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Multiple Myeloma an incurable disease, but I have spent the last 25 years in remission using a blend of conventional oncology and evidence-based nutrition, supplementation, and lifestyle therapies from peer-reviewed studies that your oncologist probably hasn't told you about.

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Myeloma 2.5 years Post Stem Cell- What’s next?

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Hi David, I hope you are keeping well. We have conversed a bit in the past. I am also non-secretory. I’ve now been post stem cell transplant for approx 2.5 years. So far so good, all is well and in remission.

My doctor is sort of pushing for maintenance chemo, lenalidemide (revlimid) .  He led me to believe that if I do eventually relapse and require another go round of stem cell they would be much more favorable to this if I was already showing willingness “to western medicine” (his words) by taking the maintenance.

I am not sure I would put myself through this process again but don’t want to slam the door on it either. I asked if there was any chance of building a resistance to the maintenance chemo and he said it wouldn’t matter as the treatment would be a different type of chemo anyways.

My concern is I didn’t tolerate the mix of chemo they gave me last time and I may end up back on stem cell.

My biggest question would be if you were in my shoes would you take the maintenance or not?

I’ve shied away from maintenance therapy until now. I lead a pretty decent lifestyle, take nutridyn curcumin, lots of vitamin/supplements. I’m not the greatest about avoiding sugar that would be my only really bad thing and I know it’s a biggie.

I’m kind of stuck here. I appreciate your opinion. Thanks very much, Kathy-

Hi Kathy-

I am well, thanks. Good to read you are doing well 2.5 years post ASCT.
I am not sure what your oncologist means by willingness to western medicine by taking maintenance. The issue, as I see it, is what therapy, what chemo cocktails, etc. help you live:
  • best quality of life- feeling your best- and/or
  • a longer overall survival (OS- length of life).
What I am saying Kathy, is that maintenance therapy and/or another ASCT may not be your only choices going forward. Your issue is how to achieve the longest, best life, right? Conventional oncology can often keep the patient alive while limiting his/her quality of life.
Let me add to the discussion a chemotherapy cocktail that your oncologist should be comfortable with. I believe this new combo will achieve your goals of enhancing your PFS and OS. This combination below, should be considered if and when you relapse- not now but later. 
Because you are not “refractory” to Revlimid and because you have not yet undergone darzelex/daratumumab (is this correct?), please consider a chemo cocktail that may well enhance your PFS, OS both with much less toxicity than another autologous stem cell transplant!!!
Remember that another ASCT will mean a lot more toxicity. Remember that more chemo at this time, is more toxicity and will come with negative side effects.
Keep in mind that I found the study below citing the clinical trial for this chemo combination two days ago. Timing is everything.
To summarize, the combination therapy trialed in the article should provide, on average, a long PFS and/or OS for you. Just as important, because you have already had one ASCT, you should be careful about how much additional chemo you undergo. 
I believe that this combo should satisfy all issues for you. Just my opinion. 
Let me know if you have any questions. 
Hang in there, 
David Emerson
  • MM Survivor
  • MM Cancer Coach
  • Director PeopleBeatingCancer

Recommended Reading:

Treatment Trio Soars in New Transplant-Ineligible MM

Triple-agent treatment led to skyrocketing overall survival (OS) and progression-free survival (PFS) in patients with newly diagnosed multiple myeloma (MM) who were ineligible for stem-cell transplantation, according to updated results from the MAIA trial…”

Newly Diagnosed Myeloma Triplet Scores BIG!

“And, since “[t]here were no new safety concerns,” the results “support the frontline use of daratumumab plus lenalidomide and dexamethasone” for patients with MM who are ineligible for transplantation…”

First and foremost, I have to go on record as saying that a clinical trial for MM that is testing a triplet chemo regimen is usual aka unheard of. I say this because conventional oncology is continuously adding toxicity to the NDMM (newly diagnosed MM) playbook. Toxicity is added to the playbook even for those people who are not eligible for an autologous stem cell transplant (ASCT). So doublet regimens become triplet regimens, triplet regimens become quadruplet regimens, etc. etc.

And with each additional chemotherapy that is added to the induction combo, comes additional short, long-term and late stage side effects aka adverse effects…

So let’s get specific:

  • If the NDMM patient begins his/her MM journey with a relatively safe induction therapy that takes him/her for a 5 or 6 year first remission
  • then another several years of relapsed, refractory therapies, (proteasome inhibitors such as Velcade, Kyprolis, Ninlaro???)
  • and then we bring in the heavy hitting therapies such as CAR-T cell therapy? 

Don’t forget that I am sketching out ten plus years of easy therapy plans above. Who knows what will come along over the next ten years…

As and aside, two of the greatest MM specialists, Robert Kyle and S. Vincent Rajkumar were both quoted as raving about this triplet therapy. Those two M.D.’s add real credibility to this finding as far as I’m concerned…”


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