This moderated forum is to support the needs of patients with stage III melanoma, as well as to answer questions about treatment options and what to expect.
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- Joined: Fri Apr 26, 2019 12:16 pm
I was diagnosed with Acral Melanoma in July 2018 with an open sore tumor at the base of my right big toe. PET scan showed a second tumor in a sentinel lymph node in my right groin area. At the time (two different opinions) the treatment recommended was surgery to remove tumor on foot and remove all the lymph nodes at the top of the leg and adjacent abdomen area with follow up immunotherapy.
I elected to not take the recommendations and proceed with a more wholistic approach. I took an approach of trying to starve the cancer cells by eliminating most of my carbohydrate intake and going on a strict Ketogenic diet. Over 6 months I lost 50 lbs (from 210 down to 160) and feel very healthy. I must say that through two PET scans (3 months apart) the tumors stayed pretty much the same and did not add any. One month after the second PET scan I decided that I would switch to a more vegetarian diet to better support my immune system. I don’t know that decision was the best because from that point forward my two tumors have grown and at my last PET it was obvious on the scan.
As of today I am on the Ipi/Nuvo immunotherapy protocol and going back to my Keto diet to reduce the carb intake.
So my question to the forum is from anyone who has gone through this immunotherapy regimen for Acral melanoma, what can I expect to see if the treatment is working?
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- Joined: Wed Jan 02, 2008 12:09 am
Actually diet has little to do with melanoma. Increasing exercise has been shown to raise the immune system and be a benefit. Acral is different than cutaneous and response to the immunotherapies is mixed. Although rare, ask if the tumor was tested for BRAF. Some patients do have that mutation and then the braf/mek drugs can be plan B. if needed. Recommendations for diet would be to stick to organic produce and avoid red meat. The IPI/NIVO combination can be quite toxic, so be sure to report any signs of illness to the doctor early on. Let us know how you are doing.
Catherine M. Poole, President/Founder
Melanoma International Foundation
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