I hate to be a naysayer, as actually I try to be open-minded.
I do have to tell you that the late and beloved cofounder of our local mm support group, who lived with myeloma for at least 10 years, went to the Max Gerson clinic in Tijurana. Of the other people that were there with him, he way outlived the rest. He could not tolerate the regimen, and left there after a few months. He had a fondness for hamburgers apparently, and a real dislike for coffee enemas. The latter can actually can be quite dangerous. This is not from Quackwatch or some place that has negative things to say about all alternative therapies, but from other sources. I have had this confirmed by several doctors.
About megadoses of vitamin C. Vitamin C in its normal water-soluble form does nothing against cancer in megadoses. After 1000 mg per day or even less, it will only pass out of your body. You could get vitamin C by infusions or use the oil-soluble form of bitamin C, ascorbyl palmitate. Either of these ways would produced the desired effect. I do not know if it would do anything or not. I have not done this myself because I may be using Velcade again, and vitamin C and Velcade are antagonistic. Velcade for me was relatively tolerable so I would hade to reduce how well it works.
Megadoses of Vitamin D on the other hand might actually do what Linus Pauling had in mind. If you search for Vitamin D Council you will find lots of good information from their site. It is not toxic at the levels that are repeated over and over from official sources. Toxicity starts at 40,0000 Iu per day.
MOre official source say toxicity starts at 10,000 IU per day, but this information is in error. Also, an M.D. who used vitamin D for another reason found that dry vitamin D did absolutely nothing to raise the level of vitamin D in his patients. You must take the oil-soluble form, which is an a gel.
I guess dry means it is not in an oil-based capsule. But the dry kind is worthless.
Also, resveratrol and vitamin D work together.
Finally, someone has turned me on to a much better source of resveratrol thatn Longevinex. They are only beginning to export their products to this country.
The one they are selling now I am not quite sure about, but it seems to be more powerful and much, much cheaper. There is another product they will be coming out with soon called TransMax. I have no doubt about this product.
There is none of the hype as with Longevinex, and if you look at their site, I think you will see they have a far superior product.The site is
http://www.bioflu.com/
I hope thiw was helpful. You are free to debate what I have written here.
I have no problem with this as I do with my acor list posts. I would not post some this on that list anyway.
Alex Maas
San Diego
Alex, I've read your posts on the various lists and really appreciate what you have to say. (Can I ask how long you've been living with MM?) About Gerson, do you know whether those people who went to the Gerson clinic continued with the Gerson program afterwards? and did the cofounder of the MM support group you mentioned stay on the gerson protocol for all those ten years? that is one thing I am trying to figure out, whether people who do gerson stay on the protocol or go off of it after some time.(It is so hard to do, the idea of staying on it indefinitely is disheartening, I will say!) A guy i talked to who was diagnosed in 1980 with MM and who is alive and well today after doing Gerson said that he relaxed on the diet after a year and a half; but it sounds like he still eats very healthily, plus does a daily coffee enema. About enemas: can you say what the dangers are? My husband decided to try them after remembering that in his childhood enemas were a pretty standard thing. (he is from Cyprus). In fact, when I went to the pharmacy here (Cyprus) to buy an enema kit they asked me whether it was for a child; apparently it is pretty common to give enemas to kids here. I know that some sources say they pose dangers of dehydration. we are alert to that possibility. but, our doc is recommending transplant and frankly that seems far more dangerous than coffee enemas! I had a good friend with MM whose husband used to post on the ACOR list; she died after her second transplant. I saw her a month before she died and that image haunts me. Even thalidomide and dex, which my husband is taking, seem more dangerous. All of this is why I am anxious to try any and all alternatives from the very outset, rather than put our fate into the hands of conventional doctors and their chemotherapies. I have lost five close people to cancer in my life: all of them had "cutting edge" therapies. In the case of my mother, she actually died not of her cancer but of the chemo (she had a weak heart). I don't discount modern medicine but I cannot put my full faith in it. Not when so very much is at stake.THerefore I'm very grateful for the knowledge put forward about alternative approaches.
