Stem cell transplant vs CAR-T: What can I expect with CAR-T?

Welcome to Connect, @merrle As you’ve learned with your stem cell transplant, there can be some side effects to the treatment. With MM, the stem cell transplant is frequently done using the patient’s own cells in an Autologous transplant. Is that what you had? Were you able to use your own cells?

That does differ from a Allogenic transplant using cells of a donor. The recovery time for that process is quite lengthy and generally you’re not back to work after 10 weeks. So I’m expecting you had a autologous transplant.

CAR-T therapy uses your own cells. From the Mayo site, “ CAR-T cell therapy is an individualized cell-based technique that involves removing some of your own white blood cells, including T cells. To make CAR-T cells, the collected T cells are genetically treated in the lab to produce special receptors called chimeric antigen receptors, or CARs. These CARs allow the T cells to recognize an antigen (or marker) at the surface of cancer cells and activate T cells' ability to kill these cancer cells. The CAR-T cells are infused back into your body to identify and destroy certain cancers. This immunotherapy is one of the most promising areas of cancer treatment.”

I’m not sure we have members who have gone through both an auto transplant and CAR-T. But we do have a growing number CAR-T members in the forum who share there experiences in several discussions where you’ll meet @ntsimpson @denisej4032 @rogweigel @sunnyd @kirkwilliams2049 @barbarneson @burchfield and many other members who have gone through this life saving therapy.
Here are two links for you:
CAR-T Cell Therapy: Introduce yourself and connect with others: https://connect.mayoclinic.org/discussion/car-t-cell-therapy-introduce-yourself-and-connect-with-others/

CAR-T: Opportunity to Connect
https://connect.mayoclinic.org/discussion/opportunity-to-connect/
My suggestion is to speak to these members and not necessarily listen to anecdotal stories from people who have not gone through the procedure. I had a allogenic stem cell transplant and if I’d listened to the horror stories I wouldn’t be here! I’m 5+ years post transplant and at 70 years old, have a wonderfully normal, healthy life.

Are you near a larger university or teaching hospital where this will take place?

Thanks for your quick response. I had an auto. We live about an hour from a Blood Cancer Center, which is in Denver. a wonderful resource, but also am aware that they may have a bias toward length of survival versus quality of life. I feel like my general oncologist does a little bit better with quality of life issues and telling it like it really is. I understand your comment about horror stories, with the stem cell transplant. I just tried to collect as much info as I could, and plan for both the best outcome and the worst. So glad to hear things have gone well for you although you have had lots of bumps coming down!

Coming down= no doubt😊

Hello Merrle,
I am responding to your message from my husband‘s hospital room at Princess Margaret Hospital in Toronto. In March, there were few options for him and his relapsed CLL. We opted to try a CAR T clinical trial. Some type of new product. We are on day 12. We had been told about numerous potential side effects, and we were ready for them. But, to date, there have been none. According to my husband’s oncologist, only a third of patients get CRS (the side effects discussed with us) and 10% have bad CRS. Certainly, my husband has had a few tiring days in the hospital, but that really is it. CAR T
is becoming more and more a standard practice of care and certainly worth looking into. My husband’s ward is filled with stem cell transplant patients and CAR T patients and by far the patients that have had CAR T are more “lively” afterwards. I hope this helps.
Nancy Simpson

Nancy, firstly know that I am sending thoughts and prayers your way.

Thank you for the response. Those percentages are hopeful and your comments regarding standard of care reassuring and make me realize that the stories from a couple of years ago do no reflect the current treatment reality. I will be eager to hear how things move forward for you both. I think spouses may have the harder part of all of this, so take good care.

Hi @merrle

I was the caregiver to my mom and along her side every step of the way. My mom had both an auto Stem Cell Transplant and also the CAR-T therapy. So I would be happy to answer any questions I can help with. I give hope that CAR-T did technically have success over the Stem Cell. She had a couple rough days in the hospital but did not have any CRS symptoms or side effects. She was able to go home after the required hospital time and made a quick recovery.

Hello Merrle,
I am 1 year out from my Car T infusion to treat MM. I am in a clinical trial and received the Car T as an upfront treatment. So no stem cell transplant. So this may not be pertinent to your situation. My first bone marrow biopsy came back MRD negative so I am in complete remission. I did not have any maintenance therapy. So far so good. During my hospital stay following the infusion I had 2 mild fevers and no other side effects. I do have neuropathy in my feet but it began before the infusion. I read all of the possible side effects and decided that the outcomes with Car T were so much better than anything else available at the time that it was an easy decision. Hope this helps and best wishes.
Pgollinger

Thank you so much for your response. Very reassuring. If you are comfortable, can you please tell me the stage and level of risk of your MM? I am high risk, stage two.

Thank you so much for your response! Wishing the best for you and your mom. If you feel comfortable, would you mind sharing your mom‘s age, MM stage, and risk?

My mom was 65 when she underwent everything. She had a rare type of B-Cell Lymphoma (double HIIT). There was risk going into it being she had cancer in her brain and literally every area and appendage and bone in her body. The reoccurrence after her stem cell was worse than the initial cancer. However, She didn’t have a sign of it when the car-T treatment was over. Truly a miracle.

I still lost my mom. But it was from the countless amounts of chemotherapy and treatments she had prior to CAR-T. It sounds like more people are getting this immunotherapy treatment offered sooner than later;not as a last chance result. She basically formed a secondary leukemia and her bone marrow could not produce health functioning blood anymore.

Every persons story is different and how they came to this treatment option. I truly believe if she was offered this sooner, I would still have her. It sounds like you took the Stem Cell quite well, which is great news. And your numbers are still ‘low’ to where adverse effects will hopefully be at a minimum. Mom had a lot of salvage chemo before hand and methotrexate to get the tumors down to get the immunotherapy induced. It was a literally day by day scenario to get it done.

I could ramble on but if you ever have more questions, happy to help. My story is one that is remembered there 😉 I’m happy you have the time to talk and ask questions. Knowledge is power 🙂