My husband has been diagnosed with Smoldering Myeloma, and we are patients at the Mayo Clinic. We are in a "wait and see" mode right now, but our numbers are moving in the wrong direction. I'm looking for nutritional information on how we might be able to reduce M-Spike through nutritional changes and avoid/postpone treatment, if that's possible. I've been reading about different enzyme treatments that look promising, and have even found a supportive clinical trial run in Germany. We haven't received any specific nutritional guidance from our doctors. We're told to just follow a "healthy diet" -- although from what I'm reading, that's where the opinions vary. Does anyone have any feel for this? I've also heard about Turmeric, Curcumin, and Restrovetol, but again, nothing by any of our doctors.
I've learned there is a Dr. Gonzalez in NYC that recommends more red meat and full fats for multiple myeloma patients, probably to boost enzymes, but that's not exactly what's considered a "healthy diet" according to conventional information these days. Is there any scientific data as it relates to multiple myeloma? I know enough to be dangerous!
Thanks!
Sandy
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SandyC63 - Name: SandyC
- Who do you know with myeloma?: My Husband
- When were you/they diagnosed?: 2012
- Age at diagnosis: 51
Re: Nutrition, Enzymes, and Multiple Myeloma
Hi Sandy,
Sorry to hear that your husband's numbers are heading in the wrong direction.
It sounds like you've done some good research and already identified a lot of the potential natural approaches to helping your husband.
You may find these pages useful to make sure you've covered all your bases during your research:
https://myelomabeacon.org/tag/dietary-supplement/
https://myelomabeacon.org/tag/curcumin/
https://myelomabeacon.org/tag/resveratrol/
Also, for articles about recent research related to smoldering myeloma, see this page:
https://myelomabeacon.org/tag/smoldering-multiple-myeloma/
Have your husband's doctors' determined whether or not your husband has any of the characteristics typical of smoldering patients with a high risk of progressing to active myeloma? There's a posting here,
https://myelomabeacon.org/forum/lab-results-t1274.html#p6391
on that subject.
If your husband is at a high risk of progressing, you and he will have to decide whether or not to actively treat his smoldering myeloma with anti-myeloma drugs. As you've probably been told, active treatment isn't common and wasn't even really discussed as an option until a few years ago. But there are more and more studies suggesting there may be a benefit to active treatment. It's still a controversial topic though.
I really hope your husband's numbers take a permanent turn in direction!
Sorry to hear that your husband's numbers are heading in the wrong direction.
It sounds like you've done some good research and already identified a lot of the potential natural approaches to helping your husband.
You may find these pages useful to make sure you've covered all your bases during your research:
https://myelomabeacon.org/tag/dietary-supplement/
https://myelomabeacon.org/tag/curcumin/
https://myelomabeacon.org/tag/resveratrol/
Also, for articles about recent research related to smoldering myeloma, see this page:
https://myelomabeacon.org/tag/smoldering-multiple-myeloma/
Have your husband's doctors' determined whether or not your husband has any of the characteristics typical of smoldering patients with a high risk of progressing to active myeloma? There's a posting here,
https://myelomabeacon.org/forum/lab-results-t1274.html#p6391
on that subject.
If your husband is at a high risk of progressing, you and he will have to decide whether or not to actively treat his smoldering myeloma with anti-myeloma drugs. As you've probably been told, active treatment isn't common and wasn't even really discussed as an option until a few years ago. But there are more and more studies suggesting there may be a benefit to active treatment. It's still a controversial topic though.
I really hope your husband's numbers take a permanent turn in direction!
Last edited by Ricardo on Thu Aug 30, 2012 9:15 am, edited 1 time in total.
Re: Nutrition, Enzymes, and Multiple Myeloma
I would ask your myeloma physicians at Mayo Clinic to refer you to their nutritionists/dieticians. I too am guilty of knowing very little about this topic but have been pleased to learn that the nutrition folks at my previous institution(the University of New Mexico in Albuquerque) and the nutrition folks here at the Seattle Cancer Care Alliance/Fred Hutchinson Cancer Center KNOW ALOT about this topic. AND.... they are very pleased and excited to have the opportunity to share their knowledge. The barrier is that the physician has to take the initiative and refer the patient. I now routinely refer my patients at the Hutch if the question comes up.
I can tell you that there is no convincing scientific evidence as of 2012 that any nutritional supplement etc can treat multiple myeloma, smoldering myeloma or MGUS.
Best of luck with learning more about this important topic.
Ed Libby
I can tell you that there is no convincing scientific evidence as of 2012 that any nutritional supplement etc can treat multiple myeloma, smoldering myeloma or MGUS.
Best of luck with learning more about this important topic.
Ed Libby
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Nutrition, Enzymes, and Multiple Myeloma
Thank you for your replies, encouragement, and resources. I'll be sure to check these out.
Dr. Libby, thanks for mentioning those nutritionists. I'm excited to have resource here, and will see what they'd recommend for a multiple myeloma patient. I'm all for traditional medicine, and the more I read, the right nutrition may also play an important role in improving health.
