Another study on the progression from MGUS and SMM to full-blown MM. The idea of early intervention…

The umptieth “progression” study that I read this morning is co-authored by three authoritative, internationally renowned myeloma specialists for whom I have a lot of respect (even though I am about to tear apart some of their arguments…). You can read the abstract here: http://goo.gl/R8xVG I have also read the full study and will try to summarize the main points of interest…

First, though, the abstract tells us two main things: 1. we need to better understand mechanisms that regulate transformation from precursor to full-blown multiple myeloma; and 2. patients diagnosed with MGUS and smoldering myeloma should not be treated outside of clinical trials. In the near future, it seems reasonable to believe that high-risk precursor patients will likely become candidates for early treatment strategies.

I agree with point no. 1…but, concerning no. 2, as you may know/have figured out, I am highly suspicious of any early intervention strategies…My suspicions are based in part on a gut feeling, but mainly on what I have read in the past few years. Here is a concrete example: on page 297 of Dr. Ola Landgren’s MGUS/SMM study (see my January 20 2011 post for more info) we can read the following: we do not know if early treatment may facilitate selection of aggressive clones that are more capable of competing in the treatment-altered microenvironment. Well, as far as I am concerned, this risk–of creating aggressive, treatment-resistant, Darth Vader clones and making things much worse than they already are–drives the final nail into the “early treatment” coffin…As usual, though, this is just my opinion!

So if, like me, you are in a high-risk smoldering group, my advice would be to first try something non-toxic but (obviously!) backed by scientific studies/clinical trials. If the non-toxic approach doesn’t work, then you can take into consideration potentially dangerous conventional treatments (only in a clinical trial setting, of course, as emphasized by the authors…but even then, please make sure that it is not a big pharma-sponsored trial…). I repeat, this is JMO!

Okay, now for the full “progression” study. It begins with an overview of MGUS, then one of SMM…Then it discusses the various subtypes of MGUS: non-IgM (IgG or IgA) MGUS, IgM MGUS and light chain MGUS. Each subtype behaves differently. For instance, if you have IgG and IgA, you might progress to SMM, whereas with IgM the next “progressive” step is smoldering Waldenstrom’s macroglobulinemia.

Light chain MGUS. Since I get a lot of queries from folks who have light chain disease, about which I know very little, I was interested to read this part of the study. Predictably, the malignant LC stage is called “light chain MM.” Almost 20% of newly diagnosed myeloma folks have the light chain variety. Another thing I didn’t know is that “idiopathic Bence Jones proteinuria” is the equivalent of smoldering (asymptomatic) myeloma and smoldering Waldenstrom’s macroglobulinemia in the light chain field. Idiopathic B-Jones proteinuria belongs to the benign “light chain monoclonal gammopathies.”

Note: patients with MGUS with fewer than 10% cancer cells in their bone marrow can rest easy, according to the authors. Their overall survival is in fact similar to that of healthy folks. That’s because most MGUS folks will never progress to MM. I have highlighted this fact in many blog posts, too.

At this point we stray into unknown territory—the Risk Factor territory. A lot of uncertainty, here. The authors first discuss the Mayo Clinic risk-for-progression model for folks with MGUS and SMM, then the Spanish one. I have gone over both models in rather excruciating detail in previous posts, so there is no need to cover the same ground again…

Anyway, the upshot of everything I have read in this study up to now is that the risk of progressing to myeloma differs greatly from one individual to another. That is not good news for overtired doctors who would like to fit their patients into pre-packaged treatment protocols…And it is also not good for those folks who really want to know IF they are going to progress/how much time they will have until progression/and so on.

