HaoleBoy
Senior User
Joined: 19 Aug 2008
Posts: 135
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 Posted: Mon Nov 09, 2009 3:45 pm Post subject: Re: Advice |
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Athelete, I'm sorry to hear that you and your husband are going through this journey with melanoma.... If I had to put a bottom line up front, I would say -- based on the information you provided -- that your husband is likely Stage 3A with an unknown primary source.....
Melanoma with an unknown primary source happens in about 8 - 15% of the time in diagnosed mel cases (on that order of magnitude from what I've read).... What happens is that the patient's immune system recognizes and attacks the cancer which causes it to totally disappear or regress (i.e. the original melanoma primary tumor was killed off and went away) but not before it metastasized and spread melanoma tumor cells to his lymph nodes....
The PET/CT scans have ruled out the existence of macro-spread to organs and bones (did you say if he had a bone scan ?) but does not necessarily rule out the possibility that microscopic melanoma cells may have further spread, but note the same applies to me at Stage IIA as it does to your husband's case at Stage IIIA (and again, this is only what I'm deducing from your information)....
At this moment, your husband is No Evidence of Disease (NED) and there are basically two options at this juncture for Stage IIIA patients rendered NED by surgical excision and/or Completion Lymph Node Dissection (CLND) -- the latter applicable to your husband... These options are:
1. Watch and Wait (which is often the case)
2. Take adjuvant interferon which is immunotherapy that, in some patients, jump starts the immune system (melanoma is very much an immuno-sensitive cancer).... There is alot of controversy and debate about interferon.... Most of the American studies have found that interferon does not result in any overall survival benefit, but does impart about an additional 9 month Relapse Free Survival benefit compared to patients in the studies' control arms who weren't on interferon.... But the treatment is hightly toxic and costs about a year of quality of life ...
The first 30 days are the induction phase and is given in a resident hospital setting; this is the high dose phase.... There is then an 11 month low dose maintenance phase at home.... The treatment affects different people differently, but alot of people have to quit the program because the side effects are so bad; a minority breeze through the treatment without any major problems.....
On the other hand, there are people on other melanoma forums (fora ?) which I participate in who swear by interferon and are still alive 10+ years later NED at Stages IIIA, IIIB, and even IIIC...... But from my experience, most of these people also had ulcerated primary melanomas and recent research has revealed that for some reason, folks with ulcerated primary melanomas tend to respond better to interferon treatment than people with non-ulcerated melanomas... If you scroll through this forum's pages, you will find a post I made about a month + ago that talks about this .....In your husband's case, since they can't find the primary tumor, there is no way to know whether or not his primary tumor was ulcerated....
Not sure I would go with interferon if I was in this position...
Insofar as the future is concerned, I can't say... the survival stats at State IIIA are better than the stats at Stage IIB and Stage IIC at five years, and melanoma is a vastly variable disease in people because everybody's immune system is different.... Some people relapse fairly quickly and, unfortunately, progress further and die, others remain NED for 10+ years and counting.... Sam Donaldson, an American network TV news anchor (now retired) was diagnosed Stage IIIA (or Stage IIIB) 14 years ago is still alive and NED .... People are not statistics.....
You may want to research and consider whether or not your husband should embark on a supplement program designed to strengthen his immune system, and again, melanoma is sensitive to a patients' immune systems IF the immune system can at least recognize the melanoma as foreign and attack it.... Mel is quite sneaky and melamona tumors express certain enzymes, chemicals and cells which disarm the patient's immune system.. It would seem to me that your husband's immune system was at least able to recognize the mel as foreign and did in fact attack it fairly robustly with T-killer cells....
I know there is controversy about this and I AM NOT saying that supplements, or any other "alternative therapy", should EVER be a substitute for frontline therapy (surgery, adjuvant treatment, et al).... But there may be value in it as complementary/integrative therapy with conventional oncology/surgical oncology practice. Some of the major U.S. Cancer Centers are now studying the effect of these supplements on human melanoma cell lines in petry dishes and in scientific mouse models, and initial results do indicate a certain efficacy in those models.... But of course, humans are not petry dishes nor mice and bio-availability and how these things metabolize in our very human system may differ....However, I do highlight that there is some promising data coming in from Phase I Human Trials on curcumin and pancreatic cancer patients at MD Anderson in Houston, Texas. ... I have posted articles about these supplements with supportin literature on this forum so just scroll through and search for it....
If it is not contraindicated by anything or any other pre-existing condition I have, basically arthritis in a hip -- I was pretty healthy before getting melanoma cancer -- I say why not ? If it doesn't hurt, it may help.... but these things do cost money of course....
I take the following (and again, I encourage you to research this and for you and your husband to draw your own conclusions.... I'm not a doctor at all, merely a patient who is trying to do what I can to place myself on the fat side of the survival curve at my stage):
-Curcumin (with 5 grams bioperine so it gets through the stomach lining)
- Resveratrol
- Green Tea
- Shiitake mushroom extract
- CoQ10
- Garlic
- Krill fish oil (rich in Omega 3)
- Celebrex (prescription drug for my arthritis but a COX-2 inflammatory inhibitor and COX-2 is a known pathway for cancer progression)
I would also recommend that you consider buying Dr. Steven Servan-Schreiber's book "Anti-Cancer: A New Way of Life"..... I posted a book review of it in this forum (scroll through to find it), and also a link to a video interview with Dr. Servan-Schreiber who has had brain cancer.... This book was a best seller in the US when it first came out in September 2008....
Good Luck Athelete to You and Your Husband,
Aloha
Haole Boy (aka Bob)
Stage IIA
Currently NED
Oahu, Hawaii, USA
2.40MM Breslow Thick Superficial Spreading Melanoma on the bottom of left foot's 2nd Toe, Diagnosed 1 August 2008, Wide Local Excision (amputation of toe) and Sentinel Node Biopsy (1 node left inquinal groin) performed at Siteman Cancer Center, Washington University, St.Louis, Missouri on 21 August 2008, SNB negative for melanoma metastasis and WLE had clean margins without any detectable melanoma cells. |
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