Good or bad for myeloma? That is the question…

A HELP PAGE created in June 2011

[Work in progress…suggestions appreciated…]

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… 🙂

In 2007, when I created my blog, who’d have thought I would find so much material? Back then, what I knew about anything “alternative” could have fit into the smallest pocket of my jeans. I had no idea that there were so many studies on non-toxic, anti-myeloma substances out there. And now there are even more…It’s encouraging…but frustrating at the same time, when you realize that most of it, most of this amazing research, gets totally ignored, even the most promising items, mainly because it’s not profitable…That is why our role, as patients, is so incredibly important. And we can make things change. Many MM doctors know about curcumin (no matter what they think about it, they KNOW about it) now. That was NOT the case when I began taking it (Jan 2006). But I digress, as usual!

Point is, my blog eventually became this huge, er, THING…daunting even for me, the creator/researcher/writer. I mean, I sometimes have trouble remembering if I’ve already written about a certain substance and have to double-check my own blog, using the Search box…Speaking of which, when I revamped my Page section, I put the blog Search box at the top, where I have also now put the section devoted to readers’ comments, which are always fun and interesting to read…informative, too!

At any rate, I hope what follows will make things easier for you, and perhaps even for me…Okay, ’nuff said. Let’s dive right in…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 or, if you can’t find what you’re looking for, just contact me directly…

POSSIBLY BAD STUFF:

POSSIBLY GOOD STUFF (Check under “Other anti-myeloma/cancer substances”). Here is a list of stuff I’ve tried:

  • Curcumin, C3 Complex (in 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
  • Scutellaria baicalensis/Chinese skullcap
  • Capsaicin

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):

  • 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 (hop plant…beer!)
  • Zalypsis

Note: If you’re on doxorubicin, eat spinach: https://margaret.healthblogs.org/2011/06/05/if-youre-on-doxorubicin-eat-spinach/

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 found that his myeloma patients did best on a high-protein, high-fat diet. Now, I’m not an avid meat-eater (on the contrary!), so the high protein part is a bit of a problem for me (see my Page for more updated details, though)…

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…

OTHER IMPORTANT POINT: try to avoid stress…See my page on Myeloma and stress: https://margaret.healthblogs.org/life-with-myeloma/what-is-multiple-myeloma/multiple-myeloma-and-stress/

As I mentioned, this is a work in progress. The Page (on the right) won’t have all the introductory stuff, of course. Otherwise, it’d be too long. Okay, I have to go now. Have a great Sunday, everyone! 🙂

9 Comments

  1. Just to let you know….I’m a subject in the NYU Medical Center Phase II Trial of Sea Cucumber Extract in Patients with Untreated Asymptomatic Myeloma

    My M- spike started at 2.3 in March- April
    went to 2.2 in April – May
    went to 2.1 in May – June

    My K;L Free Light Chain Ratio started at 14 March-Apr.
    went to 9 Apr – May
    went to 7 May – June

    So far everyone is happy with the results, especially me.
    Arlene

  2. Hi Margaret, you helped me once with a question I had about using turmeric to help dogs’ digestion & prevent diarrhea. It works! I just wondered if you’ve ever come across anything about using turmeric to aid feline digestion… I know you’re a cat person (!). I have a cat recently diagnosed w/ inflammatory bowel disease, which, in him, causes inappetance and a bit of diarrhea and occasional vomiting.
    No rush on a response–I know you’re busy w/ all your wonderful research and writing! I recommended your site to a friend recently diagnosed w/ MM. Thank you, Melinda

  3. Hi Margaret

    The high protein diet, doesn’t have to include too much meat, and when it does, (maybe three times a week), preferably good quality non contaminated chicken, fish or game meat, other wise quality sources of protein like nuts, quinoa, millet, beans and pulses combined to make sure you get enough protein are the way to go forward according to current nutritional advice for cancer patients, especially if you are suffering from muscle waste, this should account for a quarter of you meal plate. At least half your plate should be covered in vegetables (although you should restrict high sugar root vegetables and have more greens) Only eat complex carbs which should account for slightly less than a quarter of your plate and the rest should be a combination of various herbs and spices (fresh if possible).
    This is how I eat these days and find I am doing well on it, I do have issues with some pulses but, you can take a digestive add to help, if this is the case.

    As with all changes this should be done gradually, otherwise you could put a lot of strain on your body. Everyone is different though and sometimes it’s just trial and error to find what works best for you.

