Prepping for CAR T Therapy: What is the process like?

Hello @blewellyn - Welcome to Mayo Clinic Connect a place where folks can share their experiences which will hopefully help others.

I had Large B Cell Lymphoma so my treatments prior to Car T would be different than your moms. Prepping for Cart was not particularly difficult, having all the pre therapy tests was quite typical, the apheresis process (Took about 3 hours) to harvest the cells was very straight forward. I underwent 3 sessions of chemotherapy prior to the modified T Cell infusion. Once the cells were modified, the infusion of the new T - cells was very simple. It was the second day after that that I started to encounter side effects. I had pretty much all the published side effects that we were told about. Neuro toxicity, Cytokine Release Syndrome (CRS), slow heart rate, high fever. I spent 2 weeks in hospital one of them in the ICU. I encourage you to take note of all the side effects that are described to your mom by her practitioner. I was extremely weak for some time after I left the hospital.

I hope you find this information helpful, be cognizant of the fact that side effects and their degree can be different for everyone. I am so glad that you will be along to support your mom, I remember I was instructed to have a caregiver at my side for six weeks post infusion, this was excellent advice as I would not have been able to manage on my own as an outpatient.

When is your Mom scheduled to have her treatment start?

Bob

Hi @blewellyn, I'd like to add my welcome. Such a great question to ask. I'm tagging other CAR-T patients and caregivers so that you can get multiple perspectives from members like @smokie @sunnyd @ruttgerbay @tanis as well as @grandpabob

blewellyn, are you your mom's main caregiver? Will you be staying with her throughout treatment?

HI @blewellyn

I was a caregiver for my mom also. 🙂 She underwent multiple lines of chemotherapy and a failed stem cell treatment before starting the CAR-T treatment. My mom had an aggressive type of Large B-Cell Lymphoma (DHL).

I would say for your mom to go into the process as strong as she can, which can be easier said than done. Be as active and get as much nutrition as she can. My mom was pretty weak going in but she was one tough cookie ;-). She did end up in the hospital for about 10 days due to her severe CRS. She was very petite going in, so the fevers took a toll and burned up what little reserves she had. Hence, why I say eat as much as she can. Also be prepared for yourself that she may be in the hospital, which is just as hard on a caregiver also. My mom went in during the heart of covid, so I couldn't see her (my personal hardest part of the process) but the staff is amazing and greeted me at the door in the lobby every day to give me update and let me send up goods to help cheer her.

My mom actually had no neurological symptoms, despite having lymphoma in her brain area and every part of her body. We were preparing for a strong neurotoxicity reaction. So it really goes to show that every person reacts so differently. Prepare for the worst and hope for the best. Some people have no symptoms at all. But we went in thinking the worst and made a plan together as a team if something would happen. That alone gave mom so much strength. Just being there to be their rock is such an important aspect; which sounds like you are doing an AMAZING job. You are a wonderful person to care for your mom through all this. 🙂

Feel free to ask questions or just let us know how it goes each day. It can be scary for everyone and we are here to help through the process. Know she is in wonderful hands and care at Mayo. ❤

Take care,

Dana

Hi Bob!
Thank you for telling me about your experience. Right now we are prepping with venetoclax and ibrutinib, she started that last week. She will have weekly admissions to ramp up the dose of the venetoclax until maximum dose is achieved.

Dr. Wang said he hopes her T Cells are ready to be harvested around December. Luckily I am able to take FMLA and be with her through the whole process, including post CAR T infusion. I'm a nurse, but my specialty is Respiratory, so some of this is a new ball game for me.

I really appreciate hearing about your experience, Bob! Do you mind if I ask how long you have been in remission?

Thanks,
Bridgette

Colleen,

Thank you for your response! Her caregiving team consists of my dad, brother, and myself. My dad and I would be the primary caregivers who will be staying with her throughout her treatment.

Thanks,
Bridgette

Dana,

Thank you for telling me your mom's experience. My mom has Multiple Sclerosis, so I am assuming she will be at a higher risk for neurotoxicity too. It's nice to know that some of the side effects you were preparing for did not occur! I think that is also what makes CAR T so scary, everyone reacts so differently!

Thanks for your support! Is your mom still in remission?

Thanks,
Bridgette

@blewellyn - Hello Bridgette, So glad to hear that everything is moving forward in a positive way for your mom. I see that you are going to have a strong support team ready to do what needs to be done. Your Mom will be so thankful she has all of you standing with her, so important. So I received my treatment on August 1 of 2018, I was 62 at the time.

So answer to your question, I had my 3 year anniversary this past August.

As an aside, at the 30 day post treatment point, the MRI of my brain showed no signs of cancer, (Which was displayed prior to treatment) the PET scan of my abdomen displayed small areas of Cancer. (As compared to large masses) It was explained to us that small signs remaining after 30 days was not an indication of the final results. When I returned for the 90 day post treatment scans, there was no indication of any active cancer. What a relief! Since then, I have had regular quarterly scans for 21 months, I decided at that time I had enough of scans so requested they be discontinued, the Oncologist agreed. At my last visit, we agreed that my Oncology visits could be stretched out to 6 months.

So in summary, it has been a very difficult road to get to where I am today, however, the support that I have had has been tremendous.

Do keep in touch and never be afraid to ask questions on this forum.

Is your mom able to stay active? What is she doing to stay physically strong?

Take care.
Bob