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Hi again,
You mentioned that you didn’t get your childhood vaccinations after your ASCT. Interested as to what was your reasoning. Also I am interested in taking curcumin and omega 3 fish oil as I am currently on maintenance chemo after my ASCT. (10mg of Revlimid 2 weeks a month and Velcade 2x a month). Wondering what dosage of curcumin and fish oil to take and which brands you recommend. The Life Extension Super Omega 3 you link to seems to be unavailable. Also I would be interested in your diet recommendations as well.
I am wondering what my cancer doctor’s reaction will be if I suggest taking these supplements.
Thanks for your consideration and help.
God bless,
Michael
Hi Michael,
My decision not to re-vaccinate was not a conscious one. Re-vaccination was not standard-of-care in ’95 when I had my ASCT and my onc. did not mention it. The years following my ASCT were busy otherwise.
The brand of curcumin and omega-3 fish oils is Life Extension foundation. I switch between Super Biocurcumin and Curcumin Elite. You can order directly from the Life Extension Foundation website. I take the dose listed on the bottle.
My guess is that your oncologist will not want you to supplement. All board certified MD’s follow the FDA strictly. Nutritional supplementation has never been researched or approach by the FDA. We are on our own in many ways.
Hang in there,
David Emerson
Reply[…] Omega-3 fatty acids kill multiple myeloma and enhances Chemo […]
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Replyshould one continue to take curcumin and omega 3 tablets once your chemo has stopped.
ReplyHi David-
I have taken curcumin and omega 3 for years now. I have never seen a study that cites curcumin and omega 3 supplementation is contraindicated, the opposite in fact. Both supplements have been shown to be anti-MM.
David Emerson
Reply[…] Omega-3 fatty acids- Kill Myeloma Enhance Chemotherapy […]
Reply[…] Omega-3 fatty acids- Kill Myeloma Enhance Chemotherapy […]
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Reply[…] Omega-3 fatty acids- Kill Myeloma Enhance Chemotherapy […]
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Reply[…] Omega-3 fatty acids- Kill Myeloma Enhance Chemotherapy […]
ReplyDavid – recently diagnosed with MM – reading about adding curcumin with fish oil to enhance bioactivity of curcumin. Am on RVd therapy and doctor seem skittish about the fish oil and Revlimid – I’m seeing a very few articles about fish oil negating to some degree Revlimids action on T cells but also the positive interaction of Velcade with fish oil. Any thoughts?
ReplyHi Steve-
I am sorry to read of your MM diagnosis. Keep in mind that there is a long and growing list of both conventional (FDA approved) and evidence-based non-conventional MM therapies. I will email you the integrative therapies guide from the MM CC program to your email address-
1) You are correct- this article documents only 4 interactions with rev. and fish oil- the study does not specify they type of cancer-
2) omega 3 fatty acids have been shown to be apoptotic to MM and to enhance chemo to MM-
3) Regarding Velcade- yes, both curcumin and omega 3 fatty acids synergize with Velcade-
4) lastly, you are correct, curcumin is difficult to get into the blood stream. There are several formulas/brands, that research has shown are many times more bioavailable. I take a brand called Life Extension Super BioCurcumin. I will send you an article that summarizes the 5 different formulas.
I am biased of course but I recommend the multiple myeloma cancer coaching program. I will include the introduction with the integrative therapies guide.
What stage were you at diagnosis?
David Emerson
ReplyHi David…my friend sent me this link. I am only 52, and, currently diagnosed with “Smoldering Myeloma”. IGG is almost 4,000. My Anemia is 9.25. Calcium is ok, no kidney/renal involvement, and, no lyctic lesions, per an MRI. I have a local Oncologist, and, I did seek out an MM Specialist who I was not crazy about, and have not been back to see. There is NO MM specialist in my town, and I have to travel 6 hours round trip to see the MM specialist, and they won’t tell me on the phone whether or not she wants to start treatment…they want me to go BACK. This is a real hardship for me, as I have numerous other medical problems that make a 6 hour journey + appt. time a nightmare, BUT, I would do it IF she wanted to start treatment.
My local Oncologist does NOT think treatment is warranted at this time, BUT, would do it locally if the out of town Dr. wanted it done.
I just want to be clear. IS medical marijuana DESTROYING MM cells, or helping with the pain that eventually comes?
I take Vitamin C daily, drink 3 cups of green tea and take 4,000 IU of Fish Oil. I also take Vitamin D, and a Multi w/Iron.
