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Alternative Treatments Complementary and alternative medicine; natural and holistic approaches

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  #1  
Old Wed Nov 3, 2010, 09:55 PM
S001 S001 is offline
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Ginger, curcumin and coenzyme Q10?

I came across this article about Dr. Azra Raza heading research on treating early stage MDS with ginger, curcumin and coenzyme Q10.

I was wondering if anybody has actually tried taking supplements of any of the 3 mentioned and has seen some results with the same. According to this site, curcumin is quite the pot of gold. So has anybody tried these successfully?
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  #2  
Old Fri Nov 5, 2010, 02:07 PM
Mary4Mike Mary4Mike is offline
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We saw Dr. Raza several times after Mike's initial diagnosis. We were looking at all of our options. At one time, she was the leader in research of MDS and maybe she still is. We have always leaned heavy on supplements and have tried all of the ones you mentioned. They never raised blood counts. I believe they help to keep your body in optimum shape for what it is dealing with. No supplement is going to heal your bone marrow. Having said that, Mike takes many, many, many supplements on a daily basis and I believe that it was most beneficial in the outcome of his transplant. He literally flew through it with no side effects and very little GVHD. The medical world isn't open to it. Probably because they aren't trained in it. When I listed what he was on, the PAC couldn't even pronounce half of them. They aren't educated in alternative methods or even nutrition as part of a complimentary treatment plan. ......don't get me started. Dr. Raza is one of the few that looks outside the standard of care. To sum this up, it certainly will not hurt you to take these supplements (of course tell your doctor) but curcumin and ginger are antiinflammatories and most disease is caused by inflammation. COQ 10 should be taken by everyone and especially by those taking cholesterol lowering drugs. Of course, this is my opinion and many more for that fact, just do your research.

Good luck with your journey.
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Mary, wife of Mike age 70; diagnosed MDS RARS 1999. Tried Vidaza, Revlimid, and Dacogen. SCT 10/1/09 at U of MI; induction FluBu2; sister perfect match donor. 5 years out, little to no GVHD. Off all meds. God is good
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  #3  
Old Fri Nov 5, 2010, 04:13 PM
S001 S001 is offline
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Quote:
Originally Posted by Mary4Mike View Post
We saw Dr. Raza several times after Mike's initial diagnosis. We were looking at all of our options. At one time, she was the leader in research of MDS and maybe she still is. We have always leaned heavy on supplements and have tried all of the ones you mentioned. They never raised blood counts. I believe they help to keep your body in optimum shape for what it is dealing with. No supplement is going to heal your bone marrow. Having said that, Mike takes many, many, many supplements on a daily basis and I believe that it was most beneficial in the outcome of his transplant. He literally flew through it with no side effects and very little GVHD. The medical world isn't open to it. Probably because they aren't trained in it. When I listed what he was on, the PAC couldn't even pronounce half of them. They aren't educated in alternative methods or even nutrition as part of a complimentary treatment plan. ......don't get me started. Dr. Raza is one of the few that looks outside the standard of care. To sum this up, it certainly will not hurt you to take these supplements (of course tell your doctor) but curcumin and ginger are antiinflammatories and most disease is caused by inflammation. COQ 10 should be taken by everyone and especially by those taking cholesterol lowering drugs. Of course, this is my opinion and many more for that fact, just do your research.

Good luck with your journey.
You'r right on alot of counts. And great to know your husband did so well. Thanks for your input too.
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  #4  
Old Fri Nov 5, 2010, 08:37 PM
Greg H Greg H is offline
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Taking CoQ10

I ran across a couple of article abstracts describing studies of CoQ10 in MDS conducted by Dr. Raza and others.

The first indicated some success in improving blood counts and even chromosomal abnormalities in some folks. You can find that one here.

The second, a follow-on study, attempted to figure out if there were identifiable characteristics that docs could use to screen which patients would be likely to respond to CoQ10. That was unsuccessful. Seven of the 29 patients enrolled had some improvement, but they weren't able to identify any useful markers for predicting which patients would respond. An abstract of that study is here. Seems to me it was a pretty small sample to try tease out that sort of info.

My takeaway from this was that, at this point, the docs don't have any data to figure out whether CoQ10 will help you (or your Dad). On the other hand, it clearly helps some percentage of folks.

So I started taking 1200mg per day of CoQ10 (the dose Dr. Raza used in those studies) a couple of months ago. It hasn't been long enough, at this point, for me to say whether it has helped. I did stretch out my last transfusion interval from 6 to 8 weeks, but other factors could have come into play.

