Watch ‘n wait or…act?

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. TAB’s report is now publicly available on my blog (see my August 2012 posts). You can also write to him. Here is the relevant link: http://margaret.healthblogs.org/good-or-bad-for-myeloma/smoldering-for-14-years-tabs-story/ Please note that I no longer send his report to individual readers, since it is available on the blog now. Thanks! UPDATED in the fall of 2012.

62 Comments

  1. Hi Margaret,

    Those results seem rather impressive considering the minimal amount of supplementation that TAB was using.
    Did TAB happen to describe his regular or average diet in his report?
    I would be very interested in reading his case report.

    Art

  2. Hi

    very interesting especially as my myeloma appears to be smoldering and I’m IgA kappa, with similar levels, could you ask TAB what is the difference between IP6 Inositol & Inositol and what are they working on?? I think it is a good idea to rotate some of the herbs so the body doesn’t get used to one thing, we need to fight this from several angles.

    Thanks Sue

  3. IP6 and Inositol are both forms of Inositol that together work better than either alone. The claim is that Inositol does not kill myeloma plasma cells but causes them to behave like normal cells that live a normal life then die a natural death. The thrust of this report is not just that supplements may work but also that graphing your data can be very beneficial to monitoring your progress. Your computer can run very powerful software (Excel spreadsheet) that allows you to very easially do a statistical analysis of your data. When you plot your m spike data for example you can add a trendline to the plot that filters out the normal ups and downs and gives you a clearer picture of what is really happening. If you are on some new medication or are experimenting with a supplement, the trend line can help you and your doctor determine if it is working.
    TAB

  4. I’m with TAB too.
    I think the oncologist who “advised him to join a study utilizing high-dose chemotherapy followed by an autologous stem cell transplant” should be struck off.
    How can you justify such painful and dangerous procedures when the disease is at such an early stage and you don’t know how it is going to progress?
    It makes you wonder if some of the decisions taken on our behalf are based on financial rewards. I wonder how much money an oncologist receives for an SCT?
    Oh, and by the way, why is no one asking if they have managed to remove the cancerous stem cells before re-transplanting them in an autologous SCT? If not, remission will surely be short and it hardly seems worthwhile.

  5. Hi,
    if possible, I would like to ask TAB whether, in addition to supplements, he also did some change in his diet, reduced his stress (if any) and do more physical exercise or anything else.
    Also whether he had some pause, or cycle in the years, in taking those supplements or basically never stopped them.
    Many thanks.
    Franco.

  6. Once I started on the supplements I have continued taking them religiously. I did experiment with Curcumin for awhile but did not see any effect. I felt I was taking too much stuff so I went back to the supplements that are in my report. I am not on any special diet. I eat anything that is put in front of me. About stress, I did retire about two years after my diagnosis. I think I was under more stress dealing with myeloma than I was on the job. Maybe playing a lot more golf after retirement helps. My doctor once told me to play more golf. That was the best medical advice I ever received.
    TAB

  7. Hi Margaret

    Would it be possible for TAB to forward me his report, so I can look at it in more detail. TAB, I fully agree with your approach, I have followed a similar one although I have taken more supplements and mixed them around a bit more. When you say you eat anything, are your meals naturally healthy, or do you go in for burgers, sweets, etc as well?

    Sue

  8. Hi TAB, could you please let me know which line do you add with excel? There are several and I’ve always wondered which is the best one to asses the Mspike progression.
    Thanks
    Sherlock

  9. Greetings, What an encouraging entry. Tab I’m really happy for you! So nice to see that there is hope. I would be interested in seeing the complete study as well. Thank You, Debi

  10. Hi Margaret,
    would it be possible for TAB to forward me too his report ? Thanks.

    TAB,
    thanks for the explanation

    all:
    I am taking too a lot of supplements, maybe too many, maybe too low dose each. But I want to highlight that the only time I had a decrease (-10 % in mg/dL or g/L) in Monoclonal Protein was after taking curcumin + Vit E + Vit C + Acetyl L-Carnitin (3 months before also Selenium and a Vit B supplement). So some supplements were the same as TAB’s.

    Thanks.
    Franco.

  11. Hi Margaret,
    Please send Tab’s info to me as well. It breaks my heart to think of taking MORE supplements but it sounds like Tab is doing very well…smoldering 11 years…can’t argue with success! Can anyone tell me if it’s safe to add IP6 to curcumin, quercetin, EGCG, and omega 3 fish oil? I don’t know what to leave off, if anything! Thanks for sharing Tab and Margaret. Bon Appétit!