How long have you had MM? The specialist told me that the life expectancy was 2-3 years, possibly up to 5 w/new drugs. I cried all the way home. (I know, I don’t HAVE it, but some day, I will, and if I can PREVENT to “onset”, I want to.)
Can you think of any other suppliments,and, how does one go about getting medical marijuana? I would NOT want to smoke it…I would take it in a candy form.
Thanks so much…you are a Godsend from all I’ve read!
ReplyHi Cathy-
I am sorry to read of your health challenges. However I do think you have many options to consider. Also, this is a long email. Sorry. But there is lots of important info for you to learn and think through.
First and foremost, 52 is young as MMers go. I say this to explain that as a relatively young person you can pursue many evidence-based therapies that are cytotoxic to MM.
Smoldering Multiple Myeloma is pre-MM. I will try to construct an argument below for why you should not undergo active chemotherapy until you, if ever, are diagnosed with full blown MM. Are you comfortable seeing the local oncologist only for regular blood testing?
Regarding medical marijuana. The studies/evidence for CBD oil (cannabidiol) and MM is thin. My understanding is that it is THC, the component that gets a person high, that kills MM. However there are other components (cannabinoids) that studies have shown enhance specific MM chemotherapies and are general immune boosters.
Your supplementation is fine as far as it goes. There are many evidence-based supplements that research has shown kill MM. I take several. I research and follow a combination of non-toxic anti-MM therapies including supplementation, nutrition, lifestyle, bone health and mind-body.
I was first diagnosed with MM in 2/94. I achieved complete remission by April of ’99 where I have remained since. Again, I credit a comprehensive anti-MM lifestyle that I will outline below. Since you are SMM or pre-MM you may want to skip items 1 and 2. But know that integrative therapies (enhance toxic chemotherapy while reducing toxicity) are available to you should you ever need them.
The official mean or average MM life expectancy is 3-5 years. Yes, a diagnosis of SMM is scary but I firmly believe you should be thinking decades of managing your MM. Yes, I said managing because MM is incurable.
The approach that I support in outlined in 1-8 below. I research and provide evidence-based anti-MM and anti-cancer therapies in all areas listed below. In short, the therapies below are what I have been doing to keep my MM in complete remission. While I have not undergone chemotherapy for years now I do all the other therapies outlined below.
1) Learn about and understand FDA approved chemotherapies for MM- Velcade, Revlimid, Melphalan,Doxorubicin, etc. All have strengths and weaknesses. All cause short, long-term and possibly late stage side effects. Understanding the possible side effects will enable you to take therapies to either reduce or prevent the collateral damage caused by a specific chemotherapy.
2) Learn about and understand those therapies that are “integrative” to those FDA approved anti-MM chemo therapies. An example would be omega 3 fatty acids enhancing Velcade-
3) Learn about and understand those non-conventional therapies that studies have shown are cytotoxic (kill) multiple myeloma. An example would be resveritrol.
4) Learn about and understand anti-myeloma nutritional therapies- again evidence-based.
5) Learn about and understand those lifestyle based therapies that are cytotoxic to MM.
6) Learn about and understand those therapies, both conventional and non-conventional, that are shown to strengthen bones, enhance bone health.
7) MM Social Media- over the years I have found that social media (Facebook groups, On-line chat, Forums, etc,) provide invaluable support. I provide a list of online groups that I how found to be beneficial for the newly diagnosed MMer.
8) Learn about and understanding evidence-based mind-body therapies that are anti-cancer. These therapies may seem a bit touchy-feely to some people but my role is to do the research and experience, present the information to you and let you decide.
Cathy, I am both a long-term MMer and a MM cancer coach. As a member of PeopleBeatingCancer I provide specifics above and continually research and update these therapies. It is in my own best interest to do so obviously.
To learn more about MM cancer coaching please go to-https://peoplebeatingcancercoaching.org
Please let me know if you have any questions.
David Emerson
ReplyHi David,
Female, 67, in general good health except hypothyroidism which has just been diagnosed together with MM two weeks ago. Currently, there is no bone pain and HGB, blood calcium & kidney indicators are within range.
The diagnosis is based on:
The total protein is 9 g/DL (normal 6 -8.4), and IgG is 3300 (650-1600). Bone marrow biopsy shows “plasma cell neoplasm; lambda restricted, comprising 50% marrow cellularity” – what does that mean? Also “FISH was positive for the IGH/FGFR3 t(4:14) gene in 3 of the 200 interphase cells examined (1.5%)” (how bad?)
