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Thank you David for that. Just stumbled on your vid and I appreciate your insight. I was diagnosed with stage 3 MM, I’m 74, and I am halfway through the induction (chemo) phase with 3 months left to go. I am told I am a good candidate for a stem cell transplant. If you went through the stem cell transplant procedure, I would like hear your opinion about that. I have been told that it does not extend your survival time, but can delay the expected recurrence of MM. Any thoughts? Thank-you and God bless.
ReplyHi Frank-
Good news, bad news. First of all, one of the greatest accomplishments of MM oncology that I have witnessed is oncology’s ability to stabilize the MM patient whose MM is advanced aka stage 3. The bad news is that, according to research, the 75 year old body just doesn’t handle aggressive, high dose toxicity of an ASCT the way that average MM patient’s do.
It is your call of course but depending in your response to induction therapy, you have little to gain by putting your body through high dose therapy (ASCT). Novel therapies such as proteasome inhibitors, IMIDS, etc. have been shown to give the same average length of life with a higher quality of life.
Good luck,
David Emerson
ReplyI paid for a consultation but have now used it yet as we were heading back to mn for the summer from Arizona. How can I set up an appointment now? I was diagnosed with MGUS and treated for a solitary plasmacytoma.
ReplyHi Carol-
I replied to you directly via email.
Let me know, thanks.
David Emerson
Reply[…] Multiple Myeloma Response – CR or VGPR No Difference […]
ReplyThanks for this fabulous post! I’m in a FB group with you as well. I just want to thank you for sharing your wisdom and experience freely. As a person who is 53 and thankfully in the status of sCR, I hope and intend to follow in your footsteps as a statistical anomaly. But, I couldn’t do it without the crowdsourced knowledge of the community. Thanks for your support David!
ReplyHi Luanne-
Yes, I enjoy your posts. The young MM survivor needs to understand issues like this on. Well done on reaching sCR but those patients who don’t reach MRD or sCR or even CR shouldn’t aggressively treat themselves as a result. In my opinion anyway.
My dirty little secret is the I find MM to be interesting. I look forward to exchanging tips and info with you Luanne for decades to come.
thanks,
David
Reply[…] Multiple Myeloma Response-CR or VGPR- NO Difference […]
ReplyHi,
My mother has been diognised with MM in August 2020.
After 4 cycles of VRD her M-Spike was 2.2 where she then proceeded for autologous stem cell transplant.
30 days after transplants her m-spike is 1.5 and the Dr says she has VGPR.
She has just been told to do another 1 or 2 cycle of VRD.
After which to go on Maintance with 10 mg of revlimed.
What would your advise be post cycles ?
Hi Imran,
I am sorry to read of your mom’s MM diagnosis. After 4 cycles of VRD and an autologous stem cell transplant your mom has had a lot of chemo, a lot of toxicity for her body to manage.
It is you/your mom’s call of course but I can’t think of a study that shows that more chemotherapy (1 or 2 rounds of VRD) will increase length of life (overall survival). More chemo will definitely increase the risk of serious side effects and reduce your mom’s quality of life however.
In addition, maintenance Revlimid has been shown to increase the first remission but NOT length of life.
Consider evidence-based, non-toxic nutrition, supplementation and integrative therapies.
Let me know if you have any other questions.
David Emerson
ReplyDoes your book go into the nutrition, supplements and integrative therapies that you have used to prolong your survival?
Reply[…] Multiple Myeloma Response-CR or VGPR- NO Difference […]
Reply[…] Multiple Myeloma Response-CR or VGPR- NO Difference […]
ReplyHi, I am 45 and have had my first transplant and remission for two years, as of last week it is back.
I want to change my diet + i have started taking large doses of curcumin, DCA, CBD and Beta Glucan. If I sign up for the coaching will I get help with what to eat. I just need help!!
