Melanoma
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My brother has stage 4 melanoma and had 2 weeks of radiation to his brain and now will start on zelboraf tomorrow. Any advice for us?

Asked 7 years ago
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vikdad1
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Posted 7 years ago

Hi there- This is a response from FoundHealth user Jackie Sorkin.

Hello, I know how hard this situation is for your brother and family and I know how important it is to keep positive and start searching for more info. My dad has stage IV melanoma as well and has been battling for several years with positive results, essentially beating this a$$hole disease. We found that alternative treatments and western medicine , fantastic surgeons, oncologists and doctors who really care for my dad and want him to beat this monster are part of his success. Here is what he has done- once the cancer metastasized to his lungs nearly 4 years after an initial surgery to remove a tumor on his neck, he went to Mexico to Chipsa hospital and had a combination of both gerson diet ( immune system building) and Coley's Vaccines- This is fever therapy- the body fights the tumors. He also had some special shots made with his blood- called autologous tumor cell therapy ( I think thats correct) My dad had 3 surgeries in 6 months to remove these metastatic tumors- he just finished 5 weeks of radiation 2 weeks ago and in 4 weeks he'll have scans again ( praying for clear scans) The last year has been an active one for melanoma and metastatic patients- lots of new vaccines and drugs and clinical trials are out there for you to check out. Once I was able to stop all the crying and decided to tell my fear to F off, we were able to focus only on my dad and keeping his spirits up and keep him in fighting form. He has been beating this disease. Your brother can too! I will only advise to get second opinions when you can. Changing HMO's and Doctors and Oncologists over this process are what also helped save my dad. His initial oncologist was cold and told him he was totally inoperable and once he left him and the HMO to another- his new cancer team found he WAS operable and fought for him. When someone tells you guys NO- Find a YES! Don't listen to the first opinion- always search for more, don't be afraid to challenge the Doctors and set up Google Alerts so you have the latest information on Melanoma sent to you as it happens. I wish your family and brother peace and strength and although we've never met- you and your family are in my prayers. YOU CAN DO THIS GUYS! BELIEVE, BELIEVE, BELIEVE!

Love, Jackie Sorkin

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misumali00 7 years ago

Thank Jackie. He started on Zalboraf today which I hope clears things for some time and that soon they'll be some new meds that work better or even a cure! I believe.

Posted 7 years ago

Hi,

I know one person recently who had a brain met and was treated in Seattle and it went away. I will try to find out what treatment was used.

In the mean time, a few thoughts:

1) Check out my response in the following thread, it has a lot of good info for you to read about things that can help:

http://www.foundhealth.com/questions/desperate-mom-looking-for-suggestions-on-diet-supplements-and-integrative-treatment-for-19-year-old-son

2) Have the docs considered Gamma Knife surgery? I've heard good things about the results for brain mets and melanoma.

3) Check out Alpha Lipoic Acid - it crosses the blood brain barrier and has been shown to cause melanoma brain cancer cell apoptosis (cancer cell death).

I hope that helps.

Regards,

Mike

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misumali00 7 years ago

Thanks Mike...I'm going to call his oncologist today and ask about the Gamma Knife radiosurgery. I know he had radiation for 2 weeks but not sure what the outcome was.

He started Zalboraf yesterday and I've got my fingers crossed that it works like it is supposed to.

I'm looking at getting him on some Maitake mushrooms, D3 and the Alpha Lipoic Acid.

I've already started taking these supplements as soon as he was diagnosed. With my brother, I have to suggest a little at a time. He will only listen to his oncologist at this point.

Thank you!

MRosenthal 7 years ago

Great! I agree with your strategy - its overwhelming to process so much information at one time. This is why, IMO, its ideal to have a cancer "team" of both the person fighting the cancer, and their advocate who can do the research and process and digest the information and feed the most pertinent pieces in a manageable way.

BTW, I did find out that the patient I was referring to above did high dose Interlukine II.

Let me know how else I can help.

Posted 7 years ago

I am going to call my brother's Oncologist tomorrow. Someone told me that most oncologists don't want herbs and supplements used in conjunction with chemo drugs because not enough studies have been done. He is day #3 on the zalboraf. He goes back to the radiation doc tomorrow and his oncologist on Monday. He is tired and but he is hanging in there and staying positive. He told me he is taking care of himself and he will get better. I have moments where I feel helpless. But then I tell myself to BELIEVE. This is so damn hard!

