Wondering if anyone has researched traditional Chinese medicine approaches to managing myeloma?
I understand one cannot take any herbal products while undergoing standard treatment on Revlimid, Velcade, and dex, but I am open to other gentler approaches such as curcumin and resveratrol when I am not on the conventional drugs. I'd be open to TCM if I found someone with a track record in supporting someone with myeloma.
I want to do everything I can to avoid transplant. My bones are still in pretty good condition.
RT
Forums
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RadiantTiger - Name: Radiant Tiger
- Who do you know with myeloma?: Myself, my deceased uncle
- When were you/they diagnosed?: Feb 2015
- Age at diagnosis: 54
Re: Myeloma and traditional Chinese medicine (TCM)
RT,
First, let me tell you that my philosophy has been and still is to use supplements to augment traditional multiple myeloma treatments, working with my doctor and not replacing but working along side the established protocol.
That said, I started researching curcumin about a year ago to supplement my traditional RVD treatment, only to find I had traveled to the "wild Wild West"! In other words, no federal regulations, no dosage or safety guides, nothing "official". I was on my own. I ran it by my doctor and he was ok.
I had my auto transplant last September and all went well with great results. I suspended taking curcumin for 30 days following at my doctor's request. I started last March and I am still on 8 grams Doctors Best curcumin per day, divided along with a maintenance dose of 10 mg of Revlimid for 21 days with 7 days off, with great results. Revlimid is an anti-angiogenic drug. There may be a better curcumin I am not aware of.
Lately, my interest has been around the anti-angiogenic properties of certain supplements in addition (specifically quercetin and others) to curcumin / Revlimid. Here is a link to some interesting slides but, again, buyer beware, its uncharted territory in many ways:
SM Sagar et al, "Natural health products that inhibit angiogenesis: a potential source for investigational new agents to treat cancer – Part 1," Current Oncology, Feb 2006 (full text at PubMed).
One of these charts lists Chinese medicinal herbs with anti-angiogenesis proven potential, but I know nothing about these and you should be very cautious and consult an expert Chinese herbalist before taking in my opinion.
The Ted talk by Dr William Li got me interested in anti-angiogenesis foods as well.
I would be interested in any of your findings in this area if you want to share.
Whatever you decide, all my best for health and happiness. - BN
First, let me tell you that my philosophy has been and still is to use supplements to augment traditional multiple myeloma treatments, working with my doctor and not replacing but working along side the established protocol.
That said, I started researching curcumin about a year ago to supplement my traditional RVD treatment, only to find I had traveled to the "wild Wild West"! In other words, no federal regulations, no dosage or safety guides, nothing "official". I was on my own. I ran it by my doctor and he was ok.
I had my auto transplant last September and all went well with great results. I suspended taking curcumin for 30 days following at my doctor's request. I started last March and I am still on 8 grams Doctors Best curcumin per day, divided along with a maintenance dose of 10 mg of Revlimid for 21 days with 7 days off, with great results. Revlimid is an anti-angiogenic drug. There may be a better curcumin I am not aware of.
Lately, my interest has been around the anti-angiogenic properties of certain supplements in addition (specifically quercetin and others) to curcumin / Revlimid. Here is a link to some interesting slides but, again, buyer beware, its uncharted territory in many ways:
SM Sagar et al, "Natural health products that inhibit angiogenesis: a potential source for investigational new agents to treat cancer – Part 1," Current Oncology, Feb 2006 (full text at PubMed).
One of these charts lists Chinese medicinal herbs with anti-angiogenesis proven potential, but I know nothing about these and you should be very cautious and consult an expert Chinese herbalist before taking in my opinion.
The Ted talk by Dr William Li got me interested in anti-angiogenesis foods as well.
I would be interested in any of your findings in this area if you want to share.
Whatever you decide, all my best for health and happiness. - BN
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Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
Re: Myeloma and traditional Chinese medicine (TCM)
Hi RadiantTiger,
You probably know this already, but there has been a fair amount of research on curcumin and the possibility that it may have anti-myeloma activity. There are a lot of discussions here in the forum about curcumin (just type either curcumin or turmeric into the forum search box), and there also are a number of articles on curcumin at the Beacon. This link will take you to them,
https://myelomabeacon.org/tag/curcumin/
I think you'll find it harder to find much, generally speaking, on the traditional Chinese medicine approach to multiple myeloma, although you may find research on specific traditional medicines used for myeloma. See, for example, these articles as examples:
https://myelomabeacon.org/news/2012/11/21/beacon-newsflashes-november-21-2012/
https://myelomabeacon.org/news/2012/01/12/beacon-newsflashes-january-12-2012/
This Google search also may point you to more studies that may be relevant to your search:
https://www.google.com/search?q=traditional+chinese+medicine+myeloma+site%3Ancbi.nlm.nih.gov
Finally, if you're generally interested in alternative or complementary approaches to treating myeloma, just search the forum on the keyword "alternative" or "complementary". You'll find a number of different discussions, many of which have links to other useful discussions and studies that may be helpful.