Near as I can tell, coQ10 has no side effects, so I figured there was no harm in giving it a shot.

I haven't been able to find any studies with reported results for Curcumin, but I bought some anyway, based on Raza's interest in it. The Parkinson's community tends to take 900mg a day of that, but caution you have to work up to that dose because of gastrointestinal effect. I haven't started it yet -- and may not, since I'm about to enter a clinical trial. There are some reports of Curcumin being linked to bleeding (which might be an issue for low platelet folks), but I haven't been able to track those to an authoritative source.

Take Care!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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  #5  
Old Fri Nov 5, 2010, 10:38 PM
cathybee1 cathybee1 is offline
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My husband is big on supplements. This is contrary to our local hematologist's thinking who would prefer Bruce discontinue everything except prescription medication.

Bruce's preference is to keep taking them. We no longer buy "drugstore" supplements. One of the main issues with curcumin is poor bioavailability. So, Bruce is taking a curcumin supplement which is supposed to have improved bioavailability.put out by Thorne Labs, a company which our medical doctor feels is reliable.

As an interesting side note, I did find a current clinical trial for low risk MDS patients involving Maitake Mushrooms at Sloan Kettering. http://www.clinicaltrials.gov/ct2/sh...splasia&rank=1
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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  #6  
Old Sat Nov 6, 2010, 12:46 AM
S001 S001 is offline
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Quote:
Originally Posted by Greg H View Post
I ran across a couple of article abstracts describing studies of CoQ10 in MDS conducted by Dr. Raza and others.

The first indicated some success in improving blood counts and even chromosomal abnormalities in some folks. You can find that one here.

The second, a follow-on study, attempted to figure out if there were identifiable characteristics that docs could use to screen which patients would be likely to respond to CoQ10. That was unsuccessful. Seven of the 29 patients enrolled had some improvement, but they weren't able to identify any useful markers for predicting which patients would respond. An abstract of that study is here. Seems to me it was a pretty small sample to try tease out that sort of info.

My takeaway from this was that, at this point, the docs don't have any data to figure out whether CoQ10 will help you (or your Dad). On the other hand, it clearly helps some percentage of folks.

So I started taking 1200mg per day of CoQ10 (the dose Dr. Raza used in those studies) a couple of months ago. It hasn't been long enough, at this point, for me to say whether it has helped. I did stretch out my last transfusion interval from 6 to 8 weeks, but other factors could have come into play.

Near as I can tell, coQ10 has no side effects, so I figured there was no harm in giving it a shot.

I haven't been able to find any studies with reported results for Curcumin, but I bought some anyway, based on Raza's interest in it. The Parkinson's community tends to take 900mg a day of that, but caution you have to work up to that dose because of gastrointestinal effect. I haven't started it yet -- and may not, since I'm about to enter a clinical trial. There are some reports of Curcumin being linked to bleeding (which might be an issue for low platelet folks), but I haven't been able to track those to an authoritative source.

Take Care!

Greg
Thanks for the links. Great to know that Coenzyme Q10 didn't have any side effects atleast. Hope it works in the days to come.
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  #7  
Old Sat Nov 6, 2010, 12:48 AM
S001 S001 is offline
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Quote:
Originally Posted by cathybee1 View Post
My husband is big on supplements. This is contrary to our local hematologist's thinking who would prefer Bruce discontinue everything except prescription medication.

Bruce's preference is to keep taking them. We no longer buy "drugstore" supplements. One of the main issues with curcumin is poor bioavailability. So, Bruce is taking a curcumin supplement which is supposed to have improved bioavailability.put out by Thorne Labs, a company which our medical doctor feels is reliable.

As an interesting side note, I did find a current clinical trial for low risk MDS patients involving Maitake Mushrooms at Sloan Kettering. http://www.clinicaltrials.gov/ct2/sh...splasia&rank=1
Hmm Maitake Mushrooms. Interestingly, I just read about mushrooms being potent anti cancer foods. Food for thought indeed.
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  #8  
Old Sat Nov 6, 2010, 09:26 AM
Greg H Greg H is offline
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How much Curcumin?

Quote:
Originally Posted by cathybee1 View Post
One of the main issues with curcumin is poor bioavailability. So, Bruce is taking a curcumin supplement which is supposed to have improved bioavailability put out by Thorne Labs, a company which our medical doctor feels is reliable.
Hey Catherine!