But I prefer to view this rather chaotic situation in a positive way. Given all this unpredictability, we, the individual carriers of this cancer (at whatever stage), have the ability to act…to do something…We don’t have to, and indeed SHOULDN’T, sit back and “wait for the other shoe to drop” (= an expression used by some myeloma patients that has always ruffled my feathers). And those doing chemotherapy or radiotherapy can at least try to protect their healthy cells in various manners…

That reminds me…Quick anecdote: one of my Mom’s friends, a woman with breast cancer, went through her harsh chemo treatments without losing her hair and experiencing many of the common side effects. Her doctors and nurses were flabbergasted. They had never seen anyone do as well as she did. Well, she had a secret: she took curcumin…And, by the way, she is still doing remarkably well now. I forget if in the end she told her doctors about her curcumin intake or not. I hope she did. I am ALWAYS in favour of telling doctors what we take…

Here I would like to toot my own horn, too. Just a wee bit.  🙂 After living with MGUS for six years, probably longer in fact (before I was officially diagnosed back in 1999, I mean), in the fall of 2005 I was diagnosed with SMM. And even though I am clearly a member of the high-risk-for-progression group, I continue to be stable…still stable after more than five years.

So, for now at least, I have beaten the odds…I have read statistics showing that a whopping 76% of us high riskers will progress to full-blown myeloma in the first five years. Indeed, the average time to progression in my high-risk group is 1.9 years. As I write this paragraph, I am knocking on wood (!)…But my progression risk percentile has now dropped from 10% to 3% per year…

Let’s get back now to our “progression risk” study. The authors mention two studies showing that MGUS precedes MM. I think I have reported on both of them, but anyway, here are the direct links: 1. “Monoclonal gammopathy of undetermined significance (MGUS) consistently precedes multiple myeloma: a prospective study” (“Blood,” 2009), available for free here: http://goo.gl/N0Skl; and 2. A monoclonal gammopathy precedes multiple myeloma in most patients.” (“Blood,” 2009), also fully available for free: http://goo.gl/t8lxO

The interesting part of the authors’ summary of these two studies (for me) concerned the M-protein. Even though I had read both of the above studies, I had forgotten this bit of info: in half the patients who eventually progressed to myeloma, the M-protein kept increasing every year (as mine was before I began taking curcumin). In the other half, the M-protein was stable until their diagnosis. The same was true for the light chain folks, whose FLC ratio was “skewed” two years before their MM diagnosis. Interesting. What this tells me is that we must go for regular check-ups…

Molecular stuff: I hope the authors won’t mind my telling you that the path from precursor to active myeloma is not sudden and discontinuous but rather is cluttered with a series of overlapping oncogenic events that occur inside the myeloma cells. These “events,” such as cyclin D (which I have discussed in previous posts), begin in the MGUS stage…

I found something interesting in the subsequent paragraph, which begins with the statement that organizing treatment trials for MGUS folks is complicated, mainly for these reasons:

  1. They are a bunch of healthy folks, more or less…
  2. Most MGUSers won’t progress, or have a low risk of progressing, to full-blown myeloma and are more likely to die of unrelated causes.
  3. Ideally, the best treatment for high-risk-of-progression patients would be non-toxic. The authors add that right now we do not have access to any such treatment…

Uhm. Double-and-triple Uhm…EXCUSE ME!!!!!! How about CURCUMIN?????? And, in addition to curcumin, my blog by now has quite a substantial list of scientifically-backed substances that attack and kill myeloma cells both in vitro and in vivo. I have been compiling this list since 2007…And I am merely a non-scientific researcher who holds a non-scientific Ph.D. I have had no scientific training since high school. Therefore, I am sure that there are many more substances with anti-MM activity out there! Let’s start finding and testing them! C’mon! Oh, this is so amazingly frustrating…

Let’s keep reading. Next topic: early intervention strategies for SMM patients. The authors see these strategies as “attractive” because we (smolderers) are at a much higher risk of progressing to full-blown MM. During their review of the trials that thus far have failed to show any benefits for SMM folks, the authors mention, however, that the trial involving zoledronic acid was stopped because a patient in the treatment arm developed osteonecrosis of the jaw, familiarly known as ONJ…Eh.

