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	.
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	6-06:  I am currently on Carboplatin, Taxol, Avastin and Aredia (a bone strengthener).   I have had 4 treatments, to day will be my 5th.	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)  (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) +/- 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	started 3-04 at 2000mg/day.  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
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) 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	once weekly x 5 weeks		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?]	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.		no follow up, probably deceased	6-04: I had 6 courses of chemo - which was Cisplatin. This was apparently the best one they decided to use for the trial.	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)					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		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.	see comment
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)		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			11//2006	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)