CAR-T Cell Therapy: Introduce yourself and connect with others
Welcome to the CAR-T Cell Therapy group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people who have experience with CAR-T cell therapy or are caring for someone on CAR-T cell therapy. There are so few people who have experience with this new cancer immunotherapy. Together we can learn from each other, support one another and share stories about living with cancer and coping with the challenges of treatment.
Let’s chat. Why not start by introducing yourself? When did you or your family start therapy? How are you doing today?
Interested in more discussions like this? Go to the CAR-T Cell Therapy Support Group.
Hello all. I was wondering if anyone has had Car-T therapy with Multiple Myeloma and if they had experienced any bone/joint pain after? I am 4 weeks post-CarT and seem to be gaining strength but still have the nagging bone pain and muscle weakness. Have some follow up appts in the next few weeks but thought I’d pop on here to see if anyone experienced anything similar?
Hello @myelomawarrior, welcome to Mayo Clinic connect, I hope there is a member on connect that can share their experience of Cart – T and myeloma with you. I had large B cell lymphoma, however I can say that I had muscle weakness and joint pain for quite some time after treatment. In my case there was nothing prescribed to relieve the side effects. In time, a healthy diet and much exercise and strength conditioning has resolved the bulk of my side effects. I still suffer from neuropathy of the feet which I am told I am stuck with which is OK by me.
Are you able to do some strength conditioning exercises?
I wish you the best news in your follow up appointments.
Thank you so much for your reply @grandpabob. It’s been a long road and hearing from someone who has been through it and had the same symptoms makes me feel so much better. I’ve done so much reading as has my husband about all of this but I’m sure you can understand the fear of it being more than just side effects. I’ve been taking some meds for pain and using topical but am hoping it will subside soon. If you don’t mind me asking, how long did you have the joint pain/weakness? Mine is mostly in my shoulders and my legs.
I plan to start PT soon if I can get approved for it and was thinking of trying acupuncture.
How did the car-t go for you? Did you get a good response?
Good afternoon warrior.
Great to hear you may soon start PT.
The joint pain lasted about a year post treatment, I also had a lot of skin rashes which are now not as frequent as they once were.
I totally understand the fear you are encountering, my heart rate and blood pressure still go through the roof when I have an appointment with my oncologist.
In answer to your question, I have no sign of cancer at the moment, my oncologist told me if cancer is diagnosed again, it will be a new occurrence not a relapse. So I am thrilled with that and consider Car T a total success, I had the therapy in 2018 as a 62 year old. In my case, there was no visible sign of cancer at the 100 day post treatment date, there was considerable sign at 30 days post treatment.
What type of Car T treatment did you undergo? (there are so many now)
Feel free to ask more questions if you wish, I would be happy to share my experiences with you.
@363, it sounds like treatment is working for your sister with tumors shrinking and even disappearing. I know that worry sets in quickly when there is an anomoly on a PET scan. Has she had the biopsy in the meantime? What were the results?
Thank you so much for your reply. Yes very worried as now biopsy is scheduled for Jan 31 so we must wait and meeting with her oncologist is on Feb 6. Of course we would have loved CR but praying this new mark is a blood clot or anything but recurrence. Hoping this part remission stays stable but her oncologist considers Car-T a failure but also considers her R-Chop 7 years ago a failure as her cancer came back.
Are there any clinical trials for relapsed Acute lymphoblastic leukemia (ALL) after bone marrow/stem cell transplant?
Hi @bobby2021, you can contact Mayo Clinic Clinical Research to inquire about the availability of clinical trials available to you.
Phone: 855-776-0015 (toll-free)
Sorry to hear that you’re experience a relapse after having gone through BMT. How long ago was the BMT? How are you doing?
Hello I'm Henry. I went through car-t cell therapy September 2022 at UCLA. This was my second boutique with cancer. I was first diagnosed with Hodgkins lymphoma in 2015. Then I was diagnosed with non- Hodgkins lymphoma in 2022. It's been a long road but I'm told I'm cancer free. I feel so greatfull for car-t treatment because I'm doing well these days.
Hello @henry55 welcome to mayo Clinic Connect.
I am so glad you are doing well and thank you for sharing your experience with Car T treatment. I get super excited when I hear those words “cancer free”. The path of cancer treatment is not an easy one so it is great to hear from people who have had a successful walk down that path. Hurray for the doctors and scientists and you!
Are you currently receiving any follow up treatments like IVIG infusions?