Check out the results of the latest curcumin study on two smoldering myeloma patients.
In particular, look at the first few entries in Table 1 on % plasma cells, paraprotein levels and FLC ratios in Table 1 and draw your own conclusions. Yes, it is only two patients being profiled here, but encouraging nonetheless.
http://www.sciedu.ca/journal/index.php/jhm/article/view/1997/1355
Forums
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Latest curcumin study on smoldering myeloma patients
Thanks for the update, Multibilly.
I'm surprised you are so excited about this.
The authors have basically cherrypicked the patients in their study that showed the best "response." As best I can tell, they don't say whether any of the patients in the placebo arm of the original trial showed anything like this sort of "response."
There's a very detailed and thorough article about the Australian trial here at The Beacon. Here's the link:
https://myelomabeacon.org/news/2012/03/07/curcumin-free-light-chains-mgus-and-smoldering-multiple-myeloma/
One thing that you'll learn in the article is that 14 percent of the smoldering patients in the trial progressed to active myeloma within the short time frame of the trial. 14 percent!
And, of course, the authors of the study conveniently chose to drop those patients from their analysis.
The other thing worth pointing out about this article is that it's published in a journal which isn't even indexed by Pubmed, and Pubmed indexes basically every reasonably respected medical journal that publishes in English (and many other languages as well).
I'm surprised you are so excited about this.
The authors have basically cherrypicked the patients in their study that showed the best "response." As best I can tell, they don't say whether any of the patients in the placebo arm of the original trial showed anything like this sort of "response."
There's a very detailed and thorough article about the Australian trial here at The Beacon. Here's the link:
https://myelomabeacon.org/news/2012/03/07/curcumin-free-light-chains-mgus-and-smoldering-multiple-myeloma/
One thing that you'll learn in the article is that 14 percent of the smoldering patients in the trial progressed to active myeloma within the short time frame of the trial. 14 percent!
And, of course, the authors of the study conveniently chose to drop those patients from their analysis.
The other thing worth pointing out about this article is that it's published in a journal which isn't even indexed by Pubmed, and Pubmed indexes basically every reasonably respected medical journal that publishes in English (and many other languages as well).
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JimNY
Re: Latest curcumin study on smoldering myeloma patients
Yes, I had read this earlier thread as well, thanks.
Some folks on that thread had thrown this earlier study under the bus, while others had jumped to defend it, including participants from the study. As a SMM patient, I take been in contact with others that have reduced their markers over the years through the use of curcumin and I am now a "hopeful, cautious believer". I agree that as the results were presented with only two patient histories, the results can only be interpreted to be anecdotal and I myself was wondering just where the data was regarding the other patients in the trial.
However, based on my own situation and conversations and others taking curcumin, I was heartened by seeing the data on two patients that clearly improved . To my knowledge, SMM patients just don't improve like this without some sort of deliberate intervention.
I will know over the coming months whether my recently-started supplement regiment is having a positive effect or not (I get tested every two months and I am plotting my results). Based on my last three test results, my markers are worsening over time, but not dramatically. I will be the first to admit that using curcumin just may end up being a waste of money and I may be writing about my own experiences with Dex in a year. But I am going into this with optimism and encouragement from other SMM sufferers that have seen positive results with its usage.
BTW, the earlier study was picked up by the American Journal of Hematology
http://onlinelibrary.wiley.com/doi/10.1002/ajh.23159/abstract
Cheers.
Some folks on that thread had thrown this earlier study under the bus, while others had jumped to defend it, including participants from the study. As a SMM patient, I take been in contact with others that have reduced their markers over the years through the use of curcumin and I am now a "hopeful, cautious believer". I agree that as the results were presented with only two patient histories, the results can only be interpreted to be anecdotal and I myself was wondering just where the data was regarding the other patients in the trial.
However, based on my own situation and conversations and others taking curcumin, I was heartened by seeing the data on two patients that clearly improved . To my knowledge, SMM patients just don't improve like this without some sort of deliberate intervention.
I will know over the coming months whether my recently-started supplement regiment is having a positive effect or not (I get tested every two months and I am plotting my results). Based on my last three test results, my markers are worsening over time, but not dramatically. I will be the first to admit that using curcumin just may end up being a waste of money and I may be writing about my own experiences with Dex in a year. But I am going into this with optimism and encouragement from other SMM sufferers that have seen positive results with its usage.