The oncologist’s prescription: immediate Velcade injection and Revlimid pills, and later bone marrow transplant. Other suggestions from learned but non-medical persons are “natural” supplements including:
– Chinese herbs Reishi & Cordyceps Mycelium extracts
– 3300-6600 mg fish oil, i.e. 1350-2700 EPA & 750-1500 DHA
– 3000-6000 mg MSM
– 3000-4500 mg vitamin C
Are these values too high? Can these be taken with Velcade & Revlimid. I read on the web that high dose of vitamin C will interact negatively with Velcade. Your thoughts? Thanks.
ReplyHi Catherine-
I am sorry to learn of your MM diagnosis. Good to read that you have no bone pain, and that your kidney function is normal. If your blood calcium is normal also it indicates that your bones are in good shape. All good.
While your induction therapy of Velcade, and Revlimid should stabilize and hopefully bring down your counts to partial or complete remission, you should focus on 1) your relapse and 2) possible side effects such as peripheral neuropathy.
I am both a long-term MM survivor and MM cancer coach. I will list those therapies that I do to live an anti-MM lifestyle and keep me in complete remission. I recommend that you read these areas of therapies as well to see if the may fit into your own anti-MM lifestyle.
Please understand that conventional oncology considers MM to be incurable. While chemotherapy can be good at reducing MM in your blood temporarily, MMers always relapse. Always. Further, chemotherapy is very toxic and therefore must be managed carefully prevent long-term side effects.
My experience indicates that MMers need a broader approach to beat their multiple myeloma.
I was diagnosed with MM in February of 1994 and reached complete remission in 4/99.
I encourage MMers to work both with conventional (FDA approved) and non-conventional therapies.
The approach that I support in outlined in 1-8 below. I research and provide evidence-based anti-MM and anti-cancer in all areas listed below. In short, the therapies below are what I have been doing to keep my MM in complete remission. While I have not undergone chemotherapy for years now I do all the other therapies outlined below.
1) Learn about and understand FDA approved chemotherapies for MM- Velcade, Revlimid, Melphalan,Doxorubicin, etc. All have strengths and weaknesses. All cause short, long-term and possibly late stage side effects. Understanding the possible side effects will enable you to take therapies to either reduce or prevent the collateral damage caused by a specific chemotherapy.
2) Learn about and understand those therapies that are “integrative” to those FDA approved anti-MM chemo therapies. An example would be omega 3 fatty acids enhancing Velcade-http://www.ncbi.nlm.nih.gov/pubmed/25277647
3) Learn about and understand those non-conventional therapies that studies have shown are cytotoxic (kill) multiple myeloma. An example would be resveritrol. http://www.ncbi.nlm.nih.gov/pubmed/17049120
4) Learn about and understand anti-myeloma nutritional therapies- again evidence-based.
5) Learn about and understand those lifestyle based therapies that are cytotoxic to MM.
6) Learn about and understand those therapies, both conventional and non-conventional, that are shown to strengthen bones, enhance bone health.
7) MM Social Media- over the years I have found that social media (Facebook groups, On-line chat, Forums, etc,) provide invaluable support. I provide a list of online groups that I how found to be beneficial for the newly diagnosed MMer.
8) Learn about and understanding evidence-based mind-body therapies that are anti-cancer. These therapies may seem a bit touchy-feely to some people but my role is to do the research and experience, present the information to you and let you decide.
To learn more about MM cancer coaching please click https://peoplebeatingcancercoaching.org
Please let me know if you have any questions.
David Emerson
ReplyThanks for your reply! I am caught between the conventional “uncurable” line, and reading about how others like you are “cured”. Even though i am using chinese herbs and accupuncture, its with the velcade…so grateful for being better but questioning. Wanting to learn more, will keep reading blog. I have lots of antioxidants in cabinet…i thought they dont do well with the chemo? Or is.that just green tea? And should stuff start after dr says in remission?
ReplyHi Ellie-
A couple of things. First and foremost, while conventional oncology considers me “cured” because I have lived with my cancer for more than 5 years (their definition of cured) I must tell you that I will never consider myself to be cured of MM. Since MMers can live with NO SIGNS of MM in their blood for years only to relapse and die, I live with the assumption that a relapse can happen to me too.
I work to prevent a relapse, prevent a secondary cancer, prevent a side-effect related death but the fact is, we MMers can never consider ourselves to be cured.
When you say “so grateful for being better but questioning…” You are describing me as well. Yes, living with cancer does get tiresome, frustrating, depressing, etc. But what choice do we have? Feeling grateful and working with other cancer patients, survivors and caregivers gives me a sense of purpose. So I am okay with living with cancer.
