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November 14, 2014 at 4:01 am #22245alaskanmegParticipant
I was diagnosed with stage IIIa in Feb 2011. I had a Wide Lesion Excision on my back. The first oncologist barely looked at my stats, but he took me to the infusion room and set me up for interferon a chemo.
I had read about that particular chemo was like having the flu for a year. Overall survival doesn’t change. So I went to a different oncologist and she was just fine with me doing the “Wait and See” approach. My first year check up showed I was “clean”, but I found out that I had Multiple Myeloma, a cancer of the plasma cells. GREAT
So I had a tandem Autologous Stem Cell Transplant in Dec 2012 and Apr 2013. It’s been over a year now and my blood work is awesome.
Sept 2014 I noticed a lump on my back. It was itching, then I noticed another lump on my back closer to my WLE. Had them excised on 28 July. The lumps were near my first excision and they had their own blood supply. 2 Oct had another wide lesion excision. Path report said clean margins. PET/CT came out clean.
My case was sent to Fred Hutchinson to see what the experts think. Can’t do interferon because after the stem cell transplants, I wouldn’t be able to tolerate it. No problem there, never would do interferon anyway. The Multiple Myeloma and Melanoma specialists determined I was just to be monitored. Great for me!
Went to my local oncologist and she was a bit dour. Sheesh, that was a blow! She said even though everything came out clean, it still might have escaped into my blood. We will be watching for signs of it in my lungs, liver, brain and bone. Swell. So now I’m trying to figure out about a recurrence after a recurrence. I can’t find any research about that.
Does anyone have any experience with such a thing? Leave the Multiple Myeloma out and just contemplate the recurrence after the recurrence. Oh yeah, my margins on the second WLE were “close”. I’ll find the path report if I need to give exact details.
Guidance please…..November 14, 2014 at 1:59 pm #65852Catherine PooleKeymaster
If your oncologist was not very helpful, I would get another opinion. This is complex and I would want to know if your tumor was BRAF positive or negative. I would also question the eventual use of immunotherapy. Can you travel to UCLA or another center of excellence, where there might be experts in both diseases? You would probably be ineligible for clinical trials too so getting a good opinion is important. Let us know what you find out.November 18, 2014 at 6:57 am #65853alaskanmegParticipant Thanks for the reply. I am BRAF positive. My oncologist here in Anchorage contacted Dr. Joe Mikhael at Mayo Clinic/Scottsdale when I was found to have Multiple Myeloma. She thinks that I should go to an Outside (lower 48) melanoma specialist. The VA (Veteran’s Administration) is paying for my medical care, and that is such a blessing. However, I can only do what they will approve.
I will ask to go to a Melanoma specialist Outside, but I might just end up getting a Tele-Medicine interface. I think that would make everybody involved a little bit more comfortable in the treatment plan for me. As far as immunology treatment, I’m Stage III A, so nothing is indicated. However, I will ask about getting the BCG vaccine. Thanks for your support, MegNovember 18, 2014 at 12:31 pm #65854Catherine PooleKeymaster
Let us know what you find out and yes, we are here to support you, so keep in touch.
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