginning 9/29/03, for 6 cycles; last cycle ended 1st week of Feb., 2003 at which time ceased treatment for 3 months to see if stability could be maintained w/o Xeloda.  4 months, beginning 4/26/03, for 5 cycles; last cycle ended 8/27/03.  Initial plans are for 6 cycles.	lung mets remain relatively stable, splenic lesion has enlarged somewhat.  Development of mets in vertebrae and ribs.  Celebrex added for hand-foot syndrome, which seems to be helping.   Growth of splenic lesion and development of bone mets while on Xeloda	Hand-foot syndrome (dry/peeling finger tips and heels of feet), fatigue, haematuria.  Celebrex (200mg/day) has virtually eliminated the hand-foot syndrome.
Capecitabine (Xeloda)		multiple lung mets in both lungs, uses an oxygen tank.	2 courses of 3 cycles, 5 g/day	No growth, some regression.  Still in group 4-05.	4 cycles only, due to side effects	8-04 comment: three and a half years ago they gave me two years to live...I've gotten worse, but I'm still here, still kicking.  1-05:  Still sings professionally	unknown
Capecitabine (Xeloda)		lymph nodes, lungs, rt. Submandibular primary with perineural invasion. 8 lung mets ~2cm, solid histology	3 courses, Ist course-2g twice/day, 2nd & 3rd course 3g/day	CT scan showed no new mets for first time ever, no growth seen.  10-05 - no further follow up, probably deceased.		Finished 3rd course 7/03.  I believe that Gleevec would be better if I can get it, because of my high C-kit and solid tumour structure (no mutation found).	1st course pretty bad, (not as bad as Skip's') 2nd/3rd courses better.
Capecitabine (Xeloda)			2150 mg po daily, He takes it for 2 weeks then off a week		started 11-05		It is a little hard on his stomach.  He has been little more tired.  Very little side effects.. so far.
Capecitabine (Xeloda)		Primary site Right sinus passage above palate  lung mets 3.5 years later		in hospice, probably deceased	post 1998	Have tried three chemo treatments: 5FU & Cisplatin(by IV);Taxol (by IV); Xeloda (by capsule).
Capecitabine (Xeloda)		lung, brain, sacrum, skull.  See Cisplatin/5-FU	I was on Xeloda for several months.	8-05:  It did not work for me.  Deceased 2-06.		I was very sick on it and would not recommend it.  I had a terrible rash that I thought was just dry skin from the weather.  I'm just now getting it  under control.  I'm no wimp and I can tell you this was no fun.  I did not lose my hair.	I did get the hand and foot syndrome.  Went away everywhere except my one foot but  that has other tumor issues playing a part.
Capecitabine (Xeloda)				Xeloda did not work for me,  Deceased 4-06	2004?	I became very ill while taking this and was laid up for about a week.	I did get very red and peeling skin on my feet only, which made walking difficult.
Capecitabine (Xeloda)		see Doxorubicin	started 4-05	Latest checkup was last week, and the blood work looked good - didn't have to take any more Procrit this time around.  So, now we continue Xeloda for another month - two weeks on, two weeks off - but I don't have to submit to weekly blood tests this time.  Next checkup - along with a lung CT - is scheduled for May 20.  7-05:  passed away.	through 5-04	7-05 update:  On May 20th, Helena had a CT scan which showed new tumors in her liver and a lower back muscle. A biopsy was performed on June 8th. This showed that the cancer has taken on  "more aggressive" characteristics (that means it is growing faster). Over the last 3 weeks, her appetite has diminished drastically and she has lost a lot of weight, she has gotten very unsteady on her feet, had dizzy spells, and felt tired and weak. She's been in a lot of pain from the tumor in her lower back muscle.	I had one 2-week cycle of Xeloda in April - the onc wanted me to have a "wash out" period in case any of the more toxic side effects might surface.  The only obvious one was fatigue - no nausea, mouth sores, or hand-foot.
Capecitabine (Xeloda)		lung		we are still not sure of any control	7-04 My wife Gina started xeloda 12 weeks ago to try and control lung mets.		She has no side effects other then hair loss but only in the area she lost it before from radiation. No mouth sores or pain in hands and feet. It does make her tired.
Capecitabine (Xeloda)				living with parents, not doing well summer '03.  See Vitaxin entry. 7-04.  Deceased 2-05.		has tried 9-10 different chemo regimens
Capecitabine (Xeloda) + Carboplatin (Paraplatin)		lungs, liver and bones	She had carboplatin infusion every three weeks and took Xeloda tablets at the same time - I'm not sure if she  took  the Xeloda continuously or whether it was for two weeks following the carboplatin	She had three cycles, but discontinued because it didn't seem to be helping.  She had five larger mets in her lungs and numerous small ones, over 30 in one lung and over 40 in the other. After the carboplatin/Xeloda, the large tumors remained the same size, but there were a lot more smaller ones. She had 4 liver mets before the treatment and one of these increased in size during treatment. She also had a lesion in her sternum and this remained the same size.	2 months in 2006 prior to 11-06		nausea, tiredness
Capecitabine (Xeloda) + Carboplatin (Paraplatin)		lung, liver, abdominal cavity				He decided to do chemo (Carboplatin and Xeloda) because of the progression of his lung mets which has been causing increasing pain, shortness of breath and the need for oxygen.
Capecitabine (Xeloda) + Carboplatin (Paraplatin)		spine, mandible, scapula, liver, brain stem - 3 on my spine, one on the hip bone, big spot on my scapula, on sternum, 2 spots on my liver and there are 3 sites that were treated with radiation before(not included here) inlcuding the primary site.	q 3 weeks	since I started using Carboplatin/Xeloda combo of chemotherapy, the size of most of the lesions have reduced. They saw this improvement just after first 2 cycles of the combo. Docs plan to do another 4 cycles, before the next scan.	starting soon 3-07	Another weird thing(not very common during chemo), my appetite has increased big time. I have been eating like a pig :-). Infact, I have put on 5 LBS in the last 3 weeks.  6-07:  I have mets in my right hip bone as well, but since I started the Carboplatin/Xeloda combo, I have no pain.	The first couple of days after the infusion of carboplatin, I felt a little tired and nausiated. In fact, I felt nauseated after every dose of xeloda, but nothing too bad. My lips get too dry now and if I dont apply something on them, then they crack. Also, there is one blister that I got on side of my toungue.
Capecitabine (Xeloda) and SU011248(Sutent), now known as Sunitinib		primary in nasopharynx, Innumerable pulmonary metastases	10-05:  1650 mg of xeloda twice a day and 50 mg of SU011248 daily	In just a few months his tumors have all started shrinking. He has had a 20% overall in Shrinkage.  No new lesions.		Sutent is an experimental drug from Pfizer.
Capecitabine (Xeloda) + experimental drug GW572016, now known as Lapatinib		head, spine, pelvis, legs, arms, ribs, liver, back		She had no new growths, but her current tumors continued to grow. 11-03 update: She has received radiation treatments and has undergone chemo using Xeloda and an experimental drug - GW572016.  She had no growth for 2 cycles (6 weeks) and then had growth and new locations after the next 2 cycles.  2-04:My wife reported pins and needles and "numbness" in her legs. Turned out there was a tumor in the sacrum pushing on her spinal cord.  Radiation stopped any increase or worsening, put she still has those feelings.  6-04  Passed away.	12 weeks	This is an experimental drug aimed at inhibiting EGFR.  We are waiting to get onto a study aimed at  VEGF which is Vascular Endo Growth Factor inhibitor drug.  11-03 update:  She is preparing for treatment with Vinorelbine (sometimes called Navelbine).  Her doc originally wanted to put her on Vinorelbine and Cisplatin, but her system could not take it now. [ VEGF medication : inhibitor of vascular endothelial growth factor, the major initiator of the angiogenic process, whereby cancer calls signal blood vessels to develop and proliferate]  Bevacizumab is an antibody that binds to VEGF and prevents it from binding to receptors on endothelial cells, inhibiting formation of new bloods vessels (angiogenesis) - a process which supports tumor growth.	Jill's side affects to Xeloda included bringing down her white cell count, hand and foot redness, dryness, and sensitivity.  Jill had red hands and feet.  They would get sore and then would peel.
Capecitabine (Xeloda) + experimental drug WX-UK1    WX-UK1 is a new class of drugs that block cancer cell invasion and migration in animal models.  (A Serine Protease Inhibitor and the Urokinase-type Plasminogen Activator (uPA), which have been shown to play a key role in metastasis and primary tumor growth of breast, gastric, colon cancer, and various other solid tumors.)		lung	Phase 1 Trial, "Study of the antiproteolytic  targeting therapy: Urokinase-plasminogen activator(uPA) inhibitor WX-UK1 in combination with Capecitabine in Advanced Malignancies"	I had to stop my clinical trial that have kept my numerous lung mets stable since I started in July, 2004.  Ten months was a good run for me. My recent ct showed some measurable growth, so I had to come off. I have to take a break for about 6 weeks then my doc suggested a new trial that is ready to start.	7-04 to 5-05.  Now considering a Phase 2 Study of GW572016 in Recurrent and/or Metastatic Adenoid Cystic Carcinoma. and other EGFR-and /or erbB2- expressing Malignant Tumors of the Salivary Glands.	7-04: I'll be admitted to the hospital for the next 2 days for close monitoring and tons of blood draws. My doc thought this would be a good time to start a trial since I have not had chemo for about 6 months. The lung tumors are again growing so I need to start something again. Fox Chase is working with a pharm. co. in Germany called Wilex AG. Hoefully I can get some stability again.	I'll let you know how the side effects are in a few weeks.
CEA (Carcinoembryonic Antigen) Vaccine		lung		Discontinued seconday to progressive disease	taken between April 2003 and June 2003
Cetuximab (Erbitux), an EGFR antibody (an inhibitor medication)		recurrance of primary, also had 3 small lung mets excised	I get an infusion of 256 mg cetuximab according to my weight once a week for one hour. To cut down eventual allergic reactions I take one pill of Fortecortin (8 mg) before the infusion and one for the night.  By short infusion I also get Ranitidin (50 mg) and Fenistil (4 mg) (which makes me quite tired, so I sleep during the cetuximab infusion) right befor the Cetuximab just to prevent from allergic reactions.	There was a big decrease of suspicious cells in my blood stream (75% by MAINTRAC).  I had no scan of my recurrence area yet.  12-06:  my recent MRI came out with positive result. No tumor is left where the recurrence has been.	4-06:  I have had my 3[rd] cycle yesterday  5-06: I have had 9 cycles of cetuximab. All in all it will be 11 cycles. The second last will be at the end of the radiation and the final one week later, because the effect of the radiation will probably last for two more weeks after the last beam.	5-06:  The more skin reactions occur, the better is the effect of Cetuximab according to studies.  And it is only important that the tumor cell has the EGFReceptor. It doesn?t matter how low or high the expression is (I was wrong earlier in a posting). Even 10% are enough.  etuximab has a bad side effect on the gastrointestinal tract. When I was a little bit too eager to do something pysically, some hours later I got cramps in my intestine that lasted for a couple of hours with diarrhoe. I missed a wonderful opera evening in the famous Semper Opera in Dresden after the break, when the side effect occured for the first time. I had a horrible time then. So be aware of this really bad side effect.  Cetuximab made me feel very tired sometimes and quite exhausted all the time. So I just had to slow down a lot.  Seldom occur:  1. Rhagaden (don't know the english term) and onychia. But I have got them on my fingertips.  2. beard growth slows down. Not bad. It saves me time in the morning. 3. Eye brows keep on growing. OK. I cut them back once a week. 4. The pustules may itch. In my case it isn't that much and does not really bother me.	4-06:  WBC and RBC increased 20% in 2 weeks.  The only side effect is an ugly acne in the face and on my chest, back, shoulders, but it doesn´t hurt.  5-06:  Severe skin reactions occured like acne in areas where I have many adepoid glands. This was mainly the face, on the head, upper part of the body and upper arms. Nearly no reactions on the legs and lower arms. The skin also turns red. I looked like a teenager and even worse!
Cetuximab (Erbitux), an EGFR antibody (an inhibitor medication)		mandible, scapula	once weekly x 5 weeks	new mets to skull base 2-07	starting 11-06 with radiation		12-06: I have had 2 infusions until now(weekly) and have 2 more to go. After the 1st one, I had high fever and bad headache the next day. About 3 days later, i started to have rash on my face, back of the neck, chest and my back.
Cetuximab (Erbitux), an EGFR antibody (an inhibitor medication)		sinus recurrence, lung mets			may start 4-2006 following IMRT, HBO, reconstructive surgery
Cisplatin / Gemcitabine (Platinol / Gemzar)		My primary site was the right maxillary sinus and pallate.  I have lung mets to both lungs, tumor growing in left orbit, in left maxillary and possibly the right temporal lobe, recurrance in right max sinus with possible met to right ear.	The first day, I stay overnight at the hospital and they give me Cisplatin and Gemcitabine.  I come home the next morning and am home for the week. Beginning the second week,  I go back to the hospital as an out patient and they give me just the gemcitabine and ferret it out for the week.  The following week I have nothing.  Then that routine starts over again.	I had to quit the chemo cocktail (Cisplatin and Gemcitabine) as it was just too toxic for my system, many unexpected serious side effects, and the acc continued to grow (so much for the chemo sensitivity assay report).    1-06 - deceased.	6-05:  I will try it for 3 periods and films will be taken.	I had done a chemo assay where I had live tissue gathered as an out-patient procedure" and fed ex'd overnight to Rational Therapeutics, a lab in Long Beach California that does the chemo death testing (aka chemo assay).  They tested my tissue against a long list of chemos and the acc was resistant to it.  They found only the one, Cisplatin was effective...and especially with a cocktail combined with gemcitibine.	This is day 5 after the day one combo of cisplatin and gemcitibine.  so far just queasy, no appetite and very tired.  drinking lots of water to keep the kidneys flushed.
Cisplatin / Gemcitabine (Platinol / Gemzar)		Lung mets 6 mo after primary diagnosis	2 wk on Gemzar 1 wk off, Gemzar+Cisplatin then repeat	No shrinkage, no growth.  Did this for a while, then decreased to every other week due to low WBC until 2/03. 2/03 there was more growth  See Docetaxel / Capecitabine.	started combo 10-04	Prior to chemo, growth too numerous to count; 9-4-01 started Gemzar. 9-26-01 hold till 10-17 due to low WBC counts.  10-21 start Gemzar and Cisplatin.
Cisplatin (Platinol), Irinotecan (Camptosar) and Mixomycin (Cycloserine?)		lung	I have this every two weeks.	1-06: I'm going to see if the first two months of chemo have worked, but to be honest, I'm not hopeful as I've seen x rays and I can't see any difference yet.  1-06: I have had to stop this chemo because of the side effects. From what I could see on the x rays, it wasn't doing much, although my oncologist is going to  check the ct scans to make sure. I am gong to have a 4 week break then he is going to try me on carboplatin and gemtimycin. [gemcitabine?]  3:07 deceased	started 12-05	I am having a mixture of Cisplatin and two other drugs for my lung mets at  the moment. I have had two cycles and it will be reviewed in Jan to see if it is having any effect.   2-06:  Oncologist is thinking about docetaxel +/or Tarceva.	I have a big problem with sickness and my hair is falling out gradually.  [I'm having problems with] sickness as nothing seems to be working and I don't think I could face any more chemo unless it does. I'm wiped out for about a week and I've lost so much weight as I'm just not eating.
Cisplatin  (Platinol)		liver, lung  Initially diagnosed with acc 1996 age 21.	6-04: I had 6 courses of chemo	doing fine 4-06.  Finished chemo in Feb.	May-Nov 2003	2003:  I am due to participate in a UK Clinical Trial of Gleevec at Christies Hospital in Manchester after a referral from my care team  as the pathologist said I have tested positive for this.
Cisplatin  (Platinol)		primary (parotid), small met in lung	used as a radiation sensitizer	lung mets may have multiplied by 8-07	Jun-05
Cisplatin  (Platinol)					x1 (pre 11-06)	I had a single round of Cisplatin and due to having nerve damage already.they still gave it to me.  The side affect I had was ringing in the ear, well I already had hearing loss from radiation therapy, surgery, and nerve damage and all the Cisplatin did was to ring my ear like it was/still is Notre Dame.	tinnitus
Cisplatin  (Platinol)		primary - parotid T1/N0/M0	I elected to have chemoradiation with 3D conformational external beam radiation of 66 Gy (33 treatments/2Gy each) with cisplatin 30 mg/m2	1-07 doing well so far.	start 5-06 - weekly for 6 weeks.	he process has not been too bad so far. Cisplatin has a high emetic (nausea & vomiting) profile, but I've received a wonderful array of drugs to prevent this. Have had only slight queasiness. Am still able to eat although I am sure this will change as I'm losing my appetite & getting some mouth soreness.	loss of appetite, fatigue, dehydration, and skin breakdown in the radiation area
Cisplatin  (Platinol)		sinus (primary)	concurrent chemo and radiation	deceased 7-06	started early 2006		The side effects are rather heavy, but we think it´s somehow working.