Hope this helps a bit, and good luck with your research!
You probably know this already, but there has been a fair amount of research on curcumin and the possibility that it may have anti-myeloma activity. There are a lot of discussions here in the forum about curcumin (just type either curcumin or turmeric into the forum search box), and there also are a number of articles on curcumin at the Beacon. This link will take you to them,
https://myelomabeacon.org/tag/curcumin/
I think you'll find it harder to find much, generally speaking, on the traditional Chinese medicine approach to multiple myeloma, although you may find research on specific traditional medicines used for myeloma. See, for example, these articles as examples:
https://myelomabeacon.org/news/2012/11/21/beacon-newsflashes-november-21-2012/
https://myelomabeacon.org/news/2012/01/12/beacon-newsflashes-january-12-2012/
This Google search also may point you to more studies that may be relevant to your search:
https://www.google.com/search?q=traditional+chinese+medicine+myeloma+site%3Ancbi.nlm.nih.gov
Finally, if you're generally interested in alternative or complementary approaches to treating myeloma, just search the forum on the keyword "alternative" or "complementary". You'll find a number of different discussions, many of which have links to other useful discussions and studies that may be helpful.
Hope this helps a bit, and good luck with your research!
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JimNY
Re: Myeloma and traditional Chinese medicine (TCM)
I am doubtful about traditional Chinese medicine to treat myeloma directly. But I have heard of some having success with acupuncture to help with neuropathy.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Myeloma and traditional Chinese medicine (TCM)
A study had been done around 2010 I believe showing that acupuncture did work. The problem was that most insurances did not pay for this treatment and the patients could not afford the treatments.
My husband got shingles in the middle of his first round of treatment. Lost all feeling in his leg from his hip to his ankle. In terrible pain, couldn't walk without a walker. He went to a neurologist and was told he might or might not ever get use of leg. With the approval of his oncologist, I set him up for reflexology. That is pressure points to the feet. Once a week for 10 months. He said it was very painful. Pain would shoot up his leg. That pain was the nerves trying to reactivate. Now he is pain free from the shingles, has use of leg, walks with a cane. He goes twice a month now. He said he no longer feels pain when the reflexology is being done which means all the nerves are working.
Acupuncture was going to be our next step. Sometimes you have to step outside the box to get help.
My husband got shingles in the middle of his first round of treatment. Lost all feeling in his leg from his hip to his ankle. In terrible pain, couldn't walk without a walker. He went to a neurologist and was told he might or might not ever get use of leg. With the approval of his oncologist, I set him up for reflexology. That is pressure points to the feet. Once a week for 10 months. He said it was very painful. Pain would shoot up his leg. That pain was the nerves trying to reactivate. Now he is pain free from the shingles, has use of leg, walks with a cane. He goes twice a month now. He said he no longer feels pain when the reflexology is being done which means all the nerves are working.
Acupuncture was going to be our next step. Sometimes you have to step outside the box to get help.
Re: Myeloma and traditional Chinese medicine (TCM)
Thanks everyone for your responses.
My hope is to find an alternative medicine practitioner of some kind to help me manage the side effects of the treatments and to also support my body to naturally fight the disease.
It seems this will take some searching since I need someone with a track record with myeloma patients.
My hope is to find an alternative medicine practitioner of some kind to help me manage the side effects of the treatments and to also support my body to naturally fight the disease.
It seems this will take some searching since I need someone with a track record with myeloma patients.
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RadiantTiger - Name: Radiant Tiger
- Who do you know with myeloma?: Myself, my deceased uncle
- When were you/they diagnosed?: Feb 2015
- Age at diagnosis: 54
Re: Myeloma and traditional Chinese medicine (TCM)
RT,
I wish you the best with your myeloma treatment, but if you are finding it difficult to find an “alternative” medicine practitioner with a good track record with myeloma, maybe it is a sign that the best approach is to use what is tried and true.
Why have you so quickly decided that traditional Chinese medicine or some other alternative medicine is the best approach to treating your myeloma? Why the need to find an “alternative” practitioner and not something that is simply best treatment that is available to you, whatever it may be?
From my perspective, I want to keep an open mind and use what works, whether it be Chinese, American, French, Hungarian, Polish, Bolivian, or the Vatican’s medicine. As long as it works and is backed up science, clinical trials, is peer reviewed, and can be repeated successfully by others.
