CAR-T Cell Therapy: Introduce yourself and connect with others

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.

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?

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.

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 Bob
It's nice to hear from you and congratulations for a successful treatmrnt that really was a game changer for you
I have been reluctant to do the CarT. It has had few positive outcomes for Multiple Myeloma.
Still, I haven't eliminated it as a possibility.
Hope you continue to do well
Hallie
Aka Hthree

Hi there - @hthree, I was treated with Car T, Yescarta, for non Hodgkins Large B Cell Lymphoma after several failed attempts with various chemo therapies, I was treated all within 8 months, so chemo failures were very quickly identified.
There were no visible cancer cells after 100 days. Car T treatment was in August of 2018. I had follow up Pet and MRI scans for two years following the Car T infusion, there has been no signs of cancer since. I am currently seeing my Oncologist every 12 months as follows up.

It is my understanding that Car T is now being used as a treatment for more than just blood cancers, what are you currently being treated for?

Hello..My name is Marilyn..my sister underwent Car-T with Kymriah for B-Cell Non Hodgkins and unfortunately just had her Pet Scan at day 87 past infusion and it showed tumours had shrunk, some were totally gone but a new mark on the petscan and will undergo a Biopsy in the next few weeks to see if blood clot, infection or cancer..we are praying its a blood clot. Has anyone else had these results and if so how are you now doing and what further treatments has anyone had..Thank you

Hello @hthree. Because you mentioned wanting to connect with others who have experience with CarT Therapies, you will notice I have moved you post into an existing discussion which you can find here:
- 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/

I'm hoping members @smokie and @grandpabob who have shared in the discussion and who may be able to come back and give some updates on information they know.

Have you just started exploring CarT therapies?

I am a 17 year survivor and recent my numbers have been steadily rising. I used many diffy chemo regimens. Many worked, for a time. Then, have to change it

Any here trying the CarT therapies? Which one and please described your experience
How long did it work?
Any other treatments that have been helpful,
Thank you

Sounds about the same. Doing well - lots of golf and Grandkids!