    I hope this helps

    sue

  4. Whey Protein powder and/or Rice Powder can help to make interesting drinks for the morning or thruout the day– blended with alkaline water (kangen or perhaps Fiji) and some hempmilk. SuperGreen powder (I like chocolate flavor) and it contains dried wheatgrass and other grasses. Very flavorful– and I add frozen organic raspberries, blueberries (not too many) as well as curcumin powder, vitamin C powder, beet powder, stevia, pectin–maybe a little banana (not much) for flavor too. Blend in blender. Not bad. (also a little 100% cacao powder for chocolate lovers– with no sugar added)

  5. Margaret,

    Bravo! Thank you so much for taking my suggestion to heart. I hope I can offer a few things:

    1) Ursolic acid is readily available in food sources. Particularly apples, basil and sage. Apple skins are an exceptionally concentrated source. It can also be purchased in capsule form in the U.S., albeit expensive (~15 mg per capsule derived from Sage).

    2) Honokiol is available within the Natura Inflamaway preparation which also includes Chinese Skullcap, Boswellin and ginger extract. It is not exorbitant in cost.

    3) Papain is available cheaply (e.g. Wobenzyme) and without much in the way of serious side effects. Papaya is lovely too as a natural source.

    4) Your write up on aspirin was interesting to me and also inconclusive I think. I am still wondering about that as I must take it with Revlimid. It might come under another category– uncertain. For instance, recent data shows aspirin helping to thwart melanoma progression. You could also perhaps put the EGCG and Velcade controversy in this category.

    4) Under those you’ve not tried, it would be useful to list those as potentially dangerous or with serious side effects in a separate category. For instance I am thinking that ursolic acid from natural sources (just had pesto pasta with an apples and greens salad) hardly compares with experimenting with Cyclopamine

    As I am in the camp that believes that such supplements can go far in helping arrest myeloma, either by themselves or in concert with ‘novel agents,’ I think we also have questions that have not been addressed at all. For instance, what are the best dosage points in the day? And would it be useful to rotate supplements in combination with each other to make it more difficult for myeloma cells to develop resistance to therapy?

    Interesting isn’t it?

    My Best,
    Danny Parker

  6. hello Margaret,
    I can’t remember if I ever sent you this website:
    http://medweb1.unige.ch/alternmed/
    It is the data base of complementary medicine at the Geneva university; 10 years ago,I met the man in charge, Danier Haake and he’s helped us along on many occasions, Gilles and me and lots of friends.
    As he spends his mornings before a screen, he welcomes any phone calls or visits. It is free of charge for anybody. There aren’t as many articles on curcumin as you can list but still, the man is a living library!

  7. Hi Margaret.

    For the past few weeks I realized I personally need to reorganize my private web site and medical records. When I started, I never thought I’d have so much stuff. Not only that, but as is supposed to happen, we begin to categorize things that we didn’t know we would because we hadn’t yet done the research.

    I’m the type that has to mull things over before I do anything. But it seems we are at similar stages.

    If you like, we can incorporate some of your work into this new place so it is easy to find things. Perhaps not all of it, we could play it by ear a step at a time.

    For example, I am thinking that I would like to set up a section for ASCT. Then people about to have one could be referred to there with a simple link. On that page we would have, and keep updating, information about how to prepare for the stem cell transplant; hints about natural ways to increase your stem cells if there are any; tips on easy recovery;

    I would also like a section on juicing. I would like to start sharing what I’m learning about juicing.

    I have some other thoughts, but they haven’t yet formulated. If you have any, let me know. If you have given thought to how you wish we could organize some of the information, let me know. I can do it using GOOGLE SITES, which is what I use. I have a few sites, one of which is public, where I also store some of my findings (but not the medical stuff – that is private). https://sites.google.com/site/ostrowpilarski/

    h

  8. Dear Margaret;
    As you might remember, I am a MM patient since 2001. Recently, for 70 days I have tried with Bio Bran 1000 MGN-3 (Arabinossilano Composto) 3 dosis each day (6 g), unfortunately very expensive. It costs less in Italy than in Germany, but still… anyway, my blood test improved. I went on for almost another month, taking only 1 dosis a day (2 g) and my blood test became worth. Now I am thinking about trying with Scutellaria baicalensis. I am taking 8 g of Curcumin C3 Complex every day since many years and I think it saved my life. So I do not want to stop with Curcumin. Do you know if Scutellaria and Curcumin are compatible or is anybody informed about this issue? A short answer would be very helpful.
    With many thanks
    Fried

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