My husband used coffee enemas for a long time when on the Kelley Protocol (used by Dr Gonzales in NY and Dr Rowen in CA among others). If you want to do them, you should order the coffee specifically made for that purpose - not just use Maxwell House! I don't remember who supplies it but can find out, I think.
Their use is controversial, but I have not heard of any real problems such as Alex mentions, yet I have not done much research on them either as he has done.
There are other ways to detoxify the liver such as using Milk Thistle or the Pekana Sanum Remedies (I am getting ready to use them myself for a liver detox in a week).
My husband used only alternative for a few years, now on thalidomide and also herbs. His numbers are slowly going down, dropped from 5060 to 4400 IGG this month and total protein went from 10.2 - 9.8, M Spike also dropped. I know they have a long way to go, but still they are lower than they have been in a year, so we are happy.
So did the thal/dex do it, or the herbs or both???
We will never know.
Barbara Pavel
Caregiver, John Pavel
dx 1/03 kappa light chain, comp fx L1 11/02, T5&T7 8/06, T6(kyphoplasty)10/05, various alternative treatments from 1/03-9/06 Started 8/06 - thal 100 mg daily /dex 20 mg weekly, Aredia once a month,coumadin for DVT 3/0
What can you tell us about your husband's results from the Kelley Protocol? Did he work with either Dr. Gonzalez or Dr. Rowen? Has your husband also used sauna therapy to detoxify?
Thanks.
Cathy
Cathy - my husband did go to Dr Rowen when first diagnosed in 2003, instead of doing VAD or stem cell, the only meds available at that time outside of clinical trials. Dr Rowen gave him hope, although he was very up front about the fact that he had only treated one other MM patient and did not know what results he could get. He had 2 diffferent IV treatments there (Insulin Potentiation Therapy and Carnivora) over a period of around 6 months. At that time he followed some of the Kelley Protocol, mostly the coffee enemas, supplements, not juicing, and rectal ozone therapy. Eventually Dr Rowen and he agreed that the treatments were not working for MM and he stopped. He did continue to do IV Carnivora at home for a while, but eventually stopped, just got lazy, I think.
I do not think either one of us would recommend these treatments for MM, although John does feel they helped slow down the progress of the disease and does not regret the time and money spent. Going to Rowen's clinic was immensely therapeutic mentally as well as physically, lots of loving support from staff and patients and helped us through the first year of dealing with The Beast. I think it may be one reason he stayed so "up" early on and did not succumb to the depression of having this disease until later on.
Alternative treatments require a lot of self-discipline, money and time. WIth fatigue being such a big factor in MM, it is hard to keep the ball rolling by yourself . MIcheal Gearin-Tosh had people coming in to help do his juicing etc, did not do it alone.
From the start our goal was to maintain the best QOL as possible and I think he has done that so far, and the onset of bipolar since diagnosis has been as debilitating as the MM.
Barbara Pavel
Barbara Pavel
Caregiver, John Pavel
dx 1/03 kappa light chain, comp fx L1 11/02, T5&T7 8/06, T6(kyphoplasty)10/05, various alternative treatments from 1/03-9/06 Started 8/06 - thal 100 mg daily /dex 20 mg weekly, Aredia once a month,coumadin for DVT 3/0
Lisa,
I think you're very wise to consider both approaches to treating MM.
Regarding your being a sole caregiver with two small children, I hope that some day soon your husband will include family members in helping you so that you have some well-deserved respite. The Gerson protocol and raising small children each constititute full- time jobs. If you haven't read Michael Gearin-Tosh's book, Living Proof, mentioned in another post, I think it will give you courage and insights into one man's journey with both MM and Gerson. I think that MGT lived for about 11 years with both Gerson and MM. About one year ago, he developed an infection, refused antibiotics,and died, according to my source, Margaret.
Cathy
You can read a paragraph about Michael Gearin-Tosh's death at: http://www.canceraction.o...
After his docs gave him at the most six months to live, he lived for 11 years and one month after being diagnosed with MM. Then, in July of 2005, he developed a tooth infection, refused to take antibiotics, and ended up dying of sepsis. Very unfortunate. And yes, if you haven't read his book, please do so. I was inspired, for sure!