Okay, I am going to hang out the laundry now…I need to cool down a bit. I didn’t realize how upset I would get just by writing the last couple of paragraphs…

(Some time later…) I’m back. The laundry is hanging out to dry, and I am cool and focused again. Let’s see. In the midst of all this rubbish about early treatment for SMM folks, I was encouraged to find a cautionary note on the long-term use of lenalidomide in MM and SMM, based on the studies, presented at ASH last December, showing that secondary cancers can develop in some patients after extended use of lenalidomide (Revlimid)…No comment necessary, methinks…

Discussing the potential benefits of FUTURE early treatments, the authors mention the possibility of unexpected long-term adverse events, and they also raise the possibility that aggressive Darth Vader clones (the Darth Vader expression is my own invention, by the way…I mean, it isn’t in the study! 🙂 ) might be born, which is not surprising, since Dr. Landgren is a co-author of this study. At any rate, scary stuff…

At the end of this section, the authors conclude that high-risk precursor folks will likely become candidates for early treatment strategies. A few sentences later, though, they add that “prolonged stable disease” may be the best approach for smoldering patients. Mamma mia, roba da matti!…Oh bother, I have no more laundry to hang out. 😉

Okay, let’s be serious now. I admit that I always feel a bit discouraged after reading studies such as these…studies that make no mention of the possible benefits of diet, exercise, yoga, qigong, meditation, supplements…vitamin D testing…and so on. The sole focus is chemotherapy…nothing else. 

The status quo must change. But it won’t change unless we, the impatient patients!, intervene. And intervene we must, since our lives are at stake here. The easiest way is for us to start with our own doctors. It’s time for them at least to consider integrative myeloma treatments…I mean, we now know that there are things we can take that will enhance the anti-MM effects of certain chemo drugs while protecting our healthy cells at the same time. How can our doctors ignore the evidence that is piling up, study after study? And for how long can they ignore it?

Well, at the very least, improving our diet by adding anticancer foods/herbs/spices AND taking at least a few, scientifically-backed supplements AND vitamin D (if our D levels are low) can certainly do us nothing but good…at any stage of myeloma…

P.S. Sorry for any repetitions…no time now to check this post before publishing it…I have to dash off now. Ciao!

26 Comments

  1. Thank God I have a doctor that is not eager to start chemo. This is very interesting stuff Margaret, thank you very much for letting us know.

  2. Thank you, Margaret AND Happy Easter/Pesach !
    My recent numbers were pretty stable– I am SMM for
    five years now– NO synthetic Pharma treatments thus far– they did want to “try” zometa and prednisone 5 years ago– I changed doctors. But now my haematologist/oncologist is getting “antsy”– he chuckles at the AHCC I take– and disregards the curcumin (he is a transplant specialist)–I have started Black Cumin of late. I use Essaic Tea and Kombucha, liquid aloe– I cannot tell you how lucky I feel to have discovered your site !! It is always so helpful and uplifting. Best for Springtime, Beth

  3. The goal of pharmaceutical companies (e.g. the manufacturer of Revlimid) is the longest possible period of preventive therapy and maintenance therapy, and many in between cycles of induction therapy with the same drug. The shares are rising and the cash will be filled.

  4. are there in Europe or US integrative hematologists who don’t rush
    smoldering patients into chemos and transplants?

  5. The issue about using homeopathic substances is that the big pharms cannot control (put a price on it) those substances and they control many of the docs and their decisions with cash… cancer treatments are a cash cow for many medical universities and will continue to be such as long as the docs subvert their souls of healing to ‘treatment.’

