1. < Bone Marrow Transplant (BMT) & CAR-T Cell Therapy

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

Posted by merrle @merrle, Nov 16 8:16am

Hi, I have multiple myeloma and received a stem cell transplant 13 months ago. Although I have an array of effects from the transplant and ongoing treatment, life is good. I went back to a nurse practitioner job I love 10 weeks after transplant, although did not start seeing patients again for about 6 months. One of my cancer markers is increasing and the discussions regarding CAR T therapy have started. A comment from nurses is that people are really sick, which given these nurses see every day, is concerning. For those of you who have been through both procedures, could you provide any thoughts you have on relative difficulty, length of recovery, ability to work after CAR T etc. I had a lot of cognitive problems after transplant, I’m concerned that CAR T will mean disability for me. I can live with that, but just want to be prepared. Thanks advance!

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

pgollinger | @pgollinger | Nov 18 12:24pm
In reply to @merrle "Thank you so much for your response. Very reassuring. If you are comfortable, can you please..." + (show)
@merrle

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.

Jump to this post

Hi Merrle
I was also risk level 2 due to deleting P 17. I had lytic lesions throughout my skeleton with small fractures in my spine. I was diagnosed with MM after complaining of chest and back pain. The trial consisted of 8 cycles of VRD prior to the Car T infusion. This got me to a very good partial remission at the time of infusion. I will be getting my next BM biopsy in February. Be sure to get an MRD test done at your next biopsy.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | 2 days ago
In reply to @ntsimpson "Hello Merrle, I am responding to your message from my husband‘s hospital room at Princess Margaret..." + (show)
@ntsimpson

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

Jump to this post

Hi @ntsimpson, just checking in. How are you and your husband doing?

REPLY
1 reply
ntsimpson | @ntsimpson | 2 days ago
In reply to @colleenyoung "Hi @ntsimpson, just checking in. How are you and your husband doing?" + (show)
@colleenyoung

Hi @ntsimpson, just checking in. How are you and your husband doing?

Jump to this post

Hi Colleen,
All is great! My husband’s clinical trial for CAR T was on Nov 5th. He was in the hospital for 15 days. I’m happy to report that all the possible side effects with CAR T never materialized. He is tired from time to time, but nothing else. Yesterday, he was able to walk over to kilometers. We are staying very close to the hospital until Dec 2nd, as was recommended. The hospital calls us every day, I monitor vitals four times a day and we are required to go in for bloodwork twice a week for the first month. I am a huge advocate for clinical trials. We had run out of options, and there is, to my knowledge, only one approved CAR T therapy for CLL in the US. So we looked in Canada. I must say, when you are on a trial, you are very, very well cared for. The researchers are hoping that their treatments will eventually come to fruition. Medical science is amazing!
Nancy Simpson

REPLY
1 reply
rogweigel | @rogweigel | 1 day ago
In reply to @ntsimpson "Hi Colleen, All is great! My husband’s clinical trial for CAR T was on Nov 5th...." + (show)
@ntsimpson

Hi Colleen,
All is great! My husband’s clinical trial for CAR T was on Nov 5th. He was in the hospital for 15 days. I’m happy to report that all the possible side effects with CAR T never materialized. He is tired from time to time, but nothing else. Yesterday, he was able to walk over to kilometers. We are staying very close to the hospital until Dec 2nd, as was recommended. The hospital calls us every day, I monitor vitals four times a day and we are required to go in for bloodwork twice a week for the first month. I am a huge advocate for clinical trials. We had run out of options, and there is, to my knowledge, only one approved CAR T therapy for CLL in the US. So we looked in Canada. I must say, when you are on a trial, you are very, very well cared for. The researchers are hoping that their treatments will eventually come to fruition. Medical science is amazing!
Nancy Simpson

Jump to this post

My wife underwent CAR T cell therapy for acute lymphoblastic leukemia in the fall of 2022. She experienced some of the side effects, but nothing extreme. She has been free of ALL for 25 months. However, she did recently undergo a lumpectomy and radiation for breast cancer. Her oncologist told her two years ago that there was a good chance the ALL would not return, but other cancers could present because of the beating her body took from all the chemotherapy she incurred. Since first being diagnosed with ALL in February of 2021, she's had, in her words, four bonus birthdays and anniversaries and will have four bonus Christmases and Thanksgiving. Without CAR T cell, this wouldn't have occurred.

REPLY
View MoreView Less
Please sign in or register to post a reply.