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← Return to CAR-T Cell Therapy: Introduce yourself and connect with others
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CAR-T Cell Therapy: Introduce yourself and connect with others
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Nov 9 9:21am | Replies (224)Comment receiving replies
Hello! My name is Barb. I am the wife of a CAR-T recipient. We are home (ND) for a short 2 weeks prior to heading back to Mayo for continued evaluation & transfusion of his "energized cells". I would appreciate any information I could use during these next days and time after cells are reintroduced.
Thanj You!
Replies to "Hello! My name is Barb. I am the wife of a CAR-T recipient. We are home..."
Welcome @barbarneson, I'm sure your team at Mayo Clinic directed you to this helpful resource for CAR-T caregivers.
- Caregivers for BMT, CAR-T, and Hematology https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/
Hearing from other caregivers to know what to expect really helps. @ntsimpson, I know that you offered to contact other caregivers personally, but I might suggest that by sharing here, you can help many.
I'm also bringing in fellow CAR-T caregivers like @burchfield @ntsimpson @charlenekeogh @raemark2010 @greta_k @valerie912 @smokie @ruttgerbay @sunnyd @gregolson to rejoin the conversation.
So, back to you, Barb. You mentioned that you and your husband are home for a 2-week break before heading back to Mayo Clinic for evaluation and transfusion of his "energized cells". You'd like to hear from other caregivers to understand more of what you can expect. Do I have that right?
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Good morning. There are three wonderful videos on the CLL Society website that were made by individuals who received CAR T treatment. The stories tell about their journey, which are all different, and offered some really incredible information. I am in the same situation right now. My husband is in a clinical trial in Toronto. He will get his new re-engineered cells on November 4. Every situation is completely different, but I felt that these videos were very helpful. I also connect directly with CAR T recipients, and talk to them on the phone. People that have gone through this procedure, treatment are very helpful and always willing to talk about their experience. As a caregiver, I hate that word, I don’t want to leave any stone unturned.