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

In this video, Dr. Berenson gives the background for the creation of an international “consensus” panel on MGUS: http://goo.gl/EXk2w

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: http://goo.gl/Lkh6T

Yes, all this is very interesting, BUT I really wish our MM specialists would also address the issue of DIET. 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!, spices 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 proof 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 chronic 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 not 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 you 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 most admired MM specialists. 🙂 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…

14 Comments

  1. Hi Margaret,
    My understanding is that we haven’t got one immune system but several: B cells, T cells, macrophages, etc.
    Furthermore, Myeloma is a cancer of the bone marrow but our digestive system is also an important contributor to our immunity and, for example, our intestines produce a large proportion of our IgA . It therefore seems entirely logical to me that we should try to support the parts of our immunity that are working properly.
    Paul

  2. Hi Margaret,

    Thank you for all the work you do to find out what is and is not good for us. I didn’t know I had MM waiting to come out at the time, but when I think of when it did rear it’s ugly head 3 years before I was officially diagnosed. I had done this silly diet where you ate whatever you wanted until you weren’t hungry anymore (very small portions, but generally not good choices). I was back to drinking many diet cokes. I lost 45 pounds but probably my ammune system too. I then had a bout with Lyme Disease (I think anyway, had a tick bite, but I’ve had it before so I always test positive). And from there never felt well again. I had always been a health food/green habits person, so that diet was a big change. After I got sick I craved protein instead of sweets and carbs.
    After less than 1 year of treatment Velcade/Dex Thalomid( had walked around untreated,full blown MM 3years)I went into remission and have been in remission ever since. I am back to eating as healthy as possible, trying to live as stress free as possible, doing daily journal writings, being entertained daily by very funny family members. I have been in remission more than 3 years. I have been on curcumin (6 grams) 4 months. I asked my doctor to give me my marker numbers to check. He said “All your bloodwork is normal”
    Anyway, I think eating healthy, living life as stress free as possible, and for me this includes a strong faith also( because with 6 kids, an art business in a bad economy, medical bills because I am on dialysis, dialysis itself etc. I have to give everything over to God daily),is what will best keep the MM away. As far as we have personal responsibility for it.
    Glad you are feeling well again Margaret.
    Best Regards,
    Pam

  3. I’m a vegetarian, but I’ve reluctantly eaten meat since I’m so anemic and sick. I don’t eat a lot, because I can’t tolerate it, but some beef, chicken and fish is probably good for me.

    There are way too many people on this planet; that’s why we have factory farms and the terrible things we do to innocent farm animals. It’s hard to reconcile, but I do tread lighter than 95 percent of people.

    Another good post.

  4. totally agree with you Margaret about the importance of diet. Have just been to the big London Myeloma Information day (run by Myeloma UK charity). First and last time I will attend! All the big wig onoclologists speaking. Not one doctor mentioned diet or exercise as being important, not one doctor (until i reminded them!) mentioned that some/many MGUS patients to do not actually develop active Myeloma, all doctors talked in terms of ‘When you relapse’, When you need treatment – not ‘if’…A very depressing day!

    thank goodness for your positive and uplifting blog Margaret with useful medical and lifestyle research and news.
    Clare
    London

  5. I posted this on the MGUS-SMM-MM Support facebook page, but will add here…Margaret posted that curcumin helped her PN symptoms. I have also had the same results! I have MGUS–very low counts, but have fairly aggressive osteoporosis. I take 1000mg daily. Dr. Berenson mentioned curcumin in one of his MGUS videos–the Vitamin D one, I think.
    I, too, am anxiously awaiting the diet connection. I am not looking forward to my next hema/onc visit…I predict he will be dismissive of my adding curcumin, even if markers are stable or even lower.

  6. Yes Paula,

    I have been in remission since about the 6th month of treatment with velcade/dex/thalomid and I have never been out of remission. I was on Thalomid as a maintenance med for awhile but stopped taking it to get ready for a kidney transplant. At the last minute one of the transplant doctors said he didn’t want me to have a transplant because I have MM, an incurable disease. After talking to the doctors with 6 pages of notes as to why I should have a transplant and the sooner the better, they agreed that I can have one 3 years after remission on no meds. Which is less than 2 1/2 years from now. I asked if curcumin would count and they said no, they didn’t think of it as a medicine. So I am doing 6 grams of curcumin daily. Since I am in remission 6 grams seems like enough and more would just give me a chance for more trouble absorbing iron. Which I have anyway being on dialysis.
    Those doctors probably think they will never see me again, but they will, unless I get a transplant somewhere else first.

    Pam

  7. Pamela, your story sounds very much like my brother-in-law’s. His wife INSISTED to docs that they perform the kidney transplant–she was the donor. The doc finally relented and performed at a different hospital that would allow it, even with his MM (SCT in 2009). They had the transplant in June of this year and are both doing great. I hope you are as lucky! You certainly sound tenacious enough to get them to listen. 😉

  8. Hi, I have Schnitzler Syndrome, of which MGUS is one of the symptoms. I’m looking for something I can do to help reduce my paraprotein level, so thanks for your tip about curcumin.

  9. I have rapidly escalating free kappa light serum (160,9) , I am awaiting results of MRI and bone marrow biopsy. Would taking curcumin be of benefit in stabilising the levels.

      1. I have managed to stabilise my blood levels for the past 10 months. I have been diagnosed with Multiple Myeloma and now have changed my diet to no meat fish chicken dairy or eggs. I am eating lots of fruit n veggies and this along with herbs spices and a number of natural remedies including black seed oil graviola egcg dandelion root amla tumeric and mornings. Seems to be working. I also have no sugar in my diet.
        Dave

        1. Dave,

          I was diagnosed with MM two and half years ago. Took chemo (dex, velcade, cytoxin) for four months, then stopped because of severe side effects. currently i take fresh turmeric/ginger juice, am a vegan and take some herbs and vitamins. But my kappa light chains have continued to climb since I stoped the chemo. Would love to learn of your daily diet and supplement regimen (including what brands you use) that have helped stabilize your blood work.
          I will appreciate hearing from you, either on this blog site or directly at my email:
          sudhairwin@gmail.com

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