It is my understanding that, in modern China, they are using the same standards of medical treatment and research based on the scientific method that is used in the west. I have seen publications posted on Chinese research into cancer treatment that are done in collaboration with western researchers (and without). I would also think that, if there was any merit to traditional Chinese medicine to treat cancer, the Chinese would be the first to investigate it – using the modern scientific methods – in their universities and research hospitals. Maybe that would be the first place to look.
I remember a few years ago on the Beacon a Chinese research paper on resveratrol, the agent in red grape skins that has shown anticancer properties. I recall the finding was that the concentration of resveratrol needed to be effective was impossibly high to administer through diet, supplements, or even IV. But they thought that direct injection into, or application on, cancer tumors may show some promise.
Modern China should be quite capable of evaluating the effectiveness of traditional Chinese medicine practices centuries ago before modern science.
I wish you the best with your myeloma treatment, but if you are finding it difficult to find an “alternative” medicine practitioner with a good track record with myeloma, maybe it is a sign that the best approach is to use what is tried and true.
Why have you so quickly decided that traditional Chinese medicine or some other alternative medicine is the best approach to treating your myeloma? Why the need to find an “alternative” practitioner and not something that is simply best treatment that is available to you, whatever it may be?
From my perspective, I want to keep an open mind and use what works, whether it be Chinese, American, French, Hungarian, Polish, Bolivian, or the Vatican’s medicine. As long as it works and is backed up science, clinical trials, is peer reviewed, and can be repeated successfully by others.
It is my understanding that, in modern China, they are using the same standards of medical treatment and research based on the scientific method that is used in the west. I have seen publications posted on Chinese research into cancer treatment that are done in collaboration with western researchers (and without). I would also think that, if there was any merit to traditional Chinese medicine to treat cancer, the Chinese would be the first to investigate it – using the modern scientific methods – in their universities and research hospitals. Maybe that would be the first place to look.
I remember a few years ago on the Beacon a Chinese research paper on resveratrol, the agent in red grape skins that has shown anticancer properties. I recall the finding was that the concentration of resveratrol needed to be effective was impossibly high to administer through diet, supplements, or even IV. But they thought that direct injection into, or application on, cancer tumors may show some promise.
Modern China should be quite capable of evaluating the effectiveness of traditional Chinese medicine practices centuries ago before modern science.
-
Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Myeloma and traditional Chinese medicine (TCM)
Hi,
There are several good articles on the Beacon about resveratrol. There are safety / kidney concerns, but this was with a proprietary Glaxo formula.
https://myelomabeacon.org/search/Resveratrol/
Personally, I have settled on curcumin, quercetin, and omega 3 (flax oil/meal) combo along with working on increasing anti-angiogenesis foods (Dr Li). These all seem to work well with my Revlimid maintenance regime.
Of course, with multiple myeloma, there is always a personal element, but this fits my philosophy's method of working with my doctor and established best practices for science-based protocols.
Be safe and well!
BN
There are several good articles on the Beacon about resveratrol. There are safety / kidney concerns, but this was with a proprietary Glaxo formula.
https://myelomabeacon.org/search/Resveratrol/
Personally, I have settled on curcumin, quercetin, and omega 3 (flax oil/meal) combo along with working on increasing anti-angiogenesis foods (Dr Li). These all seem to work well with my Revlimid maintenance regime.
Of course, with multiple myeloma, there is always a personal element, but this fits my philosophy's method of working with my doctor and established best practices for science-based protocols.
Be safe and well!
BN
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Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
Re: Myeloma and traditional Chinese medicine (TCM)
Eric - Re: "Why have you so quickly decided that traditional Chinese medicine or some other alternative medicine is the best approach to treating your myeloma? Why the need to find an “alternative” practitioner and not something that is simply best treatment that is available to you, whatever it may be? "
In my perfect world, my oncologists would have rigorous training in nutritional supplements, herbs and foods that would counteract the side effects of the drugs and support the body's natural healing capacities. This is not the case though.
We live in a world of specialists, so I feel I need more than one source of knowledge.
RT
In my perfect world, my oncologists would have rigorous training in nutritional supplements, herbs and foods that would counteract the side effects of the drugs and support the body's natural healing capacities. This is not the case though.
We live in a world of specialists, so I feel I need more than one source of knowledge.
RT
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RadiantTiger - Name: Radiant Tiger
- Who do you know with myeloma?: Myself, my deceased uncle
- When were you/they diagnosed?: Feb 2015
- Age at diagnosis: 54
Re: Myeloma and traditional Chinese medicine (TCM)
Bar-none - Thanks very much for this info. I will check it out.
Yes, the 'wild west' it is.
Yes, the 'wild west' it is.
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RadiantTiger - Name: Radiant Tiger
- Who do you know with myeloma?: Myself, my deceased uncle
- When were you/they diagnosed?: Feb 2015
- Age at diagnosis: 54
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