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: http://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: http://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! 🙂