Cisplatin  (Platinol)			is going to start his radiation/chemo post-surgery treatment for 7 weeks. He will be getting a once a week dose of a drug called cisplatin.		starting 2-06.  7 weeks of radiation (5 days a week) with a low dose of cisplatin chemo once a week.		mucous from the radiation makes him choke during treatment.  t has been very tough for him
Cisplatin  (Platinol)		Initial treatment of minor salivary gland tumor, September, 2000.		no mets or recurrence 11-04.  Still online 7-05	4 months	After surgery and about six weeks of healing, I began a combined course of radio/chemo therapy.  My treatments left me without lymph nodes on the left side of my head and neck, loss of feeling on much of my left face and nose, partial loss of taste and smell, loss of hearing in left ear, constant ringing in both ears, TMJ problems from loss of pterygoid muscles in surgery, permanent loss  of beard on my left side, and loss of all saliva glands on the left side.	Many problems from this radio/chemo treatment.  See comments.
Cisplatin  (Platinol)		Originally I was diagnosed with a low grade polymorphous carcenoma which metasticized to my lungs.	weekly infusions	So far so good.  1-05   5-05:  Sevearal MRIs later my ole buddy is still with me but APPARENTLY not growing.   9-05 Got an MRI&CAT recently which indicated growth in the right jaw and minimal increase in lung mets . Considering Vinorelbine or another chemo.	7 weeks	I believe this chemo treatment was adminitered to me weekly during my 7 wks of radiation last spring.  Last year I was diagnosed with ACC in my right jaw area, My choices were removal of my jawbone with extensive reconstruction or chemo and radiation with the first option to follow if these did not work.	It was difficult toward the end as my mouth was laden with sores.
Docetaxel (Taxotere)		L. Parotid 1993 Lung 2003 Spine 2001bone (T1 of spine), lungs		Stopped the rapid growth of spine tumor and held it stable for awhile. Have had a 6 month break and there has been growth again with the tumor beginning to press on the spinal cord and infiltrate the bone.	late 2006	second course of chemo treatment
Docetaxel (Taxotere)		lung	35mg/m2 for four cycles	continued growth	completed in 12/02
Docetaxel (Taxotere)		liver	trial for Taxotere at an elevated dose	improvement.  after 1st cycle it stopped growth of fast-growing liver met	6 cycles 2003?	I have been thru 6 different chemo regimens including some delivered straight to the tumor via arteries.
Docetaxel + ET-743 (an experimental chemotherpay agent derived from sea squirts, called Ecteiniascidia turbinata)		lung			one cycle -  8-2002	IRB protocol 02-013 wich is a phase 1 trial studying ET-743 and docetaxel for one cycle. Treatment was stoped secondary to intolerable neutropenia in august 2002	neurtropenia (low WBC)
Docetaxel, Erlotinib (Taxotere, Tarceva)  (Erlotinib is an inhibitor, not a traditional chemo medication)  Human Epidermal Growth Factor Receptor Type 1/Epidermal Growth Factor Receptor (HER1/EGFR) tyrosine kinase inhibitor		I entered into the trial because  my lung mets (discovered in 2001) had shown more rapid increase in size and  numbers recently and I began experiencing shortness of breath.	The chemotherapy involved infusions of Docataxel every 3 weeks with the  infusions followed over the next 15 days with daily dosages of an experimental  drug, OSI 774 (Tarceva).  Tarceva has just been approved within the last  month for treatment of non-small cell lung cancer.	I had weekly blood tests and CT scans every 6 weeks to monitor the  treatment.  I just received the results of the latest CT scan which showed  an overall shrinkage of the lung tumors ranging from about 20% to almost 50% for  some of the tumors and no new tumors developed during the treatment.	I just completed a Phase I Clinical Trial course of chemotherapy at UC  Davis Medical Center in Sacramento, CA.  I was in  the trial from August-December 2005.	Studies have shown that the Docataxel loses most of its efficacy after 6  cycles and the effects become too toxic so I am finished with the  infusions.  But my oncologist and I agreed that I will continue with the  OSI for awhile, again monitored by CT scans every 6 weeks, to see if that  experimental drug can result in more shrinkage or at least keep the existing  tumors stable.   Aside from the initial infection which was rough, the side effects were  unpleasant but tolerable and my oncologist and I are very pleased with the  positive results. Most of the participants in the clinical trial were lung  cancer patients and I was the only ACC patient in the trial.  I will report  back to the group after the next CT scan on whether the OSI alone is  effective.  Because OSI has only been approved for lung cancer so far, most  insurance companies would not cover the costs for an ACC patient at this point  and it costs about $2000 a month.  But maybe if it proves effective, it can  be approved for ACC or other cancers eventually.	The most serious side effect from the treatment was a drop in the white  blood cell count making a person more prone to infections.  I developed a  serious infection during the first cycle and spent 6 days in the hospital, and  developed two subsequent infections but not as severe as the original  infection.  Other side effects were an acne-like rash on the chest, upper back, face  and scalp, loss of hair, mouth sores, and fatigue.  By the end of the 6  cycles of treatment, the fatigue was fairly overwhelming.
Docetaxel, Cipslatin (Taxotere, Platinol)		lung mets and reoccurance on his left optical nerve and cheek, lymph nodes	6 Rounds of 3 weeks each	75% lymph node reduction size in some of his nodes	11//2006-3-2007	his ACC is solid and very aggressive and he has new reoccurances every few months
Docetaxel, Cisplatin, 5-FU (Taxotere, platinol, fluorouracil)		lung		mets reduced by 50%, no growth.  Overall reduction of 60%	11-99 to 2-00		Very difficult
Docetaxel, Carboplatin (Taxotere, Paraplatin)		She has numerous growing tumors in her lungs, the largest is approximately 4-5 cm.	She is scheduled to have three injections on wed, thurs and fri for her blood. Then she has 2 weeks off before it starts again.  She is scheduled to have a scan after the second round of treatment.	7-05:  just finished her third round. Yesterday she had a scan and the initial report is that her lung mets are stable and have not grown.  She is feeling somewhat better; less coughing, wheezing, and breathing more comfortably, however she is still very fatigued. 10-05:  The doctor advised continuing the treatment hoping for shrinkage.  She continued with another six treatments and recently had a scan which showed continuing stability but no shrinkage.  The last (12th)chemo treatment was stopped because she had a reaction to it.  The doctor advised discontinuing this combination.	start 5-05  Her mets were very aggressive in the three months previous to this treatment, so no growth would certainly be a success.  Her ACC has always been growing rapidly and doesn't seem to go through indolent periods as many of  the ACC patients on  this site, so we certainly have to attribute the slow down to the chemo treatment and not the nature of the disease itself.	see Paclitaxel / carboplatin entry.  She is now symtomatic, experiencing coughing, wheezing, and fatigue upon exertion.  Since she started this Chemo, she says that she is experiencing some pain in her lungs, but nothing that she can't tolerate. She is unsure if it is the disease or the chemo causing the pain.  7-05:  Her doctor was very encouraged and wants her to continue with the carboplatin, hoping to get some shrinkage of the mets if the final report confirms the initial findings.	She is tolerating the treatment well.  The first one was difficult as she had an allergic reaction to the taxol which the doctor then changed to another synthetic taxol which she then tolerated.  The third treatment was easier than the first two and the recovery period seems shorter.  10-05: She is still complaining of fatigue, but she seems to have rebounded more than she gives herself credit for.  She is back to work 3-4 days per week.
Docetaxel, Carboplatin (Taxotere, Paraplatin)		He has been battling ACC for 9 years. Last year the disease took a turn for the worse. It infiltrated his liver, spleen and brain.	[heavy dose]	8-05:  The chemo zapped most everything but 8 months later, the Acc returned with a vengeance.   Deceased 2-06			He was losing weight rapidly. During the chemo he was able to sustain his weight by drinking Boost, Ensure, and I juiced his some fruit and veggie drinks with my juicer. He lost all his hair but......he made it through.
Docetaxel, Carboplatin (Taxotere, Paraplatin)		lungs, scalp	once a week for 6 weeks - off 2 weeks, repeat.  Starting 2-04	4-04: I was at the oncologist's office yesterday and they advised me that there will be no more treatments.  The lung mets are still growing.  I only tried as I was hoping for a miracle.  My mets are many - they cannot even give me a number - but the one in the lower left lung is 3.5 CM and the one in the right lung is 2.5 CM. They have grown 1CM from other scan taken in December.  I just had CT Scans of chest, abdomen and pelvis area.  Shows mets all over but if they bother me will then take action.  5-04: I have mets in lungs, scalp, spine.  I did try Chemo - tried to reduce mets in lungs and scalp - didn't work.	2 months	First operation 8-2001, second 5-2002.  The Doctors said nothing else can be done at this point except Chemo to try and stablize the growth of multiple mets in lungs. The ones on my scalp are sore and appear to be getting bigger so who knows about the lungs so guess at this point have to try something.  3-04: I have many bumps on my scalp - They just started popping up like weeds and as far as I can count - there are 13.  Some days they hurt more than other days - pinching, just feel irritated - No treatment has been discussed with my oncologist as he said let us wait and see - I am not giving up - but am getting tired feeling lousy most of the time.Since the mets in my lungs are growing the Doctor is trying me on chemo - feels they may help with the scalp mets also.  Will see.	I did have hair loss, my hair is very thin to begin with so it shows my scalp but I use a hat.  Other effects, fatigue but it really hit me bad the first treatment, after that it was manageable.  Right now I have some ankle swelling but they said it could be from the Chemo.
Cyclophosphamide, Doxorubicin,  Cisplatin (Cytoxan, Adriamycin, Platinol)		lung, spine	every 3 weeks for 5 months	1. tried twice, first time small improvement, second time no improvement	tried in 1995 and 1997.  1998 went to 5FU treatment.	This is known as the CAP regimen.  Published studies suggest response rates with ACC are 40-50% with a response duration of 3-7 months.  The addition of 5FU to CAP in 17 patients with advanced salivary gland carcinoma produced a 50 percent response rate with a median duration of 8 months; this regimen was associated with signifcant toxicity.
Cyclophosphamide, Doxorubicin,  Cisplatin (Cytoxan, Adriamycin, Platinol)		inoperable tumors in the submandibular gland and also in the floor of his mouth.  He also has 6 lung mets.	every 28 days for 6 cycles.		started 11-06
Cyclophosphamide, Doxorubicin,  Cisplatin (Cytoxan, Adriamycin, Platinol)				still on list 8-07	starting 6-06
Cyclophosphamide, Doxorubicin,  Cisplatin (Cytoxan, Adriamycin, Platinol)			starting 1-06	deceased 4-06			I ended up in hospital totally wiped from the Chemo.
Cyclophosphamide, Doxorubicin,  Cisplatin (Cytoxan, Adriamycin, Platinol)		primary submandibular 1998 lung, liver	I am to have 6 x 4 weekly treatments if I respond to them.	3-06:  my mets have got bigger and there are more of them, now in my bones, as well as lungs and liver.	started 12-05	I am told this is patlliative care and there is not a cure.  Also surgery is not an option becasue of the extent of the tumour.
Cyclophosphamide, Doxorubicin,  Cisplatin (Cytoxan, Adriamycin, Platinol)			she has been thru 4 treatments of this. The first three were in 1998 September, October and November exactly 4 weeks apart.	1-99:  Her results have been on nodule reduced in size (1 cm) no further growth of others and the fluid is gone in her lungs.		Because they had some effect she has decided to try three more treatments.  1-99:  She is now suffering tremendous chest pains.	She has lost all of her hair and has been very sick after treatments
Cyclophosphamide, Doxorubicin, Cisplatin (Cytoxan and Adriamycin/Doxil, and Platinol)				kept things stable for about a year.		has tried 9-10 different regimens
Cyclophosphamide, Doxorubicin, Cisplatin (Cytoxan and Adriamycin/Doxil, Platinol) aka CAP protocol		bronchus  [after several thorocenteses (Nov-Jan), one pleurocentesis (Jan), and a stent placement in my right bronchus (April)]	IV infusions	expired 9-05	taking 8-05		lots of fatigue, hair loss, sore mouth, wt. loss, etc.
Cyclophosphamide, Doxorubicin,  Cisplatin (Cytoxan, Adriamycin, Platinol)				I am on a combination of adriamcyn, cytoxin and cisplatin since 10-97 and have remained stable.	1997-1999	I drink two quarts of water a day. I feel this helps push it through quickly."	I tolerate it very well.
Cyclophosphamide, Doxorubicin,  Cisplatin (Cytoxan, Adriamycin, Platinol)		left hip.  Also the bone scan found a very small spot on my right hip and 6th right rib.	starting 10-04 after radiation; It would be one day does and wait three weeks... hopefully 6 sessions but again that depens on the response and me.		6-05 update:  I did 3 rounds of Cis-Platin with Navelbine.
Erlotinib (Tarceva)  Human Epidermal Growth Factor Receptor Type 1/Epidermal Growth Factor Receptor (HER1/EGFR) tyrosine kinase inhibitor		lungs and liver (see Iressa entry for history)		1-06:  She will now be starting a round of Gemcitabine which is a chemo that  is supposed to be well tolerated (no hair loss or nausea) and has  shown some efficacy on ACC according to our new oncologist. Deceased 4-07	on Tarceva 10-05	The  advantage for her is that her stomach is now having a hard time  related to a partial bowel obstruction.  This chemo would be given  via IV instead of the tough effects the other oral medications have had on her stomach	has a bowel obstruction, also takes high doses of narcotic pain relievers
Erlotinib (Tarceva)  Human Epidermal Growth Factor Receptor Type 1/Epidermal Growth Factor Receptor (HER1/EGFR) tyrosine kinase inhibitor		inoperable tumors - praimary in nasopharynx, carotid and perneural spread; lung, bone, and liver mets		treated quite successfully (he actually just stopped taking the Tarceva because of additional mets requiring another chemotherapy.)  There were too many tumors and too much necrosis to even get a definitive lung biopsy without collapsing each of the lungs.	some time inbetween 2005-2007	The Principal Insurance Group picked up the Tarceva for two years.  (The docs stopped the tx but we had no indication that they wouldn't have continued paying had the docs not d/ced it.)
Erlotinib (Tarceva)  Human Epidermal Growth Factor Receptor Type 1/Epidermal Growth Factor Receptor (HER1/EGFR) tyrosine kinase inhibitor		lung		I feel her cough and breathlessness has worsened, so feel it has not helped the lung mets.  Lung mets continued to increase in number and grow rapidly	started 11-06, discontinued 12-06		She suffered from nausea which was hard to control and has lost quite a lot of weight.
Erlotinib (Tarceva)  Human Epidermal Growth Factor Receptor Type 1/Epidermal Growth Factor Receptor (HER1/EGFR) tyrosine kinase inhibitor		lung, brain, sacrum, skull.  See Cisplatin/5-FU / Capecitabine		Deceased 2-06			5-05:  Right now my face is the only part of my body without a  rash and the only place that I don't itch!  I've been told that once the  rash clears up that I can go back on Tarceva and not have a problem.
Erlotinib (Tarceva)  Human Epidermal Growth Factor Receptor Type 1/Epidermal Growth Factor Receptor (HER1/EGFR) tyrosine kinase inhibitor		lung			7-07: My doctor just wrote me a perscription of Tarceva in hopes that will slow down the growth in my lung mets.
Erlotinib (Tarceva)  Human Epidermal Growth Factor Receptor Type 1/Epidermal Growth Factor Receptor (HER1/EGFR) tyrosine kinase inhibitor		submandibular 1997; lung mets, 2000; mets to leg muscle, 2005		continued growth	started 9-06, 6 weeks of treatments	The horrible rash that developed in the second week had subsided, and Stan was feeling pretty good after six-weeks on the drug.  Unfortunately, a CT scan revealed further growth of his lung tumors, and Tarceva was discontinued.	After two weeks, Stan has a significant rash on his chest, back and face.  Some diarrhea.  More results and side-effects to be reported.
Erlotinib (Tarceva)  Human Epidermal Growth Factor Receptor Type 1/Epidermal Growth Factor Receptor (HER1/EGFR) tyrosine kinase inhibitor		tongue, lungs				5-06 My oncologist is suggesting thatTarceva may be the best way for me to go as my tumor at the base of my tongue seems to continue to grow and I am having more and more difficulty eating.
Erlotinib (Tarceva)  Human Epidermal Growth Factor Receptor Type 1/Epidermal Growth Factor Receptor (HER1/EGFR) tyrosine kinase inhibitor		sinus recurrence, lung mets			may start 4-2006 following IMRT
Erlotinib (Tarceva)  Human Epidermal Growth Factor Receptor Type 1/Epidermal Growth Factor Receptor (HER1/EGFR) tyrosine kinase inhibitor		lung	5-05:  I remain on oral doses (150 mg) of Tarceva.  I take it for 15 days, off a week, and then resume  5-06:  I received my latest CT scan results and found that I had experienced new growth of existing tumors (although no new tumors were detected) so I have just been taken off Tarceva.	My follow up CT scans have shown no new growth in the size or numbers of the lung mets.  So while the shrinkage has not continued, the mets are stable with no growth since last August.  And my shortness of breath has improved.   8-05 update:  I'm still taking Tarceva (after finishing up a phase I Clinical Trial in Dec. 2004 that also included Docetaxol.  I had some shrinkage of lung mets during the trial and there has been no growth since Aug. 2004.	8-04 to present (2-06). 2-06 update:  I have remained on Tarceva and there has been no growth of the lung mets, and my last CT scan even showed some slight shirinkage again.  4-06:  I have CT scans every 12 weeks as part of the clinical trial protocol and my use will be continued if there is any new growth of the lung mets.	See Docetaxel/erlotinib entry.  The original clinical trial included infusions every 3 weeks of Docetaxel.  That resulted in some good shrinkage.  But the Docataxel becomes too toxic after awhile so my oncologist recommending continuing only with the Tarceva.  5-05:  I have been on Tarceva since August and my face is the most affected by the rash. I had some fairly extreme itchiness and redness with my scalp earlier in the treatment but that seems to have subsided. I still get itch on my arms and legs but seem to tolerate it better now.	The only side effects I have noted from the Tarceva is that it tends to dry the skin and I get acne on my face that lasts about 10 days during the dosage.  On some cycles I also get some irritation to my scalp (like a very mild sunburn) and occasional mouth sores.
