Hi all,
This is my first post in this forum. I couldn't get back to the thread David and Margaret have startedabout how to use a list-sponsored exercise to assess the effectiveness of various complementary therapies.
Margaret raises valid concerns that no one will listen to whatever finding we may come up with, as well as how to standardize our findings so that they actually compare like treatments to like treatments.
I have two comments.
First, so many great discoveries have been learned anecdotally or empirically -- by observing effects outside clinical trials -- that it's not right for the establishment to ignore signals from such events.
Think Pasteur.
Think of the use of thalidomide in MM. Widespread before any clinical trials and way before FDA approval.
Think Biaxin use in MM protocols. Dr. Morton Coleman noticed that some mm patients who were on biaxin for other reasons did better on their dex-related protocols than others with no biaxin. He was highly disregarded for years, almost a joke. Clinical trials followed. It does work for many people. It is thought to potentiate the dex, but I'm glad they didn't wait to figure that out.
Think about MD-myelomics on various MM listservs who are making themselves experiments of one using cyclopamine, circumin, resverstrol. As far as I know, to good effect, or at least with stable disease, but wouldn't it be nice if we could keep track?!
After a while, the mainstream takes note. For years I couldn't get them to do a free-lite test at Dana Farber. When my husband switched to Dr. Richardson, he did one right away without any request by me. The original oncologist was shocked. Now Dr. R is in charge of the MM clinic at DFCI. He's forward thinking but even he is skeptical of the MM cancer stem cell that Dr. Matsui at Johns Hopkins believes he has identified.
My second comment: Even if keeping track as David has offered to provide a mechanism to do is all this group did, it could help both members of this list and others who don't know the list exists. Perhaps individual doctors will pay attention. (One patient was able to talk his doc in IOWA into giving him biaxin four years before DFCI would consider it because of postings on the acor listserv.) Perhaps word will spread through the internet.
My takeaway: It makes sense to keep a record even if you can't standardize dosing, other variables, etc. It's worth trying to set up a spreadsheet type report where those things could be noted (other supplements, combinations, alternative treatments....)
Having said all this, I note that my family won't be contributing meaningfully to any such exercise. My husband won't even put all the pills recommended for his treatment into him. Right now, that means he's not on the Dana Farber peripheral neuropathy regime and it shows. But there are only so many pills he will put down his gorge and I'm so glad he's here to put any.
But I do think it would be a very worthwhile exercise that might make this the most useful mm listserv.
Good luck,
Deirdre
Thanks, Deirdre. Interesting post! The thread you were looking for wasn't posted here, but on the MM Support mailing list, another MM listserv to which David and I both belong. Sorry! In a nutshell, this is what happened: last week, after I posted my most recent blood test results, there was some brainstorming on the MM Support listserv about creating an informal clinical trial for us curcumin-takers. David kindly offered the B-M website as a place where we can post our results in a sort of informal trial. That idea has sort of fizzled out on the MM list, but I will try to rekindle it soon. I think it's a great idea, and could possibly lead to something bigger, as you (Deirdre) point out so wisely.
I agree that it is important to get our docs to pay attention. And this could be one very effective way of getting their attention! The more there are of us doing alternative treatments, the more we cannot be ignored. My personal experience with curcumin is anecdotal, for sure, BUT by now there are a whole bunch of us taking curcumin with good or even excellent results. Some MMers on the MM Support list have written they are willing to participate in an informal trial. I think it would be brilliant to gather this info, but where and how etc. are questions we must think about and discuss. I already have all my blood tests in an Excel document, so it would be quite easy to mail that in, or type the info onto a B-M spreadsheet. I also have a (unrelated) comment on curcumin pills: you can get curcumin POWDER in bulk form directly from the Sabinsa Corporation, so you don't necessarily have to swallow a million (well...) pills like I do at present. Last year, for MONTHS, I mixed curcumin powder with a fat substance. Problem is, that concoction isn't too palatable. I have tried various fats, and nothing tastes good. except for fruit yoghurt, where, however, sugar is a concern. Another point: if you don't want to take curcumin, why not at least cook a lot with turmeric, which has 5-8 % curcumin in it? Can't hurt. Just a thought from Florence Italy and....Margaret
sunnylady1
I find the idea of an informal study interesting and yes, possibly quite useful. I've just purchased circumin gel caps and am wondering how much to take. Do you have any suggestions? Also, since I have peripheral neuropathy in my toes I would like to obtain more information on the Dana Farber protocol for treating it. Recently, I've seen a couple of clinics offering physical therapy, including, I believe, electrical stimulation, for improving neuropathy. Has anyone tried such treatment? I'm still with the Burzynski Clinic, and they have me, in addition to the meds, taking amino acids. I'm gaining weight that I never had before, all of a sudden, not sure what this means, except that yes, I slacked off on my walking and ate a little more chocolate. Maybe, it's just a matter of getting that exercise in daily; though I sometimes just don't have the energy. Just recommitted to eliminating sugars, except for certain fruits...Thanks for all your helpful comments.
