I find it much easier to read and comprehend patient stories than the clinical-research-speak that is quite predominant on the Web. After reading a few stories I think my case is fairly typical. I recently had a mole removed from the bald spot on the back of my head on 6/5/12 (my friends were telling me to get it looked at and nobody would have seen it had it been elsewhere--but then again it would have been exposed to less sun), and it was a 1.3mm deep, nodular, level IV melanoma. I had the wide area excision and sentinel node biopsy performed 7/3/12 (that was a long wait for me!).Turns out I had two sentinel nodes on the right side of my neck, one just before and the other below my right ear. One of them had a micrometastisis and the other was clean so stage IIIa. I have been offered and rejected interferon. No PET scan has been performed. I have been offered to participate in a clinical trial where they will perform a CLND. I believe I am developing lymphadema from one of the two nodes as the sutures have begun to leak a clear yellowish fluid. The sutures on my head opened and I am going to have plastic surgery on 7/18/12 to close it.
The thing that is hard to swallow and I see the same thing from other people is the "wait and see" approach instead of being proactive. The desire to "do something about it" is big! I have read that I could try Leukine as an adjuvant treatment if my insurance company will pay for it. I have researched the various clinical trials throughout the USA and I don't see any applicable to IIIa that have hope of fighting the disease. So right now I am spending a lot of time reading up on this disease. Thank God for the internet! It must have been horrible before the web for patients to try and understand what they were up against. I would love to hear from people that are aware of clinical studies for IIIa.
Take care! – Paul.