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Real members of MyMyelomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Just Want To Know For Those That Did Not Get Or Chose Not To Get The SCT How Is Your Remission Going And How Long You Been In Remission?

Just Want To Know For Those That Did Not Get Or Chose Not To Get The SCT How Is Your Remission Going And How Long You Been In Remission?

Just want to know how long your number stay down without SCT. Is it months or years?

posted February 16
A MyMyelomaTeam Member

If treatments, meds, new and old, keep the numbers down, then why go through this procedure and wind up on the same maintenance regime ?

posted February 28
A MyMyelomaTeam Member

I chose not to have the SCT at this time, and at my last appointment my oncologist said that my numbers are looking good and still declining in the right direction. Prayerfully in the next 2 to 3 months I will be where I need to be. Praying that it is sooner. Yes, this was a tough decision but it wouldn't correct what my major issue is which is my back pain so I chose not to put my body through all that extra stuff and still will be in the same state. I will still be on the same regimen with or without the SCT.

posted February 24
A MyMyelomaTeam Member

Hubby chose not to do SCT at the time of diagnosis because he was wanting to get to 55yrs to retire. After finally responding to some novel therapies and wanting to travel, he chose to forgo SCT. Darzalex was to one to finally knock out his m-spike. He is currently on low does Pomylst as maintainence until his numbers change, to date 6 months of maintaining.

posted February 26 (edited)
A MyMyelomaTeam Member

7 years for my husband. He did have his stem cells collected for potential future use, but we did not continue with the trsnsplant. He has done very well with his treatment regimen.

I know we made the right choice not going through the transplant process.
Even after the transplant, he would still be on the same meds. His age, length of recovery etc, etc . There are new meds all the time.

This is s personal choice, and may not be the best for everyone

Letitia

posted February 21
A MyMyelomaTeam Member

Hi PatCook - each person's maintenance plan is very specific to that person's needs and designed and prescribed by your oncologist. For months, during my induction, I asked what's the maintenance plan. Neither, my Nurse, local Doc or Consulting Doc would answer my request for this info. Point being, it may include both of the above and even others. In my case, due to having one high risk factor of t(4,14), they wanted me on Dex, Velcade, and Revlamid. My maintenance started after 12 weeks of Induction of DarzFP+RVD. They wanted me to get a SCT but I chose to postpone. 2 months into maintenance (lower doses and less frequent than Induction treatment), I requested to stop the Dex and Velcade due to severe neuropathy. Unfortunately, the damage had already been done, as regards my neuropathy. I can not feel heat on my feet or lower legs and their daily pain requires 4 x daily of 5mg oxycodone to get through the day (plus 3x 300mg gabapentin ). It's hard to complain - its possible that with less of those meds, I may not have achieved MRD Negative so soon. 2 months after stopping Dex & Velcade - still taking Rev, I tested MRD Negative (10 -6). Then, a few weeks later my Doc took me off all MM Meds. He's Monitoring me, based on the MRD-SURE Case Study (released this Jan 2022). I get new Labs next Monday which will include a new blood sample sent for clonoSEQ for MRD Testing. This will be my second MRD Test and we'll continue with Monitoring (no Meds) so long as I maintain 10 -6 Negative.
All the Best

posted September 16

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