BTW, the earlier study was picked up by the American Journal of Hematology
http://onlinelibrary.wiley.com/doi/10.1002/ajh.23159/abstract
Cheers.
Last edited by Multibilly on Tue Feb 26, 2013 10:13 pm, edited 1 time in total.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Latest curcumin study on smoldering myeloma patients
"To my knowledge, SMM patients just don't improve like this without some sort of deliberate intervention."
Perhaps - but it may not be because of curcumin. For example, at the bottom of this message is the summary of a recent journal article, showing the benefits of EXERCISE on SMM, resulting in a 30 percent reduction in IgG levels and a halving of plasma cell levels. Exercise I can believe.
So maybe the two responders in the curcumin study simply EXERCISED. Who knows? The point is that this curcumin study lacks any controls, so whether the observed effects on protein and plasma cell levels derive from curcumin, exercise, or something else is simply unknown.
That said, I see no harm in taking curcumin: it may have benefits and therefore be useful to an SMM patient even to a multiple myeloma patient as part of a maintenance program. But again - who knows for sure?
Anecdotally, I smoldered for about a year, and took curcumin during part of that time. My M spike actually dropped by 15 percent (although I think it was simply statistical variation) during that period. But my Hb dropped lower and lower - and that is what led me to begin treatment.
Med Sci Sports Exerc. 2013 Jan 30. [Epub ahead of print]
Exercise is Medicine: Case Report of a Woman with Smoldering Multiple Myeloma.
Boullosa DA, Abreu L, Tonello L, Hofmann P, Leicht AS.
Source1Post-Graduate Program in Physical Education, Catholic University of Brasilia, Brazil 2Lavadores, Vigo, Spain 3Institute of Sport Science, University of Graz, Austria 4Institute of Sport & Exercise Science, James Cook University, Australia.
Abstract
PURPOSE: To evaluate the influence of a supervised training program on: changes in serum monoclonal protein level (i.e. IgG), percentage of bone marrow plasma cells (BMPCs), fitness performance, and cardiac autonomic control (i.e. heart rate [HR] variability [HRV] and HR complexity [HRC]) in a female diagnosed with smoldering multiple myeloma (SMM).
METHODS: A middle-aged female patient with smoldering multiple myeloma and former elite athlete was monitored for four years while participating in a supervised multimodal training regime designed for the development of various physical capacities. The patient had the possibility of self-selection of daily training volume. Changes in fitness components, IgG levels, and BMPCs were evaluated throughout a 4-year monitoring period (i.e. follow-up). HRV was examined via 24 hr HR recordings during a six week period at the second and the third year of the follow-up.
RESULTS: Exercise performance in all fitness components was improved while IgG levels and BMPCs decreased (from 2.53 g·dL to 1.84 g·dL and from 20% to 10%, respectively). Time- and frequency domain HRV parameters exhibited significant increases (18-29%) with HRC remaining unchanged.
CONCLUSIONS: The current case report results indicated that a multimodal training program designed for the development of various physical capacities improved exercise performance, hematological function as well as cardiac autonomic control that may improve long-term prognosis for SMM. Examination of similar exercise training regimes for hematological and other cancer populations may assist in the development of simple non-pharmacological treatments for improved prognosis
Perhaps - but it may not be because of curcumin. For example, at the bottom of this message is the summary of a recent journal article, showing the benefits of EXERCISE on SMM, resulting in a 30 percent reduction in IgG levels and a halving of plasma cell levels. Exercise I can believe.
So maybe the two responders in the curcumin study simply EXERCISED. Who knows? The point is that this curcumin study lacks any controls, so whether the observed effects on protein and plasma cell levels derive from curcumin, exercise, or something else is simply unknown.
That said, I see no harm in taking curcumin: it may have benefits and therefore be useful to an SMM patient even to a multiple myeloma patient as part of a maintenance program. But again - who knows for sure?
Anecdotally, I smoldered for about a year, and took curcumin during part of that time. My M spike actually dropped by 15 percent (although I think it was simply statistical variation) during that period. But my Hb dropped lower and lower - and that is what led me to begin treatment.
Med Sci Sports Exerc. 2013 Jan 30. [Epub ahead of print]
Exercise is Medicine: Case Report of a Woman with Smoldering Multiple Myeloma.
Boullosa DA, Abreu L, Tonello L, Hofmann P, Leicht AS.
