I have been organic veegan for almost 2 months- I read a lot about the Gerson therapy and haven't adopted all the juicing but am starting my days with some fresh juice- got a new juicer- In Oregon, where I live, Organic veggies are getting plentiful as the spring progresses. Whole Foods has proved to corporate America that Organics are profitable and my local Safeway now offers an Organic brand. I subscribe to a local CSA (Community Supportive Agriculture) and in May will start recieving weekly boxes of fresh veggise picked within a day or 2 from a local farm. The boxes are so large, I split them with another single neighbor. I still am searching for good recipes, I want hot food that has no cheese but am having trouble finding those recipes. I did find organic cheese. I am diagnosed MGUS, but my actions to become healthy and Vegan have given me a focus and put something in place of the activities I have given up because of constant nerve pain.So I find a mental health value in this diet also- and enjoy feeding my friends good tasting vegaan foods and suprising them.

sunnylady1
I hope this won't be an imposition on you Alex, but since I have had no chemotherapy or radiation (and don't intend to get them), I am rather unfamiliar with many of the medication terms. I am however, educating myself through Google. I love it! Anyway, would you mind telling me what is VAD? I assume it is an acronym for a medication.
Thanks for your help.

Hi sunnylady (love your name!), my name isn't Alex ;-), but I know the answer to this one, and figured I would post it. I haven't had any chemo, either, and don't plan on it either, but I subscribe to the Acor and MMA listservs, where this stuff is talked about all the time. Anyway, the answer is:
VAD - Vincristine/Adriamycin/Dexamethasone
Do I get a prize? ;-) Margaret

sunnylady1
Hi Margaret. Thanks so much for your response. I love this list and the opportunities for useful information. By the way, I was in Florence in April of 2005, loved it!
By the way, I just read my March newsletter from the Whitaker Wellness Institute. A detailed article by Dr. Julian Whitaker on low dose Naltrexone sounded extremely promising. I will definitely be investigating. Maybe this could be the prize? :-) sunnylady

Hey Sunnylady, Florence in April is almost the best time of year (fall is good, too). Glad you loved it (so do I!). Well, I have heard of Naltrexone, but never looked into it. I hope it IS the prize. ;-)
Thanx, Margaret

Sunnylady-

If you go to beating-myeloma.org and click on membership (which you already are) then request a "newly diagnosed info packet."  One of the documents is an explanation of acronyms like VAD (vincristin, adriamysin and dexamethasone)- helpful to keep handy- other helpful documents for mmers.

David

My husband was newly diagnosed with MM, stage III, in early March, after surgery for a collapsed vertebrae. He was immediately started on Zometa, Thalidomide and Dexamethasone; we weren't really given a chance to think about options but were more or less pushed into going immediately to drugs. Since my husband has a spinal tumor and a broken back we didn't feel in a position to argue. Since diagnosis I've had him on a modified Gerson diet - we can't quite manage 13 juices a day but I aim for the total volume, just in fewer daily doses. He was on a strict vegan diet at first, till he developed an infection in the wound of the first surgery and had to have a second surgery, and we figured some protein was necessary for wound healing. But, we're still following the spirit if not always the letter of the Gerson approach. Within 2-3 weeks of the diet my husband reported that his hemmorhoids had mysteriously disappeared, that he had no gastric disturbances, sinus problems or headaches, and that he was unusually mentally alert and never felt sleepy after meals (which he always did in the past). Also, his last blood test showed a rise in hemoglobin which our oncologist termed "fantastic". the dr. was so happy with the rise in hemoglobin that he hasn't put my husbanbd back on dex for the moment, so we are continuing just on 200 mg daily of Thal. In a couple of weeks time we will find out what the cancer is doing when they do the electrophoresis test for the paraprotein. (it seems he doesn't secrete in the urine). My hope is that the diet will make the meds more effective and that perhaps eventually we can get the dr. to consider giving us leeway to experiment with circumin. (When i first mentioned it I got a stern lecture about not experimenting with my husband's life.)

We live in Cyprus and have a pretty hard time finding organic produce or organic dairy and lots of other things. But we're doing the best we can. I do think that diet is making a difference, although it is rather early in the game to tell.

