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← Return to 5 months post CAR-T with severe bilateral leg pain: Is this normal ?
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5 months post CAR-T with severe bilateral leg pain: Is this normal ?
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Oct 3 4:01pm | Replies (5)Comment receiving replies
@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.
Replies to "@loribmt Hi Lori, My pain is more bone & hip joints , though think muscle is..."
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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?