My 19 year old son, Michael, has Stage 4 M1c Melanoma as of his latest PET/CT Scan on 11/7/11, which showed that 2 tumors have grown in his spleen and 2 possible minute tumors near the original site of his right neck. He is currently a second year student at Cal Poly Pomona.
History: He was originally diagnosed with Melanoma in March 2011. Michael had two surgeries in April & June 2011, of which 15 lymph nodes had melanoma tumors up to 1.1 cm of the 65 lymph nodes removed, from his right neck. At this point, he had Stage 3C Melanoma. Michael started Sylatron, which is Pegylated Interferon, on July 24, 2011, which was approved by the FDA in March 2011. Michael choose not to do radiation. He completed 16 weeks of the Sylatron until it was determined that the Sylatron was not working and the Melanoma had metastasized. Michael’s oncologist, Dr. Gregory Daniels of UCSD Cancer Center, then had Michael’s tumor tested for the BRAF Gene Mutation Analysis (negative) and blood tested for the Human Leukocyte Antigen (HLA)-A2-peptide complexes (positive). Since the HLA – A2 came back positive, it is a possibility that Michael could be put on one of the clinical trials for Adoptive T cell therapy. (Adoptive T cell therapy - ACT - consists of isolating tumor reactive lymphocytes from a patient, growing and activating them in the laboratory, and infusing them back into the autologous patient). He is going to the National Cancer Institute to meet with them to determine his next treatment option after he finishes this quarter in 2 weeks. Michael will not return to school this next quarter knowing it is imperative to start a new treatment as soon as possible.
Up until now, he has modified his diet to consuming more whole foods but not to the extent of my liking. When he was home for the summer, we were able to keep an eye on his diet. But since he has been away at school, I know he has not stuck with the plan.
I would like him to start an alkaline diet plan with daily juicing, additional natural supplements and incorporating integrative treatments such as mindfulness classes and acupuncture into his routine. We have tried to eliminate as many toxins from his daily life by using safer body and cleaning products. I feel that he may have additional exposure to toxins when he surfs. Michael has been surfing since he was 10 years old, and it is just as much a mediation activity as it is exercise for him. Therefore, I cannot take that away from him. So, any pointers to help eliminate/reduce toxins would be appreciated.
Thank you for taking the time to read Michael’s Melanoma story. I would deeply appreciate if you could let us know what your Melanoma Plan has been. By reading what others have done to make their Melanoma Plan successful will only confirm in Michael’s mind that he should make those same changes. Take care.
"Life's Perfect Moments Are Now"
Thanks for reaching out. I don't mind at all. Melanoma is a tough battle and I'm always happy to help anyone in the fight. If your son is willing to travel, there is a fantastic doctor who can help tailor or protocol of non-western treatment (herbs, supplements, diet, exercise, mind work (visualization, etc.) etc.). He is an MD outside of Chicago who has an integrative cancer treatment center and is one of the smartest docs I came across (and I turned over a lot of rocks all around the world). Here's his contact info:
If your son doesn't want to travel to see him, he may be able to do a consult over the phone. If none of that works, I would be happy to send you the protocol my wife takes which Dr. Block helped put together -- she's almost 5 years of cancer-free after stage 4 melanoma, and to this day she has changed her diet and taken a battery of supplements every single day. There is no doubt in my mind these things are helping her and I did a lot of research on each of them to make sure there is good science or clinical experience around them out there.
As far as diet goes, don't know if you saw this page (http://www.foundhealth.com/melanoma/diet), but I wrote a bit about it. There's no doubt in my mind that diet plays a part in the fight. My wife actually went on a macrobiotic diet for about 8 or 9 months when she was done with the treatment. I had spoken with several people who said they had done macrobiotic when they were fighting cancer and it really helped them. My theory is that it boosts the immune system and is easy on the body's digestive system, saving energy for the cancer fight. Removing toxins as you write below, is another way to help do this.
I researched Dr. Rosenberg's ACT treatment 6 years ago and at that time, he was having a lot of good success with it. I imagine he has improved the protocol since then, so I think you're making a good choice. As I'm sure you already know, it takes a pushy, caring mom (or brother, father, etc. -- an advocate) to help navigate the morass of the medical system, and help get your son the best treatment. I spent a lot of my time for a year helping my wife and advocating on her behalf (hours and hours a day) so the road before her was clear and smooth and she could focus on her fight. I can see from your notes below, that you are doing the same thing, and I commend you. I also did a fair amount of research on treatments being done outside the US and would be happy to share those things.
