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Recently Diagnosed or Relapsed? Stop Looking For a Miracle Cure, and Use Evidence-Based Therapies To Enhance Your Treatment and Prolong Your Remission

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 Maintenance Therapy

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My understanding is that the FDA approved standard-of-care therapy plan for newly diagnosed multiple myeloma (NDMM) is induction therapy, autologous stem cell transplantation (ASCT) followed by maintenance therapy.

I always thought that revlimid (lenalidomide) was the chemotherapy that was used most often as maintenance therapy. Though I can’t find published statistics, the actual patient feedback below indicates otherwise.

While ASCT has not been shown to improve overall survival (OS) for myeloma patients, I believe that maintenance therapy has, in fact, been shown to improve both:

  • progression-free survival and
  • overall survival 

The second study linked below offers a useful definition or purpose for myeloma maintenance therapy.

“A major aim of maintenance therapy is to significantly delay disease recurrence that would require re-treatment and preferably to prolong overall survival (OS) without incurring excessive toxicity.”

Because I always a bit skeptical of myeloma clinical trials, I posted a question about maintenance therapy for myeloma in an online MM group. I wanted to hear from MM patients who were undergoing myeloma maintenance therapy. I was surprised to read of the variety of chemo regimens being prescribed.

I have pasted five (5) comments below that I think represent different views or perspectives about myeloma maintenance therapy.


“I feel this is a discussion between you and your specialist. I would love to not have any maintenance. I did 8 rounds of quad therapy without ASCT. I have 2 high risk features and data does support maintenance therapy for high-risk patients. I plan to take this approach however continue to support myself with naturopathic therapies.

If for some reason I stop tolerating the MM drugs or feel it’s no longer in my best interest we will deal with it then. Until such time, I’ll keep a positive mindset and BELIEVE I’m making the best choices for my highest good. I always follow my intuition and listen to my body.”


“I have been on Darzalex maintenance since October 2021 I’ve been in MRD almost the full time. My m-spike is .05 my doctors say I have no m-spike the treatment causes the .05.

I meet with my Moffit oncologist in two weeks to decide what if any treatment I will have from here on. Oh yea I’m also on Revlimid 10 mg have been on that since January of 2021. I will probably be on that for as long as I live. You know another 20 years or so. Hey a guy can be optimistic.

I wound love to be off of all treatments but I think it might be a big gamble I’ve had no side affects from the treatments except for some neuropathy in my feet. Don’t want that to get worse for sure.”


“My first remission was CR. I did maintenance therapy of Velcade for 1.5 years until it stopped working March of 2023. I have yet to get back in remission after failing Revlimid and isatuximab. I’m now on Pom and Empliciti and will have labs in a week. All this to say

  1. I would have loved to get 2 years on anything and
  2. I can’t imagine not doing any maintenance unless I did Car-T because I was barely out of remission and had severe bone involvement within a few months.

There hasn’t been time to find a working drug combination to put me back in remission YET! I’ve experienced how unpredictable MM is as well as how fast it can get the upper hand.”


“I am without maintenance therapy, in summer I will be 5 years after ASCT, I received stringent remision,  I live three years with 0 M-spike , but then M-spike started slowly grow, up to 0.5 g/dl right  now.”


“I’m on Revlimid 10mg 2 weeks on 1 week off. Monthly Darzalex.” 


Though five comments in an online MM group is hardly evidence-based medicine, I think the MM patients offer  experiences that indicate less about specific chemotherapy regimens for myeloma maintenance therapy but offer two more important aspects-

  • longer overall survival and
  • without incurring excessive toxicity

Are you a MM patient or survivor? What is/was your experience with myeloma maintenance therapy? Do you think it increased your PFS aka progression-free survival (length of your first remission)? Did you experience any side effects?

