I had a long talk with one of the 2 co-founders of my local myeloma support group. 9 years ago, he went to the oncologist who is a partner with the one I have. This particular doctor is still having mm patients do 40 mg of dex 4 days on, 4 days, off. There is no reason to do this much. At any rate, he advised this cofounder to have a stem cell transplant. He found another doctor—who told him exactly the same thing. Then he met the other cofounder of the group, who told him a SCT did nothing for him. So he ignored their advice, and they founded our support group in San Diego. He had a dendritic cell vaccine, which is no longer available because it was extremely expensive and very costly. Nothing besides that and Aredia for 9 years. Now, finally he has to do something else. He told me, he would probably be in worse shape if he had followed the advice of his doctors. What was unsaid is he might actually be dead.So much for listening to any oncologist’s advice. He told me he recently brought this up to this 2nd oncologist, and the oncologist told him "WE made the right decision". Of course.
Interactive Health Communication for longer, better lives.
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I wrote to Dr. Aggarwal to ask if resveratrol in large amounts is safe. He send me a research report that showed there were not many side effects in large amounts. The authours said the safety would have to verified by more studies. This study also concluded resveratrol did NOT have a anti-myeloma effect, in contradiction to what I just posted fromt he Mayo clinic. Oh well. Who knows? This is a PDF file, so I cannot post it here. If you would like to see it, please email me.
Alex Maas
a.maas@cox.net
Despite my best efforts, none of them are working. I can barely walk without breathing heavily. I have asked for a transfusion. If I take Velcade again, I least I will start out better. The only side effect I had with Velcade was it made me even more anemic. Well, it did leave me paralyzed on the floor for almost a day, but I think that wasathe combination of biaxin, Velcade, and seroquel, the latter sort of just tranquilizes you to sleep or something, by paralyzing your muscles. I have found this drug useful, with no side effects, when up all night with dex.
Alex
Alex, I have no idea if this would be pertinent to your situation, but the most remarkable thing to me about my husband's situation is the rapidity with which his hemoglobin has gone up (at 14.5 now, from a low of 9.8, all since March). I am personally convinced that the Gerson diet is playing a role because the biggest leap in hemoglobin was during the period when we had started doing the diet very intensively but hadn't yet started the curcumin.He had been doing Thal/dex too, of course, sowe don't know exactly what is responsible, but the doctors have expressed surprise at this rapid rise so it apparently isn't the norm. And the Gerson diet involves NO red meat, no lentils, none of hte usual things they tell you to eat if you are anemic (except dark green things). But, to do the diet and juices, especially if you are very tired, you really need someone who can help you and do a lot of it for you.Just wanted to throw it out there.
Lisa, your Gerson testimonial has been invaluable. I wish I had someone who would make me juices. But my husband works all day, and so that is impossible. I will have to make 'em myself. ;-) And I do confess to being tired a lot (low ferritin, methinks). But I will try to make more than one juice a day, and make it GREEN. My hemoglobin is still within normal limits, but I wouldn't mind it being higher, of course. Thank you so much for inspiring us...well, ME at least! Today my GP's substitute told me to resume qigong, so I am going to start doing that again as well. I need some energy! She also told me to eat sprouts. Interesting. Margaret, Florence, Italy.
Thanks, Margaret. By the way, I'm low ferritin too. I'm supposed to take iron supplements to build up my stores. But, if I had MM i would be worried about doing taking iron. What I find interesting about the Gerson diet is that it seems to affect anemia not though iron levels but by getting at the source of the anemia, the MM. At least I'm guessing. The diet is really pretty restrictive, though, and I'm not sure what happens if you just do part of it: the Gerson people are adamant that one can't mix and match approaches (which we are, to some extent, doing ourselves by adding curcumin with bioperine - shouldn't have pepper on the Gerson diet - and fish oil is extra fat, too). The diet involves NO cooked fat of any kind, no fat at all other than limited amounts of flax oil. The only protein is supposed to come from non fat cultured dairy (yogurt, pot cheese), legumes are not allowed,nuts and seeds are not allowed, certain fruits are not allowed, only a very few mild spices are allowed. the only bread allowed is salt free rye bread which I would have to make myself, so, de facto, my poor husband doesn't get to eat bread either. We're really following the diet pretty strictly except for controlled violations of the protein limitations in order to deal with infection issues and wound healing. (I think since early March my huaband has eaten meat or fish a total of seven times, if I haven't lost track.) Other than that he hasn't cheated at all, although sometimes we don't cook in exactly the right way, and, I have to admit we have not been managing the special high potassium soup very well (he is supposed to eat that twice a day, and he doesn't, partly because I don't get it made as often as i am supposed to, partly because he really doesn't like it).As for the juices, we don't always get up to the total volume, but we try. But, we do it in 16 ounce doses instead of 8 ounce doses because otherwise we simply cannot keep up (even with my husband doing more of it himself now that he is getting more mobile). And, we don't do all the supplments Gerson recommends, partly because we're worried about drug interactions. When I talked to the long term survivor who did Gerson and has survived 27 years, he told me off for all the short cuts we are taking. True, we are. But, we're doing the best we can, and geting better at it all as time passes and the whole enterprise becomes slightly less overwhelming. at the end of the day, I suspect every little bit helps, even if one can't do it perfectly.
Alex-
I think that it's a mistake for mmers to write-off the advice of their oncs in all situations. The better practice should be to learn as much as you can from places like this list, ask questions of your onc, others' opinion you value, then make a decision. The co-founder of your group sought out the advice of two oncs (a second opinion is always a good idea) in addition to a fellow mmer. And he believes that he made the best decision for him.
David
Of course you should not always ignore the advice of an oncologist. You should listen to what they say, and if you do not like it, see if there are alternatives. This worked for the person I posted about, and it worked for me quite often. As I have often posted, Dr. Berenson would have told me to go back on thal, except with Medrol instead of dex.
Instead, I went back to dex, biaxin, and Zometa and used it successfully for a year. Dr. Berenson thought it was "neat". Nobody else had ever tried it for a second time. But I had to get a prescription from my own oncologist, didn't
I? If I had listened to Dr. Vescio, who used to work with Dr. Berenson, he would have had me do VAD and SCT. Very glad I did not do the VAD. Not 100 percent positive about not doing the SCT, especially the harvest.
The other cofounder of my local mm support group (who recently passed away because of hear problems) upon diagnosis went to the Gerson clinic in Tijuana. He really did not like the diet too much, but he stuck with it for awhile. His wife did not mind it as much. He then would sneak out for a hamburger once in a while. He told me last year, of all the people who were in the clinic with him, all except him had died many years ago. There were no other mm patients. You can make your own conclusions.When I was diagnosed, I had remembered an article I had saved many years ago about some diet and cancer. I could not recall at tht time , but it was the Gerson diet. The diet outlined in the book "How To Treat and Prevent Cancer with Natural Medicine", which does NOT claim any miracle cures through diet, is very different from the Gerson diet.And the diet that Dr. Mercola advocates is different from both of those. And the diet that Dr. Weill advocates is different from all 3. If you want, I will post what I have concluded about all of these diets and others that are advocated as helping to stop cancer or eliminate them. I will only say, in short, it is probably best to minimize any extra work your system has to do while you are fighting cancer. But you cannot really throw out the baby with the bathwater. That will be my only post today about diet. Stay tuned.
