SMOLDERING FOR 18 YEARS: TAB’s story…

MOST RECENT POST FIRST. PLEASE SCROLL DOWN THE PAGE FOR OLDER ONES

March 2016: I just changed the title of this post, “smoldering for 14 years” to “smoldering for 18 years,” based on TAB’s most recent comment. Congratulations, TAB! I am now in my 11th year since my SMM diagnosis (17 years if you add my MGUS years), and it feels soooo good, doesn’t it? Anyway, thanks for the update…You are such an inspiration for all of us! 🙂

August 17 2012 post. Mainly for reasons of space, I decided to post only one of TAB’s graphs. I chose this particular one because it shows his data in reference to the International Staging System, or ISS (seehttp://goo.gl/ycu7K for more info on this myeloma staging system, courtesy of the IMF). As you can see, TAB’s ISS trend is a downward one, which is excellent, of course!

And now let’s finally have a quick look at what I’ve been calling Plan B. In a nutshell, back when I was having all that technical trouble (all resolved now, btw…in fact, I have just been awarded the coveted title of “Summer 2012 Fastest Converter Wizardess” ;) ), TAB informed me that he set up a public e-mail address that you can use to get in touch with him directly. Purrrrrfect. So, if you have any questions for TAB or would like to see more of his graphs etc. etc. etc., all you have to do is write to him here: tabbat841@hotmail.com

A few more comments:

  1. Looking at TAB’s graph, the Stage I limit is 1,000, where the blue line is.
  2. B2M means Beta-2 microglobulin; Alb = albumin. These are the two markers used in the ISS.
  3. I had to edit the graph a bit so that it would fit better on the screen, which means that it looks a bit more squished up compared to the original. But if you click on the graph, it should appear a bit LARGER in a separate window. Then just click on the “back” arrow to return to my blog.
  4. Don’t miss the fact that in 2002-3, TAB slipped into Stage II (highlighted in yellow). Then he went back to Stage I, where he has remained. 

Okay, I think that’s about it!!! Except, of course, that I’d like to thank TAB for his kindness and his patience! :)

August 15 2012 post. Here is TAB’s summer 2012 update. Before reading it, though, please take note of a KEY sentence: These supplements may or may not work for others as they apparently do for me.That is soooo true. It’s the same with curcumin, which may not work for some folks yet works splendidly for others (like yours truly :) ).

Another thing to keep in mind is that TAB has IgA lambda myeloma. Does his protocol therefore work best for IgA lambda? Who knows? Until we try (and I’m planning to test his protocol at some point), we won’t know…

Current age 70. Updated 7/25/2012- Diagnosed 8/6/1998 with Multiple Myeloma IgA Lambda-

This is an update of my report “Smoldering Myeloma – 11 Year Case Study Using Supplements Revised Aug 6, 2009.”

Comments: 7/25/2012:

  1. I have been smoldering for 14 years.
  2. I remain asymptomatic with no C. R. A. B. symptoms. That is: No elevated Calcium, No Renal failure, No Anemia and No Bone Lesions.
  3. The latest IgA value of 3136 mg/dl is the lowest it has ever been since diagnosis! See IgA Graph. M Spike is 3060 mg/dl.
  4. I am pleased with the improvement in the Lambda light chain data and the Kappa/Lambda ratio since both are approaching their normal range.
  5. I remain on my daily supplements of Inositol, IP6, Selenium, Vitamin C and D, Trans Resveratrol, Curcumin plus a multivitamin. I take one half of the IP6 /Inositol first thing in the morning on an empty stomach and the remaining half before bed. I take the Curcumin all at once usually with a meal that contains some fat or oil. The other supplements I spread out over the day. Supplement cost is about $1.37 per day depending on current prices.
  6. My current supplement protocol is shown on the Supplement worksheet (see below). See the notes on the IgA worksheet for the changes that I made over the years in an attempt to refine the supplement protocol. I feel that the trend lines in the attached graphs show a definite correlation of improved markers with the taking of supplements. The MM has by no means been eradicated, but I have enjoyed a very homeostatic control of the markers with no symptoms thus far. These supplements may or may not work for others as they apparently do for me. I have been lucky to have had the time to see results which in some cases took years to manifest. I firmly believe that the supplements are responsible for my stable condition.
  7. I eat a typical American, somewhat well balanced diet, but nothing special. I enjoy golfing (walking) in the summer and have a Body Mass Index at the upper end of normal.
  8. No problems to report.
  9. According to the NEJM paper by Kyle et al (Ref #6 in the Case study report), the probability of progression from MGUS to Myeloma is a constant 1% per year. For smoldering myeloma, the risk of progression is greater in the early years but decreases with time. Examination of the graph of Figure 2 shows that after 14 years the slope of the smoldering curve is identical to the slope of the MGUS curve. I interpret this to mean that my risk of progression is now 1 % per year, the same as for a MGUS patient! 
  10. I am providing this information in two different formats. One is in pdf format for easy reading and printing. The other is in Microsoft Excel spreadsheet format. If you would like to use my Excel spreadsheets to help you plot your data (which I highly recommend plotting ones own data) you can just replace my dates and values with your dates and values and the graphs should (hopefully) automatically plot for you. When I visit my doctor I show him the graphs which helps him to visualize any progress or lack thereof rather than him scanning through several pages of numbers which makes looking for trends very difficult. 

