Even though my techies haven’t yet figured out (or had enough time to figure out) how to upload TAB’s gorgeous graphs, I decided not to delay publishing his report–the text-only part, I mean. What follows, therefore, 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…
I’ll publish TAB’s 2012 (14-year) update as soon as possible…I have a couple of things to sort out first. Just to keep you on the edge of your seat… 😉
Well, I hope that Stefano will come up with a brilliant “graph-related” idea today. Otherwise, I’ll resort to Plan B, which was suggested to me last week by TAB himself. So, no worries! One way or another, you’ll get to see those graphs. Okay, without further ado, here it is! THE TEXT! 🙂
Smoldering Myeloma – An 11 Year Case Study Using Supplements. Updated and revised August 6, 2009, by TAB.
Are supplements an alternative to conventional treatment of smoldering myeloma?
Based on the International Myeloma Working Group’s definition, smoldering myeloma is defined as:
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.
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:
M Protein > 3000mg/dl
Bone Marrow>10% plasma cells
No related organ or tissue impairment
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.
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.
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.
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.
· 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