Hi mickiet2002,
1. I am alive 4 years after diagnosis
2. I am high risk
3. No, I had an aggressive relapse in 2012 18 months after my auto transplant while on Velcade twice a month and curcumin 8 g with bioperine.
I have not ruled out curcumin's effect though. I’m still on 1-2 g of the above and 500-1000 mg of curcumin phytosome with Meriva per day along with Revlimid and steroids.
Åsa
Forums
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asaryden - Name: asaryden
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: August 2010
- Age at diagnosis: 48
Re: Interesting response to curcumin
Hi,
I was diagnosed in 2006, had a transplant in 2007 and again in 2015. I am experiencing an increased level in my light chains. I was wandering what dose amounts of curcumin and what your diet was to get your light chains down? Also, how is your myeloma currently doing?
Thanks,
lonnie
I was diagnosed in 2006, had a transplant in 2007 and again in 2015. I am experiencing an increased level in my light chains. I was wandering what dose amounts of curcumin and what your diet was to get your light chains down? Also, how is your myeloma currently doing?
Thanks,
lonnie
Re: Interesting response to curcumin
Hi.
I have seen many positive posts about curcumin, so I have tried it myself from approximately the start of August.
I take 2 X 500 mg with Bioperine in the morning and evening.
In the morning I also take fish oil, but I haven't taken oil in the evening. (Maybe that could improve the response?)
My values:
Date Kappa Lambda K/L Ratio
Apr 16, 2015 791.0 5.1 155
Jun 10, 2015 707.0 2.3 307
Aug 12, 2015 936.0 1.8 520
Oct 07, 2015 1300.0 1.8 722
Nov 03, 2015 1120.0 2.1 533
Note: All free light chain levels listed above (kappa and lambda) are in mg/l.
The kappa values have been close to 1200 mg/l the last months, but lambda values are still dropping, so previous ratio was close to 2000.
Is the curcumin working, then?
This is an impossible question to answer as I don't know how fast the development would have been without curcumin.
Anyway, I plan to keep using curcumin in the years to come.
I will very soon start my initial treatment – Velcade, thalidomide, and dex (VTD) and stem cell transplant – but I wonder if it is advisable to use curcumin while under treatment.
Any comments on that topic would be appreciated.
I have seen many positive posts about curcumin, so I have tried it myself from approximately the start of August.
I take 2 X 500 mg with Bioperine in the morning and evening.
In the morning I also take fish oil, but I haven't taken oil in the evening. (Maybe that could improve the response?)
My values:
Date Kappa Lambda K/L Ratio
Apr 16, 2015 791.0 5.1 155
Jun 10, 2015 707.0 2.3 307
Aug 12, 2015 936.0 1.8 520
Oct 07, 2015 1300.0 1.8 722
Nov 03, 2015 1120.0 2.1 533
Note: All free light chain levels listed above (kappa and lambda) are in mg/l.
The kappa values have been close to 1200 mg/l the last months, but lambda values are still dropping, so previous ratio was close to 2000.
Is the curcumin working, then?
This is an impossible question to answer as I don't know how fast the development would have been without curcumin.
Anyway, I plan to keep using curcumin in the years to come.
I will very soon start my initial treatment – Velcade, thalidomide, and dex (VTD) and stem cell transplant – but I wonder if it is advisable to use curcumin while under treatment.
Any comments on that topic would be appreciated.
-
JohnC - Name: JohnC
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 47
Re: Interesting response to curcumin
Hello JohnC:
Definitely speak with your doctor regarding use of curcumin while on initial induction. I recall a doctor describing a case where a patient was receiving Revlimid, Velcade, and dexamethasone (RVD) as induction therapy, which can have bad diarrhea as a side effect in some cases. Curcumin would potentially aggravate that. The doctor believed that he had to alter the induction regimen due to the diarrhea, and the patient was taking curcumin without the doctor's advice. Potentially, without the added curcumin, the induction regimen might have been tolerated. The moral of the story is to do it under the advice of your doctor, and some might not like it during initial induction (or during an autologous stem cell transplant).
That being said, after a lot of reading, I would like to throw my hat in the ring in favor of the use of curcumin, at an appropriate stage. Just speaking for myself (I am not the patient, my wife is), the literature shows it's an anti-inflammatory, and has positive impact on joints, on blood pressure, and on blood sugar, among other good benefits. If you are crossing into the 50's or so, and have been in reasonably good health, but are starting to see some of the normal issues that many others see, it looks like curcumin can't hurt, and might help. The idea for me is that it does seem to at least mildly promote good health. For a multiple myeloma patient it is important to retain fitness to the extent you can do so. If you are overall fitter, in the minimum, you would be better able to tolerate the various treatments, generally. My wife will speak to her doctor about working this in at an appropriate point, I will start taking it too.
