Smoldering for 18 years

UPDATE MARCH 2016: TAB has been smoldering now (indeed, it seems that he might have returned to the MGUS stage!) for 18 years. CONGRATULATIONS!

UPDATE March 2011: TAB and I just exchanged a few e-mails, and I wanted to let everyone know that he is doing incredibly well. He has been smoldering now for 12 years (I am too lazy, though, to change the below info on his age etc.)! :-)

 

April 21 2009 post. A blog reader and myeloma list patient, whom I will call TAB from now on, contacted me recently, telling me that he had written a report about his case of smoldering myeloma. He asked if I could add the report to my blog. Unfortunately, I cannot. The least I can do, though, is write a “summarizing” post about it.

 

What I really liked about TAB’s report is that it is set up much like a clinical case study. It begins with the following question: “Are supplements an alternative to conventional treatment of smoldering myeloma?” TAB’s answer is yes…that, based on his experience, certain supplements can slow down or reverse the progression of smoldering myeloma. Okay, let’s dive right in…

 

TAB is 67 years old and has been smoldering for the past 11 years. Eleven years…impressive, huh? Yes, I was impressed (and encouraged!), too. Based on the Mayo Clinic report (see my April 16 post), he now has a 67% risk of progressing to active myeloma. But his data seems to indicate that the disease is not progressing and it may actually be receding. Fabulous. This is the kind of news that I love to read! And no, he is not a curcumin-taker. Let’s keep going…

 

TAB was diagnosed in 1998 with asymptomatic smoldering/indolent IgA  lambda multiple myeloma. The diagnosis was triggered by a borderline total serum protein (8.7 g/dl (6 to 8.3 g/dl) on routine testing.  Further testing revealed an IgA level of  3220 mg/dl (81 to 463 mg/dl).  Serum protein electrophoresis revealed an M spike in the beta region of 2.5 g/dl. A bone marrow biopsy showed 40% plasma cell involvement.  A bone marrow biopsy 3 years later showed 27% plasma cells. A full body bone survey was negative. An oncologist advised him to join a study utilizing high-dose chemotherapy followed by an autologous stem cell transplant. He declined this and decided on no treatment. He decided instead to go for what we call “watchful waiting.”

 

Then, In January of 2000 after about two years of watching the trend line of critical data slowly creep in the wrong direction, I began the following supplements:

·        IP6 Inositol  1.5 g/day

·        Inositol  2 g/day

·        Selenium  200 mcg/day

·        Vitamin C  500 mg/day

·        Vitamin D  1000 iu/day

·        A Multivitamin/Multimineral  per day

 

He has made dose adjustments over the years, but these (on the above list) are the only supplements he has been taking.

 

Lo and behold, before a year had passed, his myeloma markers began improving: his IgA and 24-hour urine protein have been decreasing in the past 5 years, and his B2M stopped increasing and has remained stable. His hematocrit had been decreasing in his pre-supplement period, then levelled off and is now increasing. Excellent.

 

At the end of the report, TAB asks the obvious question: Did  the supplements cause a decrease in progression or would the results have been the same without the supplements?  I would argue the statistical significance of trend reversals suggests the supplements were the cause of the reversal.

 

Then, in his Conclusion, he suggests that his regimen may slow or reverse the progression of smoldering myeloma.  For those patients whose trend lines are moving in the wrong direction, this or other supplementation plans may be an alternative to the watch and wait approach.

 

I agree with TAB. I don’t want to watch and wait. I want to act. The purpose of all my research is to try to stay on top of promising non toxic anti-myeloma substances and test them out on myself, providing they don’t cost an arm and a leg and can be ordered from a reliable source. True, what works for me, or what works for TAB, won’t work for everyone (I wish the opposite were true!). But if we don’t try, we will never know, right? The important thing is to make sure that we focus only on supplements backed by solid scientific studies. And we should inform our doctors about what we are doing. And also, never forget these three words: DO NO HARM.

 

P.S. I would be happy to forward TAB’s case report upon request.

8 thoughts on “Smoldering for 18 years

  1. ann

    Just re-reading TAB’s regime. Is he still taking the same supplements and are his figures remaining stable ?
    Also did he further his own stem cell related supplements ?

    Reply
  2. Julie Peterson

    I am interested to know how TAB is doing? I am also IGA lambda in the smoldering stage (initially diagnosed as stage 1 because of bone involvement- they could not find the lesions in follow up x-rays) going on year 2 and doing well.

    Reply
  3. Darlene Mellein

    Hi Margaret,
    I would be interested too. I’m also IgA Lambda and smoldering. I have some kidney damage, about 30%, but they can’t trace it to myeloma, and because of my creatinine numbers over the years–before they even thought to test me for myeloma–it may be that the damage was because of very heavy antibiotics when my appendix burst or something else –infection or whatever, that I wasn’t aware of. I was diagnosed in April of this year. I want us all to stay smoldering!

    Reply
  4. Gertie

    Hallo Magaret,

    First of all I want you to know how your blog has my interest. I read it very often and it helps me to stay possitive!
    Unfortunately I’m an IgA-Lamnba MM patient too and therefore very interested in TAB’s report. While I am on chemo’s now and an autologous stem cell transplant is needed (too many plasma cells), after this horror period I’ll start te curcumin (which i took but not enough) and other more healthy and non toxic stuff trying to keep the markers down that way. Hopefully Those supplements will enlarge my lifetime with years and years.
    Thanks in advance for sending the report.
    With kind regards, Gertie (from Utrecht, Holland)

    Reply
  5. Robert Payne

    I am smoldering too. IgA Kappa. Dx August 2011. I changed my diet, practicing mediation and have good Onc. Also in clinic study getting monclonal antibodies. 13 years of smoldering would make me 83. You are an inspiration

    Robert Payne

    Reply
  6. Bob P.

    Hi Margaret,
    I am a recent smouldering MM patient and have been following TAD’s supplements. I am curious of any new supplements TAD has added into his protocol. In particular, curcumin. I am thinking about increasing my curucumin to you recommended dosage of 1 gram, 2 gram, 3 gram, 4 gram in succeeding weeks, but would like to get a current view on how much you and Tad are taking.

    Reply
  7. Iveta K

    Hi Margaret,
    I am IgA Kappa smouldering since 2013. I improved my diet, started exercise and supplements.
    I would be very interested to read TAD’s report.
    Thank you in advance,
    Iveta

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *