GOOD OR BAD FOR MULTIPLE MYELOMA? THIS IS A HELP PAGE WITH LINKS…

(For details/blog reader comments, please see my June 26 2011 post: http://margaret.healthblogs.org/2011/06/26/good-or-bad-for-myeloma-that-is-the-question%e2%80%a6/). [This is a work in progress…suggestions much appreciated…thanks!]

Last month, a blog reader, = a research scientist with myeloma, suggested that I create some sort of “master listing” that would make it easier for readers to locate stuff. Good idea. I’ve realized for some time now that my blog has gotten a bit out of hand, as the saying goes. There is an amazing amount of information here (a lot of which comes from you, my readers!). Unfortunately, compared to a proper website, the blog format is a bit constraining, so I wasn’t able to get toooooo creative. Still, I hope that what I’ve done will be of help…especially to new readers…

By the way, if I do NOT put a direct link next to the item (below), it means that I’ve written too many posts about it…so you should just do a search of my blog (using the convenient “Search box,” or, if you can’t find what you’re looking for, just contact me directly…

POSSIBLY BAD STUFF:

POSSIBLY GOOD STUFF:

(Check also my Page titled: “Other anti-myeloma/cancer substances.” See right-hand side of the blog.)

Here is a list of stuff I’ve tried:

  • Curcumin, C3 Complex (various clinical trials)
  • Fish oil, molecularly distilled (clinical trial, MGUS/SMM/CLL patients)
  • Quercetin, no more than 1.5 grams
  • Vitamin D
  • Ashwagandha/Indian ginseng/withanolides (an interesting ashwagandha/curcumin trial in osteosarcoma is recruiting patients right now)
  • Resveratrol (see my notes on the terminated SRT501 trial)
  • EGCG/green tea (clinical trial, MGUS/SMM patients)
  • Saw palmetto/Serenoa repens
  • Reishi/Ganoderma lucidum (need to retest; ran out of capsules…)
  • Black cumin/Nigella sativa (I use this a lot in my cooking; not tested as a supplement)
  • Scutellaria baicalensis/Chinese skullcap
  • Capsaicin (same as black cumin; not tested as a supplement)
  • Apigenin (not tested as a supplement, but I eat a lot of parsley and am trying to like celery…)

Now for stuff I still haven’t tried (and may never try…either because it’s too risky/toxic or because I haven’t found a reliable, affordable AND safe source…oh, though I should note that some of the following items, such as boswellia, sesamin and guggulsterone, are already in my medicine cabinet, waiting to be tested…):

  • Betulinic acid
  • Boswellia
  • Butein
  • Cardamonin
  • Ciclopirox olamine (clinical trial, patients with relapsed or refractory hematologic malignancies) and Piroctone olamine (these are both anti-fungal treatments)
  • Cyclopamine (possible eradication of the MM stem cell; BUT too toxic to try, in my opinion)
  • Emodin/turkey rhubarb
  • Genistein
  • Guggulsterone
  • Hesperetin
  • Honokiol
  • Kinetin riboside
  • Moringa oleifera
  • Oleanolic acid/olive oil & leaves (an interesting clinical trial is currently testing olive polyphenols on postmenopausal women with decreased bone mineral density)
  • Papain/papaya
  • Pristimerin
  • Sea cucumbers/TBL 12 (currently being tested on untreated asymptomatic myeloma folks in two clinical trials in NYC)
  • Sesamin
  • Ursolic acid
  • Xanthohumol (from the hop plant…=beer!)
  • Zalypsis

******************************************************************************ASPASPIRIN. When I first began preparing this Page, I put aspirin on the “don’t take” list. But after reading what Dr. Durie had to say on this topic, I’ve changed my mind (February 2014). It might be a good thing to take, after all! See: http://margaret.healthblogs.org/2014/02/03/an-update-on-aspirin-and-myeloma/ And my 2011 post, which is now outdated: http://margaret.healthblogs.org/2011/03/28/to-use-or-not-to-use-aspirin-in-myeloma-conventional-treatments/

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MY CURCUMIN PROTOCOL:

CURCUMIN SIDE EFFECTS AND WARNINGS:

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DIET:

I don’t have any particular advice in this department…except to say that there are a number of cancer-fighting foods that should be part of our diet (whenever they are in season), such as anything in the broccoli family, as well as onions, garlic, turmeric, ginger…Also, try to cut down on your sugar intake (cancer cells LOVE sugar). Since 2005, I have cut down on my sugar intake. And I also cut down on pasta during summer, when it’s too hot to eat it anyway…

Ah, and here is a note: Dr. Nicholas Gonzalez, New York City, found that his myeloma patients did best on a high-protein, high-fat diet. For the past few years I have therefore been eating red meat (mostly) once, possibly twice a week..Strictly free-range…no antibiotics and no hormones. I don’t eat animals that have been raised/tortured in cramped cages! 