How much Curcumin is Bruce taking? I've been skeptical of the reports about increased bleeding with curcumin, because they seem to be traceable to just one or two cases. I've held off because I wanted to see if the CoQ10 would improve anything on its own, before adding something else into the mix.

The Curcumin I have in reserve is by NSI and is called "Turmeric Extract with BioPerine." The BioPerine is a black pepper extract that is added to increase bioavailability.

Soon after I was diagnosed I read David Servan-Schreiber's Anti-Cancer, in which he notes the need for pepper with your Curcumin. He also likes the idea of using turmeric in food, but the analyses I have seen indicate you have to eat a LOT of turmeric to get significant amounts of Curcumin. (Still, it's a great book, and I've taken a lot of it to heart.)

Take Care!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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  #9  
Old Sat Nov 6, 2010, 02:32 PM
cathybee1 cathybee1 is offline
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The book you're citing sounds like a helpful one. We also have a book we have gotten ideas from called "How to Prevent and Treat Cancer with Natural Medicine." One of the co-authors of the book is an associate of our family M.D. in an organization called the Institute of Functional Medicine. Functional Medicine's approach is to combine western medical treatment with dietary and nutritional supplements to optimize health/healing.

I especially like this book because it cites clinical trials and gives protocols on how/when to take supplements. For instance, because of absorption issues with curcumin, their recommendation is to take curcumin on an empty stomach 15-20 minutes before meals, or between meals, along with proteolytic enzymes (which is another discussion).

The recommended dosage is 200-400 mg 1-3 times/day -- a wide range!. Bruce is taking a 250 mg supplement of a time release curcumin supplement -- Curcumin Phytosome (curcuma longa extract/phosphadylcholine complex) 2x/day. The Curcumin Phytosome is supposedly more bioavailable.

Bruce has also been introducing extra supplements gradually, though with 2-3 months to see changes in the bone marrow expressed in the bloodwork makes it challenging.
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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  #10  
Old Sun Nov 7, 2010, 12:33 PM
S001 S001 is offline
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Here is a December 2009 interview with Dr. Bharat B. Aggarwal on Curcumin.

This gives hope -

The biggest challenge is for doctors to accept that curcumin could have potential for cancer. Pharmaceutical companies are not going to be able to profit from this. Curcumin is so inexpensive some doctors have a hard time believing that it even works because they are comparing it to drugs that cost $45,000 to $50,000 per dose. They feel curcumin cannot work because it doesn’t cost as much as the drugs they are used to dispensing. And my response to them is seeing is believing. I tell them to just try it and see if it works.

I also wrote to Dr. Aggarwal asking about curcumin dosages and he replied that my father should take 8 gm per day, escalating the dosage from 500 mg per day in the beginning. He also said that this should be taken for atleast 3 months to judge its efficacy. Hope it works.

Last edited by S001 : Sun Nov 7, 2010 at 04:25 PM.
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  #11  
Old Sun Nov 7, 2010, 06:58 PM
cathybee1 cathybee1 is offline
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Quote:
Originally Posted by S001 View Post
Here is a December 2009 interview with Dr. Bharat B. Aggarwal on Curcumin.

This gives hope -

The biggest challenge is for doctors to accept that curcumin could have potential for cancer. Pharmaceutical companies are not going to be able to profit from this. Curcumin is so inexpensive some doctors have a hard time believing that it even works because they are comparing it to drugs that cost $45,000 to $50,000 per dose. They feel curcumin cannot work because it doesn’t cost as much as the drugs they are used to dispensing. And my response to them is seeing is believing. I tell them to just try it and see if it works.

I also wrote to Dr. Aggarwal asking about curcumin dosages and he replied that my father should take 8 gm per day, escalating the dosage from 500 mg per day in the beginning. He also said that this should be taken for atleast 3 months to judge its efficacy. Hope it works.
Please keep us posted of your father's progress. I realize that you and your father are trying to digest a lot of complicated information right now. But, my personal feeling is that the medical community in Europe and Asia are more progressive in considering "alternative" therapies and utilizing them as part of treatment than the doctors in the U.S.
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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  #12  
Old Sun Nov 7, 2010, 09:03 PM
Greg H Greg H is offline
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Quote:
Originally Posted by S001 View Post
I also wrote to Dr. Aggarwal asking about curcumin dosages and he replied that my father should take 8 gm per day, escalating the dosage from 500 mg per day in the beginning. He also said that this should be taken for atleast 3 months to judge its efficacy. Hope it works.
Wow! That is one big dose of curcumin!