As for your other question ” I have lots of antioxidants in cabinet…i thought they dont do well with the chemo? Or is.that just green tea? And should stuff start after dr says in remission?”
You are correct. Some antioxidants “don’t do well with chemo” such as green tea and Velcade. And many do well by enhancing the efficacy while reducing the toxicity of conventional chemo. Curcumin and resveritrol both enhance Revlimid for example.
My advice to you is to email me when you are thinking about chemotherapy.
And your last question “And should stuff start after dr says in remission?” Again, that depends on the chemotherapy in question. If you are talking about Velcade and green tea extract, yes, stop green tea until AFTER you finish Velcade therapy. If you are talking about curcumin and Velcade, you will enhance the efficacy of Velcade by taking curcumin WHILE to take Velcade. See the study linked below.
Curcumin in combination with bortezomib synergistically induced apoptosis in human multiple myeloma U266 cells
Let me know if you have any more questions.
Hang in there,
David Emerson
Replyi was diagnosed in september, with MM, after a difficult start (pnuemonia) i am doing Velcade once a week, and my numbers have gone way down (lambda light chains) and my hemoglobin is remarkable normal. I am using chinese herbs from my herbalist and credit it this with the great progress, all of working together. My bones have compression fractures and demineralization. Calcium, boron, magnesium and D3 were suggested to me by chiropractor. I take a few supplements, but not daily, besides, calcium and magnesium just started. Anything to do with bones that you know of? i am not eager to do the Zometa, i haven’t met with the transplant team…can i use fish oil that has been in my fridge for a year or so, that I bought in Walgreen’s? or should i just start fresh…
ReplyHi Ellie-
I am sorry to read of your MM diagnosis but I am glad to read that your are responding well to Velcade. As for therapies to strengthen bones, yes, there are many. I will link information for you below. Keep in mind that as a long term MMer myself I do everything discussed below. My MM presented in ’94 in my fifth cervical vertebra and I focus on keeping my bones healthy.
Yes, I underwent bisphosphonate therapy for several months in the beginning. While I share your dislike of conventional therapies, bisphosponates have few side effects and provide bone strength faster than anything I will list below. And sometime we need immediate therapy.
Yes, I supplement with D3, magnesium but not calcium or boron. All have been shown to strengthen bones.
Melatonin for Age-Related Bone Loss
Exercises to Strengthen Bones-
I recommend frequent, moderate exercise for all MMers. I do cardio 3 time per week and light weight lifting 3 time weekly.
Let me know if you have any questions.
David Emerson
ReplyEllie-
I found two more studies about the positive effect of nutritional supplementation and bone health.
The effect of six months treatment with a 100 mg daily dose of dehydroepiandrosterone (DHEA) on circulating sex steroids, body composition and muscle strength in age-advanced men and women.
The effects of lycopene intake and exercise on bone health in young female rats
David Emerson
ReplyHi,
I am 53 years old. I have been treated for MM since beginning of 2012 with Velcade, Dexamethason, etc. I went into remision from beginning of 2013 and until September 2015 when I ended in hospital for 2 months because I was agressively attacked by the MM throuhg the MM on my skull that pressured on my brains throuhgh my skull. My M-protëin was level 10 and extremely agressive.
I had 5 times heave radiation of that part of my skull, right on top of my head. And I was immediately put on treatment with Velcade, Dexamethason, Ondnsetron and Cyclophosphamide…
I do eat since I am being treated again a lot of Salmon, mackarel, peanut butter, red grapes, raisins and now I started to take CBD-oil of 4% 2 times a day 2 drops under my tongue. My son brought me this… Bless him 😉
Would it be better to go to the health store and get me Omega 3 capsules as well as capsules with the rest like Curcumin and Resvitrol and what would their dose be ?
After four sessions chemo with 2 a week Velcade my M-protein went down from 10 to 2 and I hope to get it down to zero in the coming 2 sessions that will end eventually in January. Februari 12th I go into hospital for stem cell transplantation.
How do I continue from there?! I will get no Velcade anymore… I get the first two days a high dose of Melfalan.
Can I still use the CBD oil and how much should I take ? And what about the rest of the stuff?
I want to stay in remision longer than the last time, and I definately want the MM to be far less agressive than the last time.
Many thanks,
Helen
ReplyHi Helen-
I am sorry to read of your MM diagnosis though I am glad to see that you respond to chemo and radiation. I will list your questions below in order to address each.
1) “Would it be better to go to the health store and get me Omega 3 capsules as well as capsules with the rest like Curcumin and Resvitrol and what would their dose be?”