I also don’t eat any frozen food (except for ice cream in summer!), any fast food, or any fried food. I’m not a “health nut,” but I do try to eat well: ORGANIC and locally grown food…no pesticides, no Monsanto genetically modified crap (yuck!), etc. 

IMPORTANT POINT:

Take a daily dose of…hearty laughter…the kind of laughter that makes your belly shake and ache…Myeloma cells, you see, have no sense of humor and really hate it when we laugh… So have a look at the Laughter section of my blog …lots of funny stuff, there…jokes and links to funny videos…

ANOTHER IMPORTANT POINT:

Try to avoid stress…See my page on Myeloma and stress: http://margaret.healthblogs.org/life-with-myeloma/what-is-multiple-myeloma/multiple-myeloma-and-stress/

Page last updated: June 16 2014

19 thoughts on “GOOD OR BAD FOR MULTIPLE MYELOMA? THIS IS A HELP PAGE WITH LINKS…

  1. Danny

    Margaret,

    On diet and myeloma, I recommend:

    “The Cancer Fighting Kitchen” by Rebecca Katz and Mat Edelson, Celestial Arts, Berkeley.

    A wonderful book where the recipes are so tasty that one can easily forget the cookbook title.

    Reply
  2. Mike

    I found this link for Saffron and its affect on patelets. Clotting a big deal for my wife now taking Revlimid and Dex. Taking asperin; but, I read here that can be either good or bad for MM. The verdict is still out for that. Anyone know about taking saffron as a supplement. Dosage, Med interactions, best source, etc.

    http://www.ncbi.nlm.nih.gov/pubmed/16180089

    Thank you Margaret

    Reply
  3. David

    Hi Margaret

    I’ve had some good results with Curcumin, Cesium Chloride, Apricot Seeds and Paw Paw. I notice that beside Curcumin, none of these appear on your list – any particular reason?

    Reply
  4. Andrea

    Margaret
    I saw your information on gadolinium the day before I was scheduled for an MRI. I canceled it immediately. Thank you for the info. However my doctor was not impressed with me, I am now looking for a new one. This diagnosis is scary enough without having to be fearful of your doctors disapproval. If you or any of your readers can recommend a good, compasionate myeloma doctor in the US (I live in Connecticut) please send me contact info.
    Thank you for your assistance.
    Andrea

    Reply
  5. Nili

    Hi Margaret, How are you?
    My mom was diagnosed with SMM a few weeks ago and I’ve been doing a research on the subject since then. Your blog is a great source of information, thanks!

    I recently read about the possible connection between hair coloring and Myeloma (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1694062/ , http://www.ncbi.nlm.nih.gov/pubmed/17492526 ). Do you know anything about the subject? Since my mom is in her 60s and she’s been colorig her hair for a couple of decades, it seems quite important to me.
    I was also trying to find natural hair color without PPD (the problematic component) that can be found in Israel, where we live, but with no success.
    Maybe you (or one of the blog readers) have a useful information about the subject?
    Thanks!

    Reply
  6. Andrea

    Nili
    I found some completely natural products online. One is Light Mountain Natural Henna and the other is Aubrey Organics. I have never used either but they claim to be ‘chemical free’. I am sure you can find all the particualrs via web search.
    Andrea

    Reply
  7. Mike

    Margaret

    Are you still taking the Natrol Guggulsterone?
    I can’t find the page that had your supplement protocol. Anyway, are you close to having your lab tests redone to show if it has had any effect on your reults. I read that we should, as a rule, allow about six months of taking a particular supplement to see if they are producing results. With MM or any cancer six months is an eternity to give something a chance before possibly having to move on to something else.

    Reply
  8. alfa

    Nili, I’m your mother’s age. I was diagnosed SMM 6 years ago, than started Kingston Diet (with the help of Sara Chemo in Jerusalem)and on the same time – stoped coloring my hair. IT’S BEAUTIFUL!