Alex-
I think that a summary of the three diets and your conclusions as a mmer who studies this issue would help. While I personally don't see nutrition as the sole answer, I do believe it is an important componant.
"The diet outlined in the book "How To Treat and Prevent Cancer with Natural Medicine", which does NOT claim any miracle cures through diet, is very different from the Gerson diet.And the diet that Dr. Mercola advocates is different from both of those. And the diet that Dr. Weill advocates is different from all 3. If you want, I will post what I have concluded about all of these diets and others that are advocated as helping to stop cancer or eliminate them"
thanks-
David
There are other sources of carao, apparently, but I really do not know about them. I have found information in English, Spanish, and Portuguese. It does work for people but not all of them. I have no idea if will work for ANY myeloma patients. And the stuff truly smells awful. It tastes better than it smells, if that makes any sense. I never tried to eat a dirty sock, so maybe that would taste better than it smells too.
Actually, in Dr. Colemen's study BLT-d, meaning biaxin, thalidomide, and low-dose thalidomide had a response rate of over 90 percent. Velcade, Revlimid, and dex has had a similar astounding response rate, but the rate of complete response, meaning elimination of the m-protein has been astounding, way better than what mm patients get from stem cell transplants. Velcade alone has a thirty percent response rate. Velcade with dex, given 40 mg 4 days on or 20 mg 8 days on, during the 2 weeks of the Velcade cycle, has a response rate of over 60 percent. Thalidomide with dex has a response rate of over 60 percent. Most drugs ALONE do not give more than a 30 percent response rate. But who can say what a drug..like Velcade, combined with natural angiogenesis inhibitors (C-Statin, resveratrol, curcumin, ellagic acid, etc) might have for response rate, or what is would be if dex were added in, or what it would be if some other natural compound that might kill cancer cells differently were added in , like artemisinin/artemether (causing cancer cells to self destruct) or pau d'arco (poisoning all cells, but cancer cells are more susceptible) .
In the present system of trials, none of this would ever be tested.
Alex
Alex, I don't think any conclusions can be made about the Gerson diet without knowing whether the people you are talking about actually did the full, intensive program for the requisite 18 months to two years. It is a horrendously difficult program, practically impossible to do properly even with assistance, as far as I can tell, and even harder to do on one's own if one is in a weakened state. Plus, the gerson material says that some cancers require adherence to the diet for the rest of one's life.Myeloma might be one of them. (I think Gearin Tosh stayed close to the diet for most of his life after diagnosis, as I recall). Failure might reflect failure at compliance, not failure of the diet. ("cheating" is missing one or two glasses of juice a month, for instance. The standards are extremely high.)I certainly don't think my husband is coming close to full compliance, despite all our best efforts and day and night labor.It's sort of like assessing the usefulness of curcumin wihtout knowing whether people were using an adequate brand, and taking it in such a way as to be absorbed. But, I completely agree with you on the conflicting approaches of diets. Macrobiotics is the polar opposite of Gerson, for instance. ANd the Gonzalez program says that myelomics require a mostly meat diet! How to choose? i have no idea. We went with the one that made the most sense to my husband, and that had a high level of documentation. HE liked that it was developed by a medical doctor and has been around for 50 years. If it fails us, my next choice would be the Gonzalez program. But for that you have to be willing to swallow about 150 capsules a day. Four months ago that was a flat impossibility for my husband. Now, he's more comfortable with supplements, so we might consider that down the road. But, one thing that we tried to think about was the idea that we wanted a radical change of life style - something caused the cancer, and we wanted to go in the opposite direction. So, since my husband was largely a meat and bread kind of guy, a radical shift to all vegetables made sense, because it shocks the body out of its old patterns. At least, that's how we are thinking about it. I have no personal stake in the Gerson diet (it's a HECK of a lot of work and if we thought something easier would work better, you can be sure we'd switch in a heartbeat.) I"d be interested in your thoughts about the various diets when you have time.
After reading all your posts I'm reading all 3 diets, because I only have 1 kidney Iam apprehensive about 8 -10 juices a day with no water ( Gerson) and I have been playing with a lot of other issues - 20 years of antibiotic use- probiotics- looking for energy increasers. I am working hard to stay organic. I've started taking 3 cobinations of vitamins from Andrew Weil, I choose his vitamins because I couldn't determine who to trust for quality and I assume he has a reputation to maintain and the money to make sure of the quality of his vitamins. - I love food, I love cheese, My allergies have reached a point that I believe I respond to tainted foods- rice from China etc. - I get exhausted and my extremeties feel very heavy, sinuses swell up. So, yes please post your thoughts on the 3 diets. I need a frame to look at them with- Thanks-
I must apologize as I do not have the time right now to tell you all my thoughts about diet. First, I do not think anyone can really disagree with this, drink at last 3 liters a day of water, as purified as you can obtain.Also, eat as many vegetables everyday of different colors as you can. Often what I have found in Dr. Weill's books is to avoid vegetables or fruits where it is standard practice to use a lot of pesticides. I can understand his reasoning, but I disagree with his conclusion. And this is why. I went to a lecture by Dr. Durie in which he said to only eat certain kinds of fish because of mercury problems. Yet, the very next day, there was a front page article that said, overall, that the benefits you get from eating almost any kind of fish, outweighed the risks of mercury toxicity. (There are a few very, very specific examples that contradict this). I would also believe that, for the most part, despite organic labeling and such, you are never really going to get that vegetable pure of any toxins. It is just not going to happen. Certain toxins have been in are environment 40 years or more. Certain vegetable are going have their share of pesticides but also are loaded with antioxidants. There are some synergistic benefits of eating the entire vegetable that you cannot replicate from just buying the antioxidants themselves. And you can watch off the pesticides to some extent with pesticide soaps. For us, the problem with something like carrot juice, is that it is really high in sugars.This is a real problem with taking dex, which is part of so many myeloma protocols. Without dex, it is a different matter. And, yes, it is a lot of work to juice vegetables. My sister gave me her vegetble juicer for this reason--and she is the most energetic person you will ever meet. You can buy prejuiced vegetable juice, which saves the trouble but costs a lot. One has to be practical as well as anything else. For example, in a completely different field called orofacial myelogy, which is a specialization that deals with tongue thrusting, I took my son to a specialist who told all patients never to use straws. I later took him to a much better specialist who told me this was impractical for a child. And her results were actually astounding. So one has to make sure things are practical. There is a naturopath here in San Diego who has a webpage. He says to eat organic animal meat, including all the fat. I do not know the reasoning behind this, but animal fat is where the toxins accumulate. I would avoid animal fat for this reason, if you can, no matter what the diet. Because of the Atkins diet, unfortunately, it is hard now to find certain things like nonfat cheese. I can understand that from a weight standpoint, it is the carbs and not the fat. I do not think from a cancer standpoint this is the best. I would say try to avoid animal fat, whether in milk, cheese, or meat. And I think it is best to buy all these things free of hormones (and pesticides if possible and you can afford it). Hormones, whether plant or animal, are probably not optimal for a cancer patient. Certain plants, such as peanuts, have natural carcinogens. Peanuts, on the other hand, have a high amount of resveratrol. But you can now find high amounts of resveratrol from Company X. And this, as with any other good supplements, is labeled FDA GMP--the latter which means good manufacturing practice. I do not know if Dr. Weill's products have this label or not. However, I did notice his Vitamin D is an oil-based gel capsule. This is good, since from what I have inferred, dry Vitamin D, that comes in a white pill, does nothing at all for vitamin D levels. I have no idea what to say about the tainted food from China. It is not only the food, but supplements and (gasp!) prescription drugs. Some local natural grocery stores are probably your best bet. Something like WholeFoods, which unfortunately, is really stretching the meaning of organic (as they use single-crop monoculture and other kinds), and the food is often from far away.
