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Oral Cancer Recurrence Trial - should I participate

by Samson_Delilah, Apr 22, 2007 12:00AM
Hi.  I had tongue cancer that was surgically removed in Jan 2006.  I had a small lump removed in Feb 2007 that was read as Verrucous hyperplasia in one report and as dysplasia at another facility.  I did not have radiation or chemotherapy.  No nodes were positive - it was just barely a stage II tumor.

I have partially screened for an oral cancer prevention trial which tested my tissue for a gene mutation that is supposed to mean that if positive (which I am) that I have a 65% chance of recurrence within 3 years.  I am currently symptom free - although there are no good tests for this - just wait and watch (and worry).

The trial uses erlotinib (Tarceva) for one year.  I am 30, female, unmarried and have no children yet.  I also have asthma - although I don't think it is severe.

I'm trying to decide if I should enter the trial or not.  Do you have any experience with Tarceva?  Specifically, would you recommend a young women who may want children to enter this trial.  Of course - I could get placebo - however, it's double blind - so unless I exhibit side effects - I will not know if I'm actually on the erlotinib.
Member Comments (1)

by angkazoo, Jun 30, 2008 11:02PM
To: Samson_Delilah
Hi-

I am a 21 year old female that was diagnosed with tongue cancer a couple months ago. Three weeks ago I underwent surgery to remove the tumor.  

The week previous to the surgery I was part of a study using Tarceva.  Within three days I developed a severe rash that looked like the worst case of ace imaginable- I was covered from my stomach up to my face through my scalp then back down to my but with tiny pustules and red bumps. On the fourth day of the drug I had to stop because the rash and swelling were so painful.  I was put on clyndamicine (spelling wrong) and steroid treatment.  

The team of researchers are puzzled by my reaction because it was so sudden and severe.  Today (three weeks later to the day) my rash is nearly gone. I still have some of the bumps on my faces and have a strange purple/red discoloration on my face and back.  Sadly they do not know if it will go away...I just have to wait and see.

If you develop a rash call your doctors because it becomes extremely painful!
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