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February 17, 2013 at 12:09 am #21025Chuck BParticipant
I have been lurking on this site for several months and now find myself at a crossroads. The quick facts about my situation are as follows.
– very active 56 year old male in otherwise excellent health
-8/11 noticed a small bump behind my r. ear. Misdiagnosed as a benign cist.
– 3/12 bump behind ear grew and a new one in front of same ear.
-6/12 biopsy and diagnosed with metastatic melanoma. Primary site on top of scalp.
-6/12 surgery removed primary , Perotid gland and 59 lymph nodes from scalp down to neck.
59 lymph nodes removed, 4 positive for Mel in front and back of r ear.
– currently NED
I signed up for the Ipi-interferon trial and unfortunately rolled out for the interferon. I did decide to proceed with the interferon in September. I am finishing the 6 month mark and having serious thoughts of discontinuing for all the typical reasons.
I have read the trial reports extensively and cannot seem to make sense of the conflicted
results. While my Onc remains fairly neutral he indicates the intervenous portion of Interferon treatment is the most beneficial, the continuing low dose…not so much.
Realizing the extremely marginal benefit of interferon (if any) is there any documentation
about cutting the treatment short and the result? Is six months enough?
Chuck BFebruary 17, 2013 at 1:30 pm #59167Catherine PooleKeymaster
The evidence is conflicting on interferon because many of the studies were conflicting. I think the statement by the American Society of Clinical Oncology (one of the largest oncology groups in the world) that interferon “does not extend overall survival” is important to consider. There was one study that showed if anything the three months intially of high dose would be beneficial rather than the extended program. Overall survival is the endpoint we all hope to see happen. IPI may take the place of interferon as the adjuvant therapy for melanoma and there are others coming along. You have to do what you think is best for you. Quality of life is a huge consideration. Let us know how you are doing.February 17, 2013 at 6:20 pm #59168ChrisssieParticipant Hi Chuck, just to let you know, I was dx Stage IV in February 1998, I did the first month high dose of Interferon and then should have continued on a lower dose for the next 11 months. After 6 months I discussed with my Dr about stopping and he stated that as at that time there was no knowing what would be most beneficial, just doing 1 month high dose, doing high dose and then the low dose for 11 months or just low dose for a year. He felt that as i had had the initial dosage and the following few months lower dose, that I had ‘given it my best shot’ I stopped the Interferon and then had the follow up checks for the next 5 years. I have been NED since.
I hope this helps inform your decision as to what to do.
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