Here are some other links to some things I wrote that I think your son could benefit from below. Please let me know how else I can help. I am happy to talk live with you and/or your son if you'd like.
http://www.foundhealth.com/melanoma/herbs http://www.foundhealth.com/melanoma/mind http://www.foundhealth.com/melanoma/melanoma-and-positive-attitude-and-thinking http://www.foundhealth.com/melanoma/body
Regards, and please do let me know what else I can answer or how else I can help,
I will get you her list. A lot of it now is Dr. Block branded, so some of that won't help you until you see him. However, the most important ones based on the research I did were (I included my fav brands):
Melatonin (20mg/day - http://www.amazon.com/Pure-Encapsulations-Melatonin-20-capsules/dp/B00164RY4O/ref=sr11?ie=UTF8&qid=1323043986&sr=8-1) Maitake D (60 drops per day http://www.amazon.com/Maitake-Grifron-Pro-D-Fraction-liquid/dp/B00014ECAE/ref=sr12?s=hpc&ie=UTF8&qid=1323044011&sr=1-2) Vitamin D3 (at least 1000 IU/day http://www.amazon.com/Pure-Encapsulations-Vitamin-D3-5000/dp/B0017Q948U/ref=sr120?s=hpc&ie=UTF8&qid=1323044030&sr=1-20) Cellular Forte (http://www.amazon.com/Enzymatic-Therapy-Forte-Inositol-tablets/dp/B00012NGCG/ref=sr15?s=hpc&ie=UTF8&qid=1323044105&sr=1-5) Immpower (http://www.amazon.com/American-Biosciences-ImmPower-30-Count/dp/B003PUDAHC/ref=sr12?s=hpc&ie=UTF8&qid=1323044197&sr=1-2)
If he did no other supplements, I would suggest at least doing those 5. They had the clearest anti-melanoma and anti-cancer research that I found.
As for the diet, what I did was I hired a private chef trained in natural cooking to prepare food for tina. There are a number of schools across the country who's programs teach their chefs how to cook healing foods. Natural Gourmet in NYC is one, but there are a few others. I would find their grads in my area and reach out to them. It was a little pricey (about $200/week for the chef + food cost) but we had enough meals for both of us for the whole week. The food was excellent, and I gave the chef a list of foods that help fight cancer and melanoma and they integrated them into the menu. Key foods are: Brassicas (broccoli, brussel sprouts, cabbage, watercress, etc.), Blueberries, Green Tea, Garlic, Apples, Kale, Tomatoes, Chinese Dandelion, Cherries, Raspberries, Grapes, Ginseng. Fresh, raw fruits and veggies are best. Food that create an inflammatory effect are not great (beef, etc).
The other thing that we used foods and supplements for, was to help manage the side effects of treatment. Western medicine can help with most, but there are some that they don't know how to treat, and I found some great solutions elsewhere. Once you guys have chosen a treatment, lets get in touch and I can share those things.
As for non-US centers, I looked into the Mexico clinics a bit. There's a researcher named Ralph Moss who has review those clinics in his research. There's another woman I was working with who took her father to the Chipsa clinic who I'm sure would be willing to talk with you -- just tell her I sent you http://jackiesorkin.blogspot.com/2011/08/cancer-story-you-should-read-kicking.html. There are also two doctors in German and in Argentina who were on my "next step" list if the treatments in the US didn't work. Happy to share their info if you need.
Please let me know what else I can do to help. I'm also available by phone if you want to talk through any of this.
First of all, your husband can beat this! I hope you guys don't let anyone tell you otherwise. There are so many resources out there that can help, not the least of which is his own ability to fight and win. You two are 100% right about keeping a positive attitude. I don't know if you saw my article on it (http://www.foundhealth.com/melanoma/melanoma-and-positive-attitude-and-thinking) but in my research I found clear evidence that a positive attitude can absolutely affect the outcome.
