CAR-T: Opportunity to Connect

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.

Hello NT,
Thank you for sharing your (and your husband’s) story.
My husband’s diagnosis of Richters Transformation came a few months after losing my dad to a 4 month battle with cancer and in the middle of downsizing, selling a house, building a house in another state and moving. Too many stressors going on at the same time. I am a think ahead, plan ahead person and learned during that time that I couldn’t think or plan my way out of anything, just had to hang on and ride the wave of each day. Thank you for the reminder of “One day at a time”!
Fortunately our new home is in St. Augustine, FL, and we transferred David’s care to Mayo in Jacksonville. It feels like we, too, are at the end of our options, I pray that CAR-T is the treatment for both our husbands to achieve complete remission. If you are willing to share, please let me know how he is doing.
Kindest Regards,
Denise

You have had a lot thrown at you. I know the feeling! Day four after CAR T and no reactions thus far. Just tired. 🥱 Happy to keep you updated. As a caregiver…I have been keeping my husband company in the hospital each day. And I will do so for his two weeks stay. I have set up a little office so that I can do my stuff, but be there to keep him company. Each day I bring a little surprise, a cereal he prefers, a cookie he likes, a softer towel! When you go through this, honestly, it’s a little things that matter most! One piece of advice that was given to me by another CAR T recipient, is always have something on the calendar for the future. There will be a future! We have a lovely transatlantic cruise booked for August and can’t wait. By then, my husband will be revaccinated and is looking forward to that trip immensely.