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

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.

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 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!

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

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?

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

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

Thanks for the reply, she won’t be there everyday but most days.

"Complete Metabolic Response" are my 3 favorite words in oncology. I just had my 1 year PET scan after CAR T on Thursday. It is magic! I had relapsed and there was a node on my duodenum that would not respond to chemo. So I was put on a CAR T clinical trial. 30 days later I was clear. I know the side effects can be scary but they are very low probability. They kept me in hospital for 2 weeks for observation. And they know how to fix whatever happens to go wrong. In my case that was nothing. If fact, I learned a new(to me) programming language when I was in there. So do what you need to do and get on with your life. Please take my best thoughts and best wishes for a prompt recovery with you!

You are having CAR T? I’m happy to report, my husband is doing better today (3 1/2 months since his CAR T) than he has for years. A new lease on life. Plays tennis every day and back to hiking. His treatment has been miraculous. He didn’t have any other options left and is so happy CAR T was available. He was/is in a clinical trial. The actual process - getting the re re-engineered cells - was easy. They drip in and it takes an hour! There are, however, lots of prep appointments and procedures before you get your improved cells. Amazing science!!