August 13 2012 post. What follows is a copy and paste from TAB’s 2009 pdf update. Speaking of 2009, I’d like to point out that TAB wrote this report in 2009, which means that he has been smoldering for 14 years, as of today. FOURTEEN YEARS! Another thing: whenever you read “see Figure this” or “see Figure that,” and so on, please remember that there are no figures…

Smoldering Myeloma – An 11 Year Case Study Using Supplements. Updated and revised August 6, 2009, by TAB.
 
Question:
Are supplements an alternative to conventional treatment of smoldering myeloma?
 
Background:
Based on the International Myeloma Working Group’s definition, smoldering myeloma is defined as:
 
  • M Protein > 3000mg/dl
  • Bone Marrow>10% plasma cells
  • Asymptomatic
  • No related organ or tissue impairment
Standard recommendations for treatment for smoldering myeloma include observation for progression of disease. Some authorities have proposed supplements such as IP6 and Inositol, Inositol + Cal Mag IP6, selenium and antioxidants may prevent cancer or slow down cancer progression. I have collected data over the past 11 years and present myself as a case study to argue these supplements can slow down or reverse the progression of smoldering myeloma.
 
Case Study:
I am a 67 year old white male 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.
 
It was suggested by an oncologist at the Cleveland Clinic to proceed in a study utilizing high dose chemotherapy followed by an autologous stem cell transplant to reverse disease progression. I declined this and decided on no treatment. My oncologist and I monitored the disease on a monthly basis in the beginning and later extended monitoring to twice a year since I remained asymptomatic. Pertinent blood and urine tests were recorded on an Excel spreadsheet and the results plotted. I make extensive use of trend line analysis to attempt to extract the true trends out of the normal variations in lab data. 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
Please see Figure 1 for changes that I made in the amounts of the supplements over the years. Please note that in a recent correspondence with Dr. S, he recommended a 1:1 Molar ratio of IP6 to Inositol and an amount that works out to be 4.8 grams of IP6 and 1.32 grams of Inositol per day.
 
Results:
These supplements are very well tolerated with absolutely no observable side effects. Inositol is found in baby formula. Within one year of starting the supplements the trend lines started changing slope. In Figure 1, the IgA values that were increasing after diagnosis, leveled off after the first 5 years and have been decreasing during the latest 5 years. Figure 2 shows the 24 hour total urine protein increasing, leveling off and decreasing in a like manner. Figure 3 shows Beta 2 microglobulin increasing but leveling off after 10 years. Figure 4 shows hematocrit decreasing, leveling off and then increasing. Figure 5 is a plot of the ratio of Beta 2 microglobulin to albumin.
 
This is a way of plotting the two factors (beta 2 and albumin) that form the basis of the International Myeloma Foundation’s ISS (International Staging System). This data also shows a leveling off trend. In all of these graphs it is best to look at the solid trend line because it filters out the scatter in the data. Excel allows the user to pick the best trend line equation to best fit the data (you want the R squared value to be as close to 1.0 as possible.). Table 1 lists a record of several tests such as bone marrow biopsy, protein and urine electrophoresis and immunofixation, skeletal X-rays and others.
 
Discussion:
These trends are encouraging in light of the statistics dealing with the probability of progression from smoldering myeloma to active myeloma as published in the New England Journal of Medicine June 21, 20076. This report states that the probability of progression is 10% per year for the first 5 years, 3% per year for the next 5 years and about 1% per year thereafter. Thus in my case after 11 years since my diagnosis of smoldering myeloma, the probability is 67% that progression to overt myeloma would have happened by now. I apparently am one of the 33% that have not progressed after 11 years. The data in Figures 1 – 5 seems to indicate that the disease is not progressing and it may actually be receding.
 
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. At about $1 a day cost and no side effects, the benefit to cost ratio is quite high. In the Kyle study6, why do some patients not progress after 10, 15, 20 or 25 years? Were they taking supplements? Did they make life style changes? What other factors might contribute to their better outcome?
 
Many myeloma patients that discuss their care on the International Myeloma Foundation’s MMA mailing list, have had various degrees of success experimenting with alternate supplementation plans while waiting for mainstream medicine to do their clinical trials. I think that it is safe to say that more people are taking self directed supplements than most doctors are aware. Some with more serious myeloma do it out of necessity because they don’t have time to wait.
 