  12. Here is a brief abstract regarding IP6/Inositol and a few of its potential effects on the human body. It’s dated 2006, and though not new information, it is certainly interesting.

    Art

    Protection against cancer by dietary IP6 and inositol.Vucenik I, Shamsuddin AM.
    Department of Pathology, University of Maryland School of Medicine, MD 21201, USA. ivucenik@umaryland.edu

    Inositol hexaphosphate (IP(6)) is a naturally occurring polyphosphorylated carbohydrate, abundantly present in many plant sources and in certain high-fiber diets, such as cereals and legumes. In addition to being found in plants, IP(6) is contained in almost all mammalian cells, although in much smaller amounts, where it is important in regulating vital cellular functions such as signal transduction, cell proliferation, and differentiation. For a long time IP(6) has been recognized as a natural antioxidant. Recently IP(6) has received much attention for its role in cancer prevention and control of experimental tumor growth, progression, and metastasis. In addition, IP(6) possesses other significant benefits for human health, such as the ability to enhance immune system, prevent pathological calcification and kidney stone formation, lower elevated serum cholesterol, and reduce pathological platelet activity. In this review we show the efficacy and discuss some of the molecular mechanisms that govern the action of this dietary agent. Exogenously administered IP(6) is rapidly taken up into cells and dephosphorylated to lower inositol phosphates, which further affect signal transduction pathways resulting in cell cycle arrest. A striking anticancer action of IP(6) was demonstrated in different experimental models. In addition to reducing cell proliferation, IP(6) also induces differentiation of malignant cells. Enhanced immunity and antioxidant properties also contribute to tumor cell destruction. Preliminary studies in humans show that IP(6) and inositol, the precursor molecule of IP(6), appear to enhance the anticancer effect of conventional chemotherapy, control cancer metastases, and improve quality of life. Because it is abundantly present in regular diet, efficiently absorbed from the gastrointestinal tract, and safe, IP(6) + inositol holds great promise in our strategies for cancer prevention and therapy. There is clearly enough evidence to justify the initiation of full-scale clinical trials in humans.

    PMID: 17044765 [PubMed – indexed for MEDLINE]

  13. Sherlock,
    When you plot your data with Excel you want to pick a trendline that fits the data the best. Sometimes it is a straight line but other times it is a more complex curve fit. The way you tell is to look at the R squared value when you do the trendline. Keep trying different trendlines until you get the largest R squared value (R squared equal to 1 is a perfect fit). A good trendline fit has a prdictive effect. You can actually predict what a future value will be assuming that the trend continues.
    TAB

  14. Hi Franco,

    Thanks for writing about your protocal. I was just going to mention today as well that my husband is now taking Acetyl-L-Carnitine (ALCAR). This helps with energy, stamina, muscle building, chemo brain and neuropathy. Muscle builders take it, they give it to people with “wasting” issues, alzheimers and for PN. There are studies where when combined with essential fatty acids it increases the cancer fighting abilities of the EFA’s. (This is probably the action of the Budwig diet.) With it’s chemo-enhancing and neuroprotecting properties, it is now being tested in clinical trials with Velcade and Dex. (It seems it does not feed the MM like the other amino acid glutamine.) He is going to try Resveratrol with the ALCAR along with Budwig…

  15. Hi

    Interesting dietary note Buckwheat& Legumes, contain Inositol, this site tell you where inositol comes from and interesting it is formed by good bacteria in our gut. This goes back to stomache issues we have discussed in the past. If we have an inbalance of good and bad bacteria, it makes sense to me that the levels of Inositol are not going to be optimal. Another piece of the jigsaw i think!!

    http://www.ovarian-cysts-pcos.com/inositol.html#sec1

    Any thoughts anyone

    Sue

  16. Margaret,
    Would you please send me TAB’s case study because I am interested in knowing the specific adjustments that he has made in his program,ie, has he increased or decreased the mgms of IP6 and inositol or have they remained constant? Many thanks for your most informative site.
    Barry

  17. Targeted supplements can make a world of difference in positive outcomes at times even in seemingly hopeless cases.
    Please forward Tab’s entire report.
    Thank you!

  18. Well I’m few months late ,decided to catch up on some older blogs,

    Would love Tab’s case study please.

    My PP continues to rise ,but still doing the watch and wait .Seen monthly now.

    Thanks Margaret for all you do 🙂

    Sue in UK

  19. I was diagnosed with smoldering myeloma recently and I would really be interested in reading the entire report; would you please forward to me?