I assume from your question that you are comparing dietary sources of anti-MM (“Salmon, mackarel, peanut butter, red grapes, raisins…”) to nutritional antioxidant supplementation such as omega 3 fatty acids, curcumin and resveritrol. As a long term MMer myself I do both, eat as many anti-MM foods as I can AS WELL as supplement with curcumin, resveritrol, omega 3 and grape seed extract.
I buy my supplements online as I find it cheaper and easier than going to the store. But this is your choice.
2) as for the dosage, I recommend following the instructions on the label. A number of studies indicate that the supplements you mention are synergistic- meaning they enhance each other.
3)”After four sessions chemo with 2 a week Velcade my M-protein went down from 10 to 2 and I hope to get it down to zero in the coming 2 sessions that will end eventually in January.”
You are responding to chemotherapy and I’ll bet that your M protein will go to 0 as you hope with the addition of the supplements we discussed. Omega 3 fatty acids, curcumin, resveritrol and CBD enhance the MM killing action of Velcade as pointed out in several blog posts on pbc.
4)”Can I still use the CBD oil and how much should I take?”
There is very little information on the Internet about CBD oil and dosages relative to MM and chemotherapy. CBD has been shown to enhance Velcade as well as kill MM cells but I have not found dosing information in any of the studies. I know of no reason why CBD would interfere with any chemotherapies.
5) “I want to stay in remision longer than the last time, and I definately want the MM to be far less agressive than the last time.” My experience as a MM is to continue non-conventional therapies AFTER your ASCT. Meaning the supplementation we discussed, the nutrition we discussed, frequent, moderate exercise (a brisk walk daily), all should work to enhance your immune system in addition to fight MM cells hiding in your body.
Let me know if you have any questions.
Hang in there.
David Emerson
ReplyDavid I’m after getting information on taking blood thinners and supplements. It was currently discovered that I have a blood clot in my lung. I have been put on Two needles a day for 14 days then down to one needle for several months. I am trying to get ready for a SCT before Xmas..
I currently drink green tea and take curcumin…
Can u give me some information as to what I should stay away from…
Thank you
Olga
ReplyHi Olga-
Sorry to read of your blood clot. It is common for cancer patients to develop blood clots. Oncology believes that both cancer AND chemo can cause a clot- Both change a person’s blood viscosity. I developed a pretty serious deep vein thrombosis about a year after I completed my ASCT in ’95.
I’m not sure what you mean by “have been put on Two needles a day for 14 days then down to one needle for several months.” I will assume that you mean that you are having heparin injected in you to thin your blood.
Regarding your question “Can u give me some information as to what I should stay away from…” Yes I can but also be sure to talk to your onc. about what to stay away from. I think your oncologist will require you to have your blood tested monthly. I think the test is called a “PTT” and “PT.”
Please keep in mind that certain supplements can thin blood naturally. Omega 3 fatty acids aka fish oil and curcumin in particular. I believe that certain foods can change blood viscosity but I am not too knowledgeable about which ones to avoid.
I think your oncologist will tell you that green leafy veggies contain vitamin K which thickens you blood. Please confirm with your onc.
If, because of your blood clot, you have to stay away from both fish oil and curcumin AND you are preparing for a stem cell transplant in December I encourage you to “Prehabilitate” through lifestyle therapies such as:
1) get plenty of sleep/rest
2) daily, MODERATE exercise such as taking a brisk walk daily
3) proper hydration- plenty of clean water-
4) eat fruits, veggies, whole grains-
I believe that vitamin D3, green tea extract and resveritrol are okay. But again, check with your oncologist.
Let me know if you have any other questions. Good luck.
David Emerson
ReplyHi Jerry-
Re your question about “natural” treatments for multiple myeloma. Studies combined with the experience of MMers, me included, cite several different approaches to what I take to mean non-toxic therapies-
1) Integrative- meaning antioxidant supplementation to enhance the efficacy of a chemotherapy such as Revlimid or Velcade while reducing the toxicity.
2) Alternative- meaning therapies exclusively that are non-toxic.
3) Complimentary- these are therapies to work right along side of conventional chemotherapy.
To do justice to a discussion of which of these therapies is right for you or a MMer you are caregiving I need to know what stage at the original diagnosis, any symptoms such as bone pain, kidney involvement, etc. age and general health of the MMer.
I don’t mean to sound nosey, I am just trying to be thorough. Let me know if you would like to discuss any/all of the above.
Take it easy,
David Emerson
Reply