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

Welcome to the CAR-T Cell Therapy group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people who have experience with CAR-T cell therapy or are caring for someone on CAR-T cell therapy. There are so few people who have experience with this new cancer immunotherapy. Together we can learn from each other, support one another and share stories about living with cancer and coping with the challenges of treatment.

Let’s chat. Why not start by introducing yourself? When did you or your family start therapy? How are you doing today?

@sunnyd

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.

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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.

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@ruttgerbay

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.

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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.

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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!"

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@ruttgerbay

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!"

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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.

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@grandpabob

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.

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Thank you for the information and support. Its been a trying time. We lost dad two weeks also on top of all this (wasn't expected) and haven't had time to process and heal from that. My mom is by far the strongest woman I know. I appreciate the support.

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@sunnyd

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.

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This really has been a tough time for you! I'm sorry to hear about your dad, but if there's a bright spot in all of this, it goes by the term CAR-T. Not to be concerned about the infusion… it's actually interesting. Two nurses handle it…one constantly checking vitals and the other controlling the flow based on the vitals. It's really anticlimactic. They'll keep her and monitor for several hours..as I remember, 4 or so… then if no reaction, away you go back to GOL. Then in a day or two, she'll probably be hospitalized for a while. The hardest part there is the separation. My wife will need the rehab because she was in pretty poor shape when this started, and she's lost a lot of strength while hospitalized. As the doctor told me this morning, "she was in pretty tough shape when she came in — she hadn't been giving herself enough to eat." Whatever you do, remember what they told you…everyone is different and responds differently. Not to worry… it'll work out and she'll do just fine. Remember—the best in the country are taking care of her!

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@sunnyd

Thank you for the information and support. Its been a trying time. We lost dad two weeks also on top of all this (wasn't expected) and haven't had time to process and heal from that. My mom is by far the strongest woman I know. I appreciate the support.

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Hello @sunnyd – Just sending a quick note to say I have been thinking about you and your mom.
Today is day 3 post infusion if I remember correctly.

How is your mom doing?

Hello @ruttgerbay – I hope today finds you well.

How is your wife's condition progressing? I am hoping the neurotoxicity is stating to subside.

Take care and be safe all.

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@grandpabob

Hello @sunnyd – Just sending a quick note to say I have been thinking about you and your mom.
Today is day 3 post infusion if I remember correctly.

How is your mom doing?

Hello @ruttgerbay – I hope today finds you well.

How is your wife's condition progressing? I am hoping the neurotoxicity is stating to subside.

Take care and be safe all.

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Thank you for the reply. Today is Day 7 and having all the symptoms that would be anticipated. She keeps having spikes with her fevers which bring on the chills and fatigue also. My mom is very petite and didn't have much 'reserve' to begin with. So its been scary. She is in excellent care at Station 7-3 I know. Its been personally very difficult not seeing her. The care team updates me daily and encourages me to call anytime, so it's good to know this.

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@sunnyd

Thank you for the reply. Today is Day 7 and having all the symptoms that would be anticipated. She keeps having spikes with her fevers which bring on the chills and fatigue also. My mom is very petite and didn't have much 'reserve' to begin with. So its been scary. She is in excellent care at Station 7-3 I know. Its been personally very difficult not seeing her. The care team updates me daily and encourages me to call anytime, so it's good to know this.

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Hello @sunnyd – Thanks for the update.
Car-T can be quite harsh, given the fact that most of us have to undergo at least types of treatment prior to qualifying for Car- T, I hope that criteria can change in the future. I would have to say I was at my lowest point prior to the infusion as well.

I am no scientist, so there is likely a real need to try and eradicate as much of the cancer prior to receiving treatment.

I concur she will be receiving excellent care at 7-3.

Not getting to see her I am sure must be difficult, thankfully in this day and age it is easy to stay in contact with the care team to receive an update.

Take care and I wish you and your mom all the best.

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@sunnyd

Thank you for the reply. Today is Day 7 and having all the symptoms that would be anticipated. She keeps having spikes with her fevers which bring on the chills and fatigue also. My mom is very petite and didn't have much 'reserve' to begin with. So its been scary. She is in excellent care at Station 7-3 I know. Its been personally very difficult not seeing her. The care team updates me daily and encourages me to call anytime, so it's good to know this.

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Hello @sunnyd

Just checking in to see how you are are doing.

It is my hope that your mom is progressing as expected.
How are you and your mom doing?

I hope that at this time you are able to be physically together which I know is extremely important to you.

Take care.

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@ruttgerbay

This really has been a tough time for you! I'm sorry to hear about your dad, but if there's a bright spot in all of this, it goes by the term CAR-T. Not to be concerned about the infusion… it's actually interesting. Two nurses handle it…one constantly checking vitals and the other controlling the flow based on the vitals. It's really anticlimactic. They'll keep her and monitor for several hours..as I remember, 4 or so… then if no reaction, away you go back to GOL. Then in a day or two, she'll probably be hospitalized for a while. The hardest part there is the separation. My wife will need the rehab because she was in pretty poor shape when this started, and she's lost a lot of strength while hospitalized. As the doctor told me this morning, "she was in pretty tough shape when she came in — she hadn't been giving herself enough to eat." Whatever you do, remember what they told you…everyone is different and responds differently. Not to worry… it'll work out and she'll do just fine. Remember—the best in the country are taking care of her!

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Hello @ruttgerbay

I am just checking with you.

Have your wife's Car-T symptoms past?

I hope you are both doing well.

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@grandpabob

Hello @sunnyd

Just checking in to see how you are are doing.

It is my hope that your mom is progressing as expected.
How are you and your mom doing?

I hope that at this time you are able to be physically together which I know is extremely important to you.

Take care.

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Hi,

Mom and I are home. Mom had virtually a clean scan. From a prognosis from weeks to a month in January with the state of her disease and brain tumor, to home with a clear scan! All I can say is, CAR-T works! Its a rough road but the rewards are SO worth it.

We miss dad terribly. We were finally able to lay him to rest June 1st. I know he saw the results from above and is so proud. Mom has come a long way and endured more than anyone I know.

Thank you for checking in. Hope all is well for everyone also 🙏

Dana

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@sunnyd

Hi,

Mom and I are home. Mom had virtually a clean scan. From a prognosis from weeks to a month in January with the state of her disease and brain tumor, to home with a clear scan! All I can say is, CAR-T works! Its a rough road but the rewards are SO worth it.

We miss dad terribly. We were finally able to lay him to rest June 1st. I know he saw the results from above and is so proud. Mom has come a long way and endured more than anyone I know.

Thank you for checking in. Hope all is well for everyone also 🙏

Dana

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Hello @sunnyd – Dana,

I am so glad to hear that your mother made it home. That is exciting.
There is nothing more comforting than finally getting some news that a treatment is actually working.

I concur the treatment does work, like your mom, I had involvement in the brain as well.

I am so glad you were finally able to address your Dad properly, that must be a relief, though very difficult.

I want to encourage you to continue to reach out on Connect as you see fit.

If, you feel your mom may be looking for some help that you feel can be provided on connect, have her post as well. There are a lot of different groups that she may be able to gain a measure of comfort from.

Thank you for your wishes, take care and be safe.

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