Source1Post-Graduate Program in Physical Education, Catholic University of Brasilia, Brazil 2Lavadores, Vigo, Spain 3Institute of Sport Science, University of Graz, Austria 4Institute of Sport & Exercise Science, James Cook University, Australia.
Abstract
PURPOSE: To evaluate the influence of a supervised training program on: changes in serum monoclonal protein level (i.e. IgG), percentage of bone marrow plasma cells (BMPCs), fitness performance, and cardiac autonomic control (i.e. heart rate [HR] variability [HRV] and HR complexity [HRC]) in a female diagnosed with smoldering multiple myeloma (SMM).
METHODS: A middle-aged female patient with smoldering multiple myeloma and former elite athlete was monitored for four years while participating in a supervised multimodal training regime designed for the development of various physical capacities. The patient had the possibility of self-selection of daily training volume. Changes in fitness components, IgG levels, and BMPCs were evaluated throughout a 4-year monitoring period (i.e. follow-up). HRV was examined via 24 hr HR recordings during a six week period at the second and the third year of the follow-up.
RESULTS: Exercise performance in all fitness components was improved while IgG levels and BMPCs decreased (from 2.53 g·dL to 1.84 g·dL and from 20% to 10%, respectively). Time- and frequency domain HRV parameters exhibited significant increases (18-29%) with HRC remaining unchanged.
CONCLUSIONS: The current case report results indicated that a multimodal training program designed for the development of various physical capacities improved exercise performance, hematological function as well as cardiac autonomic control that may improve long-term prognosis for SMM. Examination of similar exercise training regimes for hematological and other cancer populations may assist in the development of simple non-pharmacological treatments for improved prognosis
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TruthSayer
Re: Latest curcumin study on smoldering myeloma patients
Hi Multibilly,
Given that some smoldering patients can go years, even decades, without progressing to active myeloma, it would not surprise me if some smoldering patients have numbers that bounce around a lot.
That's the whole point of placebo-controlled trials. They put the results in the actively treated arm into perspective.
And the exact opposite of that is cherry picking the best responses from the actively treated arm of a trial and then trumpeting them.
I don't have a problem with smoldering myeloma patients taking curcumin to try to delay progression to active myeloma. It seems a reasonable thing to do.
I do have a problem with people who make dramatic claims about a treatment that hasn't even come close to proving its mettle in a substantial clinical trial. Those who are doing that are, in my opinion, just preying on the desperate hopes and fears of myeloma patients who deserve something a lot more intellectually honest.
Given that some smoldering patients can go years, even decades, without progressing to active myeloma, it would not surprise me if some smoldering patients have numbers that bounce around a lot.
That's the whole point of placebo-controlled trials. They put the results in the actively treated arm into perspective.
And the exact opposite of that is cherry picking the best responses from the actively treated arm of a trial and then trumpeting them.
I don't have a problem with smoldering myeloma patients taking curcumin to try to delay progression to active myeloma. It seems a reasonable thing to do.
I do have a problem with people who make dramatic claims about a treatment that hasn't even come close to proving its mettle in a substantial clinical trial. Those who are doing that are, in my opinion, just preying on the desperate hopes and fears of myeloma patients who deserve something a lot more intellectually honest.
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JimNY
Re: Latest curcumin study on smoldering myeloma patients
I am intrigued by the exercise study. I am an avid cyclist logging in over 4000 miles a year since I was diagnosed with Stage 2 multiple myeloma some 4 years ago. I have always believed that my exercise has helped in keeping me in a remissive state. This is the first time I have seen an article that appears to support my personal suppositions.
Ron
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Latest curcumin study on smoldering myeloma patients
I have always tried to exercise daily since it is not only a life long habit, but it is good for the blood circulation. If you can get your blood cells working to remove toxins and fight infections and possibly even destroy cancer cells, then that should keep you in your healthiest possible state. I would like to be able to say that I was an athlete, but am more of just a garden variety walker!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Latest curcumin study on smoldering myeloma patients
I have been using curcumin for approximately 5 months. I am either smoldering or MGUS. Anyway, my free light chain numbers are going down, very slowly, but any down is better than up. My kappa number upon diagnosis was really high, 139, now at 130. My ratio has really improved, from about 22 to now 15.
After reading the post about Chinese skullcap, I searched high and low. Good luck finding any, as all manufacturers have removed it from the market. However, since taking it for the last 4 months, M protein from 1.1 to 0.9, originally it was 0.8 at diagnosis in Aug 2012, and was headed up ... quick.
