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

She's having kind of a rough time...day by day things change. Last blood test resulted in a bag of platelets, magnesium and phosphorous. Neutropenic as well. No real interest in eating. Keeps losing weight, gets angry when I encourage her to eat. Other than that.... Scheduled to start the process a week from today with a couple of more tests, followed by line placement, then with chemo before the infusion which starts on the 28th. No real idea about the impact of COVID-19: Mayo Rochester has shut down elective surgery, office visits and procedures effective 3/23. I highly doubt this would be considered elective. We're doing what we've been doing for the last 11 months or so .... staying home, except for trips to the hospital for blood tests (2Xweek) and into Mayo for whatever. I make occasional runs to the pharmacy for whatever new prescription the docs think will help whatever it is that day and to the grocery. Glad we live in a small town where there are no crowds and folks aren't panicked over toilet paper! Thanks for asking!

Hello @ruttgerbay - It sounds like you are very patient. Do your best to stay that way. I can relate to what your wife is going through. My wife laughs (now) about how she had to mash the noodles in my soup in order for me to eat them.

Stay strong - Thinking of you both. Reach out anytime when you can.

Hello @ruttgerbay - Just checking in with you. Car-T infusion date is very near from the timeline you identified in your last post. I want you to know that beyond your family and friends, there are many supporters out here in Mayo Connect land.
How are you Doing?
How is your wife doing?

Keep in touch, we are rooting for your entire family. Take added comfort in the fact your wife is being treated in one of the best health care systems in the country and that the Transplant House take their position in health care very seriously as well.

I encourage you to reach out at any time.

Actually, we both are hanging in there. She's now receiving her last day"s pre transplant infusion. Then, as you know, the two rest days, followed by the "big day," which, as we understand is quite anticlimactic.....just like any chemo or transfusion day.

As I understand, anytime after the infusion, we need to be prepared. All in all, we're looking forward to it...and to it working and slowly getting back to a somewhat normal life,

She's doing well, tho she has a bunch of little nucense problems that keep cropping up. But basically under control. Well, sort of.

Me? I'm here. I'll make it. It's hard being a helper who can't fix things......

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.

@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?

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.

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.

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.

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.