As for probiotics, I believe that maybe Dr. Murray, who wrote the book I always recommend, may also have his own brand. Perhaps Dr. Weill also. I am sorry, but I do no agree with Lisa's conclusions about the Gerson diet. I do believe that something close to this, IN CONJUNCTION with certain myeloma protocols would be helpful. And I think when we stray a lot from a relatively pure diet, it is not helpful at all.
I believe that is why my remission from thal/dex lasted only a year (which is still good). But.. I do not think you can say it takes 2 years to work. This is why. If someone told you to take mal/jex/nedisone (made-up names), and if it worked for you, it would take at least 2 years to have any impact, what would you say? I have a hard time believing some of this, as I lived next door to an acupuncturist who wanted to be called a doctor and a physician. When her various protocols did not work for me, of course, she claimed it was me and nothing about her protocols. In those days, I have a very, very healthy diet. I see what Lisa saying as very similar, in that if you do not stick exactly to the protocol for 2 years, it will not work. Nobody would say that about any drug protocol. So this is somewhat impractical. And yes, few people have the discipline to do it, but I do not that invalidates my point. And I think the Gerson diet eliminates certain healthy things from the diet, but I do not have the time to remember them all now. These are things that are thrown out with the adoption of the Gerson diet. That is the problem I see with it. However, I do believe it is, generally, a good idea. But the fact is, when I was diagnosed, I was told I had less than 3 years to live. I do not think anyone with a rational mind, would opt to try something that might work in 2 of those years. On the other hand, it is widely assumed that what will work for one mm patient will not work for another because of specific mm subtypes. But how about diet? Does anyone ever study that? I was diet Coke addict, and I cannot profess to know the exact reason why, but you can look up Marla Barnetts' story on the IMF page and make your own conclusion about the effect of diet Coke on mm. Finally, about bread...I can understand the reasoning of Mercola and others, but I do not agree with the conclusions. The higher up on the food chain you go, the more concentrated is the amount of toxins. So if you just eat any meat, is this going to be better than bread or grain products? I doubt it, although it is possible. Silent Spring showed what happened to birds with DDT, and it got banned. It has been shown, that actually, this does not happen to humans. So it might be that you are just as safe eating a meat product that at sometime was exposed to DDT as bread that was similarly effects. Or it could be more concentrated as it moves up the food chain. There are an awful lot of variables. But ASSOCIATION is NOT CAUSE, and Mercola and others want to blame everything on grains. I truly doubt it. But there are different variety of breads and grain-derived products. Most likely, the further you move down from white sugar, the healthier the bread product is. What I prefer to eat, when I can find it, is something called Brand X, which is a flourless,sprouted grain bread. I believe it is the healthiest you can find (except when the Health Department closes it down because of too many rat hairs in the loaves...oh well).
Sorry this is so mixed up, but this is the best I can do for now. The point is, try to drink as much pure water you can, try to minimized the toxins you eat, and try to get the vitamins and minerals you need through the purest diets and supplements you can find and afford. And this may include animal products or it may not.
Alex, I just wanted to add something to your comment about peanuts being carcinogens but also containing resveratrol. I remembered reading something negative about peanuts some time ago, and found this on the World's Healthiest Foods website: "Peanuts are susceptible to molds and fungal invasions. Of particular concern is aflatoxin, a poison produced by a fungus called Aspergillus flavus. Although better storage and handling methods have virtually eliminated the risk of aflatoxin ingestion, aflatoxin is a known carcinogen that is twenty times more toxic than DDT and has also been linked to mental retardation and lowered intelligence." Needless to say, I don't eat peanuts anymore! Even organic ones are not safe (in fact, perhaps worse, since the chemicals in non-organic, pesticide-treated and supermarket-bought peanut butter probably kill off the fungus etc. Ironic, ain't it?). Margaret, Florence, Italy.
It isn't my conclusion, that one must stick to the Gerson diet for 18 months to 2 years, it is what is stated in the Gerson literature. The point, I gather, is that the body starts a detoxification process that is cumulative and needs time to finish, sort of like when you take an antibiotic you have to keep on taking the antibiotic for the full dose - you are not supposed to stop just because you feel better, becuase then you set yourself up for trouble by helping to create antibiotic resistant bacteria. Apparently there have been a number of cases where people started to feel great after a few months on the Gerson diet and relaxed too much too soon, thinking they were already cured, and had bad outcomes. Who knows? I certainly don't. I do know that there is a fair amount of documentation on the diet, and that the details of the diet are apparently very important. I just finished reading a book by Beata Bishop who used the Gerson diet to cure herself of metastasized melanoma. She had 6 weeks to 6 months to live when she started. And she went through the same thought process you mention: with such a short time to live, do you throw it all to the wind and go travel or whatever in the remaining time you have? or do you squander it trying to heal yourself, with no guarantees? It is a question that has no set answer.It seems to me that with myeloma one has the opportunity to try a conjuuction of conventional and alternative approaches, avoiding chemotherapy (cytotoxic agents)but still using anti myeloma drugs, and using alternative measures which perhaps might potentiate the drugs (in the way that curcumin apparently potentiates thal and dex). I also wonder whether the detox elments of the Gerson diet couold help to fend off PN from Thal, for instance (something on my mind a lot these days).
I also think perhaps that a diet that works for one person might not work for another. I am not a fan of the blood type diet (when i read the book I felt there were some logical gaps in the reasoning, although I don't remember my objections now) but the basic idea that different people will have different nutritional needs makes total sense to me. An alternative health practicioner I go to tried recently to tell me that all meat is bad. I told her about how I had been a vegetarian for 10 years, then got pregnant with my first child and became severely anemic. For the first time in ten years, when i saw red meat at the grocery store I was not repulsed; rather I was strongly attracted to it: it looked beautiful. I bought some and took it home and cooked it: I worried I would feel disgusted by it, but my taste buds exploded with joy. It was a bizarre experience. This continued till a couple of months after I gave birth, and then my desire for red meat faded and I became my usual vegetarian self - till I became pregant with my second child, and again my body informed me that it wanted and needed red meat. i ate meat throughout that pregnancy (never got anemic) and after giving birth I tapered naturally off the red meat. Now i eat it from time to time when my body sends a signal that it needs some.If anyone tells me that red meat is "bad," i would have to respond that it might be bad for some people in some contexts (and for sure organic would be better, if you can get it); for other people in other contexts it might be completely necessary.