I would encourage patients to track their data using an analysis package that includes trend line analysis. The trend lines allow the patient and his/her doctor to make statistically significant decisions based on trends rather than on a few data points. The spreadsheet allows statistics like standard deviations to be easily calculated. I have read where many patients ask questions like “is this data point really a significant increase or is it just lab variation”? If the data point deviates from the trend line by one or two standard deviations, it is probably not statistically significant. If it changes by three or more standard deviations, then it is probably significant. 
 
Another area of discussion is the issue of myeloma stem cells. Should the smoldering myeloma patient consider adding a supplement to specifically target myeloma stem cells? Possibly so, as long as it is relatively safe. I am presently researching cyclopamine tartarate and zerumbone. I might consider taking such a supplement in very small quantities and track the results with the graphical trend line analysis.
 
Conclusion and Recommendation:
IP6 Inositol 1.5 g/day, Inositol 2 g/day, Selenium 200 mcg/day, Vitamin C 500 mg/day, Vitamin D 1000 iu/day and a multivitamin/multimineral per day 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. Whether supplementing or not, plotting critical lab numbers and using trend lines to monitor your progress is highly recommended.
 
References
1. Kyle, Robert A. MD, et al. Criteria for the classification of monoclonal gammopathies, multiple myeloma and related disorders: a report of the International Myeloma Working Group. British Journal of Haematology, 2003, 121, 749-757.
2. Shamsuddin, AbulKalam M., MD, PhD. IP6 Nature’s Revolutionary Cancer-Fighter. Paperback edition. Kensington Books, 1998.
3. Vanderlinden, Kim, ND, DTCM, Vucenik, Ivana, PhD. Too Good to be True – Inositol + Cal Mag IP6. Bearing Marketing Communications Ltd., Sept. 2004.
4. Passwater, Richard A., PhD. Selenium Against Cancer and Aids. Keats Publishing Inc., 1996.
5. Durie, Brian G. M., MD. International Myeloma Foundation Patient Handbook, 2008/2009 edition.
6. Kyle et al. Clinical Course and Prognosis of Smoldering (Asymptomatic) Multiple Myeloma. The New England Journal of Medicine. June 21, 2007; 356(25): 2582-2590.
 
For my older posts on TAB, see also http://margaret.healthblogs.org/life-with-myeloma/discovery-of-curcumin/my-curcumin-protocol/blog-readers-personal-stories/smoldering-for-11-years/

20 Comments

  1. TAB’s update 8/28/2013.
    I have now been smoldering for 15 years. IgA is the lowest ever in 15 years. Still feeling fine with no symptoms. I am continuing with my supplements. If anyone wants a copy of my data and graphs, they are available at tabbat841@hotmail.com.
    TAB

  2. Hi I was diagnosied with smouldering myeloma in november this year I am 52 years old .my bone marrow biopsy showed 25% plasma cells I have no other symptoms ( skeletal survey fine ) apart from the fact that I had two realy bad infections over winter My Haematologists talk about chemo and stem cell transplant but we both decided to wait .So I took the opportunity to start my own therapy .I take supplements every morning eat very well and take good care of myself .I am also having 50g of vitamin c intravenous twice a week for 6 weeks I am halfway through at this stage, Im feeling great but havn’t had any results yet .Is there anyone else out there that is having this therapy if so how is it going for you
    Cheers Corrina New Zealand

  3. TAB’s Update as of 8/12/2014
    I just turned 73 and I am doing fine. I feel great and I am sticking to my supplement protocol. I am continuing to plot graphs on Excel of my key markers. The trends continue to be either stable or improving as time goes on. I have been smoldering (IgA Lambda) for about 16 years. No symptoms thus far. If anyone is interested in getting a copy of my latest graphs they can contact me at tabbat841@hotmail.com
    TAB

  4. My latest updated graphs (2/3/2015) and a list of my supplements are available if anyone would like a copy. E-mail me at tabbat841@hotmail.com
    I am doing just fine so far. Smoldering for 16 1/2 years. No treatment thus far, just supplements.
    TAB

  5. I recently discovered this website and have really enjoyed it. I have been smoldering for almost 4 years.(discovered accidentally thru weakened immune system issues.) I am really interested in hearing of what supplements totally you are taking and what diet you have adapted. I have definitely cleaned up diet the last 2 months of discovering all this and now ready to start some kind of supplments to hopefully help. I also am IGA, 4,14. Numbers have been steadily creeping closer to SCT. No treatment yet. I am kinda a computer illiterate but still learning. When I tried to email you on your Hotmail account it would not work. Hopefully, this gets thru.

