5 months post CAR-T with severe bilateral leg pain: Is this normal ?

Hi @warren51 From what other CAR-T members have mentioned, it’s not uncommon to have some muscle or joint pain for a few months after recovery.
Here is a link to one of the discussions:
~ CAR-T cell Therapy: Joint and muscle pain
https://connect.mayoclinic.org/discussion/joint-and-muscle-pain-1/
Is your pain more muscular or do you feel it in the bone or hip joint? It’s curious that it goes away during the day. Could there be a link in your sleeping position in regards to a possible compression on a disc or nerve in your spine? I’m just tossing that out to you as I had a bone marrow transplant and experienced leg and shoulder pain early on. Massages with licensed massage therapist has really made an enormous difference with myofacial release around my spine…the stiffness and pain has gone away.

I’m sure the weight loss is a bit concerning for you though, especially after regaining much needed pounds after chemo/radiation. Has your appetite changed?
From my own experience, I know it’s important to keep up with a healthy protein intake. But it’s also ok during recovery to pack on calories to keep the weight going in the right direction. I added smoothies made with ice cream. (Worry about cholesterol levels later…that was my advice from my doctor and dietitian) Have you mentioned the weight loss to your doctor?

And the last question for now, I promise…☺️ If you don’t mind sharing, what was the underlying diagnosis that led you to receiving the CAR-T procedure?

@loribmt
Hi Lori,
My pain is more bone & hip joints , though think muscle is part . I was diagnosed in Dec with DLBC lymphoma. Was started on a course of chemo which they stopped
after 3 times, said it was not working. Sent me to OHSU
for CAR-T . Which I was given on April 30. While waiting for cells to be
processed in lab I was given 3 doses of radiation zoned on 1 lymph node spot retro perineal . Went home was OK, had a PET scan 90 days post infusion which showed no cancer. Then early August my leg pain started at night. They’ve done MRI’s of cervical, thoraic, pelvis , all normal, no disc compression. On pain meds at night so I can sleep.
Just had my 3rd PET scan today and see Dr this Friday.
Hope it’s not recurrent lymphoma.

Hi @warren51 Waiting for scan results is always such a nail-biter, isn’t it? Been through many of those myself. I’m glad you won’t have to wait long for the results and discussing things with your doctor.
You had a clean PET scan in July ? (90 days after Apr 30) and recent MRIs in area of your leg/hip pain. There was nothing discovered in those results, so that is very encouraging.

But you’d certainly like to determine the cause of the leg pain! Keeping my fingers, toes and eyes crossed for only good news. ☺️. Will you let me know what you find out please?

@loribmt
Saw my Dr yesterday and the PET scan was all clear.
No evidence of lymphoma.
Have a MRI of head scheduled next. Hoping the leg pain will eventually subside.

@warren51 That’s great news about the PET scan!! You can exhale with a sigh of relief now! I’m doing a happy dance 💃 for you that there’s no lymphoma recurrence.

You still have the uncomfortable leg pain, which is certainly annoying. I do hope you can figure out the cause of that soon so you can get some sleep and stop taking the pain meds! But in the grand scheme of things…there is no lymphoma! ☺️