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My husband’s “reprogrammed” cells will be re-infused in about two weeks. Since learning that his CLL had morphed into DLBCL, aka Richters Transformation, this past May, he has had two different courses of chemo (RCHOP and GEMOX) and is currently on an oral medication that will supposedly keep the lymphomas from growing/spreading. Yesterday’s PET scan revealed more tumors and existing tumors have increased in size.
As excited as I am for him to have CAR-T therapy, I am struggling with fear that this won’t work. I could use some words of hope from anyone who has been there.
Replies to "My husband’s “reprogrammed” cells will be re-infused in about two weeks. Since learning that his CLL..."
Hello Denise,
I am currently sitting in isolation with my husband at a hospital in Toronto, where he received his new re-engineered cells on Tuesday. Our options were limited when my husband (age 75) relapsed in January. In fact, we felt we were at the end of the line. We opted for a clinical trial. And while the wait was longer than we had anticipated, this new (and hopefully improved) CAR T treatment in Canada offers us hope. We know this won’t end the CLL, but we hope for more time, whatever that is. We have dealt with the ups and downs of CLL and different treatments for 13 years. My husband always seems to relapse after three years as his strain is aggressive. I’m not sure we ever lost hope. Though I must add, a caregivers role is as difficult as being the patient. Science is amazing. Medical science is changing every single day. We have been lucky to follow different treatments as they come available. I do a lot of research, I speak to experts around North America, I actively pull very valuable information from the CLL society website and connect with patients there. We have three different oncologists at three different hospitals, including Mayo. I have a new motto, one day at a time. This is difficult for me, because I’m always thinking ahead and trying to plan. I’ve had to slow down during this very long adventure. Remain positive, remain optimistic, and never lose hope for what might be.
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Welcome to Connect, @denisej4032 Oh golly, this cancer journey your husband (and you) are on is quite a roller coaster ride, isn’t it? I can empathize. I went through similar with a different type of leukemia and a bone marrow transplant. We are fortunate to live in an era with these rapidly advancing, life saving treatments, are available. They offer hope!
There’s another discussion in the forum on CAR-T that’s a little more recent and active than this particular discussion so I’d like to introduce you to members, @sunnyd
@kirkwilliams2049 @ntsimpson @barbarneson @burchfield and many others who have either had CAR-T therapy or are caregivers.
They’ve all been talking about their experiences in this conversation:
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/
Click the link to post any questions or concerns you might have. I know they’ll jump right in to give you more detailed information.
With the change in your husband’s PET scan, did this treatment schedule change? Will he need more chemo before the CAR-T procedure and conditioning can begin?