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

Thank you for the update. Is your wife needing additional care due to speech and motor impairments? Do they forsee a full recovery? Thank you on the advice to start a journal, that is a great idea. I really hope your wife makes a full recovery, even if the road may be longer than anticipated, the reward will hopefully be worth the struggle.

I agree, the Gift of Life house is a blessing. We were here with mom's stem cell and now for CAR-T. It's comforting to have familiarity when we are far from home.

We are both very scared for tomorrow(infusion day), I have to be prepared I understand. She has had every chemotherapy regimen for DHL. So we are not starting off strong to begin with.

Thank you for being a glimpse in the future for us. I truly wish the best for you and your wife.

The GOL House was very, very nice. After discussing the future with her CAR-T doctor and nurse practitioner, when she is released from the hospital, she will go to an inpatient care facility for physical and occupational therapy, and most likely home after that, not returning to the GOL. As as result of that discussion, I decided to return to our home 45 miles from Rochester and leave the GOL. Because of the pandemic and inability to be with her, I decided I can face time her from home as well as from the GOL house. And if, by some miracle, I can get to see her in person, I can be there in less than an hour. And it is quite possible she may be released to the Mayo facility in our town. At least. that's what they are working toward. Thanks for asking. Would I recommend GOL to others? As we say in Minnesota, "Ya, you betcha!"

Hello @ruttgerbay - Keeping a journal is a great idea, It must be difficult to support from a distance.Take comfort in what you were told that she is "doing as expected and doing well".
This treatment, at least for me was quite tough. When I was hospitalized, my family was told the same thing. They trusted the information they received

Without a doubt, this treatment does have a chance to work.

How are you finding the Gift of Life Transplant house?

Stay safe.

Hello @sunnyd – I see this is your first post.
Welcome to Mayo Clinic Connect, an online community where people can share experiences and ask each other questions about any health issue.
We're not medical professionals who can offer medical advice.
I see you are a caregiver; I have included a link to the caregiver Group on connect for your information, you may find some helpful advice by following this group as well.
https://connect.mayoclinic.org/group/caregivers/
As a person that has gone through cancer treatment including Car–T, I think I can safely assume your mom appreciates all what you do to support her.
Wishing your Mom and you all the best. Reach out at any time.

Thanks for asking. Be prepared for an up/down roller coaster ride,. The infusion was nothing, but four days later she was in the hospital with CRS and neurotoxicity ...just like they said would happen. The first few days she was basically non communicative ...just guttural sounds. As time went on, it became words, kind of mumbles not unlike a stroke victim. It slowly got better to where we could carry on what would pass for a conversation. Yesterday was the best she had been since hospitalization 17 days before. Then yesterday pm it went to heck in a hand basket. She became totally confused and delusional. Today she'is extremely tired and uses simple yes and no in response to any comment. The nurse practioner says.she's doing as expected, and doing well, although it will be a long recovery. The hardest part is the total isolation from her, although we do FaceTime. I'm just kind of afraid to do so because I never know what will be on the other end. One thing I'm doing is keeping a day-by-day journal in case she ever wants to know what went on. It also makes me use my mind in this world of extremly limited human contact. But if it works...all the tough times will be forgotten.

How is your wife feeling? My mom has/is going through a very similar situation as your wife's journey. Its been a long 15 months. She will get her infusion on Thursday. I get the same feelings of not doing enough yet burnout at the same time. But day by day, as mom would say. All we can ask for. Hope all is well.

What's it like? Unreal. Mayo Rochester usually is not unlike Grand Central Station at rush hour. Now, All you see are a few patients ...like maybe just a couple in a block-long hallway. Only outpatients can have one person accompaniing them: no one except patients in hospital. And they mean no visitors, caregivers or spouses. Just getting in the building is not unlike going thru a TSA checkpoint. They take your temp in an outer hall, then if no temp, you go to a desk where you answer questions. If you pass the test, in you go. I will admit we do feel quite safe. And where do I go while she's in the hospital and I'm not. I'll hang out at the Gift of Life Transplant House.

It is a helpless feeling not being able to “fix” things that’s for sure. But you are doing more than you can imagine. Hope everything goes well for you both.

@ruttgerbay, I get that feeling of being a helper who can't fix things. I bet @raemark2010 @greta_k @valerie912 and @smokie do too. As @grandpabob says by just being there you're doing a lot.

What is it like being at the hospital during the virus crisis? Is it quieter than usual? Where can you as a caregiver hang out when you have to wait for extended periods of time?

Hello @ruttgerbay - So glad the hear you are hanging in there with all that is transpiring around you.
From a physical stand point, I agree the Car-T infusion is not a lot different, with the exception it is usually a short visit. But mentally, such a great feeling knowing this new treatment is getting underway.

Yes, be prepared for the side effects, they differ to some extent for everyone we were told.

I am glad you are there. You may not be able to fix the treatments or the disease, but rest assured you are fixing and awful lot for your wife and family at this time. Never ever sell yourself short.

Remember, we on Mayo Clinic Connect are here for you anytime you feel the need to reach out.