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ReplyHusband recently diagnosed with mm. We will do chemo/meds and stem cell transplant. Our goal is long lasting remission. Any info you could provide regarding supplementation would be appreciated. Thank you and God bless.
ReplyHi Joanne-
I am sorry to learn of your husband’s MM diagnosis. Several things. I will email the MM cancer coaching list of evidence-based, anti-MM supplements. The key is to read the studies linked to each supplement. I have also added those supplements that I take.
Studies show that PRE-habilitation will help your husband respond better, longer both to his induction therapy and his ASCT.
The MM CC supplement guide is one of 13 guides included in the MM CC program. I understand that I sound self-serving but the program provides dozens of evidence-based therapies for MMers, both conventional (FDA approved) and non-conventional. The study linked below explains that there is no difference in overall survival by having an ASCT immediately following your husband’s induction therapy or having an ASCT when he relapses.
First line vs. delayed ASCT in MM
I will email the supplement guide to your verizon email address now. Let me know if you have any questions. Good luck.
David Emerson
ReplyHi David,
Very informative website, thank you!
My dad was diagnosed with MM in Feb 2016. He went on a front-line trial of Carfilzomib, follower by a Stem cell transplant. The SC didnt work as well as hoped, but he is now responding to Velcade very well and is on what we are told is a maintenance dose once a week. We are keen to learn more about the supplements you mention Cucumin, Omega3, Restveratrol and vitamin D3. How can i find out which brands you recommend ?
many thanks
ReplyHi John-
I have emailed the Multiple Myeloma Cancer Coaching Program Introduction to your email account. The MM CC program includes the integrative therapies and anti-MM supplementation that I refer to below. I outline the specific therapies, brands, doses, that I take in the supplement guide.
I am sorry to read of your dad’s MM diagnosis. Has he talked about numbness or nerve pain in his hand’s and feet? Peripheral neuropathy (PN) is a common side effect of velcade. While PN is a difficult side effects of many chemotherapies there are evidence-based therapies that can reduce or eliminate PN.
In addition, the integrative therapies guide talks about the importance of reducing MM’s eventual resistance to velcade. “Multi drug resistance” is why MMers always relapse. Supplementation can slow or even eliminate it. The studies that discuss this side effect are linked to the appropriate paragraphs.
Lastly, I do not want to leave you and your dad with the impression that’s managing MM is only about supplementation. Yes, supplements are an important tool. But evidence-based non-conventional therapies such as nutrition, lifestyle etc. therapies can also play their part.
Let me know if you have any questions.
David Emerson
ReplyThank you for sharing your incredible wealth of knowledge. I am 1year out of an autologous stem cell transplant for Mutliple Myeloma and would like to know the dosage
of Curcumin, resveratrol, green tea extract and omega’s you advise and anything else
Important for MM. The bone healing has been the most difficult part with fractures in the spine. Otherwise I am active, biking, walking and working. Have not and will not do radiation.
All the Best, Joan
Hi Joan-
I am sorry to read of your MM but I am encouraged by your desire to make an effort to remain in remission. To answer your question “would like to know the dosage of Curcumin, resveratrol, green tea extract and omega’s you advise…” Several things. First off, I have been in complete remission from MM since ’99 and supplementing with those you mention for years now. I take a maintenance dose of each. By this I mean that I take even less that the doses recommended on the labels of each.
I have read both studies and personal accounts of MMers taking up to 8 grams of curcumin (1000 mg is 1 gram). I know of one MMer who is taking 2 grams of resveritrol. Further, omega 3 fatty acids can thin one’s blood. Those MMers also taking prescription blood thinners such as coumadin must work with their onc. to supplement with omega 3 fatty acids.
Lastly, while the evidence is spotty, there is reason to believe that certain supplements work synergistically with each other. Therefore it is difficult for me to advise doses for you. I would recommend you seeing a naturopath to work with who might be able to counsel you on this issue.
As for additional lifestyle MM therapies I recommend frequent but moderate exercise. My leg function is limited so I spend 30 min. on an elliptical 3 days a week and do light lifting the other three days a week. When I say light I mean light. The weight bearing aspect of this activity should help you manage bone health, healing, etc. But since you are active as you say you probably know more about this than I do.
I am conflicted about my own local radiation. Yes, it did cause long-term side effects. But local radiation also bought me about a year during with I pursued other MM therapies. I hope you never have to decide…
Other bone density supplements I take are Magnesium and bone mineral density
My diet is based on this TED Talk by Dr. Bill Li–
Let me know if you have any other questions and good luck Joan.
David Emerson
ReplyMy lifetime boyfriend just went through lung cancer surgery.they found a tumor the size of a grapefruit removed it along with 2/3 of his right lung. The tumor came back positive. Now they found 3 of his lymph nodes positive. He has done had his first round of Chemo and the injection the next day- it left him very sick . I Am his only caregiver and I’d like to get as much information as I can so that I can take care of him. He starts his radiation treatment s today also. 5 days a wk for 6 wks
ReplyHi Sylvia-
I am sorry to learn of your partner’s lung cancer diagnosis. However, it sounds as if you/he are making a good start with surgery to reduce the “tumor-burden.” As you know, chemo and radiation are your next steps. Since this is an email communication I must be direct. Be sure to ask any question you may have.
My perspective as a long-term survivor of an “incurable cancer” is to research and present integrative therapies. Meaning evidence-based therapies that both enhance the efficacy of the chemotherapy your man is undergoing AND reduce the toxic side effects that he is already experiencing.
For the record please understand that the chemo and radiation that his onc prescribed is 1) extremely toxic and 2) not curative. My guess is that with lymph node involvement your partners stage is 3a or 3b. When I say not-curative what I mean is that his odds of living 5 years is not good. And thats is allowing that he will develop significant collateral damage from the chemo and radiation.
If you are interested I can provide research-based integrative therapy for if he will undergo either gemcitabine, cisplatin, paclitaxel or some combination of those chemotherapies. If he/you are undergoing different chemotherapies then I can research accordingly.
An example of what I am referring to is linked below-
Curcumin and NSCLC-
Curcumin and cisplatin-
When you say “he injection the next day” what injection are you referring to? A chemotherapy?
Lastly, as for being his only caregiver, the advice I can give you is as follows-
1) please take care of your self mentally and physically- it is like the instructions you receive on a jet to place the oxygen mask over you nose and mouth first and then see to someone else.
2) the chemo, radiation, etc. will change his moods. Try not to take it personally. If he takes high-dose steroids he may be difficult to deal with. Smells, food, sleep, all difficult.
3) Caregiving is thankless. Ask my wife. But understand that we cancer survivors cannot make it without you.
Hang in there. Let me know if you have any questions.
David Emerson
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