If I had MM, I would trust my body to let me know if whatever diet i was on was working or not. (My husband felt within the first two weeks that something in his body was responding powerfully to his radical shift in diet: his sense of smell improved dramatically, his hemmorhoids disappeared, his toe nail fungus improved, his headaches and gastric troubles faded away. It was all quite dramatic). If I felt whatever diet i was on wasn't working, I'd try something else. I know someone who cured herself of cancer by shifting to an all raw diet that involves large amounts of raw bison heart and raw wild salmon every day, plus the Gerson quantities of fresh pressed juice. She started with the Gerson diet and decided within a week it wasn't going to help her, but kept the elments that she felt were working (the juices) and then experimented with other approaches till she found something that worked for her. She trusted her body to lead the way, and it worked.
Very interesting post, Lisa. The only problem I have with your comment on trusting our bodies to lead the way is that my inclination, to be totally honest, would be to eat chocolate cake from morning till night. I know that's not good for me, since cancer cells love sugar. I try to avoid sugar, although I do eat some chocolate (because stress is bad for us, too; it increases our IL-6 levels, and life without chocolate would be stressful for me...;-)). Anyway, I am convinced that Gerson is working for your husband, and I wish I could make several juices a day, like you do. That would be great. But to follow this diet properly, we would all need full-time assistants (like fabulous you!). Let's not forget Michael Gearin-Tosh (my hero), who was on the Gerson diet until he died (and he would undoubtedly still be alive if he hadn't refused to take antibiotics for a septic infection...too bad!). So I think Gerson has a lot of good elements, not least of which, the juicing ones. So, in sum, try a bit of this, a bit of that, and see what works for you. That makes sense to me, and, in fact, it's what I am doing already: testing different supplements for a couple of months, one at a time, and then having blood tests done. You could do the same with dietary changes, methinks. Diet DOES matter, even though all the well known MM specialists I have been in touch with (U.S. and Italian) told me it doesn't. I find that so outrageous! Margaret, Florence, Italy
I've recently been looking into the Gonzalez diet plan. I'll post the web site below. Gonzalez believes that most blood cancer patients should eat red meat a couple of times a day to stay acidic. Cancer patients with solid tumors (breast, prostate, colon, etc.) should eat a plant-based diet, no red meat, and avoid all dairy products. I've recently switched from green juices to carrot juice, amd have added grass-fed organic red meat to my diet,so we'll see what happens. I was on a high alkaline diet for three years, but then experienced "trouble." So, a switch, or something different, was in order. I hope this is a good solution.
www.dr-gonzalez.com
Regarding juicing: it's easy to make juices 24 hours ahead of time and preserve the enzymes if you use a jar attachment on a Food Saver and Ball quart-size jars. It really works!
Cathy
Cathy (hi!!!!), now that is one of THE most interesting things I have read here so far! (And there have been many.) I have been avoiding red meat like the plague except on occasion when my energy buries itself under our cotto floor, so to speak, and I figure it's my ferritin hitting an all-time low again. So then I go out and buy a steak (which makes my carnivore husband super happy), and do feel better after eating it. We eat steak with our own homegrown arugula (rucola, in Italian), and balsamic vinaigrette. Even I, a wannabe vegetarian, like that combo. And here I have been trying to keep alkaline for months, following an acid-alkaline chart that I have in my kitchen...! But what you say is most interesting...serious FOOD for thought! I will have a look at this diet. At all of them, actually. And while we are on the diet topic, has anyone by any chance come across a chocolate cake one for me and Linda? ;-) Margaret, Florence, Italy.
Margaret,
See, you ARE following your body's lead if you eat a steak when your body tells you it needs it! :-) Can you tell me more about the acid alkaline chart you use? We do use PH strips every morning, and my husband's PH is actually better than mine since he started the diet. But, i heard that medicines can change the acid alkaline balance so that may not be indicative. By the way, one thing we are doing that i have not seen mentioned here is that my husband drinks a glass of edible clay (terramin clay, I think - would have to go check) dissolved in water every morning, first thing. I do it too. Someone I know recommended this and said that she has laid down new enamel on her teeth as a result of doing so (something that is supposedly impossible). The other thing I wanted to bring attention to is digestive enzymes. The book How to Prevent and Treat Cancer with Natural Medicine mentions a study in which stage II myeloma patients who used proteolytic enzymes increased their survival time by 36 months vs not using enzymes. Also, the book The Choice by.... oh, I am forgetting her name now, but she is Irish, I think, and survived cancer two or three times and healed herself through diet, mentions digestive enzymes as being very important - along with probiotics (which we also use).
Lisa-
After reading "the enzyme cure" years ago I studied up on the subject. I now supplement with a broad spectrum enzyme, nattokinase, and wobenzyme (supplement common in Germany). Wobenzyme is also a mixture of enzymes, different than the general enzymes, with studied benefits for mmers among other cancers. Probiotics as well.
David
Link to personal experience- juicing-
http://www.whale.to/a/spi...
Lisa, I have an acid/alkaline chart that I downloaded from Internet a while ago. Sorry, I don't have the website specifics, but there are many of these charts online. Just do a search, and you will find one for sure. Make sure it's comprehensive, with lots of foods listed, including nuts. Hey, speaking of steaks, after having blood tests done yesterday, I felt a bit weak, still do, so this morning I went and bought myself a big steak. We are lucky here in Tuscany to have access to very tasty meat from a special breed called Chianina that has been raised in the open, on the Tuscan plains, for centuries. I mean, these herds were raised by the ancient Etruscans and Romans! Well, I don't mean that I am eating ancient fossilized meat, of course (yuck), but meat from the present bovine generations. ;-) Seriously, though, no hormones, no antibiotics. I don't take enzymes, but will look into that, too. Thanks everyone, for all these tips! Margaret, Florence, Italy
The book, "Eat Right for Your Blood Type," is quite interesting. I loaned it to a friend, so I don't remember the author's name. At any rate, it argues that certain blood types require red meat in their diets, while others don't. It is well-researched. I am Blood Type A, and the book suggests that I watch my red meat intake. I feel so much better when I don't eat red meat. When I need protein, I do turkey and chicken and also do the bean thing. Again, it is a very interesting read. It also gives other suggestions as far as various types of foods that work better with a particular blood type. Yes, it means more reading but well worth it. Then each person can decide if it is something they want to consider or at least keep in mind.
Sandra-
Interesting book- after all this talk of the benefit of red meat, protein, etc. I will now read it again.
http://www.amazon.com/Eat...
-which foods, spices...help maintain optimal health
-which vitamins and supplements to emphasize or avoid
medications, stress, mode of exercise, etc.
I will also take the metabolism test mentioned here a few days ago-
www.metabolictypingonline...
Then report back-
David
Hi, Margaret.
Good idea to follow your hunger instincts and eat a steak. As for that chocolate cake, moderation is the key, I suspect. Sugar will make MM grow. Maybe you can use Stevia or agave nectar in place of sugar and have your cake and eat it, too!
Cathy
Thanks, Cathy. Yes, I know about sugar and cancer cells. I haven't had any chocolate cake in ages, I was really kidding about that, but I do on occasion eat some good chocolate. Tuscany (in addition to having tasty and safe Chianina meat!) is known to chocolate connoisseurs as Chocolate Valley. The Tuscan maitre chocolatiers here have won many international prizes, etc. You wouldn't believe how wonderful their chocolate is, plus it has no bad stuff in it. Gee, perhaps they should hire me at the Tuscan Tourism Propaganda Office! I could be really good at this. ;-) Margaret, Florence, Italy
John has followed the Gonzales advice and eats a lot of red meat, chicken and turkey - he needs the protein. He was going to a very smart nutritionist who studies with a big guru (whose name escapes me now - Sam McQueen maybe ? ) and she stressed his need for lots of protein, even protein shakes which he will not do. She also was big on absorption in the gut and he takes special supplements in butter every day. We make up big batches of it for him.