I am curious to read about the good, the bad and the ugly of myeloma experiences. Send an email to David.PeopleBeatingCancer@gmail.com 

Thanks,

David Emerson

  • MM Survivor
  • MM Cancer Coach
  • Director PeopleBeatingCancer

Future Directions in Maintenance Therapy in Multiple Myeloma

“Randomized phase III clinical trials have helped establish lenalidomide maintenance as a standard of care. However, as nearly all patients will eventually experience disease relapse, there continues to be significant interest in developing novel maintenance strategies to improve upon lenalidomide maintenance. In this review, we summarize the available evidence for the use of

  • immunomodulatory drugs,
  • proteasome inhibitors,
  • and monoclonal antibodies.

A major aim of maintenance therapy is to significantly delay disease recurrence that would require re-treatment and preferably to prolong overall survival (OS) without incurring excessive toxicity…

Single-Agent Maintenance Strategies

  • Immunomodulatory Drugs
  • Proteasome Inhibitors
  • Daratumumab

Combination Therapy Strategies

  • Lenalidomide + Bortezomib
  • Lenalidomide + Ixazomib
  • Lenalidomide + Carfilzomib
  • Lenalidomide + Vorinostat
  • Lenalidomide + Anti-CD38 Monoclonal Antibody Therapy
  • Lenalidomide + Elotuzumab

Second Primary Malignancies

Optimal Duration of Maintenance Therapy

Conclusions- While post-ASCT maintenance therapy with lenalidomide continued until disease progression is the current standard of care based on the available clinical trial data, ongoing studies will likely lead to practice changes. The most likely next step will be to incorporate anti-CD38 monoclonal antibody therapy into the maintenance setting, but it remains to be determined whether all patients will benefit from multi-agent approaches. Presently there are not sufficient data to guide the selection of lenalidomide/anti-CD38 monoclonal antibody therapy for specific patient populations (e.g., high-risk cytogenetics or MRD-positivity post-ASCT) outside of the context of a clinical trial.”

Bortezomib Maintenance Therapy as a Standard of Care Provides Favorable Outcomes in Newly Diagnosed Myeloma Patients: A Multisite Real-Life Study

Background: Lenalidomide and ixazomib maintenance improve long-term outcomes in newly diagnosed multiple myeloma (NDMM) patients. However, there is less evidence to support bortezomib (BTZ) maintenance therapy, and real-life data on maintenance are scarce. We investigated the efficacy and safety of BTZ maintenance therapy in NDMM…

Results: A total of 105 patients were identified, 58 of whom had received a transplant (transplant eligible) and 47 who had not (not transplant eligible). During BTZ maintenance therapy,

  • 96% had one or more adverse event,
  • 11.5% had grade 3 or higher adverse events,
  • and 11.5% discontinued treatment due to toxicity.

Median progression-free survival (PFS) and overall survival were 45 and 91.5 months, respectively; 4-year survival was 88%. Adverse cytogenetics was associated with worse PFS (24 vs. 46 months, P = .001). In subgroup analysis, adverse cytogenetics were associated with worse PFS (P < .001) and OS (P < .001) among transplant-ineligible but not transplant-eligible patients.

Conclusion: Analysis of multisite real-life data showed that BTZ maintenance therapy is safe, well tolerated, and effective. Median PFS was similar to that reported with alternative maintenance strategies. Our findings further support its use among patients with adverse cytogenetics, it may also be relevant for patients with lenalidomide-intolerant disease.”

 

 

 

 

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4 comments
Kathryn Guillaum says yesterday

And onward>>>>>>

Reply
    David Emerson says yesterday

    Hey Kat- hope you are well-

    Reply
DiAnna says 7 days ago

I started out on darzalex from Nov 2023 till Feb 2024 it was rough the blowouts weren’t controlled you never knew when it was going to happen. Last from one treatment to the next one. Started on rev 10mg on for 14 days off 7 days I have runny stools 24/7.Get excited for normal BM.

Reply
    David Emerson says 7 days ago

    Hi DiAnna-

    Not to be too nosey but what are “blowouts?” As for diarrhea, that is probably the most common side effect of revlimid.

    Hang in there,

    David Emerson

    Reply
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