Margaret, Florence, Italy
Cathy, I missed replying to this because my back totally gave out and I was out of commission for a bit. Guess my body realized the wisdom of your words! I just wanted to say thank you. I have read Gearin-Tosh - the first time through, I was too new to MM and couldn't take it in. THe second time around it made a lot more sense, although I wished he had given more detail about exactly how he implemented and modified the Gerson protocol.Right now, after getting recent blood test results, I am feeling encouraged by our joint (conventional and alternative) approach to MM. I just wish it were a situation where an accomplishment could be counted on to stay that way. I know it is not. But, we will keep on going. The nagging worry is the decision about transplant. But, our doc here told us that harvesting stem cells would be possible in Cyprus. So, maybe we will look into that route - harvesting (if we can do so without chemo) but delaying any early decisions about transplant. It seems like one way to hedge our bets. All eggs in one basket sounds too scary right now. And I've never been a betting person.
Please keep in minds I had promised myself if I ever were diagnosed with any type of cancer, I swore to myself to try methods of alternative methods first. When I was diagnosed with multiple myeloma, of course I had never heard of the disease. Ann Landers died of it. I normally remember things like this. And I tried clinic after alternative clinic. Not one could tell me they had successfully treated a myeloma patient. I believe that their techniques may help of even defeat other cancers, but they will not work for us. Or disease is just too difficult to eradicate. I am not a scientist, so I cannot pretend to know why. Generally, except for me and David, the average myeloma patients is 70. It is generally thought it develops over a lifetime, and that is why it is so hard to get rid of.
I do not remember how many months the cofounder of my mm support group tried the Gerson therapy. It was for many months. My point was it was not effective, and he outlived everyone else who went there at the same time. So, for him, conventional medicine worked much better.
I am truly sorry that I do not remember the danger of coffee enemas. But I do remember the risk was real. I remember seeing it confirmed from two different sources. Please remember how I process information. If it comes from some place that discredits anything outside of conventional medicine, I discard it as useless. I was very surprised to learn that it was dangerous actually. And yes I do consider a stem cell transplant very dangerous. Not so much because of the small but significant risk that you might get worse (3%), but because you are flooding your body with an extreme amount of poison. Generally, this approach is being used less and less to battle any kind of cancer. For some childhood cancers, for example, the old therapy was to blast the cancers with poisons.
It rarely worked very well. In the Wall Street Journal, in the last year or so, there was an article about how the new approach is to use thalidomide + cytoxan (no mention of dex) to fight these childhood cancers. Instead of trying to eradicate the disase, the goal is to get the cancer counts down to acceptable levels. And the children are living instead of dying.
I would use a transplant as a last resort. Dr. Berenson, as much flak as I got for posting his notes on the acor list, has long trumpeted the least toxic approach and to maximize the quality of life of the patient. That is why he has just given up on stem cell transplants. There is another list member who was at the same lecture, who recently had a stem cell transplant and found Dr. Berenson's comments illogical. Whether they were or not, I really do not care. I understand his general approach to treatment, and it is one I agree with. My local oncologist,although he never is up to date on mm, uses the same approach. He wanted me to use Revlimid, which I rejected out of hard. I think he was rather surprised about that.
If Dr. Berenson believes the benefits of Zometa outweigh the risks, I know this includes any risk of toxicity. He feels that ONJ is quite easily dealt with. He has seen it be reversible, even while the patient continues with the drug.
I have mixed feelings about thalidomide and dex, since this combination put me both in remission and in the mental hospital. Thalidomide is neurotoxic. However, I do not believe, as far as I know, it will not reduce your lifespan. Dex, on the other hand, will do exactly that. For dermatological uses, some patients have used thalidomide for as long as 20 years, believe it or not. I do not think anyone could use a steroid for so long--the side effects would have done him or her in.