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
This issue about the Gonzales diet has been on my mind for months. We opted for Gerson instead (polar opposite) because of my husband's inability (at that time) to take many supplements, plus the fact that my husband's diet was ALREADY heavily acidic, heavy on red meat etc. And that didn't stop him from getting MM. Plus there is no way at all to get organic or grass fed meat here - can't be bought in the stores, and can't be ordered by air mail (because the health dept. won't let meat products into the country via the postal service). But, it has always been at the back of my mind that after doing Gerson as a detox, we would consider swinging over to teh Gonzales camp for maintenance, if the situation seemed to warrant it. So, it is very interesting to me to read these posts about Gonzales.
Regarding Gerson and detox, my husband has actually started to enjoy the coffee enemas (who woulda thought? certainly not him!) and finds them a great relief. Two a day, not enough by Gerson standars but something. He is now very sure they are doing something positive even though the detox symptoms are not pleasant. Afterwards he feels a great sense of relief. Lately he's been telling me I should do them too! (I might, if i could find the time!)
Both Gonzalez and his partner Linda Isaacs do coffee enemas daily, I believe. They say it cleans the liver of toxins and reduces stress on the body. The enemas also clear reactions, in most cases.
Michael Gearin-Tosh did very well on the Gerson diet, so it works for some people. I was on a modified Gerson plan that also had metabolic typing as its basis. It worked for awhile, and then didn't. So, I needed to make a change. I also should have monitored my metabolic type more regularly, because we can switch from one type to another and need to change diets accordingly, according to their philosophy. Your husband's wonderful labs indicate that he's doing the right thing for now. I've been told that we need to keep changing things with MM, to fool it into reacting to new things instead of growing out of control.
Cathy
Barbara, what supplements does John take( the ones you mention prepared in butter)?
Thanks
Lisa
Barbara,
Wht are the supplements in butter that you make? They sound interesting. I've been eating a lot of butter lately, since I'm supposed to use fat for energy. I could eat a stick of butter every day. Now I know how Margaret feels about chocolate!
Cathy - the mix he uses was prescribed by a nutritionist according to the blood panels done by some special lab she uses in Colorado. I feel pretty sure it is a Sam Queen protocol. I don't know if it is for everyone, but she has it in a prepared handout and does tweak it according to what the blood work she does indicates is needed:
Immune Mucosa Rebuilder
1/2 cup of extra virgin olive oil
1 stick of lightly salted organic butter
1 tbs raw honey
12 caps Factor 4 (a probiotic)
1 scoop of Colostrum powder 6000 mg
1/2 tsp glutamine powder
For John she added:
7 PepzinJi caps
10 N-acetyl glucosamine (NAG)
Blend and refrigerate. Eat 1 tbs a day for 2 weeks then 1 tsp thereafter
He stopped going to her a year ago (not covered by insurance and too expensive, but still uses the butter formula)
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
Barbara-
Why will John not do protein shakes? I mix whey protein (different mixes available) each morning with milk and a raw egg. Yes, I acknowledge the risk. Lots of vit, min, protein- and they taste pretty good too.
What is the benefit of "She also was big on absorption in the gut and he takes special supplements in butter every day?"
David
David - I have no idea why he won't do the protein shakes. It was stressed that he do them, we have all the powders right at hand, but he just does not follow the instructions. The nutritionist gave him lots of different things to do with food, from cold avocado soup, drinking water with lemon or lime daily, etc, but he never took to any of it. I know if I was a really good wife I would do them for him, but I did try and would end up throwing them away because they would sit on the counter.
I don't remember why she recommended the butter, but obviously she felt his gut mucosa was in bad shape and needed to be rebuilt so he could absorb the nutrients. Her program was so intensive, tons of supplements that overwhelmed even John who has taken a lot even before MM. He just could not keep up with it all, and I have been told it is not unusual for her patients to fall by the wayside from sheer and expense.
I think he feels more comfortable with our herbalist, Dr Ba, and prefers to go with his recommendations.
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
Barbara-
I can't speak for why John does or does not take/do certain things but I can say that the many lifestyle changes that we mmers are exposed to can be overwhelming. I have added protein shakes into my day because they taste good and make me feel good.
It is only my opinion but I do not believe that it is up to the caregiver to take on all of the responsibility to make the necessary lifestyle changes- "I know if I was a really good wife I would do them for him..."
I also think that gradual improvement is the way to go- add an improvement every once-in-awhile- a bunch all at once can be too much to take.
David
Thanks for the explanation of the butter supplements in your other post, Barbara. Interesting choices.
I agree that we need to take both digestive enzymes and probiotics for maximum absorption and healthy bacterial flora. Both have made a huge difference in my well-being. Food combining can also increase intestinal absorption and decrease fermentation, I've found.
Regarding protein shakes made with soy (not that anyone has mentioned drinking soy protein shakes, but just in case someone does), I've been told that soy protein must be avoided. The Australians conducted a recent study that showed how soy depleted both thyroid and pancreatic cells. I don't have the link to the study, or I would include it here.
Cathy
Does anyone know the best way to take probiotics to maximize absorption/effectiveness? I've seen recommendations both to take with food and not take with food.
Also, if one is currently on abtibiotics, is it better to take probiotics throughout the course of antibiotics, as well as continue afterwards, or is that throwing money down the drain and should one just wait till the antibiotics have ended? I've heard both opinions and would like to know what others think. Thanks so much.
Lisa, I don't know about other countries, of course, but here in Italy we have probiotics that are not killed off by the antibiotics, and can be taken at the same time without interference. So there must be similar products in Cyprus, no?
Margaret, SMM in Florence
Lisa-
The label on my probiotic supplements tell me to take them before meals so I do.
As for probiotics and antibiotics, while I don't have any scientific basis, I have my son eat as much yogurt as possible while he is on antibiotics (which is a couple of times each school year).
David
I've always taken Metagenics probiotics first thing in the AM and last thing in the PM, away from food, as recommended. Recently, however, I've started a new probiotic made by Klare Labs that says to eat it on cold food or to mix it in water. This came as a surprise to me. I usually just take it in water once a day, but not at a specific time,in accordance with the package directions. So, the manufacturer decides the best method for the product, I think.
Tbanks for input! A friend told me that she thinks the best probiotic out there is Dr. Ohira's probiotic 12plus. I have no basis for evaluating this statement, just passing it along.
I have NO idea what I have never gotten any PN with thal nor with Velcade. I have took vitamin E with selenium and zinc with the use of both drugs. I ignored Dr. Berenson's advice not to use it with Velcade. It may be why Velcade was not as effective as it should have been for me, but it also could be why I got no PN. (David--I really wish there were a way to insert a space to start a new paragraph!!!) Sorry, Lisa, I realize that that is what Gerson and not you have to say. And I am not against it. But the people that all died from the Gerson clinic--they stayed on the diet until the day they died. I do not know if you know this or not, but it has actually been studied by the government. I do not remember the conclusion--but it was not anything spectacular. (The Livingston Wheeler clinic here actually made people worse--it is no longer around). I forgot to tell you that. I had not eaten red meat for years, and then one day I got a craving for a hamburger. I still have no idea why. And I did not get it again. A lot of people told me to build iron levels to eat various red meat products. I will ignore that advice. Organic beef is relatively inexpensive at Costco. (Are we allowed to say that here?).