Hi Dave-
I replied to this via you email address. Hang in there-
David Emerson
Reply[…] Multiple Myeloma Response-CR or VGPR- NO Difference […]
Reply[…] Underreported in Autologous Stem Cell Transplant CR or VGPR Makes NO Difference in Newly Diagnosed Multiple Myeloma To Transplant or Not To Transplant In Multiple […]
Reply[…] CR or VGPR Makes NO Difference in Newly Diagnosed Multiple Myeloma […]
Reply[…] CR or VGPR Makes NO Difference in Newly Diagnosed Multiple Myeloma […]
ReplyI am 63 years old Indian men diagnosis Multiple Myeloma (Plasmacytoma D9 vertebrae, 15 days radiation in same area, in PET scan rest of body parts are normal) Oct 2018 with M protein 4.84 , Gamma 5.66, Beta 2 Microglublin 3814, Kappa light chain 52.8 Total protein 11.3 after 6 months maintenance therapy ( Boretezomob 2 mg once in a week)
after 6 months treatment new results are M protein 3.05 , Kappda & Lamda light chain is with in range (15.7 & 23.6) Beta 2 Microglublin is 3103, Gamma 3.35, Hbg 12.5
current medicine: Thalidomide daily and monthly 1 injection Idromet.
I need your suggestion/openion for the ongoing treatment and response of the treatment
Thanks.
Hi P.S.-
Your MM experience and questions are interesting and require a bit more research and thinking than usual. I will reply to your post tomorrow if that’s okay with you.
Hang in there,
David Emerson
Reply[…] Free light Chains and Myeloma Remission/Relapse? Multiple Myeloma Information CR or VGPR Makes NO Difference in Newly Diagnosed Multiple Myeloma […]
Reply[…] CR or VGPR Makes NO Difference in Newly Diagnosed Multiple Myeloma […]
Reply[…] Myeloma-“Partial Remission Post Induction Therapy- next steps? CR or VGPR Makes NO Difference in Newly Diagnosed Multiple Myeloma Wobenzym N- Integrative Multiple Myeloma […]
ReplyI have mugs while looking for FUO , nothing in ct scan for ribs until pelvic, only thing I have is being aneamic,10.6 and FUO which is being managed by 300mg nsaid in 24 hour period. Referred to hematologist and running series of blood work prior BMB to be sure if MM, specifically looking for b2m, lambda and kappa, m spike in 24 hour urine. Now what’s the prediction as 2 weeks waiting for results but not yet in. Say for worst case scenario what is the outlook with present day medication. I am of indian origin, 48 years and presently working in Cyprus. Does turmeric help in this case?
ReplyHi Sudip-
If I understand your question, you are asking me if are not sure of your diagnosis (at least for two more weeks) will it help you to begin curcumin supplementation? Yes- curcumin is a non-toxic, anti-oxidant, anti-inflammatory nutritional supplement. The issue you face is getting the most bioavailable formula. Plain curcumin is difficult for the body to absorb.
I will link a post below- be sure to scroll to the bottom of the post to read about bioavailable curcumin formulas. Let me know the results of your results.
Please consider either Pre-Myeloma or Multiple Myeloma cancer coaching.
David Emerson
ReplyHi David, first of all thanks for your response. it is at the moment confirmed as having SMM, m protein 1.5 mg/dl, kappa lambda ratio 68, bone marrow aspirate 38%, ldh normal, all other marker for renal, bone is normal. Beta2microglobulin is 2.48. Now in this stage do we have any conventional therapy to keep it this way or follow the wait and watch program.
ReplyHi Sudip-
Two different replies to your question “Now in this stage do we have any conventional therapy to keep it this way or follow the wait and watch program.”
The first reply is that conventional oncology considers both MGUS and SMM to be “blood disorders” or pre-MM. Not cancer. Therefore there are no drugs developed for these diagnoses.
The second reply is that there are evidence-based, non-conventiona therapies shown to reduce the risk of pre-MM advancing to full blown MM. Margaret of a blog called “Margaret’s Corner” has been living with SMM for, I think, 15 years now. On her site Margaret writes a lot about curcumin. There have been thousands of studies of curcumin and cancer. The problem for patients is that curcumin is not FDA approved and therefore is not a real or legit. therapy.
If you begin MM chemotherapy, you will start down the road towards MDR or multi-drug resistance. All MMers eventually develop resistance to all FDA approved chemotherapy regimens.
Please consider the pre-MM guides. https://peoplebeatingcancer.org/product-category/pre-myeloma/
Let me know if you have any questions.
