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Bmt

A MyMyelomaTeam Member asked a question 💭
Williamsport, PA

Does anyone here feel a bone marrow transplant is something they don’t feel good about doing. Seems most people have them and as I’m recouping from double hip replacement I’m not able at this point but sooner or later I need to make the decision but everything inside of me says no. Is this God speaking or me. I’ve been praying for the right answer and the doc keeps pushing

February 1, 2023
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A MyMyelomaTeam Member

What’s your status with your Labs and treatment - have you finished Induction and on maintenance or still doing induction?

How’s your MSpike?

There’s some where induction can Not stabilize their Labs to normal with a low MSpike such as 0.3 or less and Ig levels that are normal or below normal (happens due to induction meds). Also there are those that relapse during induction. In those cases, going directly to a SCT is probably very important to do right away (seek your oncologist’s guidance).

When induction can get you to normal Labs, it’s mostly likely viable to postpone to regain your health to be strong enough to handle the burden of the SCT, if you choose to do it.

My Consulting Doc at Johns Hopkins told me Now or three years from Now wasn’t going to change my Overall Survival Rate (a special term regarding life expectancy). He made this statement due to me getting to normal Labs in 6 weeks from starting induction. At 12 weeks I transitioned to maintenance without a SCT. About 4 months later, I tested MRD Negative. The maintenance meds (lower dose less frequent) finished what induction started, without a SCT.

Though it was my choice at 12 weeks to Postpone my SCT, now at Negative, I have no need for a SCT unless future Labs indicate otherwise. Hopefully by then there will be better treatments like the bispecifics.

Trust your Labs and work with or Consult with a MM Oncologist Specialist to help you through this choice and process.

All the Best

February 3, 2023
A MyMyelomaTeam Member

I do not qualify for transplant yet, but I am pining for the day when it becomes an option for me. I am definitely going with the transplant. I want the unhealthy cells in my bone marrow to be attacked with a vengeance. I am going to take all of the help that is offered provided that it has worked for others. I see you as being lucky to have this option. But it’s your life and your choice and I wish for your choices to be the right ones for you.
God bless. ❤️🙏

February 1, 2023
A MyMyelomaTeam Member

Great question Kim. I chose not to have the procedure. I feel I made the correct decision for me based upon overall rewards vs complicated procedure and problems.

February 1, 2023
A MyMyelomaTeam Member

10 -6 is to say zero cancer per million cells tested. Its a result status from the clonoSEQ test. It means Complete Remission, MRD Negative.

May 18, 2023
A MyMyelomaTeam Member

...Continued

The latest multi-year Case Studies are showing that for people at 10 -6, who have maintained this level for 2 years on maintenance meds, they are now recommending that its safe and preferred to go to Monitoring without Meds for a better quality of life and to avoid the secondary risks that the MM Meds produce. This is per the ASH 2022 MRD2STOP Presentation - search for MRD2STOP - there's a YouTube Video.

I'm not saying don't get a SCT. I'm just saying that plenty of people do not get a SCT and they're doing very well. Make a very well informed decision. I did not want to lose my life time gained immunities, spending 6 months to a year to regain my strength (some are saying they never do), be at a higher risk of pneumonia while I rebuild my marrow (highest reason for people dying due to MM) and go through getting my childhood shots again. If I had not reached MDR Negative through Maintenance, an SCT would have been an appropriate consideration but I knew I needed time to rebuild myself for that process. If I ever relapse, a SCT is still available for me later.

An interesting item - when I said I was going to Postpone, they wanted to leave me on Full Induction Meds until such time that I got a SCT. I said - No - I want to be on Maintenance Levels and frequency. I went to the sites of Darzalex, Velcade, and Revlamid. They all had charts of reducing levels to maintenance mode. I had to push this as my Requested Mode. Then two months into Maintenance, I had to insist on dropping Dex and Velcade due to very bad neuropathy..

All the Best

February 6, 2023

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