Fluorouracil (5-FU)				no response	short	see cisplatin / vinorelbine
Fluorouracil (5-FU)				kept things stable for a year
Fluorouracil (5-FU) & Leucovorin (Wellcovorin)		primary: low grade polymorphous carcenoma, mets to lungs, tumor on jaw.	I started on fluorouracil and leucovorin for the next 6 weeks	deceased 3-06	started 11-05
Fluorouracil (5-FU)		Lung, spine	weekly infusions	Lung mets progressed at the same rate	8 mo in 1998
Fluorouracil (5-FU)		primary site - submandibular (1997),  subcutaneous mets (2000)	4-04 5-FU continuous infusion for 21 days	deceased 5-04	3 weeks	I also had low dosage radiation to th brain.  I am back home now and can walk with some difficulty, and am fatigued, and do not feel as sharp as I was prior to this latest event.My breathing is weekend, however I am walking on a limited basis but nowhere near normal. I did lose 30 lbs during my hospital stay.  The doctors have said that the energy should begin coming back after the chem treatment is over and my weight comes back.
Gemcitabine (Gemzar)		lungs and liver (see Iressa entry for history)		7-06:  "not much luck", will try Sutent next  Deceased 4-07	started 1-06, discontinued 6-06	Just for the record, Gleevec is the only drug thus far that has had any effect on Gina's ACC. It also seemed to hold things in check for about 18 months before it began to grow again. Since Gleevec, Gina has also tried Iressa and Tarceva with no results.
Gemcitabine & Carboplatin (Gemzar & Paraplatin)				deceased 3-07, don't know if she ever was given this regimen	will start after Easter 2006.  If that doesn't work, then it's Tarceva - if the hospital or my local Health Authority will fund it.
Gemcitabine & Carboplatin (Gemzar & Paraplatin)		lung		no shrinkage but no growth.  First scan in over a year with no growth.	2 mo trial Jul 2000-may 2001
Carboplatin		lung mets and reoccurance on his left optical nerve and cheek, lymph nodes	3 rounds (9 weeks)	We are happy with the results because his tumors were growing so fast and spreading so quickly.  He hasn't had any new metasteses in the past 6 months.	in the middle of this regimen 3-07	After the next 9 weeks we are going to go on a maintenance plan of Erbitux to see if that will hold the tumors at bay.	It has been difficult because his hands and feet are now almost completely numb.
Carboplatin and Methotrexate (Paraplatin and MTX)		lung	begin 12-7-03	deceased 5-05		also being treated with hypothermia: While the chemotherapy drugs are being administered she will receive one day local hypothermia, for lung mets, the next day full body hypothermia for 3-4 days or 5-6 days. Then in January she will begin, once again, the cycle of Cis-carboplatin and Methotrexat and  perhaps hypothermia, I cannot remember if this is definitive or not, and then an additional drug Arglabin will be administered intravenously for two weeks.  Jolanta in Italy has been told there is nothing left to do.  Her lung function test came back with very, very distressing news and she has begun to lose weight.  Needless to say I am very worried; yet I still hold on to hope that maybe, just maybe this time this combination of drugs will work.
GM-CSF (sargramostim / Leukine) -  a "colony stimulating factor"  - not a chemo med per se but may inhibit cancer growth		lung, bone	7-05:  Did this  treatment a few years ago	Not successful after 4 months.  Expired 9-06		Dr. Scott Okuno, Mayo in Rochester, Oregon Health & Science University
Cisplatin and Fluorouracil (platinol and 5-FU)		lung, diag. 2/02.  I have multiple tumors outside the lungs (chest cavity, daiphragm, pericardium), but only 5 lung mets that are measured and tracked on each scan.  The 5 are all right around 3 cm. in area, down from 4-6 cm. in area before the cisplatin and 5-FU regimen.	21 d cycle, 6 cycles total; day 1 cisplatin 4 day pump of 5FU day 2 cisplatin day 3 cisplatin day 4 remove pump repeat on day 21 On day one the pump was hooked up to my port and I wore it for 96 hrs.  On day 5, it was disconnected.  It wasn't hard getting around, I wore the pump in a fanny pack.	The results I had from the combined treatment of the 5-FU and the cisplatin were very good. Initially tumor decreased in size by 50%, 33% shrinkage after one cycle. There wasn't any more shrinkage during the 4 remaining cycles. It's been 6 months since I finished the last cycle and Ct scans done 3/1 showed that there has been some further shrinkage.  Maybe this trend is just the path that my ACC is in, but anytime there is shrinkage I think that's really good results!  Update 9-03:  After the initial 33% shrinkage after the first cycle, everything has remained stable.  My Dr. thinks there may be yet more shrinkage.  Stopped this regimen 10-03.  Update 7-04: I've had stable scans for the past 9 months.  I'm still taking Celebrex and Femara (letrazole).	6 sessions, 1 mo apart starting 3rd cycle 8/03.  Update 9-03: This Cisplatin/5FU is really beating me up.  I have finished 4 out of the 6 projected cycles.  I've gone to every 4 weeks instead of the every 3 weeks we started at.  I just wasn't recovering in time for the next cycle.  Not using 3-04.	previously treated with Gleevec and Paclitaxel/Carboplatin.  I'm having scans after each cycle.  Update 3-04: I stopped in Oct. and all has been stable or better ever since.  Both rounds of chemo were very tough, I was even told by one homeopath that if the cancer didn't kill me, the chemo would!!  But, I survived both and if pressed would say I'd do it again.  Hope this helps in some way. 3-04 comment: I underwent 5 rounds of cisplatin and 5-FU this summer.  One of the biggest side effects were the terrible sores I got in my mouth.  It was bad enough that I couldn't speak and even trying to drink a glass of water was excruciating.  The drs. attributed it to the 5-FU.  One Dr. told me that he'd heard it described as trying to hold 5 razor blades in your mouth.  As bad as it was at the time.would I do it again??? You betcha!!  My CT scans have all shown stable ever since.  The best thing for the mouth sores was the 1% viscous xylocaine that I would swish around in my mouth and then spit out.  Sometimes as often as every 15 min. or so.  Magic Mouthwash also helped.	Not as bad as Carboplatin and Paclitaxel.  Nausea, mouth sores (pretty bad), hair shedding.  Side effects are the nausea and vomiting (which I particularly don't deal with well).  I do take Zofran and Emend which I'm sure take the edge off.  I also get incredible mouth sores and blisters which preclude my being able to eat, drink, and worst of all... speak.
Cisplatin and Fluorouracil (platinol and 5-FU)			Cisplatin & 5FU by five days of in-hospital infustion every month.	After 4th session, tumor in head had reduced about 50%.  After 5th session tumor stopped reacting and slowly resumed growth.	1995-1996	After 5th session suffered severe side effects -- kidney failure then staph infection in spine. Treatment was suspended for six months then resumed for three more sessions. No effect on tumor, which oncologist determined had become resistant to chemo.	see comment
Cisplatin and Fluorouracil (platinol and 5-FU)		lung, brain mets 3-04  primary site:  subglottic trachea 1979  tx: laryngectomy and radiation    mets:right lung 1998 - tx: pneumonectomy; left lung 2001 - tx: Gleevec; sacrum  2002, tx:  radiation;ribs   2002; brain 2004 & skull - tx: craniotomy and chemo (cisplatin and 5FU)	4-04 I am now going through four cycles of Cisplatin and 5-FU	5-04 I just finsihed round two of Cisplatin and 5FU.  I'm having scans on the 28th and get the results on June 2nd. 6-04 update: I've had two of four scheduled rounds of Cisplatin and 5FU.  Most recent scans show that largest lung tumor went from 1.8 cm to 1.4 cm.  That's a 21% decrease.  For the most part the reports say stable disease.  The bone scan showed one lesion on the skull was slightly larger.  The sacrum and ribs were stable, the brain was normal and lung either smaller or stable.  I begin round three next week.  Deceased 2-06	28 day cycle, did three cycles (had planned for four but opted out of treatment; see Xeloda)	Had a successful craniotomy for a one cm tumor in the right frontal lobe.  I discontinued Gleevec after the brain mets were discovered.   I had been on Gleevec for 19 months. Gleevec kept me stable for over a year and a half.  I have no regrets. This cocktail is very difficult.  I was admitted for uncontrolled nausea and dehydration on days 5 through 7.  I'm two, almost three, weeks out now and feeling human again.  It's a 28 day cycle so I begin again on May 10th.  Nancy Kenny did the same cocktail and had great results.  I keep her in mind when things are tough.  7-04: I've just finished three of four scheduled cycles of Cisplatin and 5FU.  Grueling.  I'm not doing round four.  The third round nearly did me in.  That is why my onc wants to switch me to Xeloda.  Among other things, I had an awful time with mouth sores and thrush and am dreading having to deal with it again with Xeloda, a derivative of 5FU.  If it works though, it'll be worth it.	This is not a regime for the faint hearted.  It's very difficult.  Nausea, vomitting and mouth sores are serious side effects.
Cisplatin and Fluorouracil (platinol and 5-FU)		see Taxotere above (liver)	5 sessions	after 5th session, tumor stopped reacting and slowly resumed growth		Cisplatin and 5FU combinations may provide meaningful sympytom control in patients with advanced salivary acc.  In one study with 11 patients, this regimen produced symptom control in 7, but no patient had more than a 50% reduction in tumor size.
Cisplatin, Fluorouracil, and Carboplatin (platinol, 5-FU, paraplatin)		growth in unresected primary (ethymoid sinus)		2006: now a "soft spot" appears in neck lymph node on scan	2003: I was supposed to have 6 cycles but only got through 3	I think if I have the chemo again I will make sure I look after myself better.	I developed a blook clot at the the end of the hickman catheter line that was feeding the drugs into me and I was extremely ill
MMP inhibitor  AG3340 (Agouron).  Now bought by Pfizer and not available.		primary maxillary 1989, unsuccessful resection, neutron xrt 1989, IMRT 1996.  Now lung mets, vision problems, local recurrence	2.5 mg BID	after stopping MMP inhibitor, the tumor had recurred locally as well, but was growing much faster than it ever had before.  Current thinking is that the MMP inhibition had kept the tumor at least partially in check and, once the inhibition was removed, the tumor grew uncharacteristically fast.	1997-2004	on an experimental MMP inhibitor in a clinical trial starting in '97 and on compassionate release of that compound from 2000 through 2004.  At that point, the company formally abandoned the drug and our supply ran our in Oct. 2004.  Almost immediately, Jan developed two lung mets and began having vision and facial problems.	neuropathy
Paclitaxel (Taxol)				no response,  deceased 12-04	short	see cisplatin /vinorelbine
Paclitaxel (Taxol)		lung			started 5-07	I just started Taxol 5 weeks ago but had som prob, now i'm back on it.
Paclitaxel (Taxol)			by half hour infusion every three weeks.  Six sessions.	No effect on tumor, treatment suspended after six sessions.	1998
Paclitaxel (Taxol)				4-06 - paclitaxel did not work  3-07 deceased	starting soon 2-06
Paclitaxel (Taxol)				8-05:  It has proven very successful.  Deceased 2-06			He has not lost his hair this round [see doxorubicin / carboplatin] but then the chemo is not as potent as the first round.
Paclitaxel (Taxol)			fractionated therapy (low dose / frequent administration)  90mg per week for three weeks, then one week rest.		x1 treatment - discontinued due to allergy		allergic reaction
Paclitaxel (Taxol)			fractionated therapy (low dose / frequent administration)	After the first month, I was breathing easier and feeling stronger. This week my oncologist confirmed the improvement with a CT scan. My doctor showed my husband and I two computer screens side by side displaying this CT scan on one and the last CT scan on the other. He said the largest tumor had been 7cm, now reduced to 5cm. That's a reduction of 29%. Another tumor also looks remarkably smaller. The remaining bit of airspace on the left side looked foggy in June, but now shows dark, clear space.  Deceased 6-07	started 8-06.  The second CT in December showed my tumors shrunk another 5-10% smaller.	I will continue these four-week cycles until the tumors stop shrinking or the side effects become unbearable. So far, the side effects have been minimal.  My oncologist has already tried this approach on two other ACC patients. One responded favorably, but the other did not. He believes the fractionated dose is a better approach for treating ACC because ACC drinks the poison (chemo) more slowly than other cancers.  6-07:  I have had success with a low-dose treatment using Taxol. I began the treatment in August, 2006. The first CT scan after two months of treatment showed that my lung mets had shrunk an average of 30%. The second CT in December showed my tumors shrunk another 5-10% smaller.	The side effects have been mild and very tolerable.
Paclitaxel (Taxol)		lung	I have finished two series of 3 weekly infusions of Taxol followed by one week of no chemo in an attempt to stop growth of lung mets.   Taxol was given with a large dose of steroid to offset possible allergic reaction.		start 3-05		I had no nausea.  The steroid gave me a lot of energy the second day, followed by two days when I did little more than sleep.  I am bothered by increasingly strong neuropathy in both feet.
Paclitaxel (Taxol)				7-99: stabilized my tumor growth			Made me sick
Paclitaxel (Taxol)				2 cycles - no effect.  Deceased 6-03	3 mo.  6-03 deceased.	Paclitaxel does not appear to be active in ACC, but appears active in adenocarcinoma and mucoepidermoid carcinoma.
Paclitaxel, Carboplatin (Taxol, Paraplatin)				kept things stable for about a year.		has tried 9-10 different chemo regimens
Paclitaxel, Carboplatin (Taxol, Paraplatin)		lung			started 8-5-05, deceased 10-05
Paclitaxel, Carboplatin (Taxol, Paraplatin)			weekly x8 weeks	"stable for a year", 5-04 update: I just had a PET/CT body scan and wonderful news. There is no cancer detected in any other part of my body. I have the film and it does not show the detail of a regular scan, but they said it can detect tumor as small as 1/2 centimeter. There were none!!  update 10-04 mets to r mastoid and ear area.  The latest MRI detected a small tumor deeply imbedded near skull base. It is inoperable. Ire-read my previous response 1st Gamma Knife was in 2001	started 2002.  Still active in group 3-06.	hospital said he was terminal, has had remission for 2 yrs; has had gamma knife treatments.  3-06 update:  They have just found a "lesion" on my spine and have done MRI's twice. I am Going to Moffitt Cancer Center in Tampa Tomorrow to get the results.
Paclitaxol, Carboplatin (Taxol, Platinol)		recurrance of primary, also had 3 small lung mets excised		9-05: The recurrence shrunk very much. When the therapy finishes I will get a MRI-scan to see how much is left. That will be in about 6 weeks. 11-05: There was only one response on the recurrence near my left ear after the first cycle, but now the chemo has ended, no shrinkage was measurable.  (no growth, no shrinkage)	4 cycles with 3 -4 weeks in between.	On the other hand there was no growth, but the ACC recurrence might have been inactive since may till november. I had ACC in the left parotid gland in 2000 (T4) and 3 lung mets in 2005 that were removed.  7-07:  I was on carboplatin and taxol without having checked the sensivity for these drugs. The chemo agents had no effect at all after three cycles.[originally listed as cisplatin/taxol]
Paclitaxel, Carboplatin (Taxol, Paraplatin)		She has numerous growing tumors in her lungs, the largest is approximately 4-5 cm.	Joanne started the carboplatin w/taxol last Monday.  She took the carboplatin but had a severe reaction to the taxol. It was slowed down, but the reaction continued so they had to stop administering it.	5-05: switch to another form of taxol (probably docetaxel (Taxotere))  1-06:  Subsequent scans showed that her rapidly growing lung metastases had slowed and that there was no new growth.  This was significant as her tumors were very aggressive.  She stopped the chemo for one month's rest and then began a new chemo regimen of navelbine in late October.	5-05 X 1 treatment.  9-05:  She finished two rounds of six treatments each round, of carboplatin with taxol last September.  (round two of this chemo?)	She was sent to a cardiologist immediately because they thought it was having an negative effect on her heart.  Turns out that there was no damage.	The carboplatin last Monday was difficult.  She was nauseous, fatigued, and basically in bed until today, but she started to feel better and was up and about.
Paclitaxel, Carboplatin (Taxol, Paraplatin)		3-06:  found mets in spine, liver	every 3 weeks for 9 weeks	8-06:  After 6 rounds of Taxol & Carboplatin The Oncologist has told me that the cancer is almost completely gone from my liver and spine. I had a PET scan after the 6th round. They did find a spot on my femur bone, I don't know if it was there before or not.   10-06:  Initially I had very good results with TAXOL. But after going off TAXOL the cancer all came back stronger.  I was then taken off all chemotherapy and give 5 shots of radiation to my femur bone.	4-06 - 6-06. see bevacizumab listing.	also getting pamidronate (Aredia)    see bevacizumab listing 6-06 In june I took a break from chemotherapy.  But continued the Aredia and Avastin.In October a new pet scan showed the tumors had all grown back to almost the same as they had been in March with a new one on my femur bone. 8-06:  I will have 5 radiation treatments to my femur bone.	I do not seem to have any adverse side effects. Just a few days of fatigue, and then I'm feeling good again.