So I see the risks and benefits of everything. I am now debating whether to use something like Velcade and thalidomide, to get remission, and then try to use alternative techniques to keep myself in remission or use a lesser quantity of drugs and not try for remission. Unfortunately, despite my best efforts of using other things, none of them is working as I had hoped. I have about a month to try some other things, which I hope I can delay to two months. But with a hemoglobin around 9, I probably have to start therapy. I was hoping to just use something like Aranesp or Procrit, but it seems the FDA has seen that this will no longer be used, and no insurance company is going to fund it. Aranesp is $3,000 a shot, one shot every other week. Even though I think this would be the best thing to do for me now, I really cannot spend money like that.
I do not think that for strong cases of mm, anything from alternative medicine will probably put any of us in remission. I do NOT consider antineoplaston therapy in the same boat--I think it just not work for many mm patients.
I will be trying, desperately, in the next month, Transmax, which I will be getting earlier than it will be available for sale, (a brand of resveratrol), large amounts of curcumin, megadoses of vitamin D, and artemisinin. I will be calling today (it is 3:00 A.M. PST here while I post), Dr. Singh who is doing the research on artmesinin. I want to know about its toxicities at very high levels, and if there are any contradictions with resveratrol, curcumin, or vitamin D. I will post this information on the acor list.
I just got back from a holiday weekend, and must sift through 140 e-mails (yikes!). But Alex, I just had a quick comment on your sentence: "Generally, except for me and David, the average myeloma patients is 70." My comment: for the record, I am 45 years old now. I was diagnosed with MGUS at age 38 and with MM at age 43. Margaret, Florence, Italy
Just seconding Margaret here. I'm 44. My symptoms started at age 41 and went misdiagnosed until last year.
Alex,
Re mega doses of vit C- the clinical trial that I posted about last week is vit c administered in an intravenous form. I understand that there is a fundemental difference between how vit c gets into one's system through ingestion vs. the blood stream.
In other words, I agree that trying to take large doses of vit c through your mouth doesn't do much good but there is some evidence that intravenous vit c does have an effect on cancer- more to come.
I don't know much about vit d and would like to learn as much as I can-
Also, please keep posting re your info and experience re resveritrol.
The Bright Spot Health Center in Kansas has conducted research on C IVs for about 20 years. Two years ago I spoke with one of their patients with MM who had had the IVs for about one year, with no positive effects. The late Michael Gearin-Tosh, a Gerson patient with MM and author of Living Proof: A Medical Mutiny, tried the protocol with no success either, if I recall correctly.
http://www.brightspot.org...
I am on a MGUG support list in which 75% of the posters are under 50- I don't think the age averages have been looked at in years. The population of boomers have been exposed to more carcenogens for a longer time than any group in history- Mc Donalds and fast food became staples of the diet along with the boomers- MM numbers are increasing and younger folks are getting it, often- They don't even count MGUS folks in this because they say only 3% go on to develop MM. I think new stats would reveal this increase.
Hi Portlandrose
Where is the MGUG support list that you are on and I am assuming this is a support list for MGUS? Also, the stats on the transformation of MGUS to MM has always been 18% to 25% in every research that I have read, with 25% being the latest research. Sorry that I can't quote it, I read it, but don't save it, generally. My oncologist said "correct" when I asked about the 25%. Still good odds though to hope to be in the 75% (glass half full) category.
Linda
You guys (ladies) are missing something really important here. Really, the average age of mm patients is 70 although the incidence among those under 50 definitely is growing. A seventy-year old is not going to be anyway as computer literate as someone in his or her 40s. That is why you might think what you are saying. Chris Hollyer (now deceased) had a web survey of the acorlist. However, it was completely inaccurate for many reasons. And what he listed at the average age of mm patients was way way off.
Really, it is 70, just as Dr. Berenson says. I have no doubt about that.