  6. congrats Tab on your continued success! Can you tell me if you have any abnormal chromosomes? I also would like to know your protocol.
    Thanks
    Susan

  7. TAB’s Latest Update
    I have now been smoldering for 17 years. No CRAB symptoms and I remain asymptomatic. I remain on my supplements. My IgA and M spike have been on a fairly linear decrease for the past 10 years. I firmly believe that the supplements have contributed to the observed regression. In my opinion I have moved from myeloma to MGUS. I continue to graph all of my markers. My latest graphs and list of supplements are available to anyone who would like a copy by E-mailing me at tabbat841@hotmail.com.
    TAB

  8. I have psoriatic arthritis which carries a lot of inflamation also hve colon and digestive problems and lots of other inflamatory things. I was wanting to start taking curcumin but do not know what one is best and works well for inflamation. I have gotten confused on all the different ones listed. I am 73 years old and needto take a good one that is not real expensive. Would you send me a list of what you take vitamins included. I know we dont have the same disease but still i would appreciate your information.

  9. Any new post by TAB ? How is he doing?
    Me, MM for 8 years smoldering for 10 years. Alternatively only!!
    David H.

  10. TAB’s Latest Update
    I have now been smoldering for almost 18 years. No CRAB symptoms and I remain asymptomatic. I remain on my supplements. My IgA and M spike have been on a fairly linear decrease for the past 10 years. I firmly believe that the supplements have contributed to the observed regression. In my opinion I have moved from myeloma to MGUS. During my last 6 month checkup my doctor said I am the longest smoldering myeloma patient he has ever seen. I continue to graph all of my markers. My latest graphs and list of supplements are available to anyone who would like a copy by E-mailing me at tabbat841@hotmail.com. Thanks to the many fellow MM’ers who have requested copies of my data. I wish you well. Also thanks to Margaret for sharing my story with her blog readers.
    TAB

    1. Hi there-
      Thank you so much for your post. I am also SMM. Have been for 6+ years and hope for many more. Get my blood work q3 months and recently sought a Second opinion at a Multiple Myeloma at a large facility in LA. I’m curious, what supplements have you been on? I also, have hx of Breast CA 2004. Status post lumpectomy with Chemo and Radiation. Being a nurse in healthcare, I do pursue care however, it’s also certain that I would like to NEVER have Cancer again.
      Sincerely,
      Gwyn Merz

  11. TAB’s Latest Update (8/2016)
    I am doing well, feeling fine and playing a lot of golf at age 75. Still smoldering for 18 years. No CRAB symptoms. My latest 6 month tests show my IgA and M spike are still on a linear decline as they have been for the last 11 years. Also serum free lambda light chains are on a linear decline for the past 6 years. I am still on my supplements and have added Ashwagandha which seems to be helping the trends. As in the past my reports are available at tabbat841@hotmail.com . If you have requested copies of my results last time things are about the same this time. Thanks Margaret for your support.
    TAB

  12. Hi Tab,

    I just found your contact by chance while trying to find a way of an alternative cure for my dad.He is 66 years old and MM for 5 years.2 transplantation and after 1 year later of the second one,MM is back and getting Revlimid cure for 5 months.with lost of infections,his resu?ts are getting worse.his doctor told me that things are not going well for him anymore and expecting a life around 6 months for him 🙁
    It was so shaking to hear this as you can imagine.
    After my searchs I found out your cure way.Is it possible to help me and give me some advises?
    I would be so thankful.

    Regards,
    Orange

  13. TAB’s Latest Update (2/24/2017)
    I am doing well, feeling fine at age 75. Still smoldering for 18 years. No CRAB symptoms. I am still on my same supplement protocol. I added charts of my globulins pre and post supplements. Before supplements globulins were going up then after starting supplements my globulins have been going down. Quite a remarkable change in my opinion (check out these and other graphs in my reports). Call me a one man clinical trial if you wish but I have statistical evidence in the form of my graphs over 18 years that supplements can really work in some cases. As in the past my latest 6 month reports, plots and list of supplements are available at tabbat841@hotmail.com
    Thanks Margaret for your support.
    TAB

  14. TAB’s Latest Update (9/1/2017)
    I have been smoldering now for 19 years. I am feeling fine with no symptoms. I owe this (in my opinion) to my supplement routine which includes curcumin. My latest IgA immunoglobulin level is the lowest it has been in 19 years. As usual my graphs and supplement protocol are available at tabbat841@hotmail.com.
    Thanks to Margaret for mentioning me in her latest blog post.
    PS: I recently learned something very important from a fellow MM’er. It is very important to monitor your light chains. This person has been monitoring her light chains for years. A sudden significant increase in the light chain trend line triggered an important treatment decision that may have been missed or delayed.
    TAB

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