At other places, organic meat, red or not, is expensive. I really do believe that, generally, it is better for all sorts of reasons to eat lower on the food chain. One thing I forgot to mention is the connection between cancer and sugar. If you get a PT-scan (I think)
you will be injected with a glucose dye (or is it a CT-scan). The cancer cells shows up on the scan. So I can see the logic of that. But if the sugar really caused cancer, then it would seem that most diabetics would also have cancer, or everyone who eat lots of sugar would have cancer, and, as far as I know, it is just not so. The juicing of vegetables really makes sense to me, but for most people, it is really a lot of work. I could never do it very successfully. One other things that I mentioned on the acor list was about acidity of the foods you eat. This was quickly shot down, as the body does correct is pH level. But, as I see it, the more acidic foods you eat, the more work it takes to correct it. One thing you can take is barley grass pills (it comes other ways, which I am unable to take whatsoever). This can help to keep your body more basic, or, at least, maybe not do as much work. I have no idea about raw bison heart. What is the theory of that? Wild salmon is because of the fish oils. At any rate, I think we can agree on most of it. It is always hard to find out what to eat and how to supplement and what is just a bunch of B.S. My local oncologist told me "Your diet does not matter". I do not believe this, actually.
Alex
a.maas@cox.net
I feel a lot better now after the transfusion two days ago.
Alex,
You might be interested in looking into this web site about metabolic typing:
www.metabolictypingonline...
There is a test for $39 that will tell you which diet is best suited for your metabolic type. The site recommends working with a nutritionist who knows about metabolic typing. Could be costly by the time all is said and done, but the site is highly recommended by alternative practitioners. I'm following one of the diets now. Too soon to tell if it's effective, but will keep you posted.
Cathy
Alex and all-
Format changes to this listserv are in the works. "(David--I really wish there were a way to insert a space to start a new paragraph!!!)"
I too get frustrated with continuous blocks of copy- These changes will take time- probably 3-5 weeks- There are several changes to b-m.org, like the CPS design and implementation, line breaks and thread reprogramming, a google adwords program- please hang in there. I believe that the site will serve all of us better and better in the future.
David
Glad you feel better after the transfusion, Alex!
A few questions, if i may?: how long did the people who went to the Gerson clinic live, do you know? Were they on the full juice protocolafter they left? What kind of therapy did the LIvingston Wheeler clinic offer?
I read something about a government study of Gerson but I remember reading that the study structure was problematic. And I remember reading about a relatively recent review article assessing six cases treated by Gerson. I need to look all this stuff up.
It is obvious to me that diet matters. They used to think that vitamins don't matter during pregnancy, too. Now try to find an OB who will say that folic acid doesn't matter!
About raw bison heart - bison, because meat needs to be grass fed (a la Mercola and others), and heart - I think because it is so very high in CoQ 10, among other reasons (Co Q 10 is on the Gerson supplement list, and we are using it. My husband noticed that once, when we ran out for a ocuple of days and couldn't get more (hard to find here, and very expensive) that he felt more lethargic; the minute he took Co Q 10 again he felt better.)
The point is Lisa that these people never strayed from the Gerson diet, but it did not help them. It is like it is with myeloma--it is just not going to cure it, I am afraid. Livingston-Wheeler had almost exactly the same kind of diet, and they would make you buy their brand of vitamins. She streseed building up the immune system. In conventional medicine, this has been studied for 20 years, and the fruits of this we will see in 5 years. I do not know how it will apply to us. At any rate, I think that diet can help us achieve remission, together with drugs and help to keep us in remission longer. I just do not think it will cure anyone of myeloma. I do not know the particulars of the study, but it is the same. Fortunately, in the last 5 years we have a lot of drugs available that can now help us and those with other types of cancer..thalidomide, Velcade, and such. There are many more drugs that will be coming..but not the ones that a certain acor list member is always talking about. They are more refined versions of angiogenesis inhibitors, but it will be quite a few years. This is one of the many ways that thalidomide works. Look at the site of L-path for example, and Celgene has bought out some companies that have similar things in the works. I am surprised that all of you like Mercola so much, as I do not remember now, but I came to the conclusion that he was impractical and quite off on some of what he says. You could say--well he has no cancer, so that is proof. There are naturopaths or M.D.s like Dr. Weill who do not have cancer either. Look for the commonalities that these people preach, and think real hard about the rest.
Alex
a.maas@cox.net
Alex, I still would be interested, if you know, in knowing how long these people lived. An extended remission without drugs is not something to sneeze at, and I'm collecting survivor stories - I really do want to know how long different people have managed to go using alternative methods (as well as using conventional methods).
And, I do think knowing the extent of one's adherence to the protocol is important. For instance, I could say that my husband is doing Gerson, since we're doing a whole lot of the protocol, trying to follow the dietary guidelines to the letter most of the time, etc. But, according to the Gerson rules, he really isn't. He's doing a variation, a modification, a dilution. If he can't get to remission through what he is doing, can one say that Gerson didn't work for him? No, because he really isn't doing Gerson, with the hourly juices etc.He's doing a kinda sorta version. So all one could say, in that regard, would be that the kinda sorta version didn't work, not that Gerson didn't work.
That guy I talked to who did only Gerson after radiation for a spinal tumor and who said he was diagnosed in 1980 did, from the sound of it, the REAL protocol - his idea of cheating was occasionally to use a 16 ounce juice in a two hour period instead of an 8 ounce juice every hour. If a person is still in remission 27 years down the road, does it matter so much whether or not he is formally cured?
With all of the diet gurus, I believe that the biggest danger is in thinking that one diet will work for everyone. I think the biggest contribution of Mercola and Adamo (is the the name of the blood type diet guy?) is in suggesting that different people will have different dietary needs. Right now we have quite a situation in our family because my son (who only has one kidney) needs to be on a low protein, low salt diet (if he would eat the Gerson diet I"d have it made, but he won't); my husband is on Gerson, my daughter and I both have low iron stores and are supposed to be eating red meat, and I've also been advised to eat an anti-inflammatory, no nightshades diet (Gerson is big on the nightshades, alas). Trying to pull a meal together for all of us is not an easy feat!
As for practicality - as far as I can tell, a healthy diet is very impractical in terms of time needed to prepare, etc, but absolutely essential.If I ever have time to write anything ever again, I might take up a project on how feminism can grapple with issues of health: busy two career families are a lot harder to manage when you rule out convenience products! A while ago a friend of mine with three kids, a stressful academic job, a husband who travels a lot, and a lot of creative projects ongoing told me how she manages to do it all: her kids eat pizza and Subway, almost every night. Her version of cooking is to slit open the boil in bag and dump the meal into a bowl. Ironically enough (this was before my husband's diagnosis), i told her that I could never do that because I have too much cancer in my family and I'd be terrified of the impact on my family's health. About a month later, we found out about my husband's MM.
