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Adenoid Cystic Carcinoma

© Participating in a Clinical Trial, 8/2/05

Join Donna on our Adenoid Cystic Carcinoma Support Forums

I wanted to tell my story, in chronological order, and then tell you about my participation in a clinical trial.

1950 – 1970: I was born with a family trait that eliminated 10 of my 'adult teeth'. In other words, when some of my first teeth (“baby” teeth) fell out there was no tooth under them to fill in the space. Dentists took a lot of x-rays from 1955 to 1965, looking for the replacement teeth. Those were not the days of low dose x-rays and protective lead shields being placed on the patient! I have often wondered if others who have Adenoid Cystic Carcinoma were also treated frequently with strong x-rays.

1960 -- 1990: I was frequently diagnosed with strep-throat, bronchitis, and/or sinus infections. I had dozens of x-rays of my mouth and several major oral surgeries (including three implants, which were most likely improperly installed). The implant area kept getting infected. This caused me to be on antibiotic treatment for oral infections almost every year from 1984 to 1997.

1995 – 1997: I had a sore throat and a very dry mouth that just never seemed to improve. I cut down on smoking but that did not offer assistance.

In August of 1997 I stopped smoking all together. However, the sore throat continued, and I was gagging a lot when trying to swallow food. In October a dentist told me that my mouth was so dry because I had clogged up my ducts. He indicated that I needed to suck on “real” lemon drops since that would dissolve the blockages and let my saliva begin to work again.

My throat continued to get drier and I was gagging even more. In November of 1997 the dentist sent me to a specialist who began a series of tests “to rule out cancer”.  In December of 1997 an MRI was ordered and it showed a large mass on the right side of the base of my tongue.

Jan 1998:  Surgeons removed the original mass and tested it.  The pathology report came back - adenoid cystic carcinoma of the base of the tongue.  The surgeons then had constructed a new tongue out of my left forearm.  I did speech therapy, for about six months, to learn to talk and swallow again.

Feb 1998:  I had radiotherapy treatments to the head, brain, neck, and above the shoulder blades.  As a result of the radiation, all my teeth fell out.  I began to get a cataract and have quite a bit of hearing loss in both ears.  I lost my sense of smell, but some has returned.  I am especially aware of toxic odors; like gasoline, hot tar, burning tires, etc. I lost my sense of taste, but this has improved slightly.  Initially I could only consume a liquid diet.  Due to the osteo-radio-necrosis to my right jaw, the dentures have to be refitted frequently.  That means that I still can't chew food comfortably, most days, so I am on a pureed diet for the most part. I have had many other long-term side effects from the radiation.

Dec 2001:  I had a blockage and a 10% loss of function in my kidney. Several tests were done, but they were inconclusive.  The surgeon decided to remove the right kidney.  As a result, I was diagnosed with metastatic adenoid cystic carcinoma to the kidney.

Oct 2004:  I was diagnosed with metastatic adenoid cystic carcinoma to the liver.  This tumor was growing at a very aggressive rate and doubled in size very quickly.  Since then, I have learned that when AdCC has metastasized repeatedly, it is no longer a slow-growing cancer.  It picks up speed and becomes much more aggressive.

March 22, 2005:  The largest tumor in my liver was determined to be inoperable, since it was wrapped around a necessary part of my heart.  The surgeon did not see any sense in trying to remove 2 smaller tumors that were also discovered in my liver, at that point, since that would just give the largest one more space to spread out. He also discovered countless, incredibly infinitesimal, tumors all over my abdomen.  He felt the entire surgery, initially planned for, was just too dangerous to proceed. He stapled me up as fast as he could. That was a disappointing day, to be sure.

April 4, 2005:  We learned from my oncologist about the  new clinical trial and began the application process. I was prepared to go to Boston, but Yale is barely an hour's drive from my home.  New Haven was much more sensible and it beat traveling to Boston by more than 5 hours each day!

April 18, 2005:  I was accepted into the Clinical Trial for Adenoid Cystic Carcinoma.  I began receiving the study drug, a.k.a. Bortezomib, which has FDA approval for helping people who have multiple myeloma.

This chemotherapy regimen is given twice a week for two weeks; followed by one week "off", for a 21 day cycle.  At about day 40, when two cycles have been administered, I always have an MRI to measure the progress.  So far the chemotherapy seems to be working on all of the tumors in my liver, abdomen, etc., since there is no evidence of further growth.

I have used Reiki, massage therapy, and acupuncture as complimentary treatments.  I also have a great deal of spiritual support.  The side effects are not worth complaining about since I get another day to live.  Today I began the sixth cycle.  On August 18th I will have the 4th comparison MRI.  I pray that the tumor will begin to show shrinkage soon, since complete disappearance of every tumor is my immediate goal.

Perhaps the Bortezomib does not have any positive affect on tumors that are growing in my lungs.  That would be unfortunate.  If the tiny spots observed in my lungs don't stop their growth in the next three weeks, the clinical trial protocol will be stepped up in intensity and Doxorubicin will be added to the treatments.

Future Plans:  I want the chance to share all of the lessons I have learned so that I can help others to avoid this devastating journey.  As a participant in a clinical trial, obviously, I am willing to put my life on the line so that future generations will not have to suffer through adenoid cystic carcinoma.

I now know more about proper nutrition than I ever knew.  I am now seriously compliant about every vitamin, every eye drop, every suggested medication, etc..  I am living each day with purpose and future plans.  I pray to have the opportunity of having a 'care-free afternoon', once again.  I know that 'this too shall pass'.

I am a very slow typist, however, I will certainly make the effort to keep in touch with each and every person who is communicating with me.  Since researching all of the exciting new events surrounding cancer treatment and educating myself, learning from others and dealing with my cancer is my life story now!