Paclitaxel, Carboplatin (Taxol, Paraplatin)		skull base, sinus, TG nerve	Carboplatin, 50 mg, and Paclitaxel, 30 mg.  Each round consisted of three treatments, three weeks apart.	The first round of infusions was in Nov-Dec 2000, then he returned to M.D.Anderson for MRI in January 2001. The MRI showed no significant change in the disease so he had the second round was in Feb-April 2001. He returned to M.D.A. in April 2001 for MRI, and it showed some increase in disease, so the chemo was discontinued.	2000-2001	During the second round, he began acupuncture to treat his fatigue, and when the chemo was discontinued, he began Chinese herbs. When he returned to MDA for follow-up in August 2001, the disease seemed to be smaller. First we had ever heard such news.	He usually had about 1-3 days of nausea after each treatment, then returned to work (as a self-employed carpenter) within a week of each treatment.
Paclitaxel, Carboplatin (Taxol, Paraplatin)		trachea (primary)	low dose chemo for 8 wks while simultaneously getting radiation 5 days a week during the same 8 weeks.  The radiation dosage was maxed out over the treatment period.	shrinkage 50% after 1st wk, now in remission.	8 weeks	I had ACC in the subglottic region of the trachea, just below the vocal chords.  After an initial emergency surgery to clear my airway, I opted for chemo-radiation for 8 weeks at Dana-Farber (low-dose chemo: taxol and carboplatin and max. radiation).	The first 5 weeks, the side effects were mild, and the last 3 weeks and the 2-3 weeks beyond the end of treatment were tough, but tolerable.
Paclitaxel, Carboplatin (Taxol, Paraplatin)		primary - right submandibular triangle extending into the floor of the mouth.  He found out he also had mets in his lungs.		2007:  he has been troubled by mouth discomfort, difficulty speaking and  changes in the mouth.	started Dec 2004, continued 6 months		He still has feet and leg discomfort  especially at night.
Paclitaxel, Carboplatin (Taxol, Paraplatin)		Lungs, diagnosed 2-02.  Primary was in trachea (1998)	started 3-02, given 6 cycles	seemed to stabilize everything for about 6 months	5 cycles in Summer '02	See Cisplatin and 5 FU	side effects were pretty tough
Paclitaxel, Carboplatin (Taxol, Paraplatin)		mets: inoperable and located behind the max. sinus, on his brain stem leading up to, but not invading, the skull base.  During the radiation treatment planning scans, they discovered another tumor on his hard palette, which they now think is the primary site.  He's having both areas radiated.	Taxol, 44 mg and carboplatin 1.5 AUC.	5-05:  In 2 weeks he is going to have the second of his 6-month scans. It's been 1 year since his treatment ended. The first 6-mo scan showed that the tumor did shrink with the treatment and that it was not actively growing at that time. Nor had there been any mets in the region or elsewhere.   The tingling nerve sensations on his face he had before the treatment are gone. I assume that since the tumor shrunk it doesn't interfere with his nerves as much. Or maybe the nerves are just dead from the treatment.	5-04 My husband is into the 3rd week of a 7 week course.   5-05:  Back to the treatment: It was clear that the chemotherapy did indeed radiosensitize his cells. The chemo stopped two weeks before the radiation. Before it stopped, Richard's face was burnt red, very swollen, and starting ooze puss. After it stopped and there was only radiation, the swelling and redness went way down, and puss went away. Since we can never re-treat the same area with radiation again, I think it was a good idea to make the cells as radiosensitized as possible.	I wanted to share an "experimental" treatment that my husband is receiving. His ACC was first diagnosed 6 weeks ago, after he sought treatment for numb/tingling cheek and nose as well as sinus stuffiness which he first experienced in the fall (2003).   He is undergoing both pRoton (not pHoton) radiation and low-dose chemotherapy, simultaneously for 7 weeks. The radiation is the primary treatment. The experimental part is that the chemo is being used as a radiosensitizer (making the cancer cells more suseptible to the radiation). In addition to the radiosensitivity, he hopes that the chemo "may eliminate or delay occurance of mets."  Interestingly, there is another man from Florida who has ACC in the same inoperable location and is coming up for the same double treatment, lagging my husband by a couple of weeks.	He's basically lost hearing on his left side and has very little sense of taste.  His sinuses on the side of his face where the radiation was are completely blocked. The tissue was very damaged from the treatment. There is no drainage on that side, so his "nose" and ear are always clogged.  When exercising, his left eye drips water on his face because the ducts are blocked there also. In June he is having surgery to open up the sinuses.
Paclitaxel, Carboplatin, Bevacizumab (Taxol, Paraplatin, Avastin) An inhibitor + traditional chemo regimen				4-06:  My oncologist has given me the options of stopping chemo altogether now to see if this protocol has put it to sleep, OR to continue every 3 weeks with taxol and avastin OR to continue with just the avastin every 3 weeks.	1-06:  starting carboplatin, paclitaxol, and avastin.	I was dx in '98, with primary site in the lower trachea. Tracheal resection was done at Mass General followed by radiation.  Lung mets dx in 2002, followed by 1st round of chemo (5 cycles).  2nd round of chemo done in late 2003 (5 cycles).  The last chemo I had was in 2003.  At that time I was on cisplatin and 5-FU.  That, plus going on Femara (one of the Tomixifen breed of drugs) has held everything pretty stable since then.  Since late last spring my Pulmonary Function Tests have all gradually worsened and my shortness of breath has reached the point of my oncologist and pulmonologist both wanting me on portable O2.	I didn't have much of a problem with nausea or vomiting.  I mostly dealt with that achy, run over by a bus feeling.  I did have some incredible chest and back pain.  I haven't had any appetite either.  4-06:  Allergic reaction to carboplatin, ceased treatment
Paclitaxel, Carboplatin, Bevacizumab (Taxol, Paraplatin, Avastin) An inhibitor + traditional chemo regimen		lung, brain		1-06: I have been out of it due to a spine met that has put me in a wheelchair but I recently went back to Memorial Sloan Kettering and Dana Farber for consultations.  They both said my cancer was unusually aggressive and that since it had metastasized all over my only option appears to be chemo.  3-06: not doing well, on hospice.	started 10-05	also taking Avastin.  New recommendations 1-06: These recomendations are based on what I have already been on.  Dana Farber suggested I try: 1) Avastin/Adriamician and Oxaliplatin; 2) Xeloda with Cytoxan, 3) Temodar and Philemide (?).  Memorial Sloan just suggested single drugs showing promise:  1) 5FU; 2) Mitoxantrone; 3) Anti Male Hormones; 4) Androgen Receptor [Antagonists?] [same as #3?]
Paclitaxel (Taxol), Hydrea (Hydroxyurea), and Fluorouracil (5-FU)		maxillary / sinus	Hydrea (pill taken 3X/week), Paxol (Mondays), and 5-FU (taken continuously all week).  The radiation will be 2x/day as well.		starting 1-06.  I will have 5 weeks of the chemo/radiation starting Jan 8 on a week-on week-off basis.	This is actually a follow-up to surgery (full-maxillectomy, removal of max sinus, ethmoid sinus, etc) I had done exactly one month ago today.	2-06:  The biggest problem I've had is eating b/c I've developed severe mucusitis in my mouth from the chemo
Paclitaxol, Cisplatin (Taxol, Platinol)		recurrance of primary, also had 3 small lung mets excised		9-05: The recurrence shrunk very much. When the therapy finishes I will get a MRI-scan to see how much is left. That will be in about 6 weeks. 11-05: There was only one response on the recurrence near my left ear after the first cycle, but now the chemo has ended, no shrinkage was measurable.  (no growth, no shrinkage)	4 cycles with 3 -4 weeks in between.	On the other hand there was no growth, but the ACC recurrence might have been inactive since may till november. I had ACC in the left parotid gland in 2000 (T4) and 3 lung mets in 2005 that were removed.  7-07:  I was on carboplatin and taxol without having checked the sensivity for these drugs. The chemo agents had no effect at all after three cycles.[originally listed as cisplatin/taxol]
Paclitaxel, Carboplatin, Ifosfamide (Taxol, Paraplatin, Ifosfamide)		L. Parotid 1993 Lung 2003 Spine 2001bone (T1 of spine), lungs	I had 3 days of treatment every 3 weeks. 4 sessions total.	MRI scans show no growth since March, did not shrink the tumors in lungs or spine.	started 3-06	All well until March 2006 when it appeared to grow aggressively. Had chemo at Emory Winship Cancer Center in Atlanta- Onc. Gave me a combo of 3 drugs-Taxol,Carboplatin, Ifosfamide. MRI scans show no growth since March, did not shrink the tumors in lungs or spine. Onc. is anticipating a repeat of chemo in future,maybe within a year.
Paclitaxol, Ifosfamide, Cisplatin (Taxol, Ifosfamide, and Platinol)		Primary nasopharynx 2-2003, received surgery and neutron XRT.  8-04 mets to lungs.	I have completed two rounds of chemotherapy with a combination of drugs called TIPs (Taxol, Ifosfamide, and Platinol).  I receive these drugs over the course of three days, and then I have two and a half weeks to rest before I begin the cycle again.	I just received the results of my most recent CT scan yesterday and this chemo is shrinking the tumors.  They have shrunk 20% after 2 cycles.	6 weeks	I am also making fresh juice from organic fruits and vegetables to drink each day, and exercising.  I think that helps to keep my energy level up.
Vitaxin [a humanized monoclonal antibody that targets integrins, induced the apoptosis of immature vascular endothelial cells]  (An inhibitor, not a chemo drug)			[Phase 1 trial by Medimmune]	stable x 2 years  2-05:  Deceased.		Medimmune clinical trial.  The company that makes Vitaxin, Medimmune, didn't seem to think it was effective, but he did.
Cisplatin, Halicondrin (B analog E7389)			On week one I take both drugs (on one day), and only Halichonidin once a week for the following two weeks, followed by a week off.	After two 28 day cycles, I had a CT scan last week which showed about a 20-25% reduction in my lung tumors, and no new growths.  9-07:  After two months I had shrinkage of the lung mets ranging from about 20-25%; after four months I had additional shrinkage ranging from 13-18%	started 6-07	phase 1 trial.  My CT scan also showed I was no longer experiencing any fluid build-up in the lining of my lungs which had been a rapidly increasing problem before starting this chemotherapy and had required frequent drainage (thoracentesis).  I had been experiencing regular increases in the size and numbers of the lung tumors before starting this clinical trial.  Phase I clinical trial with only about 30 people participating nationwide. I do not know if UC Davis Cancer Center researchers will publish results. The study is actually being led by researchers at the City of Hope Medical Center, located in Southern California.	The side effects have been hair thinning, lowering of my white blood cell and neutrophil counts, very slight nausea and moderate fatigue.  9-07: I have had problems with low white blood cell counts and had to miss last week's treatment because of that.
Cisplatin, Vinorelbine (Platinol, Navelbine)		lung, brain mets (being radiated)	Low dose once a week, two weeks on one week off	I was in a lot of pain with the lung mets and after 5 days of the first chemo the pain is completely gone.  The plan is probably to stay on this for 2 or 3 cycles the most and then go to a more of an anti-angeogensis, hormone cocktail.  10-05: Now taking Taxol and carboplatin plus an anti-angiogenesis drug, Tarceva.	started 9-05.  10-05: I had 5 mets to the brain, and underwent full brain radiation.  I finished over a week ago and am going to take a scan next week to see if they have been inactivated.  While this chemo got rid of all my pain during the first cycle it seemed almost to rebound the second cycle and after a scan showing some growth I ended that regimen.	also taking Celebrex and a variety of nutritional supplements (pecta sol, EDA/DHA, GLA (borage oil), Iddole-3-Carbinole.
Cisplatin, Vinorelbine (Platinol, Navelbine)					prior to 7-07		He experienced nausea and was taking Zofran and Kytril to try to settle his stomach.
Cisplatin, Vinorelbine (Platinol, Navelbine)		lung.  Has had a lung resection.  Also tumor in kidney, and in my vertebrae L2	usual dose of vinorelbine is 25 mg/m2 days 1 and 8, every 3 weeks and usual dose of cisplatin is 80 mg/m2 day 1	no positive or negative results	4-02 lung mets growing, considering chemo  10-02 not on chemo any more.  Does not seem to be active in group any more since 10-02, possibly deceased.	Vinorelbine appears to be a moderately active agent in patients with advance recurrent diseasem especially when combined with cisplatin.  In one phase II trial, 36 patients with advanced disease received vinorelbine  + cisplatin or vinorelbine alone.  Combination therapy was associated with a significantly higher complete (19 vs 0%) and overall response rate (44 vs 20%), and a greater liklihood of survival beyone 1 year (38 vs 5%).	the side effects are too much for me..Side effects are the normal - nausea, vomiting, and makes you very tired, you dont lose your hair, but gets thinned out.
Cisplatin, Vinorelbine (Platinol, Navelbine)		left hip.  Also the bone scan found a very small spot on my right hip and 6th right rib.	I did 3 rounds of Cis-Platin with Navelbine.	I handled the drugs well but now improvements with scans my Liver scans were increasing though. Then on Feb 2nd we tried Doxorubicin (Adriamycin).	started 10-04, continued through Feb 05
Cisplatin, Vinorelbine (Platinol, Navelbine)				Chemo stopped because of side effects.  No negative or positive results.  Presumed deceased.			Nausea, vomiting, fatigue, hair loss
Cisplatin, Vinorelbine (Platinol, Navelbine)		spine, liver  6-04: Unfortunately, the cancer kept spreading into her hips, spine, liver, clavicle, head and now lungs.		Scans in Jan.04 revealed growth in size of liver mets, with additional mets appearing. The mets in her spine have increased in size as well. She was offered another variety of treatment, but has declined at this time. She is very weak and experiencing constant pain in her back.   7-04  Inga passed away.	Inga started Chemo in Dec 03 and has discontinued.	She had surgery at Oregon Health and Science University in Portland Oregon in Aug. 03 Began IMRT radiation of primary site in October 03. During IMRT she was experiencing severe back pain and new scan found mets in spine causing fracture in T-9.  Began radiation to spine.  We are in the process of sending Inga's records to University of Washington for input and suggestions for treatment. Inga's current physician believes her liver mets will begin to produce symptoms by June of this year.	She experienced fatigue, hair loss and loss of appetite while receiving her chemo treatment. Also had to have blood transfusion during treatment.
Cisplatin, Vinorelbine (Platinol, Navelbine)		head, spine, pelvis, legs, arms, ribs, liver, back		Growth of tumor.  Deceased 6-04		see comments on Xeloda / experimental drug . 1-04:  We went to MD Anderson and the head of the head and neck department advised us to consider using experimental drugs versus the very harsh treatment of Cisplatin and Navelbine.  We were on the experimental drugs for 12 weeks. The first 6 weeks seemed to be ok, but after 12 there was distinct evidence of growth.  We then tried Navelbine by itself - because the docs were afraid she would not be able to handle the Cisplatin due to her weak immune system (she had to have radiation to control pain and maintain motor control).  The Navelbine really wiped her out and we stopped after 6 weeks of treatment.  There have been some who have used this combination of drugs and seemed to have some success.  Right now, we are using Iressa.  We will know how well it is working at the end of February (04).
Cisplatin, Vinorelbine (Platinol, Navelbine)			schedule of 2 mondays on, one off.  I was taking vinoralbine and cisplatin once a week.	Since I started the chemo, my cancer has stopped growing and spreading.  2-04 update: My cancer is completely inactive. I've stopped chemo for now and I feel great.  I'm getting another scan this month just to see how it's going but I'm pretty sure I'll stay in remission.	July 2003 to 12-03	I had a PET scan in June and again in July.  I've been on chemo ever since.  I'm having another scan on 12-8 to see if it's actually reversing the mets.  I tried MD Anderson, U of M - they said they could do nothing for me.  I really can't recommend Parker Hughes enough.	The side effects so far have been almost nothing.  I haven't even lost my hair.  I get tired, but that's no big deal.  Other than that, I'm tolerating this very well.
Cisplatin, Vinorelbine (Platinol, Navelbine)		Intial site:- parotid, mets: lungs, bones, possibly spleen and lymph nodes; radiation to lungs and vertebrae	7-04: cisplatin and navelbine- in his second round (One week of cisplatin and navelbine, next week, just navelbine, a week off, then begin the cycle again.)	This chemo worked in the first round, showing significant decrease in size and number of tumors.  It then stopped working and we changed to Iressa- after two weeks, the diease continued to progress, so we went on to another chemo, Taxol.  That didn't work, so we tried 5-FU.  He kept getting sicker and the doctors wanted to stop treatment, but we asked for Gleevac.  He had been on that for two weeks when he passed away.   Deceased 12-04	He didn't have his primary site (left parotid) radiated, because by the time we got the diagnosis, his lungs were the primary concern.  He had neutron radiation to his left lung, also to his vertebrea.  (They were worried thet his bone mets might cause paralysis).  This chemo worked in the first round, showing significant decrease in size and number of tumors.  It then stopped working.	One of the issues we have run into is with his veins.  He has lost over 40 pounds in 3 months and they have a hard time finding his veins.  The nurses want to put in a port.  He is lifting weights to improve his veins, but does not want another surgery.  The navolbine is very dangerous if it gets on the skin, and the nurses are very nervous about hurting josh as they push it in.  He may give in if they find that the chemo is working and choose to continue with more treatments.	The side effects have been rather mild.  Lots of fatigue, some depression and agitation, minor nausea.  They key for Josh was to figure out which nausea meds were helping and which were giving him worse side effects.