Lisa in Nicosia,Cyprus

Hey, Lisa, good to see you here! :-) When you have time, could you post a few juice suggestions for the rest of us juicer-maniacs? I personally like apple, carrot and ginger, but I have experiemented with other veggies and fruits, and am always happy to read and try other juice recipes. Is there a particular one that your husband likes? As for your doctor being negative about curcumin, he is not the first and won't be the last (my former hematologist, now retired, also was skeptical in the beginning, UNTIL he saw my blood tests!). The thing to do (as I did) is perhaps to print out some of the studies (I have the links to the 3 main MM-curcumin studies on my blog) and take them to him. Plus, the initial curcumin protocol is only 8 weeks, which isn't a long period of time, really. And obviously, if curcumin doesn't work, it's pointless to continue. But if taken properly, it should do SOMETHING. However, I don't know about interactions with Thal, you would have to write to Prof. Aggarwal to ask him that: aggarwal@mdanderson.org
Interesting that your husband doesn't have headaches etc. now. Food for thought.
Margaret

Thanks for replies. NO, i haven't gotten my newly diganosed packet yet - I'll do that now. Re juices: at first I juiced everything and anything, but now I follow the Gerson recommendations pretty strictly: one orange juice in the morning, and then after that it is carrot, carrot/green apple, or green juice (romaine lettuce, green apple, swiss chard, red cabbage, green pepper, and a few other greens which mostly i can't find so i leave them out). We see the onc on Tuesday so I'm anxious to know what the numbers are; I'll also give him the circumin studies then. We've had some good news in the meantime; my husband's CRP was over 6 after the infection and the second surgery; after antibiotics it went down to around 3, but a week after stopping antibiotics (but getting back to the diet, which had been hard to follow while he was in the hospital) it was down to 0.78. (normal is 0-0.5.) The surgeon was pleasantly surprised. I'm convinced the diet is playing a role; why else would the docs be surprised at good numbers? We've already asked about lowering the Thal dose and didn't get very far with that, but if the numbers are good at this next appt. (which I hope they are) we'll raise it again. Unfortunately our oncologist doesn't much like patients who ask too many questions or do too much of their own research (I'm already on his irritation list, I can tell) and since this is a very small place we dare not burn our bridges: it is not as if there are a zillion docs out there to choose from.

We went to the oncologist today and my husband's hemoglobin had risen from 10.8 to 13 in two weeks. The oncologist termed this rise "exeptionally good" and later in the appointment described it as "extraordinary." For him to call it extraordinary makes me feel that we're doing something right with the diet. (My husband also takes a fair number of supplements - mainly different vitamins, plus fish oil and probiotics. We got lectured about herbs so we're being cautious with those, but today we gave the oncologist the circumin studies that Prof. Aggarwal authored (thanks, Margaret, for pointing me toward these!) and he was impressed and gave us indication that he'll probably be amenable to my husband taking circumin. (I had written to Prof. Aggarwal, who told me that circumin enhances the effectiveness of thalidomide, although that research is not yet published).

Last night we talked to a friend whose sister had breast cancer a few years ago which, as I understand it, was treated, but which then returned and metastasized to the bones. She was in bad shape, and the chemotherapy was so hard on her that at some point she told her doctors that chemo was going to kill her, and she preferred to take her chances without. She started following some kind of a special diet (they are going to give us more information on that soon; all I know is that it is largely vegetables, cooked in a certain way) and now the tumor has receded to a faint line that the doctors say cannot really be called cancer any more. She was supposed to be dead a year and a half ago. But she's fine, thanks to diet.

Imajaj-

Congrats and keep it up-

David

Sometimes anecdotal evidence is all we have. But curcumin has been in a phase I trial at M.D. Anderson. Unfortunately, most patients did not take it as directed, as the people wbo were supposed to tell them this did not do it. I wrote to Dr. A. about it, and he did not seem interested. You would think that since it has been his life's work, he would have been more interested.

At any rate, the problem with this trial you are talking about is, as I see it, there are just too many variables involved. Probably everyone here takes different supplememts and many different medications. Even if everyone took large amounts of curcumin w/bioperine outside of meals, it might be synergistic with some things and antagonistic with others. I still think it would be no worse than the phase I trial.

