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!

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!

Thank you for the encouragement! After the failed chemo treatments and the resulting "kicks in the gut," it was nice to hear from someone who has been through the same scenario as my wife. Frankly, while I have a somewhat positive outlook, past experience has set me up for another failure...but I DO have hope. You've made that hope a lot stronger. We are fortunate that our two sons live about 1.5 hours away and are already providing great support for my wife --and me. Our daughter will be flying to MN from TX (if internal flights are still taking place) to stay in the Gift of Life House in Rochester with her mom immediately after the infusion and and our boys will be coming to give her some daytimes out of the house. I'll be staying with her until our daughter arrives, and as necessary as other close friends come to be the live-in caregiver. I'll also be doing the shopping, cooking etc. to take some of the burden off the live-ins. In other words, we do have a solid support system. And yes, her T Cells are now visiting the lab in California and are getting zapped or whatever they do to them to get them ready for the infusion. Mayo has gone over all the possible side effects and risks, and I mean ALL... several times.
Thank you for giving me a little more faith in miracles.

Hi - this is Barb again with an update on my son, Greg. His shingles are gone, thanks to very heavy doses of Valacyovir which was given in the hospital by an intervenious drip. They did this for a week. That was Jan 28th. Our Dr in Winnipeg was in contact with the wonderful Dr Lin at the Mayo Clinic, Rochester during this time.
Greg has a lot of nerve pain, even now in his head. He has headache and numbness, but they saved his eye and he can open it. We are very blessed!
He also was referred to an eye specialist who helped so much. He is still on Valacyclivor by mouth.
It is a lousey disease and there is a vaccine called Shingrix that is a dead virus and is very effective.
Greg will receive it in about 5 months.
Hello to all caregivers. The CAR - T cell transplant is challenging, but you have access to such wonderful support at the Mayo. Listen to them and let them help you, because it is so worth it!

Hi - this is Barb again with an update on my son, Greg. His shingles are gone, thanks to very heavy doses of Valacyovir which was given in the hospital by an intervenious drip. They did this for a week. That was Jan 28th. Our Dr in Winnipeg was in contact with the wonderful Dr Lin at the Mayo Clinic, Rochester during this time.
Greg has a lot of nerve pain, even now in his head. He has headache and numbness, but they saved his eye and he can open it. We are very blessed!
He also was referred to an eye specialist who helped so much. He is still on Valacyclivor by mouth.
It is a lousey disease and there is a vaccine called Shingrix that is a dead virus and is very effective.
Greg will receive it in about 5 months.
Hello to all caregivers. The CAR - T cell transplant is challenging, but you have access to such wonderful support at the Mayo. Listen to them and let them help you, because it is so worth it!

Thank you for the encouragement! After the failed chemo treatments and the resulting "kicks in the gut," it was nice to hear from someone who has been through the same scenario as my wife. Frankly, while I have a somewhat positive outlook, past experience has set me up for another failure...but I DO have hope. You've made that hope a lot stronger. We are fortunate that our two sons live about 1.5 hours away and are already providing great support for my wife --and me. Our daughter will be flying to MN from TX (if internal flights are still taking place) to stay in the Gift of Life House in Rochester with her mom immediately after the infusion and and our boys will be coming to give her some daytimes out of the house. I'll be staying with her until our daughter arrives, and as necessary as other close friends come to be the live-in caregiver. I'll also be doing the shopping, cooking etc. to take some of the burden off the live-ins. In other words, we do have a solid support system. And yes, her T Cells are now visiting the lab in California and are getting zapped or whatever they do to them to get them ready for the infusion. Mayo has gone over all the possible side effects and risks, and I mean ALL... several times.
Thank you for giving me a little more faith in miracles.

Hello @ruttgerbay, welcome to Mayo Clinic Connect. Within Mayo Connect there is a group labeled “Caregivers” you may want to follow that group and ask your questions there as well. https://connect.mayoclinic.org/group/caregivers/

As one who has received Car-T treatment, I can understand how trying being a caregiver can be. As with your wife, I had three different treatments with little result before I was approved for Car-T. This brought along with it equal amounts of stress and uncertainty for my wife and family who took great care of me throughout. I know a large part of how she managed was with the support of our family and friends, we did not hesitate to engage them or accept their help when offers were made.

I assume the care team at Mayo Clinic reviewed the possible side effects, take these seriously, as I myself had most all of them. Be prepared for that.

Another bit of advice that was provided and we thankfully heeded, was to have two caregivers available. Our sons looked after their mother while she looked after me with their help.

I realize you recently moved, however, do you have some family or friends for support that can help you once your wife goes in for treatment?

Has your wife already had the Aphaeresis to collect her T-Cells?

Do keep in touch and I encourage you to engage the “Caregivers” on Mayo Connect.