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Is It Correct That Myeloma Will Relapse Regardless Of Treatment Options (including Stem Cell Transplant)?

A MyMyelomaTeam Member asked a question 💭
Dallas, TX

If so, why bother with an expensive, invasive and highly risky procedure such as stem cell transplant which can damage the bone marrow considerably and expose a patient to infections?

August 5, 2023
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A MyMyelomaTeam Member

Well, I had my SCT in 2018 and am still in remission. That's 6 years and holding! Of course I worry about relapse, but so far so good!

August 5, 2023
A MyMyelomaTeam Member

I also had my SCT in 2017 and still in remission going on 6 years. I’m not saying it was an easy road but I’m glad I did it and would again if I needed to. I guess it’s everyone’s choice and there are some that it isn’t the one for them

August 5, 2023
A MyMyelomaTeam Member

Thank you for the response.
After 3 months of treatment, I have "achieved" remission and opted to not do the transplant despite the oncologist insisting on it. I have stopped all MM treatment and will be monitoring the test results monthly. If a relapse occurs, depending on the remission duration, I might get same treatment (Velcade/Dara/Dex/Revlimid) or equivalent 1-2 months to bring the numbers down and continue on this path of no treatment. That's the plan for now.
It was educational to study the bone marrow "universe". SCT seemed like a sledgehammer destroying a small insect while permanently damaging several innate capabilities (in addition to the HSCs). I will keep delaying the SCT decision as long as I can, hopefully, forever.
I have added a daily supplement of turmeric/curcumin and an hour's worth of rigorous exercise with vegetarian diet to the regimen, with zero MM medications. I will update the group of any significant change.

November 29, 2023
A MyMyelomaTeam Member

Thank you for the response.
The commonly accepted definition of remission - absence of M proteins as seen in blood tests - does not imply total absence of malignant cells. Which means the malignant cells can eventually reach a critical level to produce detectable M proteins, putting the patient in relapse.
My hypothesis is that the journey from remission to relapse resembles the behavior of smoldering Myeloma and should potentially take several years.
My other hypothesis is that G-CSFs used in stem cell collection prior to SCT can stimulate and trigger the growth of malignant cells and that attempt to "completely clean up" the marrow might disturb the marrow to the point of possibly increasing the growth of malignant cells.
So, that is my basis for the path I am taking. I would love to hear comments from experts/oncologists on this (mine is too busy treating a large number of patients).
BTW, the genetic factors contributing to (high) risk appear to be indecisive at this time based on several studies I have come across.

December 2, 2023
A MyMyelomaTeam Member

It's wonderful to hear of the myriad of successes with SCT but there are also a myriad that didn't achieve remission, got very sick after SCT and wouldn't do it again. And there are those who opted not to have SCT 15 years earlier and are still enjoying good qulity of life in treatment. It's a terrible decision to have to make and very confusing. As the other comments said, it's an individual choice.

I consulted with a specialist outside of the cancer treatment center I was going to that wanted the SCT. The doctor I consulted with outside the treatment center system interpreted my situation differently. I left the treatment center and I'm now being cared for by the MM specialist I consulted with. Best decision I could have made. I'm no longer a number or set of criteria on a spreadsheet. I'm a person with unique characteristics to my cancer and I am treated as such.
MM treatment should not be a one-size-fits-all situation. We are all unique in our diagnosis, comorbidities, lifestyles, etc, and for me, that works.

November 29, 2023 (edited)

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