    Reply
  9. Susan

    Margaret, I’m surprised I don’t see ‘melatonin’ on your list of Possibly (or probably) bad stuff. Everything I read about it + myeloma (and other blood cancers) says to stay away. I was offered some by a well-meaning friend while in treatment. Glad I looked it up first.

    Reply
  10. mike

    I was looking for a B-vitamin complex supplement and looking into B vitamin functions. I found that Thiamin (B-1)in higher doses may contribute to tumor growth. There were both sides to this in different posts on Google. Since we have been using a balanced B-50 complex I think I’ll look for a more reasonable dose. Although, it’s hard to find good supplements in lower reasonable doses. Here are some other things I found one for B-12 and the other for folic acid
    http://www.canceraction.org.gg/mgus-and-multiple-myeloma/hypothesis

    http://www.webmd.com/cancer/news/20091117/folic-acid-b12-may-increase-cancer-risk

    After seeing these articles, I’m going to look into some of the more common supplements we take daily.

    I also saw that vitamin C at does lower than 200mg have about a 98% absorption rate. A 1.2 g dose has only 33%. Looks like a better way to take would be smaller more frequent doses in order to satiate the cells before it’s excreted.

    Reply
  11. David B

    Been following your site for the past year as I was looking for any information on breast cancer, as my mother had a recurrence. Luckily she caught it early and didn’t want to deal with it medically. Although, i know the type of cancer is different, your site provided hope and inspiration that if my mother decided against medical treatment, we could try experimenting with alternative medicines. In any case, I saw a link regarding ketogenic diets and cancers. Although it centers around brain tumors, it seems as thought i could potentially help a wider variety of cancer cells as the cells primary source of energy is glucose and glutamate. Hope you read and watch the videos and maybe an option for self experimentation.

    http://articles.mercola.com/sites/articles/archive/2013/03/10/ketogenic-diet.aspx

    Reply
  12. daisy

    Ron, I’m very interested in your comment about methylfolate reving up methylation in your body as being negative–I believe I read somewhere else on margaret’s blog, a comment you made indicating you were taking b12 and your mspike increased. I am confused though if you have the mthfr mutatation, and if you’ve got one copy or 2 or 677t, and is that why you were taking the b12 and methylfolate. Because it would make sense that if you are not processing folic acid and not making glutahione and unable to both detox and protect cells from damage that doing this would be a good thing. I am trying to investigate all of this, because i have the mthfr mutation one copy of 677t don’t have the a1298c, and am homoz for 4g variant, have lyme diesease, and have mgus, amd iga kappa. –taking 4g of curcumin a day with reservatrol and theaflavin. –I thought that if I can correct the misfiring of my methylation process, and get my refinery working again, and that this could only help keep away myeloma not bring it on. thanks for some insight.

    Reply
    1. Lynne

      Hi – came across your 10/13 post and was very intrigued as our whole family has chronic Lyme and various co infections. My daughter is positive for 677t mthfr mutation (my husband and I have not been tested yet). My husband has high risk MM (and also Celiac). I’d be VERY interested to find out what you may have learned since that old post relative to these subjects.
      Thanks!
      Lynne

      Reply
    2. Kate

      I have IgG Kappa Mgus since 1998 first blood test and diagnosis. I too have MTHFR C677T mutation (Homozygous, one copy from each parent) I was told I methylate at 80% reduced rate and was put on “FOLATE” not folic acid. Folic Acid is bad for people with this mutation. I am taking B12 also. I have fibromyalgia and Myalgic Encephalomyelitis (CFS) as well as CVID, Thyroid nodules, Endometriosis, restless leg syndrome, osteoarthritis, MCS and the list goes on……its difficult knowing what to take, one condition benefits from one vitamin regime and another condition says it’s not good. I listen to my body, I saw a documentary that talked about giving the body the nutrients it needs and letting it heal itself. I am slowly weaning myself off pain medication. I have recently gone gluten free, dairy free, and sugar free and after initial headaches I feel great. I must mention, when I was a vegetarian my numbers were the lowest they had ever been. I am going back to a plant based diet. Sometimes it’s all so overwhelming, I just take a deep breath and keep going.

      Reply
  13. Iddie Bartley

    I’ve been hearing a lot about Cannabis. I do have Multiple myeloma. Do you know if this would be something that I should try for this disease? I don’t want to hurt myself.

    Reply

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