As for the D3, I've been told that you want to take a min of 1000 IU/day. My wife is actually taking 5000 IU/day, as prescribed by Dr. Block, who I highly recommend (http://www.foundhealth.com/melanoma/keith-block-md). He works very well in conjunction with your primary oncologist to support the treatment plan, and he won’t do anything that would work against the primary treatment.
As for other supplements, I would also suggest at a minimum, the other supplements I mentioned in my post above: Melatonin, Maitake D, Cellular Forte, Immpower. They all have very good research in my opinion that suggests they can help in the fight against melanoma.
The fact that you are out there looking for solutions is very good. Anyone fighting melanoma needs the solid support and advocacy of someone who loves them. The medical community has some great solutions, but it is a morass to navigate. It makes it very challenging for someone to gather their strength to fight, and also navigate. If you help with the navigation, and he focuses on the fight, you will be a winning team! Also, I saw my wife’s spirit ride the roller coaster from very strong to very weak many times in her fight. It was in those times of weakness and fear, that happen to everyone fighting this, that my unbridled positive attitude and belief in her ability to win, and my articulation of it, helped pick her up off the ground and get her “swinging” again. I have no doubt you are doing the same for your husband.
I want you to know that I am available by email or phone any time. When my year of helping my wife beat this ended, I swore that I would do anything I could to help anyone else who was facing this. So…. If you want to brainstorm doctors to go see, discuss different treatments, talk about other strategies we used, discuss options I found outside the US, etc. etc. please don’t hesitate to contact me. It makes me very happy to know I am helping others in this fight.
First, I want you to know how much I really appreciate you taking the time to answer my request with such care and detail.
My son, Michael, has a screening appointment at NIC on December 15th to see if he is a good match for a few of their Cell Therapy Trials. We are being very positive and that he will get into a trial that is a good match for him.
I am going to order Dr. Block’s book, Life Over Cancer, and we do have interest in taking Michael to Dr. Block, but we need to concentrate on the NIC visit first.
We would love to have a copy of the protocol that your wife takes daily. I know that Michael should be taking more supplements, and once he is home next week, I will add those to his daily intake plus changing his diet to be as vegan or macrobiotic as he will agree to. Michael is currently consuming brazil nuts (selenium), freshly ground flaxseed, a mushroom supplement, a wheat grass supplement, plus protein and fruit smoothies daily. Since your wife has been taking these supplements for 5 years, I am sure you have your favorite brands or supplier and we would love to hear about them.
My husband and I lived in Munich, Germany for 3 years in the late 1980s. My daughter who is 23 was born in a German Hospital. I am somewhat familiar with their general medical practices. So, we are interested in any additional treatments out of the US. Since we live in Carlsbad, which is just north of San Diego, I do have friends of friends who have done the Gerson Therapy, and I did research their treatment a bit, thus my interest in juicing. Although, I am not sure I can talk Michael in doing enemas, therefore I will encourage him to do a detox when time allows the next month or so.
I wish I would have found you when Michael was first diagnosed 6 months ago with melanoma. I have been very fortunate to find your articles on the Found Health Site. You have been a wealth of information. I cannot tell you how wonderful it is to hear of your wife’s success over melanoma.
Thank you so much for sharing and I look forward to hearing from you soon.
Warm regards, Pattie
Mike, WOW you have so much information and have done your homework!! I am just starting this fight w/my husband who was diagnosed with Melanoma before I met him about 13 years ago. He had a mole removed (misdiagnosed) and his lymph nodes removed under his arms. He went for his yearly scans for about 10 years and was cleared. His Dr. finally told him that he was clear and he didn't need to come anymore. Last November he started having migraines and was sent for a scan. He had four spots/tumors on his brain. One was removed and the other three were treated with Gamma Knife. After he healed from that, he went for a PET scan and a few spots were found on his lung and a few behind his pancreas. He starts Yervoy tomorrow. His Dr. doesn't seem to have a lot of faith or have a positive attitude like we do (we have two little girls and we have no other choice but to be positive). I just found your site tonight and I wish I had all of your knowledge. I read about the diets and we have immediately changed ours. We have always been healthy and organic (me more than my husband), but a new diet with all the foods that you listed in our new way of life. I'm also having my husband take Vitamin D (D3) but I'm not sure how much to have him take. Do you have any other helpful suggestions for us? Thank you, Jill