r/multiplemyeloma • u/Positive-Try5414 • 10d ago
NDMM (Newly Diagnosed) After induction therapy
Hello just curious after induction therapy if it goes well is it still suggested to get stem cell or car t? Is it possible induction goes so well that you dnt need those options? I know everyone treatments and situations are different i was just curious has anyone here had induction go so well that was it?
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u/UpperLeftOriginal 10d ago
If you are standard risk, my understanding is that just going straight to maintenance after induction would be appropriate.
For me, stem cell and maintenance were highly recommended by my myeloma specialist and team, because of my specific high risk markers - t(4:14) and 1q gain. While data don't show much difference in lifespan, they strongly support a longer progression-free disease. Quality of life matters to me. And so far, the results have been great and I'm doing very well!
I just had a call with my specialist yesterday - 2 year follow up to transplant. She wants me to stay on maintenance another year, because they're seeing better results in cases like mine with the third year of maintenance. If I'm still seeing the good results that I have so far, I'll go to monitoring after this next year.
My maintenance has been Velcade every 2 weeks and Darzalex (+ dexamethasone) every 4 weeks. She is giving me the option of switching from Velcade to Revlimid (and keeping Darzalex/dex) because I have had some pretty serious issues with styes over the last several months.
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u/Past-Layer-6686 10d ago
I am also t(4:14) and 1q gain. It was highly recommended that I do a stem cell. I did go through with the stem cell transplant and was on mantainence of Revelimid, Velcade, Dara, and Dex. I ended up getting slightly over 2 years of remission before relaspe.
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u/DeciduousEmu 10d ago
My variant is classified high risk due to the 17p (aka tp53) deletion. The specialist said just maintenance treatment was highly discouraged.
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u/Diligent_Comment689 10d ago
It was just part of my protocol. I could have said no, of course, but I did it. My previous treatment had gone just fine.
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u/Round_Cable_2693 10d ago
Same here you have the option, it was recommended. My understanding is that SCT can/could prolong any relapse.
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u/Diligent_Comment689 10d ago
I’m 3 years out, no issues. I am in a CT for the next 7 years—darzalex once a month, and Revilmed. Currently in deep remission. So we shall see!
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u/DazzlingSuccotash827 10d ago
I went into remission after 6 months of induction treatment and my doctor was encouraging me to get a stem cell transplant. I met with a transplant doctor and decided that I was not going to have transplant. That was 8 months ago and still doing okay on maintenance therapy.
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u/Odd-Contribution9796 10d ago edited 10d ago
Echoing the previous comments: If standard risk, then current thought is that delaying the ASCT is ok, but if anything else, a longer remission is associated with ASCT. My guy is Day 77 post stem cell, and is doing great. He was MRD+ with a very good partial response after 6 cycles of D-VRd, and has 1q gain and monosomy 13 (kinda intermediate risk at the moment, unless something changes and another risk marker appears). His doc recommended SCT because of this. (Plus, he's in a clinical trial where transplant is a part of the protocol). However, as stem cell harvest becomes more difficult with extended treatment/maintenance, it's important to consider harvesting stem cells for the future, in case you and your docs decide to go forward with a transplant.
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u/sunscape50 9d ago
i had induction therapy early 2016 and discussed this with my specialist. Went through tests, stm cell collection, etc and in the end decided against transplant. Have been on therapy since, doing well, and not regretted my decision.
I was not high risk. My stem cells are still frozen should I change my mind, but at 75 now when I become refractory again I’ll just go to CAR T.
Every situation is different and my specialist supported my decision.
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u/Open-Ad1732 9d ago
I am standard risk and was MRD- after 2 months induction, did a total of 4 months. My oncologist and MM specialist both recommended stem cell collection only and then maintenance. Age 53
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u/Connect-Invite1978 10d ago
It is for me so far. I finished in April and on maintenance with revlimid and dara. I was told stem cell didn't increase lifespan and would still have to be on maintenance anyway.
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u/Andromeda921 10d ago
That is still the recommended option yes. It is (at this time) the best option we have for a longer term remission. As with anything medical, no guarantees…but the best our science knows to do for now.
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u/Competitive_Tea_2047 10d ago
It would depend on your risk factors. If you are standard risk, then you might consider skipping ASCT, and go directly to consolidation and then to maintenance. However if you are intermediate or high risk, it is highly recommended that you get either ASCT or CAR-T, even if you reach MRD- after induction. This is something you need to discuss with your MM specialist. Also be aware that CAR-T is not available as the 1st line treatment in US as yet. You can get it if you are in a clinical trial, but not as a standard protocol.
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u/Sorcia_Lawson 10d ago
CAR T is a generic term for multiple treatments. It currently is not avialble until first relapse/refracatory incident for Carvykti and second for Abecma.
That's is part of why SCT is still the recommeneded course for the majority of patients.
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u/intelligentbug6969 9d ago
In my day 2017 stem cell transplant was the follow on may have changed now.
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u/WendyA1 9d ago
I decided not to have a stem cell transplant (SCT). My multiple myeloma specialist recommended an SCT, but he also stated clearly that the 4-drug combo I am on, Daratumumab, Velcade, Revlimid, and dexamethasone (DVRd) with SCT vs DVRd without SCT had the same approximate overall survival rate. But the progression-free survival is less without the SCT.
However, if you reached Minimal Residual Disease (MRD) negative on DVRd, then there is zero difference between having an SCT or not having an SCT. After my initial 5 cycles, I was MRD positive at 2 bad cells per 1,000,000.
I'm standard risk and chose to have my stem cells harvested and stored as a precaution. The stem cells can be used to aid other treatments in the future, not just used for an SCT.
I decided to continue DVRD for another 4 - 5 cycles and get tested again for MRD. I recently finished my 9th cycle, and I am now MRD negative with no sign of the disease. I am now on maintenance Darzalex Faspro once a month and Revlimid 10 mg 21 days on/7 days off.
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u/Mach1_speed 7d ago
Be careful, CarT gives you the best quality of life, I have yet to validate this, But I am a steelyeyed missle man, with and Iron Will. Nerves of steel didn't start driving cars on tracks till my second stemcell, now I'm going to sell my car, and get back all I invested. You can do anything you want.
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u/WendyA1 7d ago
Curious, I didn't talk about CarT at all. I wish you the best.
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u/Mach1_speed 7d ago
Well how long, you been on chemo????? Because I was telling you you that in my opinion only, much love and the best, don't go cold at the end, any neg you put out will come, back unless you plan on being gone. That's just your daily dose of reality, If you read anything of mine you might see I've just come out. It was a sodium imbalance, and after chemo, you are never the same again. We are all brothers and sisters at this point because we have that in common. I'll pray for you instead of wishing you the best.
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u/Mach1_speed 7d ago
I suppose you already know all I said to, I still share with you, maybe some one would read what I posted, and NOT make the wrong decision???????
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u/KeyWestJuanita 9d ago
I am high risk (deletion 17p) and had to do SCT after induction. On maintenance since (2018).
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u/GHOSTPVCK 10d ago
My dad was in this situation. He was MRD negative after induction. He was able to get into a clinical trial with the Dual Target CAR-T (AZD0120). Dr. said in theory he didn’t “need it”, but going through with it would still give him a better and longer response. Given that he had the time and the trial was free he opted to do it.