I only have one kidney and MGUS- what part of the Gerson do you think he can't do- I think it's the no water part and I do a lot of the Gerson but the no water.I think we all have to trust ourselves in this- we were raised with a "do as the Dr says" mentality ingrained by Big Pharma. And now we have something they don't really know how to treat and hate to see us coming because they (Drs) don't know how to say " I don't know". David and anyone you read about is following his gut and trusting his body for the feedback he needs.
Lisa, you're feeling overwhelmed, I hear it in your posts- First rule- take care of the caregiver or you will get sick- go to the movies, have a day where you pretend everyone is OK. Get a massage!Trust yourself. That's my soapbox for today-
Portlandrose, Thanks, you are very right about this. Rule number one, I suppose I should not be reading this forum at 1:30 am! :-)
I think you're absolutely right about trusting oneself. When the docs don't know, what else can one do? Re Gerson, We don't follow the no water rule either. I think with MM that would be playing with fire. And with only one kidney, doubly so. In our case we have also been adapting protein levels to meet my husband's particular needs of infection and wound healing. With my son, it is a simpler matter because it is just preventative stuff, to take care of his one kidney.I just pray he doesn't face something like this later in life. They do say MM is not hereditary, hope they are right on that one.
Lisa brings up a good point- Anyone have any of their symptoms in their family? My Mom had diabetes so Drs just attributed any problems to diabetes. She had PN and her knees gave out on her for about 2 months then suddenly she became paralised from the waist down. A neurologist I took her to said her spine was deteriorated. Hmmm. Just makes me wonder if she had the diabetes and MGUS?
David,
I find the way these threads work confusing, as I wish this were all moved into a thread about diet. Can you do this? .......At any rate, Lisa, at some point, of course, convenience cannot take precedence over health. When my son was six years old, he was diagnosed with high blood pressure. I was told that few pediatricians ever bother to check. I found a very good book in the library down the street (which happens to be a crummy library) written by an M.D. (sorry, I prefer books written by M.D.s). He said the first thing to try was to eliminate salt from his diet. At that time, I did not live with my son's mother, and she gave him a lot of instant macaroni and cheese and fast food. It was a struggle, but I got her to stop. And..lo and behold..his high blood pressure went to normal.
Not all people are salt sensitive like this. But it worked for him.
In fact, he was taken off of one drug, and was going to get paid for a study for another drug. When he was off the drug, his blood pressure was completely normal, so he could not get on the study, much to his dismay. He was planning to buy a PlayStation II with the money. (He is 14 now). But this is far different than taking the time to juice a massive amount of vegetables every day. I just find that what you are saying about Gerson is just too close to what I hear alternative practiioners say every time their methods do not work. You did not do it right. Would any doctor tell you thalidomide/dex did not work because you did not take them right? That is my problem with that.
With any medication,it says if you skip them..just pick up where you left off, and do not double the next dosage or anything. And Dr. Durie
responded in a lecture to a question I asked that one of his first patients on thalidomide had a good response to 50 mg thal every other day. He prescribed it every day, but she sheepishly admitted it made her too sleepy (originally designed as a tranquilizer before it was used as an anti-nausea drug for pregnant women). So that is my problem with this kind of thinking--that is you do not adhere exactly to the diet every day it does not work. I would not go by what anyone said if someone is formally cured. Probably doctors would attribute David's condition to "spontaneous remission" which is total B.S. We do not know if it is the antineoplaston therapy or what he did after, but it was NOT spontaneous remission. Re:Subway..I think Jarod still needs to lose weight!! And there are lots of testionials of people with solid tumors for whom diet has worked. But what we have is harder. And, of course, it is a good thing to extend remission time..that was my point. I think I might even still be in remission from thal/dex if I had stuck to a good diet. Unfortunately, the thal put me in a mental hospital where they food was absolutely terrible. There was nothing healthy whatsoever, and they had a nutritionist who actually went to lecture us about the 4 food groups..from the 60s. How outdated is that? But, you know, as sort of condemned with this disease, we do have to live a little. Fortunately, I do not have a daily craving for chocolate cake!!
Alex and all-
There are several aspects of the listserv that are going to be fixed-
1) the threads- I tried to maintain the format of the site and sdis but the idea hasn't worked-
2) formatting of posts- the posts looks fine when written but becomes one big block of type when its actually posted- we need to be able to maintain line breaks-
3) URL's- the list now converts long url's into "external link." this problem has already been addressed-
anything else?
David
Alex, if I may, how long DID those people you are talking about who did Gerson live? I really do want to know. Please tell me. Don't worry, I won't be traumatized if you tell me they succumbed after a year or something.
As for why things work or don't work: if you take a drug the wrong way it won't work the way it is supposed to. Take too big a dose and it might harm you or even kill you. Take too small a dose and it might not have the desired effect or any effect at all. (I think Margaret once posted about taking half the dose of curcumin she intended - and her numbers went up??) As for Gerson, the literature says clearly that if you miss a juice once in a while, it's not the end of the world. But if you REPEATEDLY ignore the guidelines, it matters. They compare food and juice on the Gerson diet to medication, and give the example of a diabetic missing their shot of insulin. You would never tell a diabetic it doesn't matter if they don't take their insulin correctly, would you?
At any rate, none of this is issue for argument. We all try what we think might work. The nice thing about this forum is that people can share epxeriences,and other people might learn from them, either as something to try or something to avoid!
Alex-
1)"David, I find the way these threads work confusing, as I wish this were all moved into a thread about diet. Can you do this? ....."
As I posted yesterday, yes, I plan to redesign how the "threads" work on this list. While I think threads have a place on the site and with the sdi's I am at a loss for how to use them on the list. My original thinking was to have the threads used as an organizational method( archives). Does anyone have any ideas as to how to use threads on this list?
2)"So that is my problem with this kind of thinking--that is you do not adhere exactly to the diet every day it does not work. I would not go by what anyone said if someone is formally cured. Probably doctors would attribute David's condition to "spontaneous remission" which is total B.S. We do not know if it is the antineoplaston therapy or what he did after, but it was NOT spontaneous remission."
Something that my psychologist older sister told me about 10 yrs ago about lifestyle changes like diet has stuck with me- Ellen told me not to put too much pressure on myself and to understand that "every little bit helps."
Conventional oncs debate dosages routinely. Should it be 50mg every other day of thal or 200mg each day? Something like the Gerson diet is most beneficial if strictly adhered to daily but even modest juicing is beneficial.
David
I just started Velcade Friday, but I had gotten labs drawn before for a baseline. My urine protein is now 4000 mg 24 hours, as I have posted I have been very anemic, and my Beta-2 Microglobulin is now at an all time high of 17.2 I think this might terrify some oncologists, but I do feel just fine. I felt fine before my last transfusion, which I really could not understand, except that my body had probably adjusted to being anemic. My hemoglobin was 6.8, and I have heard others tell me they have no energy when their hemoglobin is around 10. Yet two days before the transfusion I had swum about a mile. I really do not understand this at all.
Actually, this is NOT why I am posting. Obviously the things I have been trying, resveratrol, curcumin, vitamin D, C-Statin, and Carao were not working to keep my myeloma in control. I am not sure how I should now proceed. I have seen what you have posted, that you add one thing at a time. That would be okay with thalidomide, but I really do not want to do this with Velcade, as normally it works much faster.