Cisplatin, Vinorelbine (Platinol, Navelbine)		salivary gland primary site, local spread to tongue, neck areas.  Now in lung, sternum, spinal bone, liver, kidney, ribs	21 day cycle.  Start cisplatin day 1, add navelbine day 8.  Received loading dose of Cisplatin on day 1 and thereafter noted large improvement in symptoms.  Navelbine held on first cycle (11-03) due to low blood counts.  Received full regimen cycle 2 (12-31-03) and cycle 3 (1-04).	seems to be shrinking the tumors.  Waiting for scan results.  Update 2-04: Maurice got a good result from his recent CT-SCAN. Since his last CT-SCAN  March - 2003 and the recent one, last week, his spots on his lungs went from 60 spots down to 50. One spot from the 2003 results was measuring at  3.2 down to 2.4. But the doctor said that  they measure it differently,with a different calculation. With that the measurement was from 28 to 10.  Between the doctor and my husband they decided to keep him on the Navelbine for about 3 months and see what happens. He will be getting the treatment once a week.  No further follow up, probably deceased.	Diagnosed July 2000.  Started chemo 11-03.  Now on 3rd cycle, awaiting results of 1st scan.	post aggressive surgery and neutron treatment at Seattle for original tumor (neck/tongue). Has a PEG tube.  Started chemo 11-03 due to multiple mets and chronic rib pain (on painkillers for 3 months before treatment).  After 1 day chemo, pain completely gone.  Cycle three went much better, pretreatment with hydration and anti-nausea medication.  Some numbness in fingers and toes.	cycle 1 - nausea, hair loss, low blood counts.  Cycle 2 - terrible - horrible nausea and vomiting x 1 wk, nosebleed x 1 wk.  Severe dehydration caused fainting.  Pre-medication and hydration prevented ANY nausea and dehydration problems.  Now notices cold extremities, including cheeks and top of head.  Continually wrapped in blankets.  Numbness in fingers and toes.
Vinorelbine (Navelbine)		submandibular 1997; lung mets, 2000; mets to leg muscle, 2005		An x-ray indicated growth of the lung mets, and treatments were discontinued. 9-06 will start Tarceva.	weekly infusions for 4 weeks in July and August (2006)	has also been treated with lots of radiation, including stereotactic	Side effects were manageable, at first.  No nausea to speak of.  General fatigue, and some numbness in fingers and toes.  By the 5th week, Stan was really noticing the loss of feeling in his toes, and the doctor gave him a week off.
Vinorelbine (Navelbine)		numerous lung mets that have been slowing growing and steadily multiplying (the 10 largest were about 1.5 cm on my last scan.	once a week for 2 months  (usual dose is 30 mg/m2 weekly)  10-04:  The dosage of this last round was reduced from 60 to 50 mg. due to low-grade fevers and body aches.   I have an every other week regimen where I can pretty much depend on receiving treatments and reduce the amount of time and expense of weekly visits.	My CT scan on 7/6/04 showed stable disease after 7 Navelbine (Vinorelbine) treatments.  I am continuing weekly treatments (as blood work allows) for another couple of months when we will test again.  10-04 update:  I just received the results of my latest CT scan- the disease remains stable after another 8 treatments of Navelbine.  9-05 update:  I was on Navelbine alone for 8 mos. at which time my Ct scans showed  an increase in number and size of my lung mets.	Total of 8 months.  Started 4-29-04  I will receive Navelbine once a week for  2 months to treat multiple nodules in both lungs.   4-05:  I was on Navelbine starting last May and had stable disease until January when my lung mets showed an increase in size and number.  I then started Arimidex (the new Tamoxifen hormone treatment used primarily for breast cancer patients).  Last week I went for my three month scan and the disease has stabilized again!	At this point  my doctor feels it is a good idea to begin trying chemos to try and get some success while we have the time to "experiment".  I went for a second opinion at Sloan Kettering and the doctor also felt it would be prudent to begin something and suggested Navelbine as a good place to begin.  ACC Bartholin gland dx 8/2000; surgery and radiation Lung mets  dx 6/2002	My side effects: fatigue, some tingling in the fingers and toes, body aches and low grade fever, thinning hair- not much so far, and recently muscle spasms.  All of these symptoms have been minor and very tolerable.  10-04:  I feel much better and the very minimal hair loss I experienced with the higher dose has stopped.
Vinorelbine (Navelbine)		She has numerous growing tumors in her lungs, the largest is approximately 4-5 cm.		1-06:  Although she is ill from the chemo, she appears less breathless and able to do more than before.  A recent chest x-ray at the lung doctor showed clearer lungs than the one that was taken last May.  We are not sure what this means  but we are not jumping to any conclusions until she has the CT/pet scan again when the treatments are done.	started 10-05.  2-06 update:  She had a scan last week which showed a 50% reduction in the mets in the left lung.  Her oncologist also said that  they achieved resolution of the mets in the right lung.  The Doctor is continuning the navelbine chemo for another 4-6 treatments if Joanne can sustain it.	This chemo has been much more difficult for her to tolerate. Several treatments have been delayed as her blood counts have been too low for the treatment to be done, but she has persevered.	low WBC.  She has been having a tough time with the treatments- no appetite, no energy, nausea, weight loss, the usual
Vinorelbine (Navelbine)			total of 20 treatments, 41 mg dose, one time per week.  She did take a few short breaks during that time period.	We had very good results the first 3 months where I noted the following at the time:"Tumors had all reduced by some margin.  No new nodes present.  Four larger nodes had reduced by close to 40-50%.  Two smaller ones reduced by 16-21%". Those were my rough estimates based on reading the CT results, but there was definite tumor reduction.The second 3 months resulted in no further shrinkage and an actual resumption in slow growth in some tumors, so we stopped the treatment at that point - renewed growth after six months.   Deceased 6-07	6 months in 2001	began taking enzymes during this chemo, probably around the 4th or 5th treatment.  Would take the following with every meal: Twin Labs Super Enzyme Caps - Max Strength (500 mg Pancreatin, 324 mg Betain Hydrochloride, 130 mg Pepsin, 130 mg Ox Bile, 250 mg Bromelain (F/ Pineapple) and 250 mg Papain (F/ papaya).  500 mg Bromelain caps"  She only took these enzymes during the first part of the treatment.  Because of the nausea during the second three months she wasn't taking them then. I've always wondered if the combination of enzymes and Navelbine had the positive response in that first half of treatment, and so included the information here.	The side effects were not too severe for the most part and she would just feel kind of like she had the flu the rest of that day, go to sleep, and wake up feeling fairly well the next day.  She did have more nausea during the second 3 months of treatment that was a little more troublesome but not too severe.
Docetaxel, Filgrastim (Taxotere, G-CSF/Neupogen)				Deceased.
Gemcitabine / Cisplatin (Gemzar/Platinol)				no growths, no shrinkage until last scan	9/01 to 1/03
Docetaxel / Capecitabine (Taxotere/Xeloda)		multiple bone mets, liver	3 cycles of every 3 week infusions.	12-06: Study shows significant decreased intensity and size of the large abdominal mass and multiple liver metastases. 2.  Unchantged bone metastatic foci in the left scapula, right acetabulum and proximal femur, T12-L2. 3.  The previously seen abnormalities in the left ilium, bilateral sacrum and the left femur and left chest have decreased in uptake. NO NEW SPOTS ANYWHERE.	starting 10-06.  12-06:  I will continue the chemo for 3 more time.  1 every three weeks.  I am also continuing the alternative treatment along side of the chemo.  3-07:  I have had 7 rounds of this therapy	Beginning of March I had extreme pain in my lower back and with an MRI dicovered a compressions fracture in my lower spine.  So AM now having 5 rounds of radiation to relieve the pressure on my spine.	Extreme mouth sores, peeling hands and face, extreme tiredeness
Docetaxel / Capecitabine (Taxotere/Xeloda)		lung, back, S1 nerve in back	3-11-03 started Taxotere 40 mg 3-19 Taxotere 60 mg 4-24 Taxotere 40 mg 5-4 added Xeloda 2 po bid x 3 d then 3 po bid x 2 wks, then Taxotere dose.  Has been doing 2 weeks Xeloda, 1 week Taxotere 30 mg 7-24 Taxotere up to 40 mg, stopped 8/13	Some shrinkage of  several nodules, MRI shows new mass in back. Going to start radiation, followed by chemo.  No further follow up, probably deceased.	3/03 to 8/03, completed radiation therapy for nerve met 9-22-03.	Variation in dosing due to low WBC	I have seen a pain specialist for burning, discomfort, tingling, muscle cramping, etc.  He had tried to inject the nerve and muscle area and I have also had a nerve block.
Docetaxel cocktail (taxotere cocktail)		lungs, liver		Tumors continued to grow.  Deceased 5-04
Gefitinib (Iressa)  (a tyrosine kinase inhibitor, not a traditional chemo)		lung		My father had been using Iressa for 4 months. In his last scan ,1 month ago,  his lung mets were stables but there was a suspicious zone in his liver.  3-05:  We'll know in two days if its still doing any good to him.   Take into account that we dont know for sure if Iressa is responsible for his stable disease.  6-05:  The last scan showed some growth in his remaining lung. Some suspected points in the liver are no longer there. We have decided to keep using iressa for other 3 months. My father has been using it  for almost a year now.	.		She had only a few side effects- the most annoying was the diarrhea.  He still has rash, redness and acne. For the first 3 months there was no side effects and then suddenly all the skin side-effects. His oncologist was surprised because usually the side effects appear earlier and disappear faster.
Gefitinib (Iressa)  (a tyrosine kinase inhibitor, not a traditional chemo)				no response.  Deceased 12-04	2 weeks	see cisplatin / navelbine
Gefitinib (Iressa)  (a tyrosine kinase inhibitor, not a traditional chemo)		lungs (numerous small stable mets) and around original 1973 site (larynx and parathyroid)		She appeared to be doing well until the second set of scans. After four months on Iressa the small tumors in her lungs did not change but the tumor at her tracheal stoma had grown. Because of this change she has been taken off the study.  2-05  Deceased	4 months	My mom was on the Iressa study through MD Anderson.
Gefitinib (Iressa)  (a tyrosine kinase inhibitor, not a traditional chemo)		Lungs, liver		Growth in lung mets primary & liver  5-04 Deceased	3 mo
Gefitinib (Iressa)  (a tyrosine kinase inhibitor, not a traditional chemo)		esophagus, lungs	3 wks, then decreased dose to half a day	Stable, will have scans week of 8/15.  10-03 - reports that esophageal and lung tumors have continued to grow a bit and there are now "suspicious" spots on liver	I decided to go on it in June since my esophageal tumor had grown 60% since April.	Hospitalized for 5 d for acute respiratory distress; no problems with edema or pulm. Congestion since decreasing dose.  Who knows how much larger the tumors would be without Iressa?  I have decided to stay on it one more month.  My health is very poor; I cannot speak or swallow, my vision is deteriorating, and I have a lot of shortness of breath.  I am still on the 24 hour feeding tube.	Diarrhea, acute respiratory distress, fluid in lungs, hands and feet peeling
Gefitinib (Iressa)  (a tyrosine kinase inhibitor, not a traditional chemo)		lung, chest wall	250 mg daily	11-03 Rick has experienced a lot of growth in his lung tumors over the past three months.  8-05: not doing well  7-07 - deceased	started 7/03	started on Celebrex 11-03 - The doctor talked about the difficulties of treating ACC and the struggles between doing nothing when you have no symptoms or subjecting oneself to the side effects associated with any form of toxic (chemo) treatment.  Anyway, he prescribed Celebrex for Rick.  He indicated that Celebrex is being used to slow or stop the formation of polyps.  He said that the formation process of polyps is a lot like ACC, basically slow growing.	None yet
Gefitinib (Iressa)  (a tyrosine kinase inhibitor, not a traditional chemo)		head, spine, pelvis, legs, arms, ribs, liver, back		Results were mixed, with stoppage of growth in some areas and growth in others.  6-04 Deceased	8 weeks	After 8 weeks, she was taken off of it because of it increasing radiation damage to her lungs. Keep the faith and go ahead and try it.  Things work differently with all patients.	She tolerated it very well, with little or no side effects.
Gefitinib (Iressa)  (a tyrosine kinase inhibitor, not a traditional chemo)		skull base, sinus, TG nerve, lungs	250 mg per day	did not stop tumor growth.  Lung mets continued to progress and tumor has invaded brain stem. 3-06: deceased	Dec 04-Aug 05.  March 05 update:  no significance change, so he continued Iressa. His followup in August 2005 showed significant increase and the Iressa was discontinued.		He had no significant side effect from Iressa--some rash on his back, but very very slight, like heat rash.
Gefitinib (Iressa)  (a tyrosine kinase inhibitor, not a traditional chemo)		lung	1 tablet daily	Lung mets continued to grow	10-04 - 1-05	my doctor and I determined that Iressa might  just work for me.  It is very expensive, but thus far there have been  NO side effects.  I have taken it (one pill a day) for one month and  will have a ct scan after completing three months.  Previous  infusions of doxil resulted in difficult side effects and continued growth  of lung  mets.
Gefitinib (Iressa)  (a tyrosine kinase inhibitor, not a traditional chemo)		Mets to lungs and liver.  Gina's tumors were a bit larger in Gina's last CT scans, x-rays, and MRI's. Her pain has also tripled during the past six months and has since gone on higher doses of MS Contin and Nortriptyline.	Our oncologist has started Gina on 250 mgs of Iressa, and she will begin next week after giving herself a break from Gleevec.	8-04 We just saw our oncologist for her two month check up with a CT scan and our latest news is no new growth and her bloodwork is much more into the "normal" range than three or four months ago. Her pain is much improved and she is taking less morphine.  For us, this is very good news as they had found a couple new tumors just before taking Gina off of Gleevec.  Deceased 4-07	planned for 6 months.  2-05:  Gina is about to go off of Iressa as her tumors have shown some growth while she has been on it and her pain level has more than doubled in the last few months.	She had an original 8cm tumor found on her sacrum five years ago. Since that time she has had a debulking procedure and radiation.  Three years ago she had a reoccurance with mets to her lungs and to her liver. 4-04: She has just gone off Gleevec for the time being.  Last month, Gina's oncologist had her tumor block tested for EGFR.  It came back positive, and it was suggested that she try Erbitux, which would be given by infusion weekly. Rather than try the infusion, I knew that Iressa also targeted EGFR and was in pill form. (Gina has a thing about needles)  She is now going without Gleevec for a couple of weeks to flush out her system before going on Iressa.
Gefitinib (Iressa)  (a tyrosine kinase inhibitor, not a traditional chemo)		lung, stoma, original site was larynx	Mom was getting the Iressa for all four months without a break.  I'm not sure of the amount but it was one pill a day. She was on a study with MD Anderson and  she was getting the drug.	After waiting, she is now in a study with Iressa.  Her Dr has high hopes due to what he has seen with others. We just have high hopes. As Mom progresses, I will let you know how well the Iressa is doing.  9-04 update: She started Iressa 3 months ago.  They only do the scans every 2 months and at that time there was no change.  The tumor we can see does not appear to have changed visibly. They will keep her on the Iressa since the side-effects are slight.  2-05: tumor continued to grow.  Returned to surgery, deceased due to complications.		Jennie, my mother, was diagnosed with ACC at the age of 68.  The Drs believe the original site was her larynx in 1973 at the age of 40.  She was cancer free until 2001 when a tumor was found in her lung. The Dr removed that section of lung and we thought all was well. Later that year she noticed a growth inside her stoma. The Dr thought it was scar tissue but realzed in surgery it was a tumor. After testing they decided it was ACC. Mom came to MD Anderson where they discovered many small tumors in her lungs along with one large tumor around the stoma. A small course of radiation followed with great results. Of course, not much could be done for all the small tumors in the lungs. This year another tumor began to be seen on the other side of her stoma.	The side effects appear to be few and only a nuisance.  She has had few side-effects: diarrhea about once a week, which is controlled with Imodium.  Another side effect I forgot to mention, she lost her appetite.
Gefitinib (Iressa)  (a tyrosine kinase inhibitor, not a traditional chemo)		ear?		I just finished my second bottle, according to the doctor I won't see results until I finish the third bottle.   4-05  Not in contact with the group any more.  Probably deceased.	started about 6-04.  The doctor at MD Anderson said that I need three months of Iressa.	However I almost died at the end of june [04} that is when I did my head operation and that is what saved my life.  [had gamma knife surgery in Florida]  after March 2004 most of my memory has gone, after my operation in 26th of June this year a lot of my memory has came back and I am working at the rest of it.
Cyclophosphamide (Cytoxan)		none	Oral	no recurrence - 40-year survivor	during initial radiation tx	Clean margins, no mets (ever!)
Cyclophosphamide (Cytoxan)		lung	25 mg twice daily	likely deceased	3-05: She has been fighting ACC for over 27 years. She has gone through 7 lung surgeries and is now on oxygen all the time.	takes as part of "chemo cocktail"
Cyclophosphamide (Cytoxan)		lungs		deceased 6-03		Patient deceased 6/03
Cyclophosphamide, Doxorubicin (Cytoxan and Adriamycin/Doxil)				small shrinkage			horrendous side effects
Cyclophosphamide, Doxorubicin (Cytoxan and Adriamycin/Doxil)			Adriamycin-Cytoxan on one day infusion.  Given the results our oncologist in Greece advised that he should escalate to higher doses .  Dr Amrein from Boston agreed and he has reached the limits 100mg/m2 for the next 4 cycles.	10-98:  After three months late October 1998 a new ct scan made us smile at last and gave us hope and streangth to fight further more.The results showed regression of the size and number of modules and complete disappearance of the pleural liquid.  All doctors agreed that it was a very good sign.  follow up:  Significant tumor reduction in number andsize.  Total disappearance of pleural liquid in both lungs.		Side effects became severe,nausea present just before we live the hospital and for three days despite strong antiemetics andreas is taking. Anorexia,pain in the chest periodically the first 3 days,low white blood cell[1000]on the 12th day after the treatment.and of course total hair loss.  The last cycle was on the 15th of dec,next week with new years entry [more lucky I hope]a new ct scan for reevaluation will be done.Of course i will keep you updated about the results.	the side effects of this treatment which are severe for the first 2 days.