  20. Hi Bill, I tried to send TAB’s updated report to you, but the Mailer Daemon stopped it. Could you give me another e-mail address via my Contact form so I can try again? Thanks.

  21. Hi Margaret,
    Love your blog. It gives me hope. My husband is very young (early 40s) and has smoldering myeloma. I’m scared as hell. Keep the blog coming, you are doing fabulous! The humor helps too.

    Could you send me TAB’s report? I want to take him to a naturopathic doctor who I have been told has had success with MM patients. Thanks and God bless you!

  22. Margaret,
    I had left a comment in April 2009 requesting a copy of TAB’s case and haven’t received it yet. I know how busy you must be ,but if you have a chance,I would greatly appreciate a copy of his report. To say that your blog is uniquely helpful is an understatement of monumental proportions!
    Thanks in advance for your help.
    Barry

  23. For Barry (and Bill): sometimes for some unknown reason the Mailer Daemon won’t deliver my messages. I don’t have time to look through old “sent” messages to see if that was the case with you, but I strongly suspect it was. I am usually good about sending reports etc. I will try again right now.
    Update: okay, the Mailer Daemon is refusing to deliver this message to you. If you have another e-mail address, would you give it to me via my Contact form? Or leave a comment here using another e-mail address, whichever is easiest for you.

  24. I am not great with computers. I found this article which is very interesting as I was just told I had smoldering myeloma. People seem to be asking for a report. Can I get one also. Thanks

  25. Dear Margereth, today I got the diagnosis of smoldering myeloma. Your Blog helps to find into it. Would it be possible to forward TABs report to my adress, too. Thanks!!!

  26. Hi, Margaret, got onto your blog after asking questions on the Myloma UKforum, as part of a reply it was suggested. Reading through and sampling the contents has opened up a lot of new paths to explore. My problem was that being newly diagnosed with SMM, and having seen a consultant only three times, the only significant changes taking place is a slow drop in haemoglobin level from 12.3 to 12.1. The consultant said if this continues, she would put me on a 13week chemo. of CDT, which would zap things for at least 5 years! This rang alarm bells, as the little information I had seen all seems to advise against early treatment of SMM, and I’ve found nothing to definitely alter this view.Results of trials carried out do seem to be leaning towards early treatment in some cases, but these trials don’t seem very thorough or structured. So I intent to keep looking and asking questions.( do I find the “medical” side a bit hard to understand, mind). Jeff

  27. Hi Jeff,
    I’m glad that you listened to those alarm bells! Gee whiz. In my opinion, you are absolutely right to be cautious. Indeed!
    And I also agree with you about the SMM trials. Very very iffy. I have written a post on that topic (still in draft form, but I will try to finish editing it today…).
    Besides, there are things you can do to try to bring up your hemoglobin. I will contact you privately about that.
    Keep asking questions! 🙂

  28. Margaret,
    I have been recently told I have SSM would you please forward TAB’s report. Thanks for all the good information.

  29. Hello Margaret

    I’ve only just read this earlier entry re TAB’s protocol.
    Would it be possible to obtain his report please, at this late stage ?
    Best wishes
    Ann

  30. Hi Margaret,

    Your blog is both informative and encouraging. I was just diagnosed with SMM and would love to TAB’s report. I have a lot of learning to do and I hope this report and your blog will help me find the right routine to follow.

    Many Thanks,
    Jeff

  31. My dad was recently diagnosed with MM. Today we went for a second opinion..so happy! They said only SMM! That is what I thought! The 1st doc wanted to do a bone marrow transplant and we did not feel at peace with that. So glad we didn’t! I feel very hopeful now!
    Can you please send me TAB’s report. I would like to review and advise my dad of the supplements that you listed. Do you think taht’s okay despite any differences in the lab results?
    Thanks so much! Glad I found this blog!
    Becky

  32. Hi

    I have had smouldering myeloma for more than 3 years now with no treatment. I’d love a copy of the report. many thanks

    Cam

  33. Dear Margaret,
    My father has 67 years old and he was diagnosed with smoldering myeloma recently, but since 2007 he has a monoclonal gamapathy IgG/Kapa and with relation between light immunoglobulin kapa and lambda, 3.73.I would really be interested in reading the entire case report; would you please forward to me?
    I would also appreciatte a copy of the TAB’s protocol.

    Thank you!