I have an even better idea about curcumin and resveratrol. But I will say that for later. It has to do with a beneficial side effects of both. So far, it has worked exactly as I have been led to believe for something else for one person. I believe that this may actually be of help to hundreds of thousands of people. My hope is that if I approach this in a certain way, I can get huge donations to either the IMF or the MMRF (which do you like?).

Finally, personally I would stay totally away from pau d'arco and goldenseal. Goldenseal is an immune system booster. Perhaps this is okay if you are in remission, but if you have myeloma cells, as I do, the last thing I want to do is boost your immune system. This is general knowledge, and Dr. Vescio of Cedars-Sinai told me this about either goldenseal or something else like it.

As far as pau d'arco, most people who work in the field of alternative medicine warn to stay away from it because of its toxicity. Although most likely its active ingredient is B-lapachol, (we never know if it is the whole plant or just one compound which is the unfortunate way that these things have always been studied previously), this has actually been studied before. Yes, it killed cancer cells effectlvely. It also killed everything else, and the patients died. It has been studied off and on. However, because of its toxicity, I would stay away from it. You can do a search on the internet--you will find people in both fields of alternative and conventional medicine warn patients to stay away from it. At least, that was my conclusion when I looked into it.

I think we have enough have to deal with enough toxicities of the anti-mm drugs that we need to stay away from even more.

That is just my opinion, and I mean no disrespect. I am not a scientist, nor do I have training in the sciences. These are just my conlusion based on reading, both from books and the internet.

Alex
San Diego

Does anyone know about any potential dangers of using fish oils while on Thal/Dex/aspirin?
Thanks, Lisa

Lisa-

I have never taken thal/dex/aspirin as a therapy but just generally, fish oil and aspirin both have an anticoagulant effect- talk to your dr about this-

David

Today I called the Gerson institute to ask them a couple of questions. I asked, among other things, whether they had any success stories with MM in their records. The woman gave me the name and phone number of a naturopath who was diagnosed in..... 1980. He did radiation for a spinal tumor, as I gathered, and then did Gerson. Only Gerson. But, he did it right - juices every hour, four enemas a day. (He didn't do the B12 injections because he didn't know how to get them). He never did any chemo, any drugs, anything. And here he is, 27 years later. That was inspiring.
BTW, the woman at the Gerson clinic said it is fine to do Gerson with drugs like Dex and Thal, just not with regular chemotherapy.

Lisa-

I want to talk to this guy.  Do you have his phone number, email address, anything?  If not, who did you speak to at the Gerson Clinic and what is their #?

Thanks, David

David,
You can google the Gerson Institute and get the number easily; just ask them if they have any records of people who used Gerson for myeloma; that's what I did. The woman who answered the phone gave me his name and phone number; he's a naturopath in Washington state. Come to think of it, I wonder if he has a website; i'll look.

A more general question: how, in fact, can we communicate privately with one another on this forum? i couldn't find a way to send a private email via this forum. I personally don't mind posting my own email address here but since I've been told not to I'll abide by the rules for now. ;-) But, I'd like to be able to discuss with you if you do call this guy (I had some questions I didn't get a chance to ask).

Lisa-

I will try to contact the survivor and also try to answer your other questions.

David

yes, I'd also like to hear more about the various diets and comparisons.
I may have gotten this good webite about food additives rated good to bad from someone on one of the listserv's and don't remember who to give credit to., but here it is.
http://www.cspinet.org/re...

In response to the good and bad kind of fish to eat.
I read a report about the shrimp industry which stopped me from eating shrimp unless I know where it came from. I must have deleted the 20+ page article. Fortunately, I can get fresh shrimp where I live and I continue to enjoy it. However just type in 'contaminated shrimp" in any search engine and you'll be so disgusted that you stop reading. It is not just one contaminant, more like dozens, not to mention the antibiotics being used in the production and the new resistant bacteria developing from this industry. There is current legislation I've heard to try to safeguard the shrimp industry better, but I don't hold my breath for the change. I just try to be aware best I can.