  6. Margaret — I have been away from your blog for a while but I always like to check up with you. It seems the same argument about treating SMM is raging but I agree with you 100%. My SMM is the light chain type with 2 poor prognostic factors: high FLC and low IgG and IgA.
    I am coming up to two years post diagnosis but clearly have had MGUS or SMM for many years. In any event NO ONE is touching me with therapy until CRAB develops – except my curcumin of course! Gerry

  7. I enjoyed reading your article on MGUS and MM. I am only in the beginning stages with being diagnosed with the M-protein, but have been through a slew of blood tests, urine tests and xrays. Tomorrow morning is my appointment to see what they have found. I’m nervous, to say the least, but I also know a wonderful nutritionist who is a biochemist and survived 2 bouts of breast cancer. I have a lot to learn, but I’ll keep on reading. Again, thanks!

  8. So glad I found your website. I have also been diagnosed with MGUS and was frustrated by the fact that my doctor tells me that I can do nothing.
    After viewing the video Forks Over Knives and seeing the results of the China study in decreasing cancer with a vegan diet I have gone on 100% vegan diet with daily meditation.
    At least I am taking some charge of myself rather than waiting.

  9. Hi Margaret, I totally agree with . I live in tuscany , Italy and over here family doctors have no clue about natural treatments for cancer. I am 40, with 3 young kids and was told a year ago I have MGUS. For the doctors there’s NOTHING I can do about it apart sit and hope I wont get MM in 10 years time. I just got to know your blog and I am really happy I’m not the only one out there thinking with my head and studying in order to survive. It’s a year now that I use natural remedies as : liquid Chlorophyll (twice daily), Aloe arborescens (3 times/day), Curcumin (discovered a month ago), CoQ10, vit.D3, Essiac tea (twice a day, just discovered on the web). My father a month ago was told he had Acute myeloid leukemia, he’s taking Chlorophyll since then and today his hemoglobin is at 9 when doctors expected it to be under 8 and were ready for a blood transfusion. They just dont know how to explain his hemoglobin.

  10. Thanks Margaret for publishing this. I am a 61 year old guy from Charlotte NC who has been diagnosed with MGUS and reading your blog at least I am in touch with people who are in the same condition. I appreciate your doing all this research and if you need any help in any way you have my email address.

    Fred

  11. Does anyone else have a high IgM (over 900!) with no symptoms (at least not aware of) and no treatment? I heard Resveratrol and Curcumin help many. I am thankful for anyone who responds with any suggestions.

    1. I have MGUS IgM and my md/gl is 3,037. Yikes! I have no symptoms yet. About three weeks ago I started getting horrible leg cramps but this could be from
      excessive walking? I’m resting now and will do blood tests in two days.
      So I’m walking around with 3,037 md/gl. IgM. 900 sounds good.
      Deb

      1. Hi Deborah, I know its a couple of months since your posting but if you’re out there I’d love to share some correspondence as I’m a newly diagnosed igm mgus sufferer and need help!

        Thank you
        Simon (UK)

  12. Thanks for the article. I think its wonderful that you so all this work and share this information. Thanks for the bottom of my heart!

  13. I have been diagnosed with MGUS and see hemotologis/oncoligist Christmas Eve for some test results as I FLC ratio came back to high. Finding this portion of your blog is a blessing and I can’t wait to find the whole blog and learn more before my app. I keep breaking out in shingles type rashes, my hair has fallen out and my bones hurt, but I am hoping that does not indicate anything. He wants to do a bone marrow biopsy.I am trying to learn everything I can about MGUS and MM so any suggestions are greatly appreciated

  14. Thank you. I love this blog. I got diagnosed with IGA MGUS a couple of months ago after months and months of complaining of bone pain, neuropathy, dizziness, fatigue etc. Now they say none of these symptoms are down to the MGUS. My headaches are off the chart. I am 46 and living in Ireland. I had a kidney transplant in 1995. I went and got reflexology recently rather than take their suggested lyrics. It has been fantastic. I can feel my toes again after years of numbness and tripping on them. Amazing!!!! I am going to try this curcurmin. Somebody else recommended frankincense. Would you?

    Thank so much
    Sian xx

  15. Hi Margaret,have tried to send you a rather long email through your contact,but it will not send,how else can I get in touch with you please?Thanks

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