Looking on the WebMD site for curcumin is sort of interesting. It focuses on many minor maladies (and some not so minor) that it believes that it has been shown that there is at least a minimal positive impact, most noticeably arthritis. It does in a high profile way recommend strongly against the use by a pregnant woman, as some of the effects of curcumin may put a strain on the pregnancy and lead to a miscarriage, that was surprising. I am not sure if that is just precautionary, or there is hard evidence to that effect.
As to positive impact on myeloma, it is being studied right now at MD Anderson. I do not think the evidence is strong at this stage, and I think it would be foolish to rely on supplements instead of the meds at the appropriate time. I think that it might eventually turn out to be mildly positive at certain stages, perhaps during a remission on maintenance (extending it) or in MGUS or smoldering stages to slow the advance. Curcumin, like dex, is an anti-inflammatory. The anti-inflammatory effect of dex is reported to be the reason that it works and is active against multiple myeloma, even as a single agent. I am not an expert on the detailed biology, but I gather dex works more directly on the white-cell producing components of the bone marrow, and curcumin has a different mode of anti-inflammatory action. The very best case I see for curcumin is that the doctors figure out when and where it might be applied to reduce or eliminate for a time, the need for dex, though I do not think we are there at this time. Good luck.
Definitely speak with your doctor regarding use of curcumin while on initial induction. I recall a doctor describing a case where a patient was receiving Revlimid, Velcade, and dexamethasone (RVD) as induction therapy, which can have bad diarrhea as a side effect in some cases. Curcumin would potentially aggravate that. The doctor believed that he had to alter the induction regimen due to the diarrhea, and the patient was taking curcumin without the doctor's advice. Potentially, without the added curcumin, the induction regimen might have been tolerated. The moral of the story is to do it under the advice of your doctor, and some might not like it during initial induction (or during an autologous stem cell transplant).
That being said, after a lot of reading, I would like to throw my hat in the ring in favor of the use of curcumin, at an appropriate stage. Just speaking for myself (I am not the patient, my wife is), the literature shows it's an anti-inflammatory, and has positive impact on joints, on blood pressure, and on blood sugar, among other good benefits. If you are crossing into the 50's or so, and have been in reasonably good health, but are starting to see some of the normal issues that many others see, it looks like curcumin can't hurt, and might help. The idea for me is that it does seem to at least mildly promote good health. For a multiple myeloma patient it is important to retain fitness to the extent you can do so. If you are overall fitter, in the minimum, you would be better able to tolerate the various treatments, generally. My wife will speak to her doctor about working this in at an appropriate point, I will start taking it too.
Looking on the WebMD site for curcumin is sort of interesting. It focuses on many minor maladies (and some not so minor) that it believes that it has been shown that there is at least a minimal positive impact, most noticeably arthritis. It does in a high profile way recommend strongly against the use by a pregnant woman, as some of the effects of curcumin may put a strain on the pregnancy and lead to a miscarriage, that was surprising. I am not sure if that is just precautionary, or there is hard evidence to that effect.
As to positive impact on myeloma, it is being studied right now at MD Anderson. I do not think the evidence is strong at this stage, and I think it would be foolish to rely on supplements instead of the meds at the appropriate time. I think that it might eventually turn out to be mildly positive at certain stages, perhaps during a remission on maintenance (extending it) or in MGUS or smoldering stages to slow the advance. Curcumin, like dex, is an anti-inflammatory. The anti-inflammatory effect of dex is reported to be the reason that it works and is active against multiple myeloma, even as a single agent. I am not an expert on the detailed biology, but I gather dex works more directly on the white-cell producing components of the bone marrow, and curcumin has a different mode of anti-inflammatory action. The very best case I see for curcumin is that the doctors figure out when and where it might be applied to reduce or eliminate for a time, the need for dex, though I do not think we are there at this time. Good luck.
Last edited by JPC on Wed Feb 10, 2016 10:04 am, edited 1 time in total.
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JPC - Name: JPC
Re: Interesting response to curcumin
Hi JPC.
Thanks for your comments, which, as always, shows knowledge and understanding of these matters.
John
Thanks for your comments, which, as always, shows knowledge and understanding of these matters.
John
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JohnC - Name: JohnC
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 47
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