David Emerson
Reply[…] CR or VGPR Makes NO Difference in Newly Diagnosed Multiple Myeloma […]
Replyhello, my son was diagnosed last june with multiple myeloma, had tumor at top of spine, and couple other lesions, had radiation and 4 rounds Chemo, then stem cell transplant in kingston ontario in january of this yr, overall he,s been doingwell, but was hoping to hear the word “remission” after his 100 post transplant, dr, does not use that term with this disease, they use” very good partial response” , although bloodwork all good at this stage, he would still like to hear that word, he is 49, with 2 young teen children, and has been very positive throughout this whole ordeal, do you have any positive words with regard to the VGPR results, dr talked about, all bloodwork, kidneys, liver, etcall good at this point, want to help support him with positive attitude,
ReplyHi Cheryl,
I am sorry to learn of your son’s MM diagnosis. However, as you read in the blog post you came in on, overall survival (OS) after ASCT does not depend on response. Your son can acheive a CR or a VGPR and still live a long OS.
Further, his age is young for MM patients but youth is a positive prognostic indicator (I was 34 when I was diagnosed). His relative youth means that he can withstand the rigors of chemotherapy better than the average 67 year old MMer.
I encourage your son to consider evidence-based non-conventional therapies such as anti-MM nutrition, nutritional supplementation, other therapies. Canada has created an exceptional medical marijuana system (much better than the US…). CBD oil has shown the ability to be both anti-MM by itself and well as synergistic to chemotherapies such as Velcade.
David Emerson
ReplyI was diagnosed December 2017. I’m on my 5th cycle of treatment and start my stem cell transplant on 16th April. My response at the moment is PR apparently heading towards VGPR. Could you let me know what alternative treatments you had as I would be really interested. Thank you
ReplyHi Kim-
Several things. I have researched and blog about many integrative, complementary and non-conventional therapies. These are different from the alternative therapy that I think you are referring to called antineoplaston therapy. I underwent ANP only because I had reached the end of the road where conventional MM therapy is concerned. If you are currently undergoing induction therapy and plan on then having an ASCT then you have reason to believe that you will reach remission and can continue with conventional therapies for years if not more.
I am happy to discuss the pros and cons with ANP. The topic is more complicated than can be discussed in a post. I’m only saying that you seem to be on a conventional path right now.
Let me know if you have any questions.
Hang in there,
David Emerson
Reply[…] speaking, MMers must think long-term. Studies show that achieving complete or very-good partial remission is not required for a long over… Meaning your induction therapy is probably going to be the first chemo regimen of several over the […]
ReplyI note in your interesting diagram that ASCT not listed as a therapy. Maybe you want to add it.
ReplyHi Michael,
ASCT is high-dose chemotherapy. Thanks for your input.
David Emerson
ReplyIk heet Alie ben 15 juni 61 jaar 6 jaar terug keer ik te horen dat ik smeulende multipel mylenom had vorige jaar werden twee kleine plekjes op mijn schedel gevonden .nu in november weer een vr scan en bloedprikken .
ReplyHi Alie-
I don’t speak your language however I used “google translate” to translate your comment as follows-
“My name is Alie on June 15, 61 years 6 years back, I heard I had smoldering multiple mylenom last year, two small spots on my skull were found. In November again, a fresh scan and bloodstains.”
Based on the above words, I do not see any question of yours. What do you want to know? What is your m-spike? Have you been given a stage of myeloma? SMM is considered to be “pre-MM” not full blown MM.
thanks and hang in there,
David Emerson
ReplyM protein level was over 500 and now is 15 after 3 cycles and before ASCT and continue with treatments.
I’m deferring ASCT. thoughts?
Hi Steve-
According to the study linked in the blog post that you came in on your overall survival (OS) does not depend on reaching complete remission after your induction therapy. Further, according to studies the timing of an ASCT also makes no difference to your OS. So you should be fine when you defer your ASCT.
As a MM survivor myself who lives with several long-term and late stage side effects from my induction therapy and ASCT I firmly believe that toxicity must be managed carefully. See how your body handles the toxicity of your induction therapy. Are you experiencing any side effect such as PN?
Having said the above I will go on to say that I think your M-spike should continue to fall if you undergo another cycle of induction therapy. Do you intend to have one or more cycles of induction therapy?
What was your stage when you were first diagnosed? How are you feeling in general?
David Emerson
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