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?

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.

REPLY
@ruttgerbay

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……

Jump to this post

@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?

REPLY
@ruttgerbay

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……

Jump to this post

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.

REPLY
@colleenyoung

@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?

Jump to this post

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.

REPLY
@ruttgerbay

I'm afraid. Afraid of my wife's upcoming CART-T treatment and my mental ability to continue as her caregiver. We've been married 57 years, and life has been wonderful –until May, 2019. That's when we got the diffuse large B-cell non-Hodgkin's diagnosis at Mayo Rochester. After six rounds of R-CHOP, things looked promising– except for one sub-centimeter apparent spot. 21 day wait, then another PET scan. The NHL had "exploded" and was almost back to it's original diffusion. On to R-ICE. 3 rounds. Still there. Then another 3 rounds of something else with a name that takes up about half the dictionary. The plan was that round would knock the lymphoma down enough that she'd have a stem cell transplant. In getting ready for the transplant, she passed all the tests. But the lymphoma was still strong so the only decision was to do CAR-T. To keep the lymphoma in check before the start of CAR-T in two weeks, she went through another 3 rounds of another chemo. It's absolutely amazing how she's taken all of this, both physically and mentally. She's excited for the CAR-T to get underway, and so am I. But I'm afraid. I'm afraid of it not working and losing her. I'm afraid of what she'll have to go through. I'm afraid of my ability to stay strong for her as she goes through the side effects. As a caregiver, I'm worn out. Frankly, it's been a tough 11 months. I find it difficult to keep smiling and appearing to be happy while doing everything that needs to be done in this situation. I feel trapped in the house with no where to go except to Mayo 3-4 days a week. Food has no attraction to her, so going out is not a real possibility. Please let me know how those of you who "have been there, done that" made it through this tough time. (and we moved to a home in the country outside a small town a few years ago, so it has been difficult to break into the established relationships — and my two closest friends need help too— one just had a double kidney transplant and the other is fighting cancer.)

Jump to this post

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.

REPLY

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.

REPLY
@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.

Jump to this post

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.

REPLY
@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.

Jump to this post

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.

REPLY

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!"

REPLY
@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!"

Jump to this post

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.

REPLY
@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.

Jump to this post

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.

REPLY
@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.

Jump to this post

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!

REPLY
Please sign in or register to post a reply.
  Request Appointment