Cyclophosphamide, Doxorubicin (Cytoxan and Adriamycin/Doxil)		lung, head	C 100 mg po daily, A 30 mg iv weekly (doxorubicin is dosed based on body mass)  5-04: Im currently taking doxil (slow release adriamycin and its very tolerable for me).	3:05:  I have mets in my head and both lungs which are monitored by CT, MRI and chest x-rays. 6-05:  still on list.   7-06 deceased		1-04: As of last friday I decided to stop my chemotherapy treatments. I have been on adriamycin/cytoxan for 7 months. During these months I have felt pretty terrible not having the nausea under control for most of the treatments....I had a pretty good remedy for a bit...but I really hated the spaced-out feeling of the marinol(marajuana pill) but it did work pretty well with the zofran together. My body has had the maximum dose of adria...after it the heart can be damaged. I had a MUGGA scan and my heart is working great. I had a ct scan of the chest and the lung mets are stable with a slight decrease in one node after 7 months. My head/ear tumor is stable but I have had an increased numbness in my head to the right side. My oncologist wanted me to try doxil(another chemo) given once a month with cytoxan taken oraly every day. I did try it and then realized after the fact that I just cant take anymore right now.	I had terrible side effects NAUSEA!! After 3 months trial and error I found the marajuana pills to be a LIFESAVER!! I take Zofran with Marinol and I am so much better No vomiting in 4 weeks now :)  1-04: I will continue Zometa for prevention of bone mets and regular scans every 3 months. Chemo is the worst thing I have ever felt...and I have been through some tough things. I think that if Im gonna do that to my body its got to work better than it was.
Doxorubicin (Adriamycin/Doxil)		lung, head, ear, pons (see above)	Zometa IV....protect from bone mets, Doxil chemo every 4 weeks IV, prevacid... acid reflux due to chemo, oxycontin for ear pain, zofran to aid nausea from chemo, vitamin B/Folic acid to prevent hand and foot syndrome from chemo(doxil chemo deposits in these areas)	7-06 deceased		6-01 As per my scans of wednesday the tumors are still there in the head and ear, they have not grown since April scans that showed 2mm growth pressing on the "pons" of the brainstem which controls my breathing and swallowing. The lung tumors have not changed since nov Ct scans. So it looks like the doxil chemo might be stabilizing the disease but hasnt shrunk it at this point but Im only into the second treatment which I had IV yesterday at the Seattle Cancer Care Alliance.    6-04: I usually get darbo [for anemia], but I have also had epo too. I get these when my cells fall below a certain level when my labs are checked. For low white cells I was given neupogen [G-CSF] that I had to inject into my tummy ,upper arm, or upper leg when my white cells were low....all this caused by chemo.	The doxil kinda messes with taste and I take pills to help with acid reflux and nausea, but Im not having any probs at the moment.  doxil keeps your hair in place too....no baldness which is nice.
Doxorubicin (Adriamycin/Doxil)		lung	started feb 03, low dose.	continued growth.  5-05: I've had stable disease since Oct. of 2003. My CT scans are showing stable; I've just had a normal bone scan and pretty normal pulmonary function tests. I do have unexplained shortness of breath and chest achiness in the area of the rib cage. My oncologist thinks I may have disease progression on a cellular level that isn't showing up on any of the other tests I've had.  5-05: Considering Avastin		went on to Gleevec in May 2003, when I had a 50% growth.  In May I began a five cycle regimen of cisplatin and 5-FU, which immediately shrunk my tumors by about 33%.  (see above).  Dr Rodolpho Bordini; Georgia Cancer Specialist, Marietta, GA.  Also sees Dr. Tom Lynch at MGH, Boston, MA.   8-05:  just seems to be on Femara
Doxorubicin (Adriamycin/Doxil)					starting soon 7-07	Liposomal doxorubicin
Doxorubicin (Adriamycin/Doxil)		bony mets to the spine, ribs and hip			starting 7-07	They have been radiating each spot (especially the ones that have been causing him considerable pain).	gas pains
Doxorubicin (Adriamycin/Doxil)		lung	50mg/m2 every four weeks for two cycles	continued growth	completed 8/12/03
Doxorubicin (Adriamycin/Doxil)		lung		7-04: today had a chest X-ray for comparison to previous films.  The radiologist indicated "no significant change."  My oncologist felt that in addition to no additional growth, some tumors had shrunk.  So I am to continue with this regimen for the near future.  9-04 update: After 4 weeks of infusions I took 2 weeks off, then continued with 3 weeks of increased strength Doxil.  A scan a week later showed continued growth.	I have completed four weeks of Doxil  4-05 now on Taxol	10-04 now tring Iressa instead.	The only side effect I have had is a moderate amount  of fatigue, but that is certainly tolerable.  9-04: the side effects began.  Sore mouth, red rash mostly on my legs, heartburn--all tolerable.  But my feet are covered with painful blisters, especially my toes and between my toes.  They are taking several weeks to heal and meantime I cannot wear shoes without a lot of pain.
Doxorubicin (Adriamycin/Doxil)		see Vinorelbine.  Bone (hip, rib), liver	We did three sessions.	We also did another CT to have a benchmark for the Adriamcyn on Feb 9 and it showed that lesions in my liver went (from the Jan 26t CT ) went from 16 /x13m to 39 X30 mm and 21X23mm to 32 X 44mm. But they also found three new lesion with the largest measurement being around 11 mm.	started 2-05, had until 4-05	I tried Adriamcyin until April and then started to have more pain in my hips.... This time a MRI and bone scan showed that there was an increase in lesions in my hips, L-1 (pinching nerve and causing me pain so I can not walk now without cane) and small increase in liver ( sorry don't have the measurements right now). I also now had new lesion on my L4 & L5 vertebrae and another rib.... Back to radiation and I stopped Chemo.
Doxorubicin (Adriamycin/Doxil)		lung	The dosage will be given every three weeks	I did have a CT before my radiation and after my two cycles of Adriamycin and there was no growth in my lung mets.	9-05 - 11-05: I started with Adriamycin in Sept and had only two treatments when my doctors and I decided to try some radiation on my lung mets that are located just outside my lung lining pressing against my ribs.	I think the Adriamycin was working because my lung mets had been increase by 25% every 3 months prior for the last year.  2-06 - pain from lung mets abated after cyber knife radiation.
Cyclophosphamide, 5-FU, Doxorubicin (Cytoxan, Fluorouracil, Adriamycin/Doxil)		Lung	C 500mg/m,5-FU 600 mg/m2, D 50 mg/m2	Lymph nodes back to normal size, lungs almost clear.   7-03  Deceased	10/02 to 12/02		Hair loss, fluish, fatigue
Cyclophosphamide, 5-FU, Doxorubicin, (Cytoxan, Fluorouracil, Adriamycin/Doxil)		lung	3 cycles	3-03: Lung mets continued to grow  No longer active in group, possibly deceased.
Fluorouracil, Epirubicin, Cisplatin (5-FU, Ellence, Platinol)		primary - submandibular; lung, liver		doing fine 4-06.  Finished chemo in Feb.	October 2005- Feb 2006
Fluorouracil, Epirubicin, Cisplatin (5-FU, Ellence, Platinol)		diagnosed lung mets 5-04	I have intravenous epirubicin and cisplatin every 3 weeks and infusional 5-Fluorouracil 'ECF' continually, which is administered through a picc line.	I had my first CT scan after 6 weeks and all tumours had either reduced or disappeared completely. My breathing has improved rapidly. I am continuing with the treatment and will have another scan in 3 weeks time.  3-05:  I finished my course of chemotherapy about 5 weeks ago. I had a total of 8 sessions, 3 weeks apart with the 5-FU administered continually. The lung mets have all decreased greatly in size to a stage where they are difficult to detect on a CT scan. CT due in 6 weeks.  4-05:  Had another CT scan on 04-19-2005. Results show no growth at all in the remaining tumours. I am continuing to grow in weight, strength, and physical ability. Another scan in 3 months.  8-05:  I had a CT scan on 08-01-05. It showed a very slight growth in my lung mets.	since 8-04, still on 11-04.  The pump is changed once a week and I go home with this. I keep it in my shirt pocket and it causes very few problems. I can even play golf with it in place.	I had Gleevec treatment in mind and had a C-Kit test done. This proved positive but my oncologist recommended I try a chemo treatment instead, as he believed that Gleevec worked best with slow growing tumours. I started chemo in mid August by which time my breathing had deteriorated and I had great difficulty climbing stairs.   8-05:  Growth of lung mets is very minimal but I have noticed a loss of breathing capacity. I am starting a new chemo regime on 08-05-05 of Carboplatin (Paraplatin) and Paclitaxel (Taxol).	Side effects are some nausea, tiredness, loss of hair, mouth sores and loss of weight, but all are easily tolerable and will of course vary from person to person.
Cyclophosphamide, 5-FU, Methotrexate (Cytoxan, Fluorouracil, Rheumatrex)		lung		15 year survivor of accb, see thalidomide and celecoxib entries.  Expired 9-06		After my lumpectomy, I have 6 weeks of daily radiation and at the same time chemo called CMF(3 drugs).  I had a follow up X ray for 5 years ans then at exactly 5 years the X ray showed 2 nodeules, one on each lung.  I had 2 lung surgeries to remove these, but with the next year 8 small new ones appeared. I continued to see treatment but was told by several pathologists and oncologists that the very nature of chemo is to hit the cancer cell while it is dividing. Since this is what is called " an indolent tumor..which means it grows and divides erratically , it is very difficult to catch it at the right time. When the lung tumors were seen by the pathologist (many) all agreed it was acc breast which is a little different from acc salivary, but still really untreatable.
Cisplatin, Capecitabine (Xeloda), Thalidomide		optic chiasm	Xeloda 500 mg, 2 tabs by mouth half an hour after breakfast, 2 tablets half an hour after supper. 2 weeks on then one week off. Thalidomide 50mg capsules; 3 at bedtime for the durations of the treatment. Cisplatin; Infusion once a week for 2 weeks, then 1 week off.  Same regimen as the Xeloda.	4-04 comment: On Jan 2nd they met with me and explained the tumor had grown too far into the optic chiasm and they could not effectively treat the tumor.  They suggested I return to Ohio and attempt to have tumor shrunk through Chemotherapy.  That did not work and thus I will not be returning to Loma Linda for treatment.                                                                                                                                                                       4-27-04 comment:  It not only did not prevent growth of the tumor, but I experienced a 10% overall increase in tumor size.  Who knows, perhaps it would have grown 30% without the chemo, we'll never know.  So, I will not be traveling back to Loma Linda.  And chemo still is a hit or miss proposition for ACC tumors.  5-04 mets to Major Psoas Muscle between the L4 and L5 Lumbar Vertebrae.  12-05:  still active in group.  1-06: new mets to liver.  4-06: still active in group	I just completed week 2, have next week off and begin the second round the following Thursday.  My goal is to shrink the tumor, not cure it.  If we can shrink it from the optic chiasm  I will explore Proton treatment at the Midwest Proton Radiotherapy Institute in Bloomington, IN.   12-05:  Currently I am exploring any possible treatments for mets to the liver.  I have a tumor on 3 lobes.	It's been a while since I signed off for treatment at Loma Linda University Proton Center.  I could write a book about what not to do when exploring possible treatments.  Suffice it to say that I received no treatment because my tumor had grown into the area of the optic chiasm and they could not effectively treat without making me permanently blind.  I said blind was preferable to death, but they declined, stating that even if they treated they could not guarantee success and my quality of life would suffer too greatly.  7-04:  I just finished having my 2nd interstitial laser treatment by Dr. Castro at UCLA.  While I waited longer than I should have for my second treatment, I explored other alternative providers.  Loma Linda at Loma Linda, CA, the Mayo Clinic in Roschester, MN and and Indiana University all declined to treat me.  They said the risk of bleed out on the table was too great or that they were unable to get at the tumor in the optic chiasm and therefore would be ineffective in treatment. Without interstitial, I would be dead by this point. .	Side Effects:  The biggest single noticeable affect is the increase in the severity of my tinnitus. I was diagnosed with tinitus in 1985 and learned to basically ignore it. Now the level of intensity has increased.  I am told this is an irreversible side effect.  And the question is, at what level do I say enough is enough, can I live with the level of background noise?  The second, which is difficult to manage or predict, is constipation.  It really shuts me down.
Thalidomide (an anti-angiogenesis medication)		lung, chest wall/ribs, diaphragm	100mg	Shrinkage for thefirst time ever!	started 2-2001, likely deceased	B6, Enoxeparin, G-CSF, Celecoxib, interferon, 25 mg cyclophosphamide, herceptin once mo.  Barbie has had six or seven lung surgeries and now must keep an oxygen bottle with her at all times. Since being on the "chemo cocktail," Barbie's scans have consistently showed some improvement.	She was taken off Thalidomide after having been on it for some time due to fingers and toes "tingling"
Thalidomide (an anti-angiogenesis medication)					2001	I just tried thalidomide, but my blood pressure went way too low to  continue it. It was in the 70s over 40s.	hypotension
Thalidomide (an anti-angiogenesis medication)		lung, liver		Stable, no additional growth after 3 mo of treatment		8/03 condition is worsening, 1-04 patient liver mets continue to grow with no current treatment
Thalidomide (an anti-angiogenesis medication)		lung	with celebrex  7-04: reported regimen was 50 mg  plus Viioxx (rofecoxib)  for 3 months,   Discontinued due to increase in dosgae to 100mg(side effects)	discontinued both after 5 months because of continued but slow growth.  3-04 comment: Since the last scan I had after the Thalidomide ,showed no shrinkage but a lot of fluid and I needed surgery for that I stopped.  Interestingly enough, 6 month later scan shows no growth in the previous 6months...maybe it was the drugs or just the little buggers taking a rest.  Expired 9-06	discontinued by 3-04.  3 month CT scan showed continued lung growth, but 6 month one showed stablization and we don't know if it was from the Thalidomide or just the nature of the beast.	Although I did not test positive for the Cox 2(which is what the celebrex responds to) feeling at the time was that it certainly couldn't hurt since almost all people have a little arthritis.)  I took it in conjunction with Thalidomide for 3 months and then stopped due to  some side effects as the dosage was increased. The side effects were from the Thalidomide.	treatment-limiting
Celecoxib (Celebrex) - anti-angiogenesis		lung	took with thalidomide.  Possibly took rofecoxib instead.	see above (thalidomide) Expired 9-06	discontinued by 3-04	Had treatment  twice for acc tumors in lungs at Staten Island University Hospital on 2001, 2002.  I had a great deal of pain in 2 areas.  Pain is now gone and CT scan shows tumor area cleared.	stopped due to side effects due to thalidomide, not celebrex
Celecoxib (Celebrex) - anti-angiogenesis			I take 200 mg a day.		Started 11-03, still taking 3-04, still active in group 4-05	I was just taking to help prevent tumors.  I didn't have any when I started  taking Celebrex.  So far I still don't' have any, but I go back to MDAnderson in 2 weeks for scans.  I probably am not taking enough to help, but who knows??? Been having Hyperbaric Treatments every day and trying to work with 3 kids.
Celecoxib (Celebrex) - anti-angiogenesis		lung, see above	800mg/day	see above cisplatin and 5-fu.		My oncologist took me off it due to all the negative press it's getting now.
Celecoxib (Celebrex) - anti-angiogenesis		initail diagnosis 1997 submandibular.  Subcutaneous mets 1-00	200mg twice a day	I do not know if the Celebrex has had any affect on my lung mets yet since I will not have a ct scan until February 2004.  5-04 deceased
Celecoxib (Celebrex) - anti-angiogenesis			800 mg a day.	8-05 update:  not doing well  7-07 deceased		see above
Celecoxib (Celebrex) - anti-angiogenesis		lung, diaphragm, chest wall/ribs	twice a day (2) - 200 mg ?	5-03 update:In my last thorocotomy (the 7th and last) one of the largest tumor had also gone through the chest wall and into some ribs. It was my impression that this was pretty deep, definately not felt thru the skin. They removed tumors, affected chest wall and 3 ribs. The worst of my surgery was the discovery of 2 flat "placque-like) 6cm each tumors in my diaphragm. Clear margins were impossible to get and still have diaphram to stitch up. Also, the diaphragm cannot be visualized in any scan.  4-04 update: Barbie has been battling lung mets for quite some time.  She has very little  lung function left, and takes an oxygen bottle wherever she goes, but she's still with us!	2001-present	see above Thalidomide for previous cocktail.  Now on B6 (to prevent neuropathy), She is now on Innohep 30 mg. daily instead of Lovenox, and is also on Zometa and gammaglobulin.  Barbie has had six or seven lung surgeries and now must keep an oxygen bottle with her at all times. Since being on the "chemo cocktail," Barbie's scans have consistently showed some improvement.  She wasn't specific about how much improvement.  Interferon (injection in the stomach) 33 on insulin syringe 6x a week Leukine--GMCSF colony stimulating factor (it stimulates white blood Cells esp. cells in the bone marrow precursors of platelets 5x a week, 40 [units] on an insulin syringe [0.4 ml dose].  25 mg cytoxan 2x a day. At this low dose it's called Metronomic dosing and it acts like an antiangiogenic drug. Herceptin 1x a month even tho my cancer did not test out to be estrogen dependent.