Sunnylady- I go to physical therapy twice each week to participate in what they refer to as "russion stimulation." I have both pn in my feet and radiation-induced lumbo-sacral plexopathy in my lower spine. Lots of nerve damage.
As for results, all I can point to are EMG and nerve conduction studies that I have done every six months or so for the past two years. These studies show a slow but steady improvement in my nerves- I'm healing slowly. I exercise daily as well.
David
sunnylady-
You mention "in addition to the meds" are you also taking steroids? Also antineoplastons are high in sodium and you may be retaining water. Talk to your dr at the clinic.
David
sunnylady1
David, thanks for the comments about "russion stimulation." I had physical therapy a few months ago on my shoulder, having bursitis in it, but decided not to have the electrical stimulation due to having mitral valve prolapse, although I was asymptomatic. I will just say that there is some question via testing last year as to whether or not that has healed and I no longer have it. Be that as it may, I was considering going on ahead and having them use the stimulation on me. The therapy, even without the electrical stimulation was quite effective in eliminating almost all symptoms from my shoulder injury, but traveling a lot and pulling baggage around at first reactivated it. Since then, I've learned to pack lighter and ask for help too :-).
About six months ago I was informed that the medication I'm taking from the clinic is not antineoplaston. It was my understanding when I first went there that the pills (now liquid) given me were the pill version of antineoplastons. Since then, I've been told by the financial manager that they aren't the same My medication is called sodium phenolbutyrate and yes, it is high in sodium; but I do drink 64-72 oz. of water daily, and am also on a diuretic (have been wondering if that contributes to weight gain). I do take Vit. C and B6 regularly because both of those are natural diuretics. Then, of course because of all the elimination I take potassium, magnesium, zinc, and selenium. Regarding steroids, no, I'm not on them, would be quite adverse to taking. I do love dark chocolate by the way; but I also no that I had slacked off on the exercise after having been an avid jogger and fitness buff for many years, and never worrying about my weight at all.
Thanks for your comments and suggestions! Sunnylady
Sunnylady1-
"I've been told by the financial manager that they aren't the same My medication is called sodium phenolbutyrate"
As I understand it, sodium phenolbutyrate (PB's) is the active ingredient in antineoplaston therapy. As for possible weight gain, you drink a lot of water and seems to flush your system pretty well. Keep us posted on your experiences with the Burzynski Clinic-good luck.
David
sunnylady1
David, thanks for the comments about "russion stimulation." I had physical therapy a few months ago on my shoulder, having bursitis in it, but decided not to have the electrical stimulation due to having mitral valve prolapse, although I was asymptomatic. I will just say that there is some question via testing last year as to whether or not that has healed and I no longer have it. Be that as it may, I was considering going on ahead and having them use the stimulation on me. The therapy, even without the electrical stimulation was quite effective in eliminating almost all symptoms from my shoulder injury, but traveling a lot and pulling baggage around at first reactivated it. Since then, I've learned to pack lighter and ask for help too :-).
About six months ago I was informed that the medication I'm taking from the clinic is not antineoplastons. It was my understanding when I first went to Burzynski that the pills (now liquid) given me were the pill version of the antineoplastons which other patients were receiving through the backpack they carried. I was told during this past year by the financial manager (yes, I know...but it came up in relation to insurance matters) that I was not taking the antineoplastons. Following this up with the physicians, I was told that I was not sick enough for the antineoplastons. The medication I take, sodium phenolbutyrate, is indeed high in sodium; but I do drink 64-72 oz. of water daily, and am also on a diuretic (have been wondering if that contributes to weight gain)do to increased blood pressure. I do take Vit. C and B6 regularly because both of those are natural diuretics. Then, of course because of all the elimination I take potassium, magnesium, zinc, and selenium. Regarding steroids, no, I'm not on them, would be quite adverse to taking them. The only time I had them was as preparation for the two series of Rituxen that I had during the first year and also this year, both a series of 6 infusions. I do love dark chocolate by the way; but I also know that I had slacked off on exercise after having been an avid jogger and fitness buff for many years and continued exercising pretty regularly after diagnosis until this past year. and never worrying about my weight at all. I've taken vitamins, minerals, and herbs for many years and continue those, although I know about the cautions concerning them. I've recommitted by the way, to exercise, more fruits and vegetables, getting back into regular massage, my meditation and all those things I was doing pretty steadily for 3 years.
