Oncologist preparing for stem cell transplant for my husband, but after careful research, he does not know if he wants to undergo such a grueling procedure which has no guarantee of remission. He is doing quite well with his weekly chemo treatments which have astounded his doctors. Has anyone used alternative measures other than stem cell transplant, and instead decided on another version of treatment. We are so overwhelmed and indecisive about this.
I had the Auto SCT in June and am in full remission so far thank God. Using your own stem cells eliminates the rejection aspect which is key. I lost weight and couldn’t eat much. Felt like crap two weeks. Three weeks in hospital then two weeks in a “clean” hotel then we could go home. Not fun but not that bad. Conservative approach first leaving another SCT if it returns or Car T. Car T will be even better later as they are improving the process as they learn more. My advice. If you have health issues and are weakened then SCT may not be best option. If current meds work this is good option unless MM gets worse than Car T comes into play. About the same as SCT but a bit more risk because it’s new but extremely promising. I am not a doctor so talk all this over with your MM expert doctor and your local oncologist.
I didn’t do stem cell even though I was stage 3 Multiple myeloma . . I am doing well taking Velcade injections. I’m feeling well and running my home . Doing all house work , cooking and taking care of all finances. My husband is 83 so I’m pretty much on my own. So I couldn’t go through the stem cell .
I’m going into my 4th year since diagnosis . Dr is pleased with my progress. My M- Spike is down.
So I think it is a personal decision we each have to make accordingly to our circumstances .
I did not get a SCT. I’m now MRD Negative (no measurable cancer based on the newer testing method from clonoSEQ)
I started from a very bad place - 80% bad plasma, 5915 IgA (400 max normal) and many other bad values.
Prior to treatment, we visited Johns Hopkins (JH) for a second opinion. He said that I should get Darzalex FasPro (Darz) with my First Line Treatment with + RVD. He said it would result in a deeper and faster remission.
Based on the above regime, my Labs were back to normal after 6 weeks (my oncologist was amazed). They said I was in remission at that point and continued induction for another 6 weeks. Then they said I was ready for my SCT.
Had a telehealth with JH about the SCT process. He said now or 3 years from now made no difference to my long term survival rate. I elected to postpone. I went directly to maintenance meds - lower levels & less frequent. Two months later I dropped two of my meds due to bad neuropathy.
Another two months later, they tested me for MRD. My results were MRD Negative.
If his Labs are normal then postponing may be a viable option. I was so weak from induction, I wasn’t willing to consider a SCT for at least a year. Now that I’m Negative, I have no plans to get one. The purpose of a SCT is to get you to Negative. Negative is Negative - doesn’t matter how you get there.
Now that I’m Negative, my Doc placed me on Monitoring mode with no MM Maintenance Meds. Based on the MRD-SURE Report (google search), I plan to stay on Monitoring mode until my Labs indicates a need.
During induction I needed a walker and transport chair. Just finished 4 weeks of going to the gym (will continue daily). I’m stable on my feet again and getting stronger. Planet Fitness (and others) are free to seniors with Silver Sneakers insurance.
Thank you so much for such an honest answer. We are definitely looking at other options especially since my husband is doing well with his current treatment. Blessings and prayers to you
It’s a very difficult decision. I’m at day 40 post transplant and it was a rough process. I can’t honestly say I’m sure the transplant was the best decision. Like you, my pre-transplant treatment, 15 weeks, 5 cycles of DVR-D, had done well with minimal side effects. My advice would be to do your own research, ask a lot of questions about your options, and don’t be “pushed” into doing a transplant just because that is todays “standard”. Blessings to you & your family.
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