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vikdad1 7 years ago

I can't imagine how difficult this is, but my thoughts are with both you and your brother. stay strong

MRosenthal 7 years ago

I actually agree that you have to be careful with herbs and Western treatments at the same time. Sometimes they can actually help the good effects, sometimes they can hurt. My wife and I decided that she would not do any herbs during treatment - only in between treatments and only to help manage side effects. She only started the herbs/supplements to fight the cancer after the Western treatment was over. But she did start them right after, and has been doing them daily for the last 5 years (and is still cancer-free after being stage 4). There are definitely some good natropathic/herbal things that can be done to manage the side effects of chemo's and other western treatments. Acupuncture really works, though sometimes you have to try a few acupuncturists to find one that works for you. My wife tried three before finding "the one." But when she found the right one, she said it was amazing. It really relaxed her, relieved nausea, etc. The other thing that helps is to detox the liver and kidneys in between treatments. Those are the body's detoxification organs, and they get overloaded in chemo and other western treatments, leading to nausea. My wife went through a few days of detox after each round of chemo, where she would take a few supplements that would help clear out the kidneys and liver. This also helped a lot. I hope your brother feels better soon and my fingers are crossed about the treatment.

misumali00 7 years ago

Well, the oncologist told him he'd be on Zalboraf for the rest of his life. So in between treatments might be tough. Acupuncture sounds like a good thing. I love it myself. On top of all of this, my Mom was diagnosed with stage 2 Breast Cancer and is almost finished with her 4th week of radiation. 2 1/2 more to go and then she'll be on arimidex for 5 years. The news about my brother has been really hard on her and my dad but they are staying positive. One piece of good news is that UCLA discovered how the melanoma eventually gets around the zalboraf and comes back stronger, so hopefully they'll have a way to stop that soon. One day at a time...thank you for all your support. It helps! Here's the link for the article. http://newsroom.ucla.edu/portal/ucla/PRN-scientists-uncover-mechanism-for-229980.aspx

cheryl.stratos 7 years ago

I was diagnosed with Stage IV melanoma November 2009 and I have been on Zelboraf for 29 cycles. I am being treated at UCLA. I have been NED for the past 10 months. I had the opportunity to experience every side effect the weight loss, high fever, rash, skin peeling off, total loss of hair (all over) and sores popping out all over my face. But is was all worth it! I am still here.

I also used Reiki to help with nausea, ate lots of seaweeds, took vit. D, drank wheat grass, and loaded up on all the green leafy bright colored veggies to help with my energy level.

Tell your brother healing thoughts and keep away from bad JUJU. This is a mind game as well. I have also keep a document of the process and list the latest developments on a FB page Fighting Melanoma (http://www.facebook.com/pages/Fighting-Melanoma/252483701462665)

BTW great website!

Posted 7 years ago

Hello,

My wife has the exact situation as you mentioned above. She went through 15 days of radiation and was put on Zelboraft meds. Let me tell you that Zelboraft isn't a cure for melanoma. It only works for a period of time with horrible side effects. It is very painful for many reasons. Days she wasn't able to walk, Back and torso pain, There is another form of skin cancer called Squamous Cells that appear usually on the face or torso that the dermatologist must cut off which is due to the Zelboraft med. 3 months after being on the medication it stopped working and the melanoma found a way around it. There are 2 types of melanoma one that has the B-raft gene that the Zelboraft works on but there maybe another form of melanoma that the Zelboraft will not work on and will make it grow at an excel rate. That's what has happened to my wife right now... The docs say she doesn't have much time left . We are heading to the cancer institute in Tampa Florida tomorrow for a possible blood transfusion.. I hope all is well with you and hope u beat it.....

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MRosenthal 7 years ago

I'm really sorry to hear that. Let me know if there's anything I can do to help.

Posted 6 years ago

my husband has stage 5 and he is on zalboraf, it has been positive so fr but in the last month he has had a lot of joint pain and loss f appetite. He has also lost a lot of weight, but he is positive and the cancer has not grown.

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jules 6 years ago

Has anyone got any positives bout this illness and its treatment?

 
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