Thanks for your comments and suggestions! Sunnylady
Margaret and Deirdre-
I have talked to the web developers about a curcumin trial- people who are interested in participating need to suggest what kind of info to standardize on and contribute. Certainly the therapy, curcumin, brand, daily dose, diagnostics- these are just some ideas-
The other project that I am talking to the techies about is the idea launched by PortlandRose about an email letter to be signed by people (forwarded to as many as possible also to read and sign) and then forward it to the correct institution/person in Washington. Once we figure out a format/design for something like e-document, I think that the results of the curcumin testing would benefit as well.
Ideas?
David
I presume you (Sunnylady) have mgus or sm or mm. Going on that assumption, there is a curcumin protocol to follow. You have to start at a low dose so you get used to it slowly. Week 1: one gram of curcumin; Week 2: 2 grams; Week 3: 4 grams; Week 4 and thereafter: 8 grams. Do before and after blood tests, so you can see if curcumin works for you (it SHOULD!). And of course, if it does, you shouldn't stop taking it. I am still on 8 grams a day, and it has been about 16 months now. One thing: I have a friend with MGUS who is taking 6 grams of curcumin, plus EGCG, resveratrol and flaxseed oil. She has been keeping herself stable that way.
Check my blog's Bioavailability and Warning pages for more info. I take 1 gram of quercetin a day, divided into two doses (I also take curcumin in two doses, twice a day, on an empty stomach), about 15-20 minutes before taking curcumin. And I take an oil capsule with my curcumin, an oil of your choice: flaxseed, fish etc. I still haven't added resveratrol, but I will in the next couple of days. Don't take any sugar around curcumin. Just my own feeling. I read that after you eat sugar, your immune system performs at 50 % for I forget how long, something like a couple of hours, as I recall. We want our immune system to be working well when we take curcumin. I think that's it. Please let me know if you have any questions. Margaret P.S. Hey, I can relate to the chocolate bit...I love chocolate, too, and over here the chocolate is superduperyummy. Hard to give up. I did give it up for about 3 months last year, and that stressed me out. Since stress is bad for us, too, I do eat chocolate on occasion. :-)
all-
Many of us have a chocolate habit- rather than fight it i switched to dark chocolate. Not as tasty but much better for you- less sugar, fat plus higher antioxidant content (I tell myself its another of my many complementary therapies). After a few months I have gotten to the point where milk chocolate tastes TOO sweet.
David
I am very new and trying to figure out site logistics for "beating-Myeloma"
thx.
ally
Ally-
At the bottom of each digest is a link to site help- it is user friendly, helpful and the tech guys are proud of it. If you have any questions or comments feel free to post or email me directly- that goes for any members out there who may have questions. As this listserv is still new and functions differently that the others, do not hesitate to ask questions. Thanks.
David
Since chocolate contains magnesium, and since most of us don't eat enough foods containing magnesium, our bodies could actually be craving the magnesium in chocolate. I've recently read that some patients with blood cancers have to take up to 1,000 mg. of magnesium/day to stay balanced. For a list of foods containing magnesium, as well as contraindications for taking magnesium, etc., see:
http://ods.od.nih.gov/fac...
Cathy-
Your comment about chocolate cravings and possible magnesium deficiency is interesting. I suspected both a magnesium/calcium deficiency due to my daily sauna so I began supplementing my diet with 300 mg of mag and 900 mg of cal daily. I thought that this was enough but I would like to read about blood cancer patients needing 1000mg supplementation- could you post the specific source that you refer to?
David
David, You're right -and dark chocolate is so good for you- I buy dark chocolate chocolate chips and throw a handful in my fruit salad- satisfies my craving without the guilt-
I've been out of touch for a few days, but wanted to follow up on the previous topic of electrolytes. I've learned about another recommended product called Selectrolytes, but haven't tried it myself.
See: http://www.morinlabs.com/...
Anyone taking regular saunas that cause sweating should drink lots of fluids and replenish sodium, potassium, and magnesium after each sauna. Taking chlorella with each sauna, while expensive, will also pull heavy metals from your body. I've recently learned that most myeloma patients have high quantities of heavy metals in their bones. These need to be gradually removed over 18-24 months by using far-infrared saunas and chlorella.
I've just ordered a book, Sauna Therapy, by Dr. L. Wilson and will report on it later. See: www.drlwilson.com
Instructions are given for purchasing or building one's own sauna at reasonable prices. Dr. Wilson also discusses the importance of detoxifying from the skin, the body's largest detoxification organ.
I can slso recommend a salt rub once a month to remove the skin's outer layer so that lymph glands can excrete toxins more easily. One Tablespoon of course sea salt mixed with one Tablespoon of organic olive oil, rubbed vigorously over your entire body for 1-2 minutes, will remove dead skin quickly and easily. This is a messy endeavor, so I recommend that it be done inside the shower or bath before you take your shower. Having a helper to rub salt on your back is a plus.