Celecoxib (Celebrex) - anti-angiogenesis		lung	I was on 400 mgs a day for several years but then my stomach insisted I cut back on something so have been on 200 mgs a day  for 1 1/2 years. This is for arthritis, not for my lung mets. In fact I was on the 400 mgs when my first lung met showed up at 2 cm and it is now 8+ cm.	I have been on Celebrex for many years for arthritis and during this time I was found to have mets in my lung at 2.5 cm to start and are currently 8 cm.  So I can state that celebrex did nothing for my cancer.  I am only taking 200 mg per day so I don't know if a higher dose would make any difference but I can't take more than that.   Expired 9-06		I have been on Celebrex for years but not for ACC; for arthritis pain.  I still take 400 mg a day but sometimes I even cut that down to 200 mg - it is really rough on my stomach.  Not really sure which medication is burning the stomach so badly but Celebrex is the only one I can cut back on and it is known to do that.
Celecoxib (Celebrex) - anti-angiogenesis		Lung, brain	200 mg 2 x day.  Will increase to 400 a day if tolerated	deceased 3-06	started 9-05	taking concurrently with Vinorelbine / Cisplatin.  See other entry.
Celecoxib (Celebrex) - anti-angiogenesis		My CT in Nov showed my lung mets had doubled in size and number (over 70 now)	400mg per day.	My last scan was March 4th and this scan shows only a 25% increase in tumor size and although an increase again in the number of tumors, not as many as in November.  This represents a 50% decrease in growth since November.  Is it the result of taking the Celebrex?  I'm not sure, but since I have no side effects from it and I have arthritis too, it seems logical to keep taking it.  My Oncologist wants me to try Xeloda, but I'm not sure about that either.	Nov 2003 - present (5-05)  Still active in group 12-05 but not sure if taking Celebrex.
Doxorubicin & Cyclophosphamide (Adriamycin & Cytoxan)			dose for the next 4 cycles.100mg/m2adria and 1000mg/m2cytoxan on one day hospitalization.	regression in size & number of mets	3 months 10/1/1998	After three months late octomber 1998 a new ct scan made us smile at last and gave us hope and streangth to fight further more.The results showed regression of the size and number of modules and complete dissapearance of the pleural liquid.All doctors aggread that it was a very good sign.	severe for the first 12 days
Doxorubicin / Cisplatin (Adriamycin/Platinol)			I received that treatment every three weeks also.	7-99:  That Chemotherapy cocktail like in several others I have noticed in the group stabilized my tumor growth to date.  I have reached my limit on the amount I can take without it causing problems and have been off any Chemo drugs for two months without any growth or increased pain."			It made me sick much like the Taxol.
Doxorubicin / Cisplatin (Adriamycin/Platinol)		Lungs, liver, bone, lymph	6 treatments	Some shrinkage after 3rd treatment, after 6th significant increase in size, numerous new nodules  6-03  Deceased		Patient deceased 6/03
Doxorubicin / Cisplatin (Adriamycin/Platinol)		lungs, liver		liver mets shrank for a while.  Deceased 5-04		tried after pregnancy
Doxorubicin (Adriamycin/Doxil)		lung	I had been getting an infusion every 5 weeks.  Every 10 weeks I get scanned.	The results from my Jan. 26,04 scan show the many tumors are still stable. Six months with no growth is good for me. Just  can't find something that actually shrinks the buggers! My docs have decided that now would be a good time for me to take a break in treatment. Will get a MUGA scan to make sure the Doxil has not affected my heart muscle, a bone scan to check for any mets, and the routine cat scan of lungs,neck and abdomen during this 6 week break. I'll go over these tests with the docs on March 16 and see if I should start the Doxil again. Would be nice if nothing grew while not being treated. I'll follow up with news in March.	Since 7-03 (now 2-04), taking a 6 week break in Feb and mar 04.  Still active in group 8-05	Previously on fowl pox vaccine treatment.  I stopped that treatment after the June lung scan showed some growth in the tumors.  I was sorry to end the trial because it was an easy treatment. Since July I have been on a chemo called Doxil.
Doxorubicin and Imatinib (Adriamycin/Doxil and Gleevec		Lung, How Long Since Primary Site Discovered:  19 years, Size and Number:  Right Lung , all lobes, discovered June 1998, Second lung mets (left lung) in 2001 Size and number:  3-7 largest is less than 2 cm. at last check		Left Lung:  Trial using Adriamycin and Gleevec.  I was disqualified after one cycle.  Now just taking Gleevec.	Other Mets, Size, Number, Treatments:  Sacrum, 8 cm.  Treatment: 17 radiation treatments monthly Zometa infusion	Treatments:  Right Lung removed 1998. Member is still on this group 5-04.
Doxorubicin (Adriamycin/Doxil)		brain recurrences, liver mets	monthly infusion x 2 cycles	3-05:  Returned to Gleevec later in the year until a liver met was discovered in October - off to Doxil for awhile; and I've just started Xeloda.  5-04:  Had a lung CT in mid-January.  Well, the Doxil did its job - shrank the liver tumor in half.  But the onc didn't want to give me anything else until I got over these side effects.  My palms finally went back to normal in February; and I finally got rid of the steroids about that time as well.The next lung CT, in March, showed that the liver tumor had "grown subtly," so it was time to think of something else to try.  (among the options was the resume Doxil, but at half-strength).  See Capecitabine (Xeloda) entry for further details.	started 10-04.  11-04:   It's currently scheduled to be administered monthly - my next infusion will be this Thursday.  I don't know how long they expect this to go on, but they tell me I'm supposed to have a lung CT every other time, so I guess the next one of those will be around the January infusion.  I'll probably learn more when I see the doc/nurse practitioner on Thursday.  5-04:  I was on Doxil for two cycles - one infusion in November and another in early December.	Fox Chase - I've been going there since 1998, primarily for lung-related stuff.  I had surgery there in July of that year.  Dr. Goldberg was my surgeon, and I've been under Dr. Langer since.  11-04  Things have become more "active over the past year or so.  At this time last year I underwent 10 radiation treatments for a brain tumor, under Dr. Feigenberg.  I've also had stereotactic radiosurgery for brain stuff, in March and June of this year.  After two clear checkups, my next one is next Thursday.  However, my last lung CT in October showed a spot in the liver, and  chemo has begun with doxil.	About two weeks after the second infusion, the side effects became evident:  hair began to fall out, mouth sores appeared, and hand-foot  syndrome caused my palms to turn red.  (All this, and loss of leg strength too, thanks to the steroids I was also on to boot)  The mouth sores made finding things to eat somewhat challenging - and the cook (aka spouse) had a fun (!) time coming up with things I could eat.  I finally began eating "normally" - without worrying whether I could handle specific foods - at the end of January.
Unknown kinase inhibitor		lung	"multi kinase inhibitor trial"	it has stabilized the ACC in my lungs for 6 months which happens to be the length of time that I have been in this study 7-07:  I just received a recent CT scan of my lungs and ir reavealed that the clinical trial (multi kinase inhibitor drug) is not working as well as we had hoped.  The cancer is growing once again.	1-07-6-07	I'm participating in a clinical trial study involving this family of drugs	The side effects are minimal
Unknown		lung, liver, bone, abdomen, and uterus	last 7 years	likely deceased		I have been treated with over ten different combinations of drugs.
Letrozole (Femara) (cancer medication for estrogen receptor positive tumors)		lung, others		2004 deltoid muscle met Tx: radiation, 2004 lesion in nostril Tx: surgery.  Deceased 2-06	start 2004
Letrozole (Femara) (cancer medication for estrogen receptor positive tumors)		lung, see above	usual dosage 2.5 mg orally once daily	I've had 2 rounds of chemo, the last one ending one year ago and my lung mets have been stable since (last CT was done last Wed.).  My onc  says that a newly growing mets is easier to control.  Also, one of the reasons it is widely thought that chemo isn't successful with ACC is because ACC grows so slowly that it doesn't uptake chemotherapy agents.  So, maybe traditional chemo works better with a faster growing ACC.	8-05:  taking since 10/03 and I'm sure it's one of the factors keeping me stable.  1-06: still taking.	the biopsy from the original site (trachea) and the lung mets tested positive for estrogen receptors.  When I had surgery in '02, it was to remove several metastatic tumors on each lung.  After opening my chest and taking a few sections for biopsy, the surgeon closed me up.  He reported to my family that he couldn't remove anymore because the nodules were "all over".  Inside and outside the lungs, around the pericardium, along the diaphragm, all over the chest cavity.   1-06:  When I was first dx with the lung mets I was tested for c-kit [for Gleevec treatment] and showed low results for that.  The tissue has also been tested for estrogen uptake, which showed high.  That's when I was put on Femara which is an estrogen blocker.
Imatinib + Doxorubicin (Gleevec + Adriamycinl)		lung		Deceased 2-06	one month in 2002	trial only lasted a month and then stayed on Gleevec for 18 months while lungs remained stable
Imatinib + Cisplatin (Gleevec + Platinol)		primary -  neck.  After a few years it spread to my liver, and unfortunately it recently spread to my Lung and again my Liver.	I started taking the tablets on Friday after having a series of scans + tests done on Thursday. 4 Glivec tablets taken after breakfast and 4 tablets 12 hours later after a full stomach with lots of water.	doing fine 4-06.  Finished chemo in Feb.	March 2002 - January 2004       4-03:  I was starting clinical drug trial of Glivec at Christies in Manchester. It's a clinical trial with patients who have recurrent/metastatic Adenoid Cystic Carcinoma of the Head and Neck.
Imatinib (Gleevec) note - a small Chinese study (5 pts) concluded: We observed an unexpected high progression rate of metastatic ACC within short periods during imatinib treatment. Use of imatinib to treat cancers without c-kit or PDGFR-alpha mutation should be approached with caution.		lung	I have had to reduce the dose from 800 mg a day to 400 mgs.	6-02:  I had no growth in any of the lung mets and there was no new mets or tumors found!.2nd update:  tumors continued to grow.  11-02:  I had another ct scan last week and it shows no growth at all.   No further follow up, probably deceased.	started 9-04	DR Shepard had decided to let me stay on 400 a day 200 in the morning and 200 12 hours later until I go back to see him on Aug 20th. He said at that time we may try to up the dose to 600 if it did not cause any rash. I have had a decrease in the pain in my back so he said that was a really good sign even though the CT scan did not show the mets getting any smaller.	I had a terrible rash that occurred after 8 days of 800 mgs a day. They stopped the Gleevec for one week and tried to go back on 800. The first 400 that morning was OK but the other 400 that night caused me to turn red like a bad sunburn one hour after the second dose.
Imatinib + 5-FU (Gleevec + Fluorouracil)		innumerable lung mets and new tumor near his brain stem at his skull base	11-02:  he is currently on 400mg/day, and has taken the drug for about 3 weeks w/o signficant side effects.	deceased		tumor was c-kit positive at 75%; and his ACC form is solid and tubular.
Imatinib (Gleevec)		lung		stable for 18 months 2002-2003.  Deceased 2-06
Imatinib (Gleevec)		lung, bone		Expired 9-06	4-05 - before 12-05	I am starting gleevec this evening. New test show a PDGF of 2...They believe that gleevec works with 3, but Dr. Von Hoff & Dr. Drucker have high hopes that this might work. I have slowly but surely growing lung and bone mets. I am also having Zometa IV every month.
Imatinib (Gleevec)					pending insurance approval 1-07
Imatinib (Gleevec)			I’m taking 800mg/day		I started Gleevac just over a month ago.	It’s odd, but 4 years ago, I was at John Hopkins and they said my tumor which was frozen at the time, did not test positive for Gleevec. Recently 2 months ago, they took some tissue/cells  which were positive for ACC and tested it again for Gleevac and it came back as positive.	I have had no side affects to this date other than getting tired.
Imatinib (Gleevec)		lung (primary 2004, mets)	400 mg/day		started 7-07	pathology report done in July of this year on the tissue from her 2004 ACC tumors, which were frozen for future testing. The report states that she had extensive faint positivity for cd117 (C-kit) but no % was given on this pathology report. They are not able to get a biopsy of the new tumors so they are hoping that they would also be positive for C-Kit, thus the Gleevec treatment.
Imatinib (Gleevec)		lung recurrence			restarted 2006
Imatinib (Gleevec)		lung		I was on Gleevec for about a year. I was stable then started to grow, so I got off of it.	about a year 2005	also had 28 treatments of radiation.  Mine started in my right lung, was removed in 97 came back in my left lung in 2002 had 6 resections just small spots
Imatinib (Gleevec)				continued growth
Imatinib (Gleevec)		sinus	600 mg po q day		taking Gleevec 1-05
Imatinib (Gleevec)				continued growth	2004: 6.5 months		the longer I was on it, I was beginning to have more negative side effects.  (Anemia., fatigue)
Imatinib (Gleevec)		lungs, liver			expired Aug 2007	died of hepatitis
Imatinib (Gleevec)			400 mg po q day		2-05:  started 12-04		He has not had any bad side effects yet.
Imatinib (Gleevec)		lungs	7-02: 500mg a day, up from 400mg.	3-02: The largest of the tumors has stabilized, and there's even some evidence that two others may actually be shrinking. Even better, there doesn't appear to be any growth in the other tumors scattered around both lungs.  7-02: slight growth all over when compared to the previous scan	1-02 -	C-kit 40% positive	The biggest side effect I'm experiencing right now is fatigue  8-02: anemia
Imatinib (Gleevec)					2-05: I am currently taking Gleevec again after being on a trial and trying other drugs unsuccessfully. I know drugs don't usually work again after they have stopped, but I was just buying my time before another trial opened up for me.	I had taken Gleevec for about a year and a half before my lung tumors started to grow again, back in about February 2004. While I was taking it I had scans every three months.
Imatinib (Gleevec)		lungs		4-02:  Great news on my last lung scan! There was a 25% reduction in tumor mass, again. I've been on Gleevec since late October and had another 25% reduction back in January.  Likely deceased.	10-01 - 4-02	see pt 3 post 6469	Only complaint is extreme fatigue caused by low blood counts. I had to take Procrit for my low red-count back in January.
Imatinib (Gleevec)			400 mg po q day		started 11-02		I have had two follow-up blood tests (AST) and those are fine, so I am tolerating it well from the lab perspective. I have experienced a bit more fatigue and some mild GI stuff that is episodic.
Imatinib (Gleevec)		13 years ago, February 1988, right submandibular gland tumor, lung mets since 1993 and now has additional kidney mets	Started at 100mg/twice a day.  At week 5 is now at 300mg/day.  3-02:  600 mg daily	2-02:  chest ct stable  7-02:  ct scan revealed liver lesion.  Discontinued due to treatment complications / no dramatic change.  Expired 9-06	started 10-01	C-Kit: + ACC Cell Pathology: cribiform / cuboid.   I also developed persistent coughing up blood. This necessitated a bronchoscopy which indicated the airways in my upper and lower left airways were markedly distorted and compressed along with a large pleural effusion.	Got nauseated at first.  I became more and more fatigued, very short of breath, didn't feel well at all, and had experienced some weight loss, probably as a result of a diminished appetite.
Imatinib (Gleevec)		origin of tumor in 1998 = sacrum, mets to spine, lungs, liver, neck	She is currently on 400mg.  3-02:  She is currently on 600 mgs of Gleevec with the same mild side effects, fatigue, a bit of water retention, and occasional nausea.	12-01:  After two further x-rays, her lung mets appear stable, but they haven't disappeared either.  11-02: progress with Gleevec is currently mixed. Her lungs and liver continue to be stable one year after diagnosis, but a new tumor showed up near the original site in the muscle on her lower spine.  Deceased 4-07	started 9-01.  Update:  My wife has now been on the drug for almost two years.  Does not appear to be on any more 3-05, possibly deceased.	C-Kit: +  ACC Cell Pathology: cribiform.  See message 6469  11-02: her blood counts showed reduced activity, and her lung x-ray showed some improvement. She is continuing Gleevec at 700 mgs a day due to the discomfort and heartburn time symptoms she gets at 800 mgs.	the only side effect so far is fatigue.
Imatinib (Gleevec)			8/01 started Gleevec 2 po bid x 2 d, then 3 po bid till 9-7-01	Halted treatment due to weight gain, increased shortness of breath, increased mets in lung.	started 8-01
Irinotecan, Leucovorin, flurouracil (Camptosar, Wellcovorin, 5-FU) [aka FOLFIRI] PLUS Bevacizumab (Avastin)		lung, see above			1-07 thru 3-07
Lapatinib (clinical trial)		lung, brain	7-05:  I'm on my second dose of medication in the lapatinib trial.  The oncologist felt that if it were going to work it would work relatively quickly, within 2 weeks.	In the last month my cancer has gotten even more aggressive with the latest CT scan showing 40% growth of my largest tumors and new ones in the spleen and lymph nodes.	started 7-29-05, discontinued as of 9-05	If the lapatinib doesn't kick in soon I will either need some type of pain medication or need to look for ways to remove or shrink this one met.