I am unsure if I should just keep doing what I am doing or cut some of them out. I actually have no idea. I may or may not ask Dr. Berensona about this, but as radical as he is, I think the last time I mentioned something about curcumin he just ignored it.
What would you do in my situation?
Thanks. Oh..and after the transfusion my hemoglobin was probably about 8.8..still pretty low for most people. I rode my bike yesterday for an hour and again swam a mile. This summer I will not let the anemia defeat my fun.
Alex Maas
a.maas@cox.net
good to get yr feedback alex.
shame about the lack of response to caraco for Hb.
you probably are aware of the latest velcade/doxil data - enhanced % response.
my news is not so good. mm counts jumped after 29 may zometa infusion,with chest infection......dry barking cough that i still have. feel listless,and sleep much of the time.
Hb has also gone down to 9.9 (this is with EPO)
the burning esophagus problems make walking 50 yds or so very unpleasant.
i have just started raw ginger juice to see if this helps.
not done any dex for 3 weeks (was 20 mg once a week),nor thalidomide for 4 weeks
(100,50,50 mg per week)
paraprotein went up from 27 to 37 g/L........IgA from 34 to 43g/L (3400 to 4300)
strangely,this is the first 'cold' since jan '05
another velcade combo might be with the anti heat shock proteins. do you know anything about Hp 90 (i think it is)?
i like the way you can still burst out on the bike!!!!!!
joe
Alex and Joe:
You both are good at knowing much more info in much more scientific terms and relating it back to the rest of us in words that we can understand. To see you now both needing that same expertise and knowledge in return, I hope that you receive that with the same gusto and wit that you provide to us. I am wondering also Joe, I've heard you mention often that the doctors do not know of what causes the burning esophagus. I am wondering what is your own unscientific and wild guess at what is causing that burning. You mentioned tests ruled out ulcer and heart problems, I think. I like the sound of raw ginger juice, with all my success with ginger for digestion and that I think Margaret once told me it was in the same family as curcumin (I hope you said that, Margaret, if memory serves me).
i found the ginger juice remedy here: http://askwaltstollmd.com...
also,reading so many people with these problems it seems that mine is much the same.
why it has developed i don't know.
i think it began a little 3 months before i began dex in jan '06......perhaps around the time
that i was using powdered honokiol into hot water with honey. this was very acrid.
maybe it set it off. i found that i was getting a sort of hot sensation around my solar plexus
upwards after about 15 miles on the bike.
later came dex and proton pump inhibitor drugs.
it used to require some 'exercise load' to bring on the burning,at the moment it does not take much at all.
so i hope the ginger juice does it.
3 rd day today......yesterday made me feel sharply nauseaous. quite strange!
joe
I looked at the website and one of the posts that mentions to try taking with aloe juice sounded good, since aloe is good for burns (burning sensation?) and it is also on the CAM websites as an aid in anti carcinogen nutrition. I can find it at my local drug store in half gallon or quarts. So apparently the pharmacist likes it. I've read bad results in trying to make the juice yourself out of the aloe plants, bacteria sets up easily.
Linda
Regardless what is cauing the burning, I believe the solution is one of the two strongest acid blockers, either Previcid 30 mg or Nexium. I would suggest not messing with the less potent OTC options out there. Depending how long you have been suffering, it may take up to a month to get total relief.
Terry
yes i added pariet x 2 yesterday.
i have other stuff happening now,a harsh dry cough for the last 5 weeks.
had an x-ray today.
here is the report:
(myeloma,immune suppressed,cough and dyspnoea)
Findings: The heart is enlarged (CTR 19.5:35),the lungs are congested. Septal shadowing is present
consistent with the presence of interstitial oedema. Small pleural collections are present.
There may be some superimposed active infective component present but no lobar consolidation
or collapse is seen.
Review following therapy is suggested to access clearing of any reversible changes.
Comment: Cardiac enlargement and changes of cardiac failure with interstitial oedema.
terry,any ideas?
my hem/doc sent a script for diuretics. will see him on monday fro another blood test.
joe
Joe,
All I can do is talk from my own experience. When I developed pneumonia about five years ago, I immediately saw my internist since I did not believe my MM was my immediate concern. Although I immediately stopped the only immune suppressing drug I was on, thalidomide, and was on two IV antibiotics, my white count continued to drop (in the hospital) and the pneumonia continued to grow over a week's time. My internist, who I trust with my life, suggested we call in a infection specialist (yes there are such specialists) who suggested I try G-CSF, an amazing new genetically engineered drug that gets your own immune system involved. It is delivered as a tiny shot in the fat of the stomach, which I was very familiar with since I had one a day when they were harvesting my stem cells at the Mayo. Within 24 hours my white count was normal and the pneumonia was on the retreat. One more G-CSF shot and my white count had doubled again and I was discharged. Two weeks later my x-ray showed no sign of pneumonia, which my internist said was amazing. I would suggest you get to the doctor you trust with your general health and try to get yourself squared away. When I did get back to my oncologist several weeks later he was a little perturbed I had not contacted him and indicated he would not have used the G-CSF. Needless to say, this did not bother me.
1) I looked up probiotics in Mayo Clinic info. Why would someone with MM take probiotics?
2) My lab results on the dead bone taken from my upper jaw. The diagnosis is osteomyelitis rather than osteonecrosis. I don't know why this diagnosis was made but it sounds more benign.
3) Because of my persistent anemia (My dr. measures it with the hemocrit rather than hemoglobin numbers. My hemocrit is 27 (should be 36) and because my IgA has been creeping up about 200-300 points every six weeks (it's now 3000), he is prescribing Revlimid 10mg. along with dex only once a week. He roundly approves of my continuing with curcumin. I'll start as soon as he gets the necessary paperwork rolling.
Alex, you're a wonder to do swimming and bicycling. However, I've been able to run my household singlehandedly through all this.
I don't know of any direct studies of probiotics in relation to MM, but my reading suggests probiotics have an overall highly beneficial aspect for all disease, including cancer. Among other things, they help your body absorb nutrients from food and supplements, and are a counteractive to the chronic harmful aspects of our food supply (pesticides, chemicals etc.). Years ago I went to an alternative practicioner who prescribed large amounts of probiotic capsules daily. He said his father had had cancer and after a couple of months on huge doses of probiotics plus a special diet, he was cancer free. He mentioned clients of his who took entire bottles of probiotics daily to successfully defeat various serious health problems. Bernadette BOhan, author of The Choice, who defied cancer several times, urges probiotics for everyone.I take them myself, but in a lower dose than my husband. (Haven't had a yeast infection in years, whereas before I used to have them regularly). THe book HOw to Prevent and Treat Cancer with Natural Medicine recommends probiotics to help us absorb the nutrients from the food we eat, to maintain immune funcution, to regulate cholestorol metabolism, and to process toxin loads. They say that probiotics "may hold the key to preventing many forms of cancer, both within the intestinal tract and in other tissues". They also say that "various probiotic species have demonstrated immune enhancing and antitumor effects, but they also play a critical role in the detoxification of many cancer-causing substances." In a double blind trial involving patients with bladder cancer, patients who took probiotics had fewer cancer recurrences. The book cites a product called "Innersync Plus" as being especially effective.
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