Of course, if you are in any type of computer support group it is never going to seem that way. I can tell you at the local support group I go to I am one of the two youngest regular members. Even this population is skewed, but it is much older than the average age of any computer support group. One guy did show up once who said that, when he was diagnosed with mm, 7 or 9 year ago, at that time he was the youngest patient every diagnosed with mm at 27 (Sorry I cannot remember all the details as this was more than a year ago. It is always great to question statistics--I have no problem with that.Dr. Berenson himself does this constantly and questions studies about various things. He said the report about side effects from the original study on Rev-dex at the Mayo Clinic could not have been accurate with so much dex. So he called and asked, and about 89 percent of those in the study had severe emotional side effects.It is not possible to objectively report these at all, so they just do not get reported. But if he says the average age of an mm patient is 70, it probably is close to the truth. It could be a little younger and probably is getting younger year by year. But really it is still generally a disease of older people. Aren't all of us here under 50 with full blown mm incredibly lucky?
Alex
San Diego
I hate that you are not going to be posting on acor anymore. I'm a big fan of yours and always read your comments. Please be assured that I am a big girl (60 yrs) and can make decisions for myself. If I don't want to buy an item, then I don't purchase it. Have been reading about curcumin for several months now but haven't purchased it yet even though my onc okayed it. I love it that you will be posting on this site! Thanks for all the information you share.
Joy Cooke, Greensboro, NC
List not as active as beating-myeloma but many former nurses
http://health.groups.yaho...
One of the big issues we all have is that our Drs tell us there are no symptoms with MGUS and that our various neuropathies are something else- my neurologist has been trying to diagnose me as MS but there is nothing on the MRI to justify that.
I believe the most detrimental condition for all of us is stress and anything you do to reduce stress will have a positive effect on your whole body. This includes days when you pretend to be 100% OK. Even if you end up in bed for a few days. Take care of yourself and be aware of your stress levels.
Portlandrose-
Though I talk about the benefits of exercise, supplementation, detox, nutrition, etc. with my family and friends, I think that of the many things that I do to manage my mm is to have left my job, started disability and become a stay at home Dad. Fortuneatly, my wife has the ability to work full time. I firmly believe that managing stress in our lives is a key mm therapy.
David
I have read articles online on the stress-cancer connection. Seems pretty clear. I have a real-life example, too, concerning a close friend of mine with SM here in Florence. Her markers went way up (from MGUS levels to MM ones) in a period of just a few months during which she was teaching and writing and had deadlines of all sorts. She was under a lot of pressure and completely stressed out. Well, after seeing these bad test results and freaking out, she decided to cut way back on stress. And lo and behold, after a few months, her markers went right back to where they had been before the stressful period. Note: she hadn't changed her diet and she wasn't taking any supplements at the time. Elimination of stress was the only change she made. So, laugh and be happy, everyone! Ah yes, laughter, as I discovered (and wrote about on my blog), helps boost the activity of our natural killer cells and the immune system. That's why I post funny stuff on my blog whenever possible. ;-) Margaret, Florence, Italy.
I personally relate best to the comments of stress being a major factor in our health changes. I recently came to conclusion that a good support system may be the best alternative/complementary remedy that there is. Whether right or wrong, sometimes right, sometimes wrong; I've always seen myself as my best support, along with one beloved family member. In that stream of thought, I also went back to school late in life for more education to further build my self-support. Absolutely no regrets!! It was the best time of my life, so much fun, so much growth, and so many friends. But it was the stress of starting over after school, moving after school, horrendous ongoing school loans, along with concerns of raising a teenager with his own support system issues, and then moving into an area for a great job far away from any old support or the new friends; that pushed my stress level into the danger zone. The new great job turned out to be far too beauracratic for my temperament and so I decided to stop forging through barriers and challenges that I had always prided myself of doing so well and just relax. That’s my theory of why my health took the path it did and also why I am feeling better now. I was lucky to be able to early retire from past employment with some health insurance and take a two-year breather and get my bearings again. I've been very thankful for that opportunity, but I must go back to work soon. Mama needs a new roof over her head.
So very thankfully, I found all the wonderful people that helped educate me about many things, some that I am mulling over this morning; the fuel of IL-6, and what that was doing to my body, and angiogenesis.
