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“If we knew what it was we were doing, it would not be called research, would it?” – Albert Einstein

Recently there was a study about treating those MM patients that were historically in the “wait and see” mode. As you can imagine folks were a bit rattled (an understatement). Kind of like how we feel when someone says SCT shows better lifespan, or Tandem wins, or delayed SCT shows same results, etc. We can get all whigged out about whatever choice we have made. (Which BTW, I recommend not doing that. Don’t second guess, don’t be dismayed. You made the right decision for you at the time bringing in all the factors that were important to you with the information then.)

Ok. So The Myeloma Beacon being ever vigilant and having a continuing uncanny perception on how their readership might be feeling with certain news, did an article today with a Dr. Ola Landgren, a MM researcher at NIH that specializes in this particular group of MM patient presentation.

Article Here

A recent commenter on my blog mentioned that he sees Dr. Landgren. I had not heard of him, but then we are not MGUS or Smoldering, so I didn’t beat myself up too much about it. It was kind of cool to see his name so quickly after this mention. Between him studying those not yet symptomatic and Dr. Bart Barlogie (et al) studying those who are demonstrating high resistance to drugs, both looking for the genetic markers, I think we got it covered! 

Margaret’s response to the Beacon article here! I gladly defer to her on this issue as she has been blogging as an MM patient in this category for a very long time.

 

13 Responses to “Early Treatment for MGUS & Smoldering”

  1. Terry says:

    Hi Lori, it was so coincidental that I left a recent post about Dr. Landgren and then the interview appeared on the Myeloma Beacon. Also, don’t forget, Dr. Landgren’s work deals with all stages of myeloma, not just MGUS, etc. He and the NCI/NIH are involved in trials and research which would aid all of us. I am fortunate to have him on my case and people like him, Dr. Barlogie, etc. are hot on the trail of this &^$#@* condition! Thanks for all of your posts on the MB and your blog. You are really awesome. Terry

  2. Lori Puente Lori Puente says:

    It is indeed Terry! I would say you are quite fortunate too! Good luck with everything! Keep us posted on how you are doing.

  3. Louise Hanel says:

    I am the spouse. My husband diagnosed January with smoldering.
    I would guess all MM victims must have started out with MGUS then smoldering then full MM. I am guessing it had to start small then grow. So it appears the best decision would be to treat it right away – but who knows. I met a lady who has not had any treatment and is smoldering for 11 years! And also a non-treated fellow smoldering 7 years.
    So how can one make a good decision as to what to do?

  4. Terry says:

    Hi Louise, therein lies the rub. To treat SMM is a double- edged sword–chemo side effects and maybe no increase in survivability. That is what people like Dr. Landgren are working on. Logically, it would be great to nip it in the bud, but how? Vaccine, gene therapy, chemo, natural substances like curcumin, pterostilbene, peptides…??????? that the million dollar question…till then most of us just watch and wait….and sweat it out every few months waiting for the results of our blood tests, MRI’s, etc., never knowing when we will need to start treatment–months or years. Terry

  5. Lori Puente Lori Puente says:

    Actually Louise, most MM patients are not lucky enough to know they have it before a catastrophic event like a broken bone or compressed vertebrae. Smoldering/MGUS is so often not detected, as the symptoms can be so benign, and certainly in the younger crowd it isn’t even on a doctor’s radar. The prevailing view is to not treat until it develops further. Many of us view this situation as a positive one as you can do things to help keep it that way. I would encourage you to get entrenched in Margaret’s Healthblog as she writes extensively about the many things you can do to keep it right where it is and not developing further.

    Treating this presentation is a new idea that will need a lot of further study and so I would be quite conservative for now and sit tight. The psychological toll can be great so good idea to work on that and learn “how to live with cancer”. That is a huge challenge for all of us.

  6. Robert Oppenheimer says:

    Does anyone know if they would accept a patient from Canada at NIH
    Than x
    Robert

  7. Terry says:

    Hi Robert, I am in Dr. Landgren’s NIH study of myeloma. I am a U.S. citizen. However, you are eligible as a non citizen for trials as long as you meet the medical requirements for the trial/study. Theoretically, priority can be given to U.S. citizens /residents. Check the National Cancer Institute’s website for details.

  8. Betty says:

    Can someone kindly point me to Margaret’s Healthblog. I’m 59 F diagnosed with MGUS 12 years ago with no treatment. I’m very interested in learning more about the natural precautions to further progression. IgM stays around 950-1000 and B12 & B6 are very high as well. Maybe due to the fact that I take B Complex + Multi that both have B’s in them. Or maybe those vitamin levels are part of MGUS?

    Thanks to all in advance.
    Betty

  9. Lori Puente Lori Puente says:

    Betty, It is listed on the right side of my blog under “Blogroll” and it is “Margaret’s Corner”. If you “click” on it, it will take you there. I will also send you the link in a private email.

    Best, Lori

  10. Paulette Gaillard says:

    Please provide me with your “Margaret’s Corner” information to prevent MGUS from turning into MM.

    Thanks……..Paulette

  11. Neville Meister says:

    Please provide me with your “Margaret’s Corner” information to prevent MGUS from turning into MM.

    Thanks……..Nevillemeister

  12. Jeff Glettner says:

    My wife was just diagnosed with smoldering Multiple Myeloma. The Dr. said she had 30% defective cells in the bone marrow test she had. The Dr. said she would not start chemo therapy until it reached 40%. She is due back for a blood test in 8 weeks.

    Seems like a long time to wait.

    I was wondering if there are any ways through diet, alternative/holistic methods to help her in to prevent further progression of the Multiple Myeloma?

  13. Tina says:

    I was diagnosed with MGUS in 207 and supposedly I have polyclonal gammopathy. I went to the hemo/onc doctor every three months, now I only go 2x per year so I that has me hopeful but I wish it could cure itself. No treatment so far. I tend to run high in my IGg levels and a little elevated when I test for Beta two microglobulin testing; my levels fluctuate. My doc thinks my MGUS/IGg could be linked to inflammatory conditions like my fibromyalgia, arthritis and having an autoimmune disorder. Has anyone ever heard of MGUS being connected to inflammatory or autoimmune disorders? Best of luck to all.

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