Lapatinib (clinical trial)		lung	take 6 pills(1500 mg) daily on an empty stomach.	At the end of Oct. I had to come off the lapatinib trial because the lung tumors were still progressing.  Discontinued for increased difficulty in breathing and disease progression but it was not significant enough to stop the trial.  With very little air space left in lungs i needed to come off of chemo and work on my breathing.	6/28/05 to 10/05.   IRB protocol 05-008	I believe this is the trial I started on June 26th at Fox Chase. My consent form doesn't have a drug name on it, it says a Phase 2 study of GW572016 in Recurrent and/or Metastatic Adenoid Cystic Carcinoma and other EGFR-and/or erbB2-expressing Malignant Tumors of the Salivary Glands.	So far the side effects are occasional loose stools, poor appetite(although I had this before I started), a sensitive tongue with a few ulcers,and the usual fatigue.
Lapatinib (clinical trial)				It didn't work for me. I was off it after 4 months, my biggest met not only had grown more then the 18% allowed, but lots of new mets had developed, and I now have the start of a collapsed lung.	4 months
Lapatinib (clinical trial)		lung  Mine started in my right lung, was removed in 97 came back in my left lung in 2002 had 6 resections just small spots	I take six pills in the morning	9-05: I just got the results from my 2 month ct scan and everything is stable  1-06 update: I just got my results back from my ct scans as of 12/31/05 everything has stayed the same. so far the trial seems to be working and no new side effects  1-06: the spot they're watching has gone from 2.5 x 1.9 x 1.5 cm to 36 x 26 mm	8-05: I Just started the trial 2 weeks ago.  1-06:  so far things are going OK.  3-06: 3mm slight growth in 4.5 x 3.5 cm lung met, otherwise stable.  Will continue on trial for now.		The only side effect I'm having is a little diarrhea, and I take a anti-diarrhea pill every other day to control it. I feel fine.
Perifosine (Akt inhibitor)		lung				I have had cyber knife and gamma knife for my primary sites of ACC and now hoping that Perifosine will stop the growth of my lung mets.
Sorafenib (Nexavar) (a (a VEGFR-2/PDGFR-ß inhibitor)		lung 2001		The lung mets shrunk for three months and then started to show a little growth. He had pain so the doctors recommended radiation for pain and took him off the trial. It worked for 2 months but now he has pain again because the mets are about the size they were before the sorafenib.	3 months 2006	clinical trial University of Chicago
Sorafenib (Nexavar) (a (a VEGFR-2/PDGFR-ß inhibitor)					started 4-07
Sorafenib (Nexavar) (a (a VEGFR-2/PDGFR-ß inhibitor)					started 11-06, still taking 4-07	The side effects are not too bad. But at first, I had blisters on my feet and I couldn’t walk for 3 days.  So I went to half a dose and have been working to get back to a full dose. I’m actually trying ¾ a dose starting today.  When I feel the blisters coming I stop for 3 days, then start at a single pill for 10 days, then 2 pills for 10 days…etc up to 4 pills. I also have some lack of sensation on my left side of face that may be due to nerve damage from the Nexavar and dryness of my eye.  But, all in all, not too bad.	hand-foot syndrome, see comments
Sunitinib (Sutent) (a PDGF, KIT, and VEGF inhibitor)			I will be taking 37.5 mg with no break between cycles.		starting soon 6-07		they are treating me for the high BP.
Sunitinib (Sutent) (a PDGF, KIT, and VEGF inhibitor)		lungs	It's a pill, you take it 28 days on and 14 days off. Initially took 50 mg/day and decreased dose during last two cycles to 37.5 mg/day.  Will increase back to 50mg/day after 7-07.	I had one scan after the first 2 rounds which showed no new measurable growth of the tumors; 7-07: some new growth, will increase dose from reduced dosing regimen  9-07: The Sutent appears to be working again since the onc put me back on a higher dose.  My mets have stabilized, no new growth.	started 1-07, still taking 6-07	They have to monitor my white blood cell count, there's some concern about my immune system, and my blood pressure went up some.  Since they lowered the dose for these last two rounds the side effects have been quite minimal.  7-07: This time there was some tumor growth, nothing too dramatic, still slow-growing.  One possible explanation may be that I had been taking a lower dose during the last 2 cycles.  I asked my onc. if he thought that raising the dose back up to 50 mg/day could make a difference.  He said he thinks that is a reasonable assumption and that raising the dose back up to 50mg is worth trying for another 2 months and is his first choice as the next step.	Mine have not been too bad at all, mostly just odd things (my hair turning gray) or somewhat annoying things (some mouth sores)
Sunitinib (Sutent) (a PDGF, KIT, and VEGF inhibitor)		multiple bone mets, liver		After 3 weeks it is working very well.  My oncologist is very pleased and told me I was recovering and I had turned a corner.  He was so happy the Sutent was working.   Me Too!  7-07:  deceased	started 5-07
Sunitinib (Sutent) (a PDGF, KIT, and VEGF inhibitor)		lung			started 9-06
Sunitinib (Sutent) (a PDGF, KIT, and VEGF inhibitor)		lungs and liver (see Iressa entry for history)		10-06:  after the first two months, She has had no success with Sutent. Her tumors have continued to grow, and things aren't looking too good at the moment3-07: several tumors were a bit smaller on her final scan just two weeks ago.  Deceased 4-07	started 8-06		Side effects have been mild, and she is dealing with some heart burn issues. She is taking zantac to handle the pressure that builds in her esophagus.
Tamoxifen (Nolvadex) (cancer medication for estrogen-positive tumors)		spine (which radiotherapy has helped enormously), my mediastinal lymph node and my lungs	40 mg daily	3-06 my cough has improved a lot which makes me wonder if the mediastinal lymph node mets are reducing. 5-06:  I've been taking Tamoxifen (20 mg bd) for four months now but unfortunately it hasn't shown any benefit as yet, with new growth and new nodules in my lungs.  I am going to continue taking it, though, just in case it is doing a bit of good and in the absence of anything else at the moment.	started 1/2006; 6-06 - not doing well, in hospital, probably off treatment	I am taking 8 mg of Dexamethasone to help a bit with my breathlessness and this also boosts my appetite. I also have three small lumps on my head and a bigger on in my left upper leg!  The ACC seems to have been a bit aggressive lately.   I'm going to carry on taking Tamoxifen in the absence of anything else, just in case it helps a little.	none
Tamoxifen (Nolvadex) (cancer medication for estrogen-positive tumors)				5-06:  I have been on tamoxifen for 3.5 months and my recent CT scan results indicated that there were no changes in the tumor nodules in my lungs since my previous CT scan on Jan. 6 of this year, so, it appears that for me at least, tamoxifen is working for now.		Recently, I had my tumor analyzed for all receptor sites (I believe that there are 4 total) and it did not have any of them including estrogen.
Tamoxifen (Nolvadex) (cancer medication for estrogen-positive tumors)			BID		taking now 2-06.  Awaiting more scans in April.  6-06:  still taking taxmoifen	3-06: I finished a radiation course in December to my right lung lining.  My mets were pushing against my ribs causing me very much pain.  My radiation oncologist suggested we try 20 treatments of very low dose radiation.  We discussed cyber knife also, but he said that for me the small, slow doses would probably work better. He was right, after only one week, I could tell the different in how much pain I was having.  By the end of the treatments all of my pain on the right side was gone.  I even had some relief to my left side. (My lungs are filled with over 70 very small mets)  My CT done in February showed that the 2-3 largest mets on my right side had shrunk significantly and so had many of the smaller ones.  Even no growth on the left side.  I am now taking Tamoxifen and hoping that keeps them from any continued growth.	No side effects at all.
Tamoxifen (Nolvadex) (cancer medication for estrogen-positive tumors)		lung	20 MG DAILY	I got results from a lung ct this week and for the first time in a very long time some of the mets have decreased in size. I've been on clinical trials and chemos for 5 years and these two therapys working together have finally done something .  3-06:  I had a 2nd lung CT since being on tamoxifine on 2-23-06. Again, it said "a slight decrease in size since prior study". This is shocking and amazing for me. I'll continue on the tamoxifene and wait for the next ct which will be the end of april. I get them about every 8 weeks. I'm not noticing any change in my pulmonary status, but my docs did show me that there was more air space in my lungs on the films. I'll let you know  results after my next ct.  8-06: deceased	started tamoxifen 12-05.  My docs tell me that in the last 5 years I have been on 10 different chemo routines., mostly clinical trials. I have recently stopped all chemo except tamoxifen, because my lung tumors just kept growing.	I saw the docs I brought the name of a drug that someone on this list said kept his wifes lung mets stable. It is a breast cancer drug. My doc said it was very similar to tamoxafen,  did I want to try that Sure I was preparing to die anyway. Also, Since I wasn't taking any other chemo my sister who is an RN started me on a ton of alternative mega antioxidants, vitamins fish oil, all kinds of stuff that I gladly took. She said the docs had their turn Its my turn now!
Tamoxifen (Nolvadex) (cancer medication for estrogen-positive tumors)			10 mg twice a day	The mets in my livers grew faster than they did before and there were more of them. Also, there is a met to the lung now. My orginal tumor in my trachea did not change much.	started 1-06, discontinued 6-06		hot flashes and it messed up my period
Tamoxifen (Nolvadex) (cancer medication for estrogen-positive tumors)		right submandibular / lymph nodes.  Mets to lung.	I have been on 20 mg tablets twice a day, since 3-2000 after my operation.	For a couple of years the lung mets stayed stable, however, now they have increased in both lungs.	3-00 - 11-02	I also had 30 radiations (6 weeks).
Tamoxifen (Nolvadex) (cancer medication for estrogen-positive tumors)				Mets stabilized		Mets were rapidly growing prior to treatment
Tamoxifen (Nolvadex) (cancer medication for estrogen-positive tumors)		primary (base of tongue) recurrence, mets in lung.  Initial dx 1996	My dose is 10mg twice a day	I have an MRI once a year and my oncologist feels that maybe the tumors have been slowed down by the Tamoxifen, however, there is no way to really know unless they go in and remove them to see if any Tamoxifen has latched on to the tumors.	about 5 years 2000-2005.	I have been on Tamoxifen for almost five years as treatment for ACC at the base of my tongue I also have five very small tumors in my lungs.  My oncologist felt if Tamoxifen was effective in the prevention of spread to the lymph nodes then it might be effective with a slow growing cancer.  There wasn't any specific testing prior to my taking the Tamoxifen.  3-06:  I did not have any real rapid growth in that time although I did have lung mets that have been pretty stable in growth...my oncologist felt it was time to come off it since I ran into some thickening in my uterine lining and five years was usually the max time for women with breast cancer...I can't say with certainty but it almost seems like the acceleration in my tumor growth almost coincides with the discontinued use of the tamoxifen...I am now considering maybe going back onit or discussing with him the new drugs that may be similar to tamoxifen.	side effects have been very similar to menopause (sweats and irritability)
Temozolomide (Temodar) (cancer medication usually for brain tumors)		Brain: a 3.5 cm tumor at the right occipital lobe was found in November.	We jokingly referred to the stuff as :birth control in reverse," as you take it for five consecutive days, then don't take it again for the next 23.	When I had my first checkup in late January, just after my first cycle on this drug, the tumor had shrunk by 50 percent, but there were still two others on the left side that were small but needed to be monitored closely.  The doc decided not to see me until I had had three cycles of Temodar.  Last checkup was last Thursday [March 2004].  On Friday I learned that there's been some growth and the doc wants to zap them immediately.  So, it's back to Fox Chase this coming Monday, the 29th, for another round of stereotactic radiosurgery.	3 months.  Started in late Jan.; on Shering-Plough's "Commitment to Care" program 11-04 Update:  treatment only lasted three cycles, ending in March 2004.  When I first started it, my husband had found an online support group; and I remember him telling me that he had read that if the drug was going to be effective, it would be known almost immediately.  4-05:  Returned to Gleevec later in the year until a liver met was discovered in October - off to Doxil for awhile; and I've just started Xeloda.	For the first time in all my recurrences, I had "real" symptoms:  my weight had inexplicably dropped, water (which I drank lots of long before I had dry mouth) didn't seem to taste "like water," and I was having problems keeping breakfast down.  As a result, I had 10 radiation treatments starting just before Thanksgiving, ending in early December.  The Decadron I'd been given, which never gave me any problems before, this time did a legs.  I had little or no strength - climbing stairs and getting up from chairs proved to be a frustrating challenge.  I finally began to move around normally by late January-early February.  And to make matters even more "interesting," my health benefits under COBRA ran out in the middle of the radiation treatments - we'll be paying off Fox Chase forever.	It did nothing for me except make me throw up on the first night of each cycle - you could practically set your watch for it.
Toremifene (Fareston), cancer medication for estrogen-positive tumors		primary 1999 sinus recurrence 2004 sinus mets 2004 lung		She just had a cat scan of the lungs after 18 months and no added growth detected. Her largest lung met actually reduced in size but she developed a couple smaller mets. Overall less space from the cancer.	They started tamoxifene in 2002 for atypical hyperplasia.
Toremifene (Fareston), cancer medication for estrogen-positive tumors		lung, sq met on back		disease progression	5 months 9-06	My husband was tested for estrogen receptors and his tumor was negative. My understanding is that most ACC tumors are ER negative. He has decided to try torimefene anyway, because of low side effects and his doctor feels that it may have antiangiogenic properties. For us, it is kind of a shot in the dark but worth a try.	none
Toremifene (Fareston), cancer medication for estrogen-positive tumors		primary  trachea, mets to lung	usual dose 60 mg once daily until disease progression is observed	7-04: It has been three years now, and biopsies of the site continue to be negative.  10-04: She has taken fareston for three years, and during this time her two lung mets have shrunk at first, and for the last two years remained stable.  Her oncologist at Stanford said that it has an antiangiogenic effect in addition to limiting estrogen.  10-05:  Her lung mets, which were originally scheduled for surgical removal, have actually shrunk over the last five years.  Surgery is no longer being considered.  1-07:  two 1.7cm lung mets which have recently started to grow after five years of being stable with toremifene.  RFA is being recommended	6 years  4-05:  Over these years her two lung mets have shrunk and have been symptom free. Her results with fareston have not been published because there has not been a 50% reduction in the tumors- an apparent requirement for publication. Nevertheless, we consider this very significant.  Lung resection, which was once recommended , is no longer needed.  3-07 update:  expired due to a surgical complication (not acc progression)	Connie had ACC in the trachea as the primary site, the same treatment you did, and she had yearly bronchs for ten years.  She had lung mets at year 15, and recurrence in the trachea around year 20.  Her recurrence was treated with photodynamic therapy and mesh stents to keep her trachea open. She continues to do well now with no further ACC noted in the trachea.  Her two lung mets in her good lung have shrunk and remain small for three years. She has been taking toremefene (fareston), an anti estrogen med, which seems to work in her case.	Some increase in hot flashes is her only side effect.  This drug has had no serious side effects.
Topotecan (Hycamtin) + Gefitinib  (Iressa) clinical trial		bronchus  [after several thorocenteses (Nov-Jan), one pleurocentesis (Jan), and a stent placement in my right bronchus (April)]	Topotecan administered on Days 1, 8, and 15 (in a 28 day cycle) and Iressa taken orally on days 5-21 of that same cycle.  (I had tried Gleevec in 2002 but no real effect was noted).		start 5-05	Tried this after Gleevec (orally every day, for one year, initial results seemed to be no growth after 3 months so I continued despite initially fatigue, but it was manageable.  Gleevec had no results (a scan showed continued growth). See Cyclophosphamide / Doxorubicin / Cisplatin entry for next chemo regimen.	8-05:  I would not recommend since I had a bad reaction to the Iressa, resulting in reduced lung volume
Trastuzumab (Herceptin) cancer medication for estrogen-positive tumors		lung		did not stop tumor growth Expired 9-06
XL647   (Exelixis) selective kinase inhibitor (SSKI)				prolonged stable disease >3.5 months		As reported by the investigators one patient (non-small cell lung cancer [NSCLC]) has had a partial response and 12 others (NSCLC [3], chordoma [2], adenoid cystic carcinoma [2], adrenocortical carcinoma, colorectal, ovarian, mesothelioma and head and neck cancer) have had prolonged stable disease >3.5 months.
XL647   (Exelixis) selective kinase inhibitor (SSKI)		2 nodules in his lungs  9-06:  While my husband had multiple mets throughout both lungs (too many to count), only about 4-5 of the largest ones were being measured.	Medication is taken daily for 5 days then off for 9.	Chest CT's were done before the start and after every 4 cycles. 1st CT showed very minimal change (increase) in tumor sizes. A 20% or greater increase would be considered progression and the study would be stopped. This last scan showed no change with possible very slight reduction in size of 1 of the tumors.   9-06:  it seemed that the disease in his lungs remained "stable" during the time he was on the study. Stability was determined by having less than 20% growth over baseline.	He recently completed 8 cycles (16 weeks) of the medication.  906:  It has been 3.5 years since my husbands mets were first discovered and over a year since he has been off XL647.	http://www.clinicaltrials.gov/ct/show/NCT00086528, Safety and Pharmacokinetics of XL647 Administered Orally to Subjects with Solid Tumors.  It is a phase I trial.  4-06:  Now considering tamoxifen or torimifene  9-06:  During the course of the study, a subcutaneous met on his back which was not initially measured seemed to start growing at a faster rate. At that point, they started to keep track of the growth of this tumor as well. Ironically, he eventually exceeded the 20% growth increase, mainly because of this (the least life threatening) met.	He has been tolerating the medication very well, with no side effects.  9-06:  Basically, the drug was well tolerated.