CAR T Therapy at Mayo Rochester: How long will I be there?

Posted by shadow99 @shadow99, Feb 13, 2022

Hi, I will be referred for CAR T therapy in Rochester. I live outside the US and wonder how long I would have to remain in the Rochester area. The website indicates I would have to remain the Rochester area for many weeks. I'm not sure how I could do this. Any experience?

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

shadow99 | @shadow99 | Feb 15, 2022

Thanks Bob, WRT startgin the CAR T process, I'm not sure as it's only been a few days since my onc forwarded my records to mayo. I am guessing 2-3 months or so, I have nothing official from mayo yet.

Bob, Alumni Mentor | @grandpabob | Feb 16, 2022

@shadow99 - That is great news that the process has started Shadow.

I hope you have been able to gain some insight from the responses to your post.
Keep in touch, if you have more questions, I am sure someone will be able to share their experience to your question.

Bob

Colleen Young, Connect Director | @colleenyoung | Feb 20, 2022

In reply to @shadow99 "Thanks for your reply, Yes, Mayo is the best for me. I have looked into other..." + (show)

Any update, Shadow?

shadow99 | @shadow99 | Feb 20, 2022

Mayo reviewd my records Have complications preventing me from doing car t a mayo.

Bob, Alumni Mentor | @grandpabob | Feb 22, 2022

In reply to @shadow99 "Mayo reviewd my records Have complications preventing me from doing car t a mayo." + (show)

@shadow99 - That is never what you want to hear. I hope your complications can be overcome and you can go ahead with Car T at some point.

Do you know what your next steps are at this time?

peggybyses | @peggybyses | Jul 8, 2023

No one talks about affects of Car T does anybody have do they have weird things going on like shaking and getting dizzy or lightheaded and tiredness unbelievable

Lori, Volunteer Mentor | @loribmt | Jul 8, 2023

In reply to @peggybyses "No one talks about affects of Car T does anybody have do they have weird things..." + (show)

Hi @peggybyses since Car-T therapy is still relatively new it takes time to find each other. I was the same way with my bone marrow transplant a few years ago. There were scant few of us. But now that they’re becoming more available we’re able to help others along their journeys.
That’s what Connect is all about…helping others connect with people walking the same walk.

@annberkowitz @grandpabob were recently talking about sensations they experience in this conversation. Hopefully they’ll be able to give you some more insights as well. (You can reverse the order of the replies to Newest to Oldest to get the most recent reply)
CAR-T cell Therapy: Joint and muscle pain
https://connect.mayoclinic.org/discussion/joint-and-muscle-pain-1/
How long ago did you receive your Car-T therapy? If you don’t mind sharing, what condition required the Car-T treatment?

Colleen Young, Connect Director | @colleenyoung | Jul 22, 2023

In reply to @peggybyses "No one talks about affects of Car T does anybody have do they have weird things..." + (show)

How are you doing, @peggybyses?

peggybyses | @peggybyses | Jul 23, 2023

In reply to @colleenyoung "How are you doing, @peggybyses?" + (show)

Hanging in there. Trying to go with. I’m gonna be tired. It just comes and goes one day. I might feel good the next day I could hardly move. I don’t know if this is gonna go on or if it ends.

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