Tuesday, June 12, 2007

Rethinking Proactive Myeloma Treatment

My myeloma is still in a early stage, barely even smoldering. Thankfully, it has not grown rapidly; it seems to double about every 18 months. Nevertheless, I have asked my doctor to be very proactive in two ways: (1) Testing for potential problems, and (2) Treating the disease before symptoms develop. Although studies have shown that early treatment does not result in longer survival, my theory has been that early treatment should at least yield a higher quality of life by delaying symptoms like broken bones and failed kidneys.

Mayo clinic, on the other hand, has recently published a new consensus statement outlining a treatment algorithm for newly-diagnosed myeloma patients titled "Treatment of Newly Diagnosed Multiple Myeloma Based on Mayo Stratification of Myeloma and Risk-Adapted Therapy (mSMART". The abstract is here and the full text is here. It divides newly-diagnosed patients into two groups, high-risk and standard risk, and further divides both of those groups again into a class with active (symptomatic) myeloma and another with smoldering (non-symptomatic myeloma).

Lucky for me, I seem to be in the standard-risk group with smoldering myeloma. For this group, Mayo's algorithm suggests NO treatment. If I had started my doctoring at Mayo Clinic, I would very likely never have taken thalidomide, unless as a participant in a clinical trial. I don't know if that would have been good or bad; I took the thalidomide with my eyes wide open and was glad that my doctor was treating me aggressively. But now I'm thinking I'll ask him to be a little more conservative in treatment. Here are some reasons:
  • All treatments have side effects. For example, with thalidomide I had rash, low heart rate, erectile dysfunction, slow bowel, weight gain, and possibly a minor deep-vein thrombosis and peripheral neuropathy. Happily, none of those were show-stoppers, and all but the rash are gone now. However, the next step for me is Revlimid with dexamethasone, which could easily cause more-serious side effects.
  • To some extent, each treatment may be thought of as an arrow in the quiver. Once it's been shot, it's gone. Thalidomide seemed to work at first, but not any more, and it will most likely be unavailable later when I might need it more.
  • Treatments can cause the myeloma to mutate and become more aggressive. I suppose this is why early treatment doesn't actually extend survival. Since my myeloma is progressing slowly now, maybe I'm better off not provoking it unnecessarily.
  • Treatments can cause other cancers. I think that applies mostly to the older, standard chemotherapy treatments like melphalan, but those treatments may be all that remain for me if I use up the other arrows in the quiver too soon.
  • Treatments can even cause the very symptoms that we are most trying to avoid from the myeloma. I know a man whose kidneys are failing because of treatments, not because of the myeloma.
I'm quite content to try curcumin next. It's an unconventional treatment, to be sure, but there is good reason to believe that it might work, more than speculation. Further, it does not seem to carry the risks inherent in most of the prescription treatments. I'm taking two months of NO treatment after discontinuing thalidomide, then getting tests done June 26, for the final report card on the thalidomide. I will start the curcumin later that same day.

I am very interested in opinions of anyone else who reads this. If you see an error in my facts or my thought process, or even if you agree, I would value your opinion. I'm thinking about my life here. Thanks!

Sunshine and Sweet Pea were out a few nights ago. Incompetent at cooking, I had to make do: Picnic Dinner
A banana, an orange, organic strawberries, blueberries, organic yogurt, pistachios, asiago cheese, organic red wine. Estimated Weight Watchers points = 11. The cheese alone is six points.


  1. Hi Don,
    it's Anna from Italy. Many thanks for posting this. I'll read carefully the Mayo article. I want you to know my experience. I lived with MGUS for almost 18 years (I was diagnosed with MGUS at 26). In November 2005 I was diagnosed with MM as my BOM showed 70% of plasmacells and my IgG count was 37. My oncologist immediately suggested to pursue an autologus transplant and even gave my the first bottle of Thalidomide pills. I was scared and unprepared. I took time and went for a second opinion.
    The second opinion came from one of the best Italian researchers in the field. He was very clear and said no CRAB, no therapy. Just wait and see. That means that unless I have hyperCalcemia, kidney problems (kidney is Rene in Italian),Anemia or Bone lesions (from here the crab) I must not start any therapy. At that point I had two very different opinions, so I looked for a third one. I chose another excellent doctor and researcher and he gave me the same no crab – no therapy opinion. I therefore decided not to take the thalidomide and remained with the third doctor. In January 2006 my blood analysis where already much better and my IgG went as down as 26.7 in february 2007. The only changes in my life have been less stress from work (much less!) and more exercise (much more!).
    My last analysis where not so good, as my IgG jumped again to 34. But I know it can go down again. To make a long story short, my idea is to pursue a no-crab personal program, trying to do the best to avoid crab. More exercise, better nutrition, drink a lot of water and take a few selected supplements. I’ve been reading a lot on vitamin D recently and I had my 25 (OH)D tested. It’s quite low and therefore I intend to rise it up. That should help the b of crab...
    In sum, I want to let you know that I think you chose the right path (at least, the one I consider the right one!). I wish you the best and will follow your experience with curcumin with the greatest attention.

  2. That's quite a story Anna. Thank you!

  3. Don, based on what I have read, and like Anna, I think you have made a good choice. My feeling is that you are absolutely correct to take a non aggressive approach to treatment. With an aggressive form of MM, such an approach may not be wise. But in your case, and in mine, it seems to be the way to go, for the reasons you mention. In my case (slow but relentlessly ascending IgG value, and slight worsening of other markers) curcumin has worked, as you know. For how long, no way to tell, but hey, carpe diem, I say! ;-) Another thing you might consider (if curcumin shows benefits in your case, as it WILL!) is adding one gram or so of quercetin about 15 minutes before taking your curcumin. I am taking quercetin now, too, and it may have given my IgG count a nice downhill kick (based on my most recent tests). Just a thought for the future. Margaret, SM in Florence, Italy

  4. my mom has been on chemo (the pill form) (I think that's the thalidomide) for 5 mths now and will undergo her stem cell transplant late in the summer for her MM. Her's is in a later stage than yours, but I'm happy to hear that you're able to run. I'm running my first 1/2 marathon in her honor here in VA Beach. I hope all the best for you and your family.

  5. Uncpdeb,
    I'm impressed! May you have an excellent experience with your first half marathon. That's quite an adventure.