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Recommendations for MGUS patients from Dr. James Berenson and a myeloma consensus panel…and my own comments, as usual :-)

Posted Oct 17 2011 6:27am

In this video, Dr. Berenson gives the background for the creation of an international “consensus” panel on MGUS:

The second link will take you to the written “consensus” text. It’s long, but it contains some good information, for example the bit on vitamin D and calcium supplementation:

Yes, all this is very interesting, BUT I really wish our MM specialists would also address the issue of . Of course, I realize that it would be impossible, for obvious reasons, to recommend ONE SINGLE diet for all of us (MGUS, SMM and MM). However, I strongly believe that it wouldn’t be that difficult to compile a list of recommended and possibly beneficial foods. And hey, why not?, also a list of foods to be avoided like the plague!

The “good food” list should certainly include broccoli and all the cruciferous family veggies, celery, parsley, garlic, onions AND, very importantly!, of all sorts…especially turmeric, ginger, hot red pepper (=capsaicin), Nigella sativa/black cumin (I bought some organic Nigella sativa while I was in the States, and boyohboy is it yummy! It gives a delicious, slightly peppery taste to your food, too. I sprinkle the little black seeds on most everything, just as I do with turmeric) and so forth…

Another thing: from what I’ve read, we also need some protein. And that is why I occasionally have some red meat (free range Tuscan, no antibiotics, no hormones etc.), even though I hate the idea of eating part of any animal. But I also want to avoid becoming anemic (=the A in CRAB, let’s not forget that…). 

Now, how hard would it be to compile a list of foods that we shouldn’t touch even if there were nothing else on the table? For example: sodas and anything containing high fructose corn syrup (hey, did you know this corn syrup crap is inside cough medications? No kidding. I was absolutely flabbergasted when I bought some Robitussin for my cough while I was in the U.S. and found HFCS listed as an ingredient! What the…??), asparagus (yes, we apparently should avoid eating asparagus…see my GOOD OR BAD FOR MULTIPLE MYELOMA? Page on the right).

More “food” for thought: folks who have been through stem cell transplants or have low immunity should probably avoid a raw fruit and veggie diet. Because of my almost nonexistent immune system, I no longer eat or juice anything with a skin, no matter how organic it is. I prefer to be cautious, that’s all. So I peel and wash everything carefully…Too bad, but there you go…

Ah, that reminds me of something important. Recently, some of us myeloma folks have had some interesting exchanges on the issue of “to boost or not to boost” a myeloma immune system. For some unknown (to me!) reason, many of us keep repeating the refrain that, since myeloma develops inside our immune system, we shouldn’t do anything to boost it, because we’d be boosting the cancer cells, too. But wait, where is the to back up that statement? So far, I have seen none. Zip. 

Ok, perhaps one should not take any of those “immune boosting” supplements that you can find publicized online. But I disagree, VERY STRONGLY!!!, that we shouldn’t do healthful things to keep our immune system well and strong. After all, when our defenses are low, it’s more difficult for us to fight off infections, right? And infections are so bloody dangerous for us. They can kill us. Take Michael Gearin-Tosh (do a search of my blog if you don’t recognize his name), for instance. He refused to take antibiotics to treat a tooth infection and ended up dying of sepsis in 2005. His death could probably have been avoided. And that is why, whenever I have an infection (right now I’m at the end of a 7 week + very bad cough that I didn’t take good care of in the beginning, oh well), I take antibiotics and whatever else is available…not just conventional stuff, mind you. I also take Manuka honey and so on…

Speaking of 2005 and infections, that was the year of my painful, incredibly bothersome yeast infections. I spent more time with my gynecologist than with anyone else. It was an awful period. Nothing worked (my gyn prescribed tons of antibiotics for me, and back then I took everything without asking any questions or knowing any better). Well, as we know, recurrent infections are a symptom of active myeloma…eh. 

At any rate, some time after beginning the curcumin protocol (=January 2006, but back then I was mainly keeping an eye on my MM markers, not on my general health…so I don’t remember exactly when I realized this), I noticed that the infections had stopped. Just like that. And I have NOT had one yeast infection since. At the time, I was so relieved that I didn’t connect the dots…but I’m now certain, 1000000000%, that curcumin has eliminated that problem for me once and for all. A most welcome side effect of this wondrous spice ingredient, of which there have been many, actually, including bringing down my high cholesterol, triglycerides and so on…Eh, in addition to the most important effect of all–keeping me, = at high risk of progression, stable for all these years…! :)

Well, I’ve sort of gone all over the place with this post, sorry about that, but that’s because I’m feeling like my old self again, energetic and feisty and perky, with words and ideas rushing through my reawakened brain, finally getting plenty of sleep, since I no longer am awakened by coughing fits at night. Oh, by the way, if we should be doing anything to boost our immune system, then we shouldn’t ever go to sleep, either…There is a strong, reciprocal relationship between sleep and the immune system, you see… ;)  And, hey, we also should NEVER EVER laugh, since laughing also gives a boost to our immune system…

Nope, if we wish to avoid boosting our immune system, we should always stay stressed out and angry, never sleep, eat the worst possible foods chock full of chemicals, smoke, get drunk, never laugh or exercise or meditate…well, you get my point…

I mean, HELLO?, that would be absolutely ridiculous…RIDIKKULUS! Makes no sense to me!

But what do think? I’d love to read your comments/recommendations/whatever. And please feel free to disagree with me, too! I’m all in favor of constructive debate… :)

P.S. I would like to state that I wrote this post with absolutely no intention of criticizing Dr. Berenson’s wonderful and much appreciated work and research. By now you know that this amazing specialist is at the top of my verrrrrry short (sorry to say) list of . :) No, this is not a time to criticize. I would simply like to see our MM specialists speak out on foods and lifestyle (whatever!). The time for the generic “eat healthy and exercise” advice is gone. We now know that there are specific foods (etc.) that might help us in this battle. So let’s name them! I don’t want to be the only one doing stuff like this…basic stuff, when you think about it…

Written by Margaret

October 17th, 2011 at 3:27 am

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