Mayo Clinic Connect
Hello all, I had Car T infusion Augut1st. I currently have joint and muscle pain though intermittent. Is anyone else having these side effects? I am not sure if it is from Car T or the chemo I had previous to the infusion.
Hello @grandpabob, welcome to Connect. I would like to invite a few other members to this discussion who have either gone through the treatment or have had a loved one go through treatment to share if they have had any joint and muscle pain. @annmillercarr, @raemark, and @greta_k may have some experience to share with you about whether or not they or their loved one had joint/muscle pain.
@grandpabob, other than the joint and muscle pain, how are you feeling? Did you have any other side-effects that you had to deal with?
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I am feeling very good now. Strength and energy is coming back nicely. I had pretty much all the published side effects that we were told about. Neuro toxicity, CRS, slow heart rate, high fever. I spent 2 weeks in hospital one of the in ICU. All worth the end result.
Liked by Justin McClanahan
Hi Bob, my husband Graydon had the CAR T infusion on the 2nd of October so only 45 days out but he has had considerable bone and joint pain. I asked him if he thought it was Chemo or CAR T relat d and he thinks probably a combination of both for him. He has had a lot of accumulated chemo and radiation over the last 3 years. That is one reason why he may not recovering as quickly as some of the other patients. So sorry we didn’t have a good answer to your concern but know that you are not alone in your symptoms. Maybe as more patients go through the treatment more info will become available. Glad to know you are doing very well otherwise. We hope for the same. Greta
Liked by Colleen Young, Connect Director, Justin McClanahan
Though I had 10 days in the hospital (2 ICU) and remember little of a week of that time, joint or bone pain wasn't an issue for me ….. Mark
Mark this is Brenda. Bob’s wife and care giver. He remember very little of the whole two weeks he was in the hospital and even some things from after he got out. He has no real desire to know or hear about it either. As our son (40years old) said, “ It’s okay dad you don’t need to remember. Mom and I will never forget. “
I think the joint pain came long after release from the hospital.
Liked by Kanaaz Pereira, Connect Moderator
Thanks for your message, Brenda. Your son summed it up well. Bless your hearts, 2 weeks is a long time …. But when we were asked if it was worth it, we of course said that it was. May you have many GOOD memories! Mark
Welcome to Connect, @grannybrenda and @grandpabob. I love your usernames 🙂 I hope you also saw the CAR-T group introductions discussion.
* 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/
Feel free to peruse the posts and get to know the members of our small, but growing group. Bob, you mention that the joint pain is intermittent. Are you finding that is also getting less as time goes on?
Hi Colleen, at this point I would say marginally less. When I have the pain and stiffness it can be quite severe at times. I have it most every day for a time.
Hello @grandpabob! David has never mentioned any joint or muscle paint/aching or stiffness. He also was hospitalized for at least two weeks, including two stints in intensive care. But he had an unusual complication, caused by the effects of CAR-T–but not a side effect of the immunotherapy, which prompted emergency abdominal surgery. So his second stint in ICU and some of those days in the hospital were post-surgical.
Hello Ann, thanks for your reply. I do hope that all is well with you folks now? I spent two weeks in hospital as well. One of those in ICU all due to Car T side effects.
I don't want to derail this discussion with a tangent, but please allow me to interject that we also have an ICU group on Connect (https://connect.mayoclinic.org/group/intensive-care-icu/)
ICU can be a very intense experience for both patients and family members. Late effects after in ICU experience is recognized as Post-Intensive Care Syndrome (PICS). If this is of interest to you, I wanted to let you know about the PICS online support group as well as the PICS in-person support group at Mayo Clinic, Rochester:
– Post-Intensive Care Syndrome (PICS) – Let's talk https://connect.mayoclinic.org/discussion/post-intensive-care-syndrome-pics-lets-talk/
Yes, so far so good. If you met Dave today you would never guess what he went through just six short months ago. He does have some aftereffects of the bowel surgery, but that is to be expected at this point. He sees a gastroenterologist for this. But as far as activities–he spent a few days here at home after we returned, but within a week he was working for a few hours at his office. Within two weeks he was back to work full time. His activities have been normal since then–although he can get tired every once in awhile. Like on Saturday, when he went up and down our rec room stairs into our storeroom carry all the large bins with our Christmas decorations!
Liked by Colleen Young, Connect Director
Yes. I have joint pan mostly in my shoulders and knees. Also my legs get real stiff after sitting for just a short time. I have never ever had any joint/ bone pain until after this CAR-T. I had mine in May 2019. Water aerobics is super helpful. But I want right know how long this will pain will last. I am going real see a rheumatologist next week I am a patient at MDAnderson.
Liked by Colleen Young, Connect Director, Becky, Volunteer Mentor
The joint pain lasted a few months for me. After learning others had some as well, I exercised and did a lot of stretching to insure the muscles were not contracting due to lack of use. This worked well for me. I did not do more than mention it to my doctor as I was not interested in taking medication for it. Are you in a position where you can stretch after your exercises for the time being until you see your doctor?
Liked by Becky, Volunteer Mentor
Hi @jenn22 How are you doing? I was wondering if you found out anything useful with your appointment with the rheumatologist. Has the joint pain subsided?
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