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

which trial were you on @kirkwilliams2049 ? Thanks for sharing! Glad to hear you went all clear!

2 -8% of the diagnosed with CLL symptoms. A startlingly good news.

Welcome to Connect, @hikerny, I’m not quite sure what you meant to say with “ 2 -8% of the diagnosed with CLL symptoms. A startlingly good news.”

Have you or a loved one been diagnosed with CLL?

I am having car t done at ohsu in Oregon. Did your husbsnd have long term effects?

I had CAR T one year ago this past February. They kept me in hospital for observation where my most serious side effect was the hospital food - I still can't taste it! On the serious side, my immune system still hasn't recovered. I was on ivig transfusions up until last month and am now on a 3 month hiatus to see what happens - kind of an experiment in real time. My body has definitely changed. For example, I have had 3 vomiting sessions in the past year. I vomit for 3 hours and then magically feel better. Before this I haven't vomitted for 30 years. Btw my wife cooks the Canada Food Guide. Also in the fall, I developed a full body rash - kind of like measles but not. We treated with predisone, betamethasone and zoryve and eventually it cleared up. We don't know if these incidents are a result of CAR T directly or indirectly because of my immune system or because of some other factor. After all I am pushing 76 years on this planet.

And having said all of that, these things have not interfered with my life. I am doing everything that I used to do including camping, fishing, golfing. And I would be skiing if I didn't develop a propensity for concussions a couple of years ago. I see this past year as a "borrowed" year. I live each moment fully as it comes. After all none of us are guaranteed the next moment independent of the odd malady like lymphoma.

Would I do it again? Would I recommend it? Absolutely, unequivocally yes!

Congratulations on your 1 year CAR-T anniversary! Time for a CELL-ebration! 😅
Thank you jumping into the conversation for @4health4bonnie! It’s stories like yours that will really help set her mind at ease with her upcoming CAR-T Therapy!

I’m so happy for you that the therapy has been such a success. That “borrowed” year, while challenging, surely paid off with being able to resume most of your favorite activities with a few trade-offs. My life is similar after having a bone marrow transplant almost 6 years ago. I’d have been pushing up daisies from the underside by now for the past 5 years if I hadn’t done the transplant. I’m 97% my former self at 71! And like you, I’d do it again in a heartbeat!

How often do you return for followup appointments now?

I meet with my team every 3 months now. My next PET scan is in February 2026 unless I become symptomatic in the interim. I should note that I am on a clinical trial. As such I have an oncology nurse assigned to me. I must say that she is the most marvellous person you could ever meet - so responsive to even the dumbest questions. For example, I came down with a chest cold over the past few days. Not being an expert in immunology, I sent her a note asking if there was anything that I needed to be concerned about or watch for. She responded within 5 minutes. She has a ton of experience of an oncology nurse and should actually be a doctor.

I did CAR-T 13 months ago. The only thing that I didn’t expect was the impact on my immune system. My immunoglobulins are still off and I may have to resume ivig therapy. Other than that everything else was presented fully. And things went way better than expected.

Happy to answer any other questions you may have.

Aside from multiple meetings with my oncologist, we(my RN daughter and I) spent an entire day in orientation with all members of the team. There was an abundance of reading material and all questions were answered at a level that I could understand.

I should point out that I am on a clinical trial and I am continually monitored by a nurse coordinator. When I was in hospital post infusion, she visited at least once a day. Every step was described in detail and I knew exactly what to expect.

Another thing that I have not shared is that this is the second time that I have been treated for lymphoma. The first time was in 2015. On relapse they gave me 40% odds. So even though the team provided everything I needed, I did do my own research. 40% isn’t bad but it isn’t great either.

My research was electronic - who consults Britanica anymore? Like all forms of electronic information these days, you need to verify the credibility of the information. I may not be an expert in this type of endeavour but I am pretty good.

I found that the information most lacking was patient experience. So I joined some online forums where patients and families shared their experiences. I found this helpful and I continue to participate with my own experiences to give back in some small way.