Markers of progression from MGUS to MM…Part II

And now, finally, we get to the Conclusion. The researchers state that, from a clinical standpoint, it is essential to identify which of us are going to progress to MM, in order for our doctors to be able to keep a closer eye on those in a high-risk category and be able to use some or all of these markers to determine the choice of therapy and response to therapy in patients with full-blown MM.

From a research standpoint, they say, the development of better biologic and molecular markers will improve our understanding of the molecular pathways involved in disease progression in patients with MGUS/MM. This, in turn, will help identify newer therapeutic targets and novel treatments

More or less, that is the study’s conclusion. But I still have a few comments to make on what I read in the middle of the study…at the end of the discussion concerning genetic abnormalities, hyperdiploidy, trisomies, RAS mutations and MYC up-regulations:

Taken together, although many of the above-mentioned markers have been identified in patients with MGUS, and the prevalence of some markers has been reported to differ between MGUS and MM, currently it is unknown whether any markers are associated with an excess risk of progressing from MGUS to MM. Importantly, at this time no systematic study using serial samples (from the same patient over time) has been conducted to formally address the role of these genetic markers in predicting disease progression in patients with MGUS/SMM.

What this section says to me…quite loudly, in fact…is that all the MGUS/SMM progression studies are little more than a long series of words and sentences surrounded by elaborate graphs and Tables. To be blunt, these studies are essentially useless to us (=the patients). The bottom line, in fact,  is that not even one of them can predict who will progress to active myeloma and who will remain at the MGUS or SMM stages…

At this point, though, I asked myself the following question: do I really need or even want to know if I am going to progress to active myeloma some day? Heck. No. I. Definitely. Do. Not.

Knowing what might or might not lie ahead for me two, four or ten years from now wouldn’t have an impact on my life… Oh wait a second. That is not entirely true. It would almost certainly have an impact: stress, to some degree. And stress, as we know, makes MM cells proliferate (

So why would I willingly choose to add a “timer” to my daily life? Indeed, why would I choose to add to Stefano’s burden of worry and stress (…even though he never shows it, I know it’s there…)? Or to my family’s worries? Why? Why? Why? Wouldn’t it be better just to enjoy my life, husband and cats, have fun with my friends, take curcumin and other promising anti-myeloma, non-toxic, backed-by-science substances and so on?

Sometimes, just sometimes, perhaps it is best not to know: “Where ignorance is bliss, ‘tis folly to be wise…”

Now, don’t get me wrong, eh. Blissful ignorance doesn’t mean that I never think about the possibility that one day I might progress to full-blown myeloma. Hah. Believe me, I do…perhaps not every single day…but I do… And, when I find out that a myeloma friend, especially one close to my heart, is dying, the emotional pain is a bit hard to bear…Susie, many hugs to you…

No, blissful ignorance doesn’t mean that I will stop doing all the things I do to slow down or even, wowsie!, halt my progression… Besides, all of these activities really help me deal with my fear of (and anger toward!) the nasty beastie that is currently slumbering inside my bone marrow…

And my research and ramblings might be of help to others, too. That is a great comfort to me…


  1. Margaret, I don’t want to know how much longer I have to smolder! I’d much rather learn of things I can do to delay it…or better yet, receive a spontaneous remission! I love those words! 🙂 Thanks so much for your research and encouraging words! Donna

  2. My curiosity has its limits as well. Often the information you uncover is helpful. I hope you continue with your research. When and if you discontinue it would be quite understandable.

  3. It makes a difference to me. Plan for the worst, hope for the best.

    Working out the rate of change of my unstable IgM MGUS (based mostly on B2M) gave me a vague indication of how long I might have if things go badly. As a result, I have worked out key items on my ‘bucket list’, and started making progress on the ones which either take time, or will be harder to do if I am ill. If it all settles down and I have another 20-50 years ahead of me, then I will have lived a more fulfilling life than I might have otherwise. If it goes badly, I will have done the things I most want to.

    I can’t lose this way. But I needed the inspiration of doing that math. Without it, I was assuming I would be able to do some things after my retirement in X years time. Basically, I have reprioritised.

    Still want ways to stop it progressing, but accepting the fact that progression looks more likely than not.

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