CAR-T Cell Therapy: Introduce yourself and connect with others

Hello,
My husband’s “new and improved” cells are going to be re-infused in a couple of weeks, He has had CLL for years, in early May—in the midst of selling a house, downsizing to a new build a state away, and on the heels of losing my father to cancer 4 months after he was diagnosed, we learned that my husband has Richters Transformation. His CLL had morphed to an aggressive B-cell lymphoma. Typically the outcome is not good, so the literature says.
Fortunately our new home is in St. Augustine and he sought continued care at Mayo in Jax. But after watching this cancer laugh at RCHOP and GEMOX chemotherapy regimens, continue to grow in size and number, “aggressive” is very real and I’m very thankful and excited for the CAR-T cell therapy…and I have a big knot in my stomach at the same time.
Any tips for getting through this phase as a caregiver?
Denise

I was infused with CAR-T cells this February past. The final stubborn spot on my duodenum was completely obliterated 30 days later. I spent 2 weeks in our local cancer facility being observed for neurotoxicity and cytokine syndrome either of which never materialized. As a caregiver just be prepared to make trips back and forth to the hospital/care centers and hope for the best. This treatment is really quite magical. I started camping and golfing again in May. Still awaiting the return of my immune system - very small price to pay. I am doing an ivig transfusion today incidently.

Thank you for sharing your story, it gives me renewed hope!

Just stay positive. Positivity is the absolute best therapy. I think of it this way: I only have the current moment to live. Future moments may or may not come so I take this moment and live it in joy and happiness.