I am told that I have a rare type of melanoma. A DNA study of the tumor shows that the cancer is negative to both the C-KIT and B-RAF mutations. Because of this I was told that the new medicines and treatments that are being used and those in clinical trials
will not help me. I have had radiation however the cancer grew right through the radiation. I think I am now in stage IV melanoma. It has not gone to any vital organs yet. It is in my face and neck. Do you have any information that could help me. I would greatly appreciate any help or advice. I am getting discouraged.
Thanks for connecting. I completely understand how this can get discouraging. melanoma is tough to battle when it gets to the more advanced stages. However, it can be beaten, and many, many people have beaten it and are living. Many of those people beat it long before any of the more recent therapies have come out. So just because you can't use those particular treatments, doesn't mean at all that you can't beat it. Frankly, there are hundreds and hundreds of treatments for melanoma, and no one treatment works for all people. In fact, even the most successful treatments still only work ( meaning fully cancer free for 5 or 10+ years) for a small % of people. And each one seems to work for a different type of person -- to the point where the doctors unfortunately can't point you to the exact treatment that is sure to work for you. I cite that not to discourage you but to encourage you -- there are lots of other treatments to try that might work for you. I am an optimist, and I believe that if you work hard and fight, you can win. I really believe that and I've seen it work. Also, I believe that with late stage melanoma, you have to fight with "all your guns." Meaning, its a all-out-war, and you should not hold back. Change your diet. Work on mind-body exercises. Take herbs and supplements. Do western treatments. Exercise. Etc. Etc. Use all of the tools or "guns" at your disposal to battle, because I beleive each one of them can and will help you in your fight.
If I were you, I would connect with two people who I've posted about on the site:
They can both evaluate the type of melanoma and help you navigate the treatment options and doctors to help figure out which ones might be most likely to succeed. There are also many other tests beyond B-RAF and C-KIT than can help narrow down other treatments. Both of those people know the tests and can help get you connected with them.
There are also many options outside the US. There are clinics in Mexico (which I generally don't recommend as a first step, but I do know some people who have gone there and had success). There is a doctor in Argentina and one on Germany who have both had very good success from what I understand beating "incurable" forms of melaoma.
Bottom line, it's ok to feel discouraged, that is only natural. But don't stay discouraged because YOU CAN BEAT THIS!!! I can't tell you how many times along the path in helping my wife beat the stage 4 melanoma she was facing, we hit bumps in the road, points of indecision, points where we lacked direction, etc. Those were dark and challenging times that felt like we'd been punched, and knocked down on the ground. The key though, is to know that you can win, to get back up, and to keep searching for the answer.
I'm around and available any time if you have more questions, etc.
Dr. Rosenthal, you mentioned about a doctor in Argentina that had very good success in incurable forms of melanoma, could you let me know his e-address or post addres to contact him. Thank you very much indeed, firstname.lastname@example.org
Dr. Rosenthal, menciona en su comentario que hay un medico en Argentina que han logrado exito en el tratamiento de melanoma, es posible conocer su direccion-e o postal para contactarlo. Muchas gracias realmente, email@example.com
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