Ricardo, thanks for the resources you shared. We do have some issues that put us at a moderate risk for development, so I'll read these articles with interest.
Paula, I'm so happy to hear of your progress with curcumin! That's very encouraging. I definitely am interested to investigate which nutritional approaches would be most beneficial for us.
OK, I have another question. What happens to the dead cancer cells? Are there ways to make this easier for the body to do?
Thanks!
Dr. Libby, thanks for mentioning those nutritionists. I'm excited to have resource here, and will see what they'd recommend for a multiple myeloma patient. I'm all for traditional medicine, and the more I read, the right nutrition may also play an important role in improving health.
Ricardo, thanks for the resources you shared. We do have some issues that put us at a moderate risk for development, so I'll read these articles with interest.
Paula, I'm so happy to hear of your progress with curcumin! That's very encouraging. I definitely am interested to investigate which nutritional approaches would be most beneficial for us.
OK, I have another question. What happens to the dead cancer cells? Are there ways to make this easier for the body to do?
Thanks!
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SandyC63 - Name: SandyC
- Who do you know with myeloma?: My Husband
- When were you/they diagnosed?: 2012
- Age at diagnosis: 51
Re: Nutrition, Enzymes, and Multiple Myeloma
Hi Sandy,
my husband is a myeloma survivor- diagnosed 2 yrs. ago, went through chemo, tandem transplants within 7 months of diagnosis and since then he is on revilimid maintainance and is in remission now.
Yes, he has lots of problems in maintaining his counts.It is an ongoing struggle and a challenge!
I have taken the following steps over these 2 yrs. or strengthened what I have been practicing all these yrs. We are vegetarians.
1. I use curcumin powder liberally in my cooking on a regular basis.
2. I started increasing fresh ginger use in my cooking because it is known to be anti-inflammatory and infection reducer.
3. Papaya daily in small amounts has helped in bringing up the wbc counts and neutrophyll.
4. He does treadmill for an hr. daily in the morning early. After exercise, I give him juice made with beet+carrot+ginger+apple+few pinches of cinnamon+flaxmeal. I replace apple with nectarine/peach/plum etc.
The above implementations concurrently has borne results definitely over months.
Hope this helps.
my husband is a myeloma survivor- diagnosed 2 yrs. ago, went through chemo, tandem transplants within 7 months of diagnosis and since then he is on revilimid maintainance and is in remission now.
Yes, he has lots of problems in maintaining his counts.It is an ongoing struggle and a challenge!
I have taken the following steps over these 2 yrs. or strengthened what I have been practicing all these yrs. We are vegetarians.
1. I use curcumin powder liberally in my cooking on a regular basis.
2. I started increasing fresh ginger use in my cooking because it is known to be anti-inflammatory and infection reducer.
3. Papaya daily in small amounts has helped in bringing up the wbc counts and neutrophyll.
4. He does treadmill for an hr. daily in the morning early. After exercise, I give him juice made with beet+carrot+ginger+apple+few pinches of cinnamon+flaxmeal. I replace apple with nectarine/peach/plum etc.
The above implementations concurrently has borne results definitely over months.
Hope this helps.
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pym - Name: pym
- Who do you know with myeloma?: spouse
- When were you/they diagnosed?: July 2011
Re: Nutrition, Enzymes, and Multiple Myeloma
Unfortunately I don't know of any definitive trials that prove any improvement of certain nutritional approaches to this disease. I wish there was a good way to do one. My own approach is to make smoothie in the morning with blueberries, an apple, maybe some strawberries and whatever other fruits I happen to have-- usually grapes. During the day I try to have another apple and some brocolli. . This is then coupled with at least 1/2 hour of exercise. I also take two capsules of super Curcummin per day between meals.
Iam a new patient and like most newley treated patients, I have responded well to RVD. (Complete remission after six cycles), So I really won't know for a few years if this extends my time to disease progression-- For all I know these things could make things worse but this is what I have decided to do in any case.
Couple links:
http://www.healthyfellow.com/420/apples-and-cancer-protection/
http://www.cancer.org/treatment/treatmentsandsideeffects/complementaryandalternativemedicine/dietandnutrition/broccoli?sitearea=ETO
Paul Jorgensen-- pjorg45
Iam a new patient and like most newley treated patients, I have responded well to RVD. (Complete remission after six cycles), So I really won't know for a few years if this extends my time to disease progression-- For all I know these things could make things worse but this is what I have decided to do in any case.
Couple links:
http://www.healthyfellow.com/420/apples-and-cancer-protection/
http://www.cancer.org/treatment/treatmentsandsideeffects/complementaryandalternativemedicine/dietandnutrition/broccoli?sitearea=ETO
Paul Jorgensen-- pjorg45
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Pjorg45 - Name: Paul Jorgensen
- When were you/they diagnosed?: May 1013
- Age at diagnosis: 68
6 posts
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