CAR-T after MM relapse 13 months post-ASCT

Thank you for sharing this information and giving me a sense of where things stand with your treatment considerations. It sounds like your medical team is navigating a complex situation, and I can imagine it might feel overwhelming to weigh options like ASCT and CAR T therapy, especially when terms like "high risk" and "genomic profiling" come up. I’m here to help you explore your thoughts and feelings about this, so we can make sense of it together.
It seems like your doctors are considering ASCT because they view your case as high risk, which might reflect the specific characteristics of your condition, possibly including genetic factors like translocations. You’ve mentioned genomic profiling, which is so important in tailoring treatments like CAR T therapy, as it helps identify whether your cancer expresses specific targets, like CD19 or BCMA, that CAR T can attack with precision. ASCT, on the other hand, doesn’t rely on those specific genetic markers and is more of a broad approach using high-dose chemotherapy.
I’m curious to hear more about what you know or feel about genomic profiling. Have your doctors discussed whether they’re currently doing genetic testing, like FISH or NGS, to look for translocations or antigen expression? And how are you feeling about the idea of these tests guiding your treatment options?
I also want to acknowledge that you’re diving into some really technical details about CAR T and ASCT, which shows how engaged you are in understanding your care. What’s driving you to explore these options so deeply? Is it about finding the most effective treatment, managing risks, or something else that’s on your mind?
As we talk, I’d love to help you reflect on what matters most to you in this decision—whether it’s the potential for a more targeted approach with CAR T, the familiarity of ASCT, or other factors like recovery time or side effects. What would you say is the most important thing for you right now as you think about these treatments?
Let’s keep this open and collaborative—there’s no pressure to have all the answers. I’m here to listen and support you as you process this. If you’re curious about more details on CAR T or ASCT, or even how to ask your doctors about genomic profiling, I can share some insights or help you frame questions. What do you think you’d like to explore next?

It's looking like we will pursue CAR-T though we have a second opinion appt scheduled next week just to gather additional input. I think the biggest concerns are not about efficacy, but rather 1) side effects; 2) reverting back to being immunocompromised for a long stretch; and 3) needing 24/7 caregivers again. She just finalized her vaccines after a year post transplant so thinking about going back into isolation is hard. I have seen some positive feedback on this forum around lack of experiencing side effects but if anyone has any particular insight on any of the 3 concerns above, that'd be great! We are hearing 2 months of 24/7 care after infusion and 30-60 days of watching out for side effects. Have people experienced anything similar or different?

One other thing worth mentioning - her trend up in light chain numbers coincided with a developed allergy and subsequent discontinuance of Revlimid, which is frustrating as it appeared to have been keeping things at bay. Doctors are now changing treatment course in advance of starting CAR T process.

Hi @jrbris23 I think you’d get some valuable insight with a discussion started by @4health4bonnie at the beginning of her CAR-T cell therapy journey. Her transplant for MM was March 26th and this was her comment yesterday…Mother’s Day!

“Yesterday my neutrophils and platelets were normal! It is very exciting, because I can be less isolated. I went into a store today with a mask on! I also saw my daughter on mothers day. I am feeling very grateful. Doctors are happy with my post tests. I’m cheering those car t cell on, and hoping I will get to total remission (for years!)”
https://connect.mayoclinic.org/comment/1301990/
Her entire discussion from Stem cell collection to recovery is in this conversation:
Starting pre-tests for CAR-T infusion for multiple myeloma
https://connect.mayoclinic.org/discussion/car-t-infusion-
for-multiple-myeloma/

I understand the hesitancy with the period of isolation. Your wife has already had an ASCT. But the window is relatively short. Once the neutorphil count returns the strick isolation morphs over to mindful living…with precautions, of course. Moreso until she updates her vaccinations again. And at this point, she most likely hasn’t had MMR vaccinations yet so special attention needs to be taken if there’s a risk of contracting measles. It’s a highly contagious infection.

Those of us with a blood cancer will always have some level of a compromised immune system. I had a Allogenic bone marrow transplant 6 years ago. ‘Fully mature’ and in a durable remission. But I was told by my transplant team that my new ‘borrowed’ immune system still never be as robust as my factory installed model. ☺️ So, as a precaution I still mask up in certain situations where I feel exposure risk is high. Your wife will be expected to do the same throughout her lifetime. It’s a small price to pay for potentially being free from her MM.

What is the timetable on your wife’s transplant?

Thanks Lori! - It's actually my mom. Thank you for bringing @4health4bonnie into this conversation - congratulations on what sounds like a positive update! We just had the initial conversation with transplant surgeon around CAR-T but do have a second opinion scheduled a week from today just to get another set of eyes on the file and give some input. Assuming no new information is gathered from that, we will begin scheduling the pre-tests and navigating insurance approval for CAR-T likely next week.

I am finally home! I am 78 and in fairly good health except for MM. i feel very lucky that I had a Crs reaction after my car t, but so far nothing else major. I had fatigue and lightheadedness in the first thirty days. I had some. digestive upset. I am immune compromised, and I had to have a few growth factor shots in the last 60 days. . Now my platelets are normal. My neutrophils are much better. I guess I am still immune compromised because I have no B cells (they can take a year to come back), and with MM you usually are. I have to be careful and wear a mask at the store and stay away from sick people. My myeloma was 50 per cent better after thirty days which is common . My doctors are pleased. I had high disease burden. They expect me to get better and better in the next few months. I still expect to be in total remission! I feel more normal now, but I am slightly anemic, so by the end of the day I get tired. My experience with Car T has been very good. I am very grateful.

What has been people’s response to car T cell collection. We’ve been told she should feel ok after collection for the few weeks before chemo/infusion. Has this been your experience @4health4bonnie?

@roywalton - can you please comment on neuro toxicities associated with CAR T therapy? Some studies report 30% rate in neurotoxicity (Parkinson-like, inability to write, temporary cognitive decline). Do those symptoms go away?