Melanoma
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b-raf and melanoma

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. thank you,

Asked 7 years ago by orcaspoet
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spillingtheink 7 years ago

My partner has stage 3c melanoma. We just learned of a clinical trial here in Dallas for a vaccine for melanoma. Additionally there is a clinical trial for Interferon and Yervoy. I read a book called Anti-cancer, and I learned a lot about what that author researched. From the book I decided we have to fight inflammation and boost immune system. Green tea capsules, tumeric capsules, flax seed oil capsules, Q-10, coral calcium are the supplements we've added to our diet. These are herbs and supplements that are said to fight cancer and/or boost immunity. Additionally we've gone to organic omega 3 enriched milk, grass fed only meats, organic fruits and vegetables. We are staying away from all processed foods. My understanding is we all have cancer cells and our immune system seeks out these cells and destroys them, so we've boosting her immune system and trying not to eat anything bad so the immune system can focus on fighting cancer cells instead of fighting the crud we were consuming. I am a complete rookie when it comes to this. So don't take my word for it without doing your own inquiry. I've also gotten Shannon's name on prayer groups all over the place. Meditation is a good idea. Keeping a positive frame of mind is really important to our immune systems. Apparently MD Anderson in Houston has a melanoma specialty department. I haven't looked into that yet. Best luck to you and may God let the way be open to your healing and answers.


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Posted 7 years ago

Hi Cathy,

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:
http://www.foundhealth.com/melanoma/keith-block-md

http://www.foundhealth.com/melanoma/mark-l-renneker-md

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.

Regards,

Mike

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ladydi 6 years ago

Mike, thank you so much for being so caring and positive and sharing all you know. I am a 56 yr old very healthy female who got melanoma last yr...2012 and have had 4 surgeries and radiation since. I am stage IIIC I think and carry the Braf gene. I've not had any problems and take almost all the vitamins and supps you mention except for melatonin. I have almost completed 12 weeks on Essiac vegecaps also. I have another CT scan in a week and a half which will be the first since taking the Essiac and doing radiation. I'm believing to be cancer free. I eat cancer fighting foods everyday and like you have done most of the research myself and learned things by asking questions. My melanoma started as a mole on my back which spread to 2 lymp nodes under my left arm so 19 were removed. At my 3 mth scan more was spotted up under my collar bone so that was also removed then the radiation. I can relate to all the feelings you mention your wife having and would cry quite often but never stay in the negative for long. I have very strong faith in God and a great supporting family and probably hundreds of friends praying for me per facebook, etc. so most of the time I've been able to keep my peace but it has been a very scary experience. I'm so very thankful for people like you who are willing to encourage and share. When I first started researching I would feel sick, scared and helpless at the negative things I read then I would just have to not even read anything about it so I could keep my peace. I too will have a testimony of this thing being beat when it's all said and done and want to also be an encourager as you are. Again...thanks so much and may God bless you and your wife immensely for taking the time to care and share. Diana Powell

MRosenthal 6 years ago

Thanks Diana,

I'm so glad to hear your story and the proactive nature of your fight! I have no doubt you will beat this and go on to inspire others. Melanoma can be beat, even in its latest stages, and its important that people facing this challenge know that!

Mike

ladydi 6 years ago

Thank you!!!

Posted 6 years ago

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, ejcav_ar@yahoo.com

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, ejcav_ar@yahoo.com

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MRosenthal 6 years ago

His name is Gustavo Moviglia and if you Google him, you will find him very easily. I have never worked with him, only heard good things about him from doctors that I trust.

 
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