These herbs are not stressing my very delicate liver. I am not full blown multiple myeloma. But these herbs are helping my numbers.
My next decision: to start Zometa or not.
My update....
After reading the post about Chinese skullcap, I searched high and low. Good luck finding any, as all manufacturers have removed it from the market. However, since taking it for the last 4 months, M protein from 1.1 to 0.9, originally it was 0.8 at diagnosis in Aug 2012, and was headed up ... quick.
These herbs are not stressing my very delicate liver. I am not full blown multiple myeloma. But these herbs are helping my numbers.
My next decision: to start Zometa or not.
My update....
Re: Latest curcumin study on smoldering myeloma patients
BobRobert wrote:
"I have been using curcumin for approximately 5 months. I am either smoldering or MGUS. Anyway, my free light chain numbers are going down, very slowly, but any down is better than up. My kappa number upon diagnosis was really high, 139, now at 130. My ratio has really improved, from about 22 to now 15."
Thanks BobRobert. Based on other's results that I have seen, this slow trend downward seems to be the norm with those taking curcumin and have positive results, which is fine by me. What dose and type of curcumin are you taking? I've only been doing it for a couple of weeks and I just bumped up to 6g/day (3g in morn, 3g in eve) using Doctor's Best C3 Complex with Bioperine. I will get tested again in mid April.
While I have been exercising quite a bit more since being diagnosed, it doesn't seem to have kept my numbers from climbing (although I suppose they could have accelerated more than they are without exercise), but I do feel good and have to believe it will help me in the long run in just having strength and stamina to fight this disease, if nothing else. So I will continue to exercise.
"I have been using curcumin for approximately 5 months. I am either smoldering or MGUS. Anyway, my free light chain numbers are going down, very slowly, but any down is better than up. My kappa number upon diagnosis was really high, 139, now at 130. My ratio has really improved, from about 22 to now 15."
Thanks BobRobert. Based on other's results that I have seen, this slow trend downward seems to be the norm with those taking curcumin and have positive results, which is fine by me. What dose and type of curcumin are you taking? I've only been doing it for a couple of weeks and I just bumped up to 6g/day (3g in morn, 3g in eve) using Doctor's Best C3 Complex with Bioperine. I will get tested again in mid April.
While I have been exercising quite a bit more since being diagnosed, it doesn't seem to have kept my numbers from climbing (although I suppose they could have accelerated more than they are without exercise), but I do feel good and have to believe it will help me in the long run in just having strength and stamina to fight this disease, if nothing else. So I will continue to exercise.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Latest curcumin study on smoldering myeloma patients
Multi: I aimed for 8 gr a day. Rarely made it. But maintained at least 6 gr a day. I have used several varieties. Actually I liked the VitaCost Turmeric Extract with bioperine. Have also used Doctors Best that you mention and have tried Physicians Naturals enteric coated with bioperine and bromelian.
There is no way for the lay person to know which is best, however the enteric coated Physicians Naturals doesn't smell like turmeric. So I would suggest taking one VitaCost and one Doctors Best, at least 3x per day ( not a physician, so that's not professional advice, just what I did) and I have tried taking fish oil with them, but don't really like it (the fish oil).
I have seen various brands say theirs is what was used in clinical trials, but who really knows. Maybe someone here? I actually like the smell of the VitaCost and the taste in my throat as it goes down.
I have been an exercise buff for years and years. I am just about to turn 57. I also have extreme allergies, and drug sensitivities. Was knocked in the dirt by some virus last summer prompting my referral to a hematologist, finding the M protein, and lots more needle sticks after that. The genetic tests I have had were negative for deletions and translocations (bone marrow).
There is no way for the lay person to know which is best, however the enteric coated Physicians Naturals doesn't smell like turmeric. So I would suggest taking one VitaCost and one Doctors Best, at least 3x per day ( not a physician, so that's not professional advice, just what I did) and I have tried taking fish oil with them, but don't really like it (the fish oil).
I have seen various brands say theirs is what was used in clinical trials, but who really knows. Maybe someone here? I actually like the smell of the VitaCost and the taste in my throat as it goes down.
I have been an exercise buff for years and years. I am just about to turn 57. I also have extreme allergies, and drug sensitivities. Was knocked in the dirt by some virus last summer prompting my referral to a hematologist, finding the M protein, and lots more needle sticks after that. The genetic tests I have had were negative for deletions and translocations (bone marrow).
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