  34. Just today,I was diagnosed with Smoldering Myeloma. I am being monitored, but eat so healthily and consciously. What causes this disease I wonder. Right now I am feeling a bit overwhelmed and scared. I would appreciate any information on alternative medicine in stopping the progression of this disease. Ellen

  35. This email thread started in April of 2009 with your article entitled “Watch ‘n wait or…act?”. What is Tab’s current condition? Has the supplements he’d be taking continue to have positive results? Please forward me his case report. Thank you.

  36. Cinnamon extract induces tumor cell death through inhibition of NF?B and AP1

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    Our study suggests that anti-tumor effect of cinnamon extracts is directly linked with enhanced pro-apoptotic activity and inhibition of NF?B and AP1 activities and their target genes in vitro and in vivo mouse melanoma model.

  37. Hi Margaret, On April 13,2011 I was diagnosed with asymtomatic MM. My Oncologist is great and she earned my respect immediately. We agreed that since I am on the border line of requiring treatment, the first of each month I am required to have a CBC,BMP, SPE and Free Light Chain test. Then based on my hemoglobin (as I have been anemic for a couple of years) which is up to 10.3 (had 2 units of blood on 2/25/2011) and what level of bone pain I am having dtermines which way we go. So, for 6/1/2011, I have made it through my first month of watch and wait. During the process of finding a diagnosis, My GP put me on 50,000 mg of Vitamin D and my count has gone from 13 to 25 in 2 months and I am also taking other supplements for my bones and cholestrol.
    Have found your web site very informative and ran across your blog about “Living With Smoldering Myeloma” from a patient you called TAB. Do you have and could you please forward TAB’s case report to me as I am interested in learning about IP6 and Inositol. Do you think that I could write to him and ask specific questions about the supplement?
    This will be helpful to me as I have an appointment with a nutritionist at the Seattle Cancer Care Alliance at the end of this month which I also will asken them about this type of supplement. Unfortunately, my metabolism quit working about 4 years ago due to non-cancerous thyroid tumors. Medication (after a 1 1/2 yrs) has corrected the non- functioning thyroid but my metabolism is still sputtering. I obviously had MM for a couple of years and didn’t know it which has compounded my problem with my metabolism.
    Hope I haven’t been to wordy but now that I know what is ahead of me, my anxiety level has greatly decreased. I am now able to concentrate and learn about the pro’s and con’s of MM. Many thanks for any and all assistance you can send my way.
    Rita Billson
    rmbill@comcast.net

  38. Hi Margaret!

    Having just been diagnosed with SMM, it has been good to read all of the above comments concerning SMM. Would you please forward TAB’s case report.

    Many Thanks,
    Joe

  39. Hi Margaret,

    All this time later, would you please forward a copy to me too. And, like the rest, I’d like to know how Tab is doing and hope and pry for the best for him–& everyone.

  40. If you could please forward any infomation on SMM and Tab’s case report I would be very greatful.I have been told that I have SMM and need to know everything that I can about this disease Thank you Fran Roswall

  41. Hello, my dad just got diagnosed with SMM and would like to see the full case report if you could please send it to me, thank you!

  42. I have been diagnosed with SMM. His story sounds so promising. Please send a copy of Tab’s case report. Thank You

  43. Dear Margaret,

    I was diagnosed with MGUS, Would you please forward TAB’s case report to me?

    Thank you for taking the time and help many people and for sharing with us about your cats too!

    Blessings,

    VLDH

  44. Would you please forward TAB’S case report. I was diagnosed with SM in Feb. 2012.

    Thank you,
    Frank B.

  45. Would love copies of TAB’s report and any other data as well. Is there a way to help with this as people are making so many requests for it? Thanks!

  46. I also was diagnosed with mgus in august of 11. Could you please send me a copy of the report before I head to mayo on the 17th of june. bonnie

  47. I have been diagnosed with SMM as of oct. 15,2012. I am taking a large quantity of supplements and have been for years. Stress is a large factor in the last several years and I have shown signs of disfiguring arthritis which led to a new Rheumatologist and new bloodwork–SMM. Thus I now have a new diagnosis and am in need of as much info about specific supplements that will keep me from having to go through the chemo route. My doctor is giving me the wait and see if if gets worse (bloodwork) every 3 months. Please send TABs report so that I can begin to plot changes (hopefully good ones). Thank you for your column and help.
    Sincerely, Deanna Neudecker

  48. I would also like TAB’s report. I was MGUS in 2010 and since 2011 with very few changes in bloodword and with no changes to very few, small lytic lesions in skull my Dr’s have categorized me as MM Stg I. I have harvested stem cells and had an induction round. I am debating further chemo. I am also IGA lambda.

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