MRosenthal

My wife did interferon twice. The first time was in conjunction with a Melacine trial after she was stage 3 in 1999. And then again initially after she was diagnosed with a recurrence, but before it moved on the stage 4. Interferon, at least at that time (2006) was the only FDA approved "Standard" treatment for Stage 3. Unfortunately, the statistical benefit of high dose interferon by itself is not great (there is some, but not a lot). It also has a lot of side effects. What's also unfortunate is that many of the side effects can be managed very well with non-western techniques (acupuncture, detoxifying the kidneys and liver post-infusions, etc.). But most western doctors don't know about these things (and would frown upon them anyway). I put together a protocol for side effect management for my wife, with the help of some non-western practitioners + my own research, and it really worked well. The hospital staff said they'd never seen anyone go through treatment so healthy. This matters a lot not only for comfort, but also because the success of the western treatments (chemo, interferon, IL2, etc.) is directly related to your ability to complete the treatment. Side effects can sometimes be so bad you have to reduce or stop treatment -- which in turn reduces the chances of success. Proper and thorough side effect management can make a huge difference. If anyone wants to know the protocol, I'm happy to share it.

Also, I wrote an article on my "strategy" to beat melanoma, compiled from all my research. You can read it here: http://www.foundhealth.com/melanoma/mike-rosenthals-strategy-to-beat-melanoma

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.

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.

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

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

Hi Mrs CM,

You're doing the right thing by reaching out and searching. You would not believe how much I found that no doctors ever told me, by doing my own searching when my wife was facing this. Let me try to address a number of the things you've asked about:

1) You definitely DO NOT need to just "sit around and wait" like the doctors are telling you. There are many supplements you can take that can, in my very strong opinion, help reduce the risk of a reoccurrence. My wife is now nearly 4 years out after stage 4 melanoma, with no evidence of any more cancer. Every day, for 5 years, she has been taking a number of different supplements, and she has adjusted her diet. I found very clear evidence that made me believe these things work, and they are part of why she is doing do well. You can read about them in the melanoma section of FoundHealth, but in my opinion, the most important ones are: Melatonin, Maitake D, Vitamin D3 , Cellular Forte, and Immpower. There are many more, but I would at least start with those. I wrote a bit about dosage here: http://www.foundhealth.com/questions/desperate-mom-looking-for-suggestions-on-diet-supplements-and-integrative-treatment-for-19-year-old-son

As for the diet, the general rule of thumb is that you want to cut back on inflammation-inducing foods. In short, that means less meat and more veggies (particularly cruciferous vegetables).

2) From what I have heard recently, there actually ARE tests you can do to test for cancer and also cancer markers in your blood. I don't recall what they are, buy keep on digging for them b/c I believe they exist. They're likely not perfect, but sometimes an added layer of protection helps. My wife doesn't do them though. She feels like the regular scans are good enough.

The problem with the PET scan, is that is has a low resolution. I don't remember what exactly it is, but it can only detect tumors once the get past a certain size. The CT scan can detect tumors or masses that are smaller than the PET, however, it can't confirm that it is cancer (which the PET can do). Tine was getting combination PET/CT scans for a long time, b/c the two pieces of information together provide a better screening tool.

3) My wife is also 38, and we've had the same debate about kids. Not very easy to deal with. Her situation is more complicated b/c her case was a lot more advanced than yours. I don't mean to scare you here, but there is some evidence that suggests the fertility drugs they give you to stimulate multiple egg production can increase your risk of cancer recurrence. Its only by a very small amount (don't remember exactly, but something like 3%). Also, it was only one study that showed this. Even though its a small amount, and limited study, my wife and I decided that we would not go down that path. So we are actually in search now for ways to stimulate egg production in a more natural way. We've just started this journey, so don't have much to share on it now.

I hope that helps. If I can answer any other questions, please ask.

Mike

Hi Jill,

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.

Mike

Hi Pattie,

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.

Regards,

Mike

Hi Pattie,

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:

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

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,

Mike

Both my wife and I have tried acupuncture and it worked well for both of us. She tried it first when she was battling Stage 4 melanoma. As she described, when she was doing acupuncture was the only time during treatment when she felt truly peaceful and calm. It helped relax her and give her strength in the fight. She is now 5 years with no sign of cancer. I also tried it to help me relieve stress years later and found it really helped. What was most interesting is that we responded to different people. She tried 2 or 3 acupuncturists before she found one that really helped her. I did the same thing. And surprisingly, the one that worked for her didn't work for me. And the one that worked for me didn't work for her. My sense is that Acupuncture is a personal treatment, like therapy, where finding the right practitioner (which can only really be accomplished by experimenting with multiple practitioners) is the only way to ensure it will work for you. Bu trust me... when you do, it really does work! I am a physicist by training, and Einstein's theories tell us that the entire universe, including every cell in our bodies, is at its most fundamental state, energy. So it makes sense to me that a medicine based on energy flow can affect us at deep levels that "modern" medicine can barely understand.

I did not try it, but my wife did. I did a bunch of research, and also talked with a number of integrative doctors who recommend it. Everything I found suggested that it is likely to stop the proliferation of melanoma cells and help kill them. She still takes Maitake to this day, 5 years later.

I've been taking Echinacea for 20 years now. First introduced to me by my father. I actually remember the first time I took it in college when I was starting to get a cold. Couldn't believe how overnight it knocked the cold out. It is a crime that "regular" doctors across the US don't prescribe this. I use it every time I am feeling a cold or flu come on. It usually knocks it out within 24 hours. I also use it ever time I fly - take it before and after the flight to help make sure I don't get sick from others on the plane. I used to get something 50% of the time on long flights. Now-- nothing. The only downside I've noticed is that if I use it too often, it effect goes down, as if my body gets "used to it."