There's some good info (with lots of references) at the Linus Pauling Institute at Oregon State University here.

It notes:
"Serious adverse effects have not been reported in humans taking high doses of curcumin. A dose escalation trial in 24 adults found that single oral dosages up to 12 g were safe, and adverse effects were not dose-related (5). In a phase I trial in Taiwan, curcumin supplementation up to 8 g/day for three months was reported to be well-tolerated in patients with precancerous conditions or noninvasive cancer (8)."

So 8 g would appear to be okay. That's way more than I found folks in the Parkinson's community taking, but a UCLA Alzheimer's study is using 4 g/day.

Pauling also notes: "Curcumin has been found to inhibit platelet aggregation in vitro (85, 86), suggesting a potential for curcumin supplementation to increase the risk of bleeding in people taking anticoagulant or antiplatelet medications, such as aspirin, clopidogrel (Plavix), dalteparin (Fragmin), enoxaparin (Lovenox), heparin, ticlopidine (Ticlid), and warfarin (Coumadin)." That could be a problem if your Dad is already thrombocytopenic. I recall now that's what made me a little wary of starting Curcumin and resulted in my opting for the CoQ10 for starters.

Good luck!

Greg
__________________
Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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  #13  
Old Sun Nov 7, 2010, 10:08 PM
S001 S001 is offline
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Quote:
Originally Posted by cathybee1 View Post
Please keep us posted of your father's progress. I realize that you and your father are trying to digest a lot of complicated information right now. But, my personal feeling is that the medical community in Europe and Asia are more progressive in considering "alternative" therapies and utilizing them as part of treatment than the doctors in the U.S.
Alternative therapies don't go down well with most conventional doctors. And will update if and when there are any changes.
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Old Sun Nov 7, 2010, 10:10 PM
S001 S001 is offline
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Originally Posted by Greg H View Post
Wow! That is one big dose of curcumin!

There's some good info (with lots of references) at the Linus Pauling Institute at Oregon State University here.

It notes:
"Serious adverse effects have not been reported in humans taking high doses of curcumin. A dose escalation trial in 24 adults found that single oral dosages up to 12 g were safe, and adverse effects were not dose-related (5). In a phase I trial in Taiwan, curcumin supplementation up to 8 g/day for three months was reported to be well-tolerated in patients with precancerous conditions or noninvasive cancer (8)."

So 8 g would appear to be okay. That's way more than I found folks in the Parkinson's community taking, but a UCLA Alzheimer's study is using 4 g/day.

Pauling also notes: "Curcumin has been found to inhibit platelet aggregation in vitro (85, 86), suggesting a potential for curcumin supplementation to increase the risk of bleeding in people taking anticoagulant or antiplatelet medications, such as aspirin, clopidogrel (Plavix), dalteparin (Fragmin), enoxaparin (Lovenox), heparin, ticlopidine (Ticlid), and warfarin (Coumadin)." That could be a problem if your Dad is already thrombocytopenic. I recall now that's what made me a little wary of starting Curcumin and resulted in my opting for the CoQ10 for starters.

Good luck!

Greg
Yeah, 8 gm sure is high dosage. And dad doesn't have thrombocytopenia, though in case blood tests reveal dipping platelets, we'll know to limit/discontinue the curcumin. Thanks for this though.
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Old Mon Nov 8, 2010, 07:43 AM
Marlene Marlene is offline
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You may want to check his clotting time also. Even though John's platelets were 8 - 10 K for quite a long time, his clotting times were normal. He took vitamin E, CoQ10, Vit C and fish oil with platelets this low and never had a problem.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #16  
Old Mon Nov 8, 2010, 11:16 AM
S001 S001 is offline
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Originally Posted by Marlene View Post
You may want to check his clotting time also. Even though John's platelets were 8 - 10 K for quite a long time, his clotting times were normal. He took vitamin E, CoQ10, Vit C and fish oil with platelets this low and never had a problem.
I didn't know about this. Thank you so much for pointing it out.
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  #17  
Old Thu Dec 2, 2010, 10:44 PM
S001 S001 is offline
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Here is a study conducted by Dr. Azra - "Multi-lineage response to a combination of gingerol and curcumin in low risk myelodysplastic syndromes (MDS).

Small number of people in the trial though (just 9), but they are going ahead with more trials in this area.
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