My oncologist actually suggested that I try curcumin when I complained of hand cramps a couple of months in a row. He said that several of his patients had tried 2 grams per day. I've been taking 1 gram per day and haven't had any cramps since about the 2nd week of taking it. Is it helping? I don't know, but the cramps are gone.
Nancy
Forums
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Curcumin
I learned about curcumin and its anti-myeloma properties shortly after I was diagnosed as Stage 1 myeloma in May 2007, when I was told I would need to start treatment within 12-18 months.
I began taking curcumin along with EGCG on a regular basis and took some other supplements on a more ad hoc basis.
On my latest visit, 4 years after diagnosis, I was told that I was an unusual patient. They would have expected my disease to have progressed by now, but I was in fact behaving as an MGUS patient. I get variously classified as SMM and MGUS in doctors' letters - I don't think they are sure which box to put me in (if you'll excuse the expression
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There may not be many clinical trials on these natural treatments, but there is plenty of scientific evidence to provide a rational basis to be your own clinical trial in the absence of any effective ‘conventional’ treatment at those early stages.
I began taking curcumin along with EGCG on a regular basis and took some other supplements on a more ad hoc basis.
On my latest visit, 4 years after diagnosis, I was told that I was an unusual patient. They would have expected my disease to have progressed by now, but I was in fact behaving as an MGUS patient. I get variously classified as SMM and MGUS in doctors' letters - I don't think they are sure which box to put me in (if you'll excuse the expression
.There may not be many clinical trials on these natural treatments, but there is plenty of scientific evidence to provide a rational basis to be your own clinical trial in the absence of any effective ‘conventional’ treatment at those early stages.
Re: Curcumin
Hi Nancy,
I'm a 68 years old, diagnosed in 2008. I also just had a SCT - September, 2010. I chose not to do Revlimid maintenance, but I've still have hand cramps. Particularly my thumbs and palms. Thanks for the curcumin suggestion. I think I'll try it. I'll let you know how it works.
Did your doc know the why of this cramping?
Julia
I'm a 68 years old, diagnosed in 2008. I also just had a SCT - September, 2010. I chose not to do Revlimid maintenance, but I've still have hand cramps. Particularly my thumbs and palms. Thanks for the curcumin suggestion. I think I'll try it. I'll let you know how it works.
Did your doc know the why of this cramping?
Julia
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Jubyanne - Name: Julia Munson
- Who do you know with myeloma?: myself, son's mother-in-law
- When were you/they diagnosed?: Spring 2008
- Age at diagnosis: 65
Re: Curcumin
As far as I have heard, cramping is often related to whether or not the body is getting and retaining enough potassium. Some people get cramps from drinking coffee, for example, because it can deplete the body's potassium levels.
Bananas are supposed to be good for maintaining potassium levels. There also are potassium supplements that you can get at just about any vitamin store or the vitamin section of stores like Wal-Mart. They definitely help me when I have cramping issues. They only thing to watch out with potassium that, if you take too much of it, it can mess with your heart. So you definitely want to stick within recommended guidelines.
Does anyone know if curcumin has potassium in it? If so, that might be why it helps with cramping.
Good luck!
Bananas are supposed to be good for maintaining potassium levels. There also are potassium supplements that you can get at just about any vitamin store or the vitamin section of stores like Wal-Mart. They definitely help me when I have cramping issues. They only thing to watch out with potassium that, if you take too much of it, it can mess with your heart. So you definitely want to stick within recommended guidelines.
Does anyone know if curcumin has potassium in it? If so, that might be why it helps with cramping.
Good luck!
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TerryH
Re: Curcumin
The cramping that I had had nothing to do with potassium or magnesium levels since those have always been within the normal range except for a short time post ASCT. I don't drink coffee. I eat a 1/2 banana daily along with other foods that are high in postassium. there are too many people who complain of severe muscle cramping, and I mean debilitating cramping that lasts for minutes at a time, and who are taking Revlimid for there not to be some connection.
The fact that some of the oncologists are beginning to hear our complaints is a step in the right direction. Now, we need some research into why this is happening and some reliable treatments for them.
Nancy
The fact that some of the oncologists are beginning to hear our complaints is a step in the right direction. Now, we need some research into why this is happening and some reliable treatments for them.
Nancy
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Curcumin
I wonder if the cramping might be a mild form of neuropathy. I sure got lots of cramping with neuropathy after Velcade.
Julia
Julia
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Jubyanne - Name: Julia Munson
- Who do you know with myeloma?: myself, son's mother-in-law
- When were you/they diagnosed?: Spring 2008
- Age at diagnosis: 65
Re: Curcumin
I'm sorry, Nancy, if my comments made it seem like I don't believe there to be an issue with cramping and Revlimid. That wasn't what I was implying. I was responding, in part, to what Jubyanne said about still having cramps even though she wasn't taking Revlimid. That suggested to me that perhaps there is a mineral imbalance at the root of her issues.
It actually is no secret that Revlimid can create cramping issues. In the official FDA prescribing information for Revlimid,
http://Revlimid.com/pdf/REVLIMID_PI.pdf
there is a list of side effects and how often they occurred in patients taking Revlimid and dexamethasone (Table 3). About a third of multiple myeloma patients who were on the Revlimid-dexamethasone treatment regimen reported issues with cramping. So oncologists shouldn't be surprised if they hear from their patients on Revlimid that they're experiencing cramps.
It actually is no secret that Revlimid can create cramping issues. In the official FDA prescribing information for Revlimid,
http://Revlimid.com/pdf/REVLIMID_PI.pdf
there is a list of side effects and how often they occurred in patients taking Revlimid and dexamethasone (Table 3). About a third of multiple myeloma patients who were on the Revlimid-dexamethasone treatment regimen reported issues with cramping. So oncologists shouldn't be surprised if they hear from their patients on Revlimid that they're experiencing cramps.
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TerryH
Re: Curcumin
Has anyone with multiple myeloma had significant side effects with taking curcumin in conjunction with Revlimid?
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quillerm
Re: Curcumin
You might find this insightful regarding the efficacy of using curcumin with Revlimid. If you are currently taking Revlimid, I would definitely check with your doc.
http://www.sciedu.ca/journal/index.php/jhm/article/view/2562/1622
http://www.sciedu.ca/journal/index.php/jhm/article/view/2562/1622
Last edited by Multibilly on Tue Jan 14, 2014 12:19 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: Curcumin
I've been taking 2 g of curcumin daily for 5 years with no side effects. My oncologist recommended that I start taking it and at that dose. He says that he recommends it to all of his patients. He says that the research as to its effectiveness with myeloma isn't definitive, but that it can't cause any harm so why not try it.
I don't remember the details of what he said about how it works, but curcumin apparently interferes with one of the inflammatory pathways that promotes cancer cell growth. Curcumin is an anitinflammatory substance.
Nancy in Phila
I don't remember the details of what he said about how it works, but curcumin apparently interferes with one of the inflammatory pathways that promotes cancer cell growth. Curcumin is an anitinflammatory substance.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
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