About

First Name
Bob

City
Winnipeg

State/Province
MB

Country of Residence
Canada

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Posts (12)

Wed, Apr 17 8:31pm · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

Hello this is Bob, i had my infusion in August of 2017 for large B cell as well. I have not experienced this at this point.

Wed, Apr 10 5:36pm · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

Hello Krista, My name is Bob, i had Car T therapy last August. We stayed at GOL on several occasions. We found it to be beneficial with its close proximity to the clinic. We found the advantage of being able to use the amenities within the facility when we wanted to be very practical. The social aspect was vey helpfull as well. I felt haveing others around me in similar circumstances to be beneficial. People understood what was transpiring around us. The clients and staff were always courteous and treated everyone with dignity. In preparing for Car-T we were advised to have two care givers at all times. This turned out to be great advise as one was not enough at times. Insure your freinds are totally commited to caregiving. (no disrespect intended to anyone) We did not have the added complexity of having to care for young children simultaneously. Feel free to reach out if you feel I could provide more insight.

Tue, Apr 2 5:07pm · Post CAR T cell -- rash in CAR-T Cell Therapy

Hi Mark, appreciate the reply. Interesting,mine are not continuously itchy either though more than not.
Take care.

Tue, Apr 2 8:51am · Post CAR T cell -- rash in CAR-T Cell Therapy

Thanks so much for the information Greta. We had started with changes to laundry detergents and such. Will look into the Aveeno and eczema cream. Tried Benadryl for the itch which helps.
Bob

Tue, Mar 26 8:02pm · Post CAR T cell -- rash in CAR-T Cell Therapy

Hello Greta, I earlier stated i did not get a rash however in the lastFew weeks i have a few. Did you get a resolution?
I will be seeing my doctor shortly but would be interested in your learnings.
Thanks. Bob
Would also be interested to know if @raemark2010 has found anything more.

Mon, Feb 11 8:59pm · Post CAR T cell -- rash in CAR-T Cell Therapy

I have had no rash of any kind Greta. Six months since infusion.

Mon, Feb 11 7:09pm · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

Hello Ann
Thanks for the heads up. I must admit that I have had some some thought about not needing to be so careful. That thought is now gone. Glad to hear Dave is doing much better.

Tue, Feb 5 11:37am · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

Hello Valerie,
I went through what seems virtually them same last year at age 62. I had Car T infusion August 1st.
Our take away is to believe what the doctors and staff tell you. I experienced all of the side effects they outlined. After day 2, I spent 2 weeks in the hospital, one week in intensive care. I remember virtually nothing of those weeks. Your mom will require all the care and support you and your sisters can provide. The therapy took a lot out of me. I was so thankful to have the family support I had. The doctors and staff at Mayo were extremely supportive as well. Never be afraid to call back to the station if you feel something is off. My wife feels it was important that she stayed with me 24-7 while I was in the hospital. Be patient, recovery took some time. I felt cold all the time for at least 2 months after the infusion. I experienced a lot of joint pain for at least four months. I found it difficult to eat for a long period of time. Nearly six months later. I can happily say I am doing quite well physically, I am taking long walks and am even back into participating in light sports. It was tough but so worth it.
All the best wishes from me to your Mom and entire family.
Bob