1. < Bone Marrow Transplant (BMT) & CAR-T Cell Therapy

CAR-T cell Therapy: Joint and muscle pain

Posted by Bob, Alumni Mentor @grandpabob, Nov 12, 2018

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.

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raemark | @raemark | Nov 20, 2018
In reply to @grannybrenda "Mark this is Brenda. Bob’s wife and care giver. He remember very little of the whole..." + (show)
@grannybrenda

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.
Brenda

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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

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grannybrenda | @grannybrenda | Nov 17, 2018
In reply to @raemark "Though I had 10 days in the hospital (2 ICU) and remember little of a week..." + (show)
@raemark

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

Jump to this post

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.
Brenda

REPLY
2 replies
raemark | @raemark | Nov 16, 2018
In reply to @greta_k "Hi Bob, my husband Graydon had the CAR T infusion on the 2nd of October so..." + (show)
@greta_k

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

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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

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1 reply
greta_k | @greta_k | Nov 14, 2018
In reply to @grandpabob "I am feeling very good now. Strength and energy is coming back nicely. I had pretty..." + (show)
@grandpabob

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.

Jump to this post

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

REPLY
1 reply
Bob, Alumni Mentor | @grandpabob | Nov 12, 2018
In reply to @JustinMcClanahan "Hello @grandpabob, welcome to Connect. I would like to invite a few other members to this..." + (show)
@JustinMcClanahan

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?

Jump to this post

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.

REPLY
2 replies
Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Nov 12, 2018

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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