I hope these comments will help us all eliminate the MM and other toxins that build up every day.
Cathy
Cathy-
As you have read in previous posts, I am very pro saunas, drink lots of water, supplement with sodium, mag, cal- is there any difference between a conventional dry heat sauna and a far-infrared sauna where detox is concerned? I have been tested and I do have high mercury levels- what form of chlorella is recommended with a sauna? Pills? If so, what brand? Please report on Dr. Wilson's book. Thanks
David
I am not technical-minded at all, so I have no idea how this trial could be set up on the B-M website from that point of view. I suppose that each of us curcumin-takers should, if possible, have our own "page" (that we can access perhaps using our existing B-M password) where we can put our values (some of the main ones, without going overboard) and a bit of history--our stage, type of MM, curcumin dosage, how we take it, etc. The basic info--anything we think is relevant. And indeed, some of the info could be quite relevant, since we may be able to identify common threads when comparing results etc. For instance, we could see who is taking curcumin on an empty stomach, who with meals, who is doing better, who is just remaining stable etc. I only know what some curcumin-takers have told me privately, but I have never compared results in a formal way, such as this one would be (sort of). B-M site visitors could READ these pages, but not be given access to them (for security purposes, since there are so many maddening spammers out there!).
Just a quick brainstorm, Margaret
I emailed Dr A at MD Anderson with a request for the curcumin protocol. All he did was send a link to another website for holistic healing. I asked one question about curcumin and anticoagulants, but he did not answer it. Maybe he is losing interest in this study.
I will add that since being on Lymphasol, John is doing much better according to his herbalist. In Chinese medicine,the tongue is a major indicator of health and he said John's looked really normal for the first time in a long time. It is still too early to tell from blood tests if any clinical improvement is occurring, but his IGG did drop from 6800 to 5000 after he started taking it for 2 weeks.
He wants John to drop the once a week dex from 20 to 10 mg and then stop, but John just did 16 instead. It is hard to know what is really causing the numbers to drop - the thal/dex or the Lymphasol.
Barbara Pavel
Barbara Pavel
I posted a piece on chocolate on my blog yesterday. No, I didn't find what I was looking for, i.e., a direct link between cocoa flavanols and MM, but came close enough to justify a piece of dark (sigh) chocolate now and again. But first I have to get rid of my milk chocolate with hazelnuts! ;-) Margaret
Barbara, I am really astonished at your bad luck with Aggarwal. One thing, though: I am sure he is not losing interest in curcumin. Well, it could be that for legal reasons he can't give you the protocol. He may have given it to me last year because I live in Italy and it's unlikely that I would ever sue him if I had an adverse reaction to it. Could it be that? I have no idea. It also could be that MD Anderson has changed the original protocol (upped the dosage or something like that), and that he doesn't want to say anything in public yet. I am going to post the protocol (that I followed, and that I got from Aggarwal) on my blog soon. I have written it out here, too, and would be glad to send it to you. Well, at any rate, I am very surprised and sorry. I normally encourage people to write to Aggarwal because he always answers! This is not good. Perhaps you could try sending your message about anti-coagulants again. He could have simply been having a bad or busy day, and have forgotten about your message. Margaret
Margaret, when you get the protocol on your blog, pleae post the URL to me or to the list. I think John will probably hold off on the curcumin for a couple of months to see how the Lympasol is working. It is not a good idea to mix all kinds of therapies and it is confusing enough with him being on thal/dex. His herbalist wants him to cut the dex out or back to 10 mg, but we think he should wait until his numbers get lower.
On another supplement recently discussed, I found a website that sells B12 as a transdermal patch. One patch once as week equals one shot once a week. If anyone is interested, I can email it to the list.
Barbara Pavel
I'm very interested in any supplements that don't have to clear the kidney to get into the blood stream since I only have 1 kidney-thanks
Barbara-
Me too-
David
I thought about that deficiency, too, and was tested last year. My magnesium level is right in the middle of the normal range. So in my case, that appears not to be a reason. It's just sugar addiction, I guess! Margaret
Ok, Barbara, when I post the protocol (that I followed) on the blog (I will have to write a disclaimer, so I have been procrastinating for that reason, I guess), I will let you all know. But, just for us few intimates ;-), here it is: Week 1-one gram of curcumin; Week 2-two grams; Week 3-four grams; Week 4 and thereafter-eight grams. Have before and after blood tests done. That's important, otherwise you don't know if it's working for you (but never think that: please adopt my "mind over MM" approach!).
Take curcumin for at least 8 weeks and have tests repeated. My Ig count went from 34.5 g/L to 29.8 g/L (going on memory, here) between January and March 2006. This was the FIRST drop since 1999, when I was diagnosed with MGUS.
Margaret
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