Change in thought again: I am a believer of imagery within meditation, but I’ve been thinking about how I might use it for this and I don't think I will take the usual route of imaging an attack on the cancer cells, simply because that is not the way this particular cancer works. I have some medical background, but I'm not a nurse or doctor; so this is just my over simplified thoughts; that the reason this cancer has no cure is because science can't figure out a way to differentiate between the cancer and our own immune system. So in imagery, I think I might follow the imagery of cutting off the blood supply to the irregular cancer cells and reducing the fuel of stress, IL-6, cortisol. I'm still developing this imagery idea., any thoughts? I haven't yet understood how cutting off blood supply to cancer cells works without cutting off blood supply to other cells. (maybe that occurs in neuropathy). I added an extra scoop to the coffee this morning, thoughts are rambling.
Watching the PBS Cancer Warrior video this morning was what inspired this ramble. That and that the temperature is 100 degrees outside today and too hot to get outside and garden. According to this video, the first tests ever done to try to find the molecule to cut off the blood supply to the cancer cells was done with cow cartilage. The video explains that cow cartilage has blood vessels in embryonic stage but they disappear after birth. Two years ago, a naturopath doctor told me to take bovine cartilage supplement, but I didn't due to the expense of it and at the time I thought that that suggestion was the craziest thing I ever heard. But if I understand the science behind the suggestions I am more open-minded. Has anyone ever heard good or bad of this? Someone years ago on the ACOR list did say it helped them the most of anything they tried, but it eventually failed for them same as MM prescribed drugs. It is because I am still MGUS, three years rising m-spike, but stable for the first time in March; that I still am looking intently into complementary/alternative. I’m still a curcumin taker, trying resveratrol for three months, but not again, due to the expense of it. More rib pain of late, sleeping with cold and heat packs on ribs. But my diet has been awful with sugar and coca cola and beer added to sandwich type meals, so I’m getting back on track this week. My body reacts not so well to the sugar.
Very interesting. In my imagery, I usually use a sword to cut off the heads or various parts of my MM cells (seen as big clumsy annoying and hairy monsters). I like your idea of cutting off their blood supply. Another idea: I have a listserv friend who sees his IgG count as a thermometer, and he focuses on bringing the marker down. And another thing that I just thought about: there are many substances (my beloved curcumin is one) that kill malignant cells (in vitro) but not healthy ones. Perhaps that could be used as imagery, too. That is, whenever we swallow one of these substances--curcumin, resveratrol, or whatnot--visualize what it does to our MM cells. I don't have much experience with visualization, having done it only for the past few months, and on my own, without any guidance etc. So I would really like to hear about other experiences, which could be helpful for all of us. Sorry to read about your rib pain, hope it passes soon!
Thank you! Have a great Sunday, Margaret, Florence, Italy
I'm working on a less warlike image where I tame the wild cells and incorporate them back into my body from whence they came since I know they'll never go away totally and I will always need to reduce stress and feed them well to keep them happy and not dangerous, and I commit to taking good care of my wild things if they will behave. ----This does sound like the social worker in me coming out-Hmmm. The wild things are like ferral cats with extra long teeth and claws and when they're tamed they become furry little kittens that let me trim their nails and purrr.
I found the various comments on stress to be really wise and pertinent to all of us, myelomics and caregivers. For me, my back problem is my indicator of stress levels. I can go from being almost pain free to haveing sudden attacks of acute pain if something stresses me out. It is like a barometer. Not one I'd like to have, but i'm trying to look on the positive side. I can also see that being immobilized by pain for a period of time was a reaction to overwhelming stress - I felt like I couldn't go on, but I had to, so I did, till my body took matters into it's own hands and forced me to take some time off. It wasn't good for our Gerson program, but it was a lesson in the need for self care for everyone involved in this situation. Meanwhile, I can also see the effects of stress on my husband's health. The days when he is less stressed, he has more energy and less pain.
He isn't really doing visualtion in the standard way, but he told me that since diagnosis he has imagined himself diving off of a favorite rock into the sea at the beach where he spent his childhood, and having the salt water cleanse his body. I don't know if this is as powerful as imagining the myeloma cells themselves being vanquished, but it brings him mental calm.
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