CAR T Therapy at Mayo Rochester: How long will I be there?

Posted by shadow99 @shadow99, Feb 13, 2022

Hi, I will be referred for CAR T therapy in Rochester. I live outside the US and wonder how long I would have to remain in the Rochester area. The website indicates I would have to remain the Rochester area for many weeks. I'm not sure how I could do this. Any experience?

Interested in more discussions like this? Go to the CAR-T Cell Therapy Support Group.

Hi again, @shadow99. Allow me to introduce you to @grandpabob. He, too, had CAR-T cell therapy at Mayo Rochester and lives outside of the US. I also encourage to read the experiences of @smokie @sunnyd @ruttgerbay @tanis @blewellyn and others in the discussions in the group.

Shadow, many patients come to Mayo Clinic for extended stays for treatment, especially transplant and CAR-T. I can connect you with others who can answer your questions. Can you tell me what concerns or questions you have about an extended stay at Mayo Clinic? Financial? Location? Obligations back home? Is there something specific you’re worried about?

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@shadow99 I am available to speak to any of my personal experiences. I went into CAR-T with complete confidence that the Mayo team would take care of me and I trusted them wholeheartedly with my care. Please reach out if you would like to.

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Dear Shadow
I am from Canada and my son had CAR-T therapy at Rochester. It was tough going - but the staff there was beyond anything we could have Imagined. The expertise,
Compassion, comfort and actual love that we felt from them can’t be described. I was his caregiver ( his mother) and I was treated with such respect and caring.
We were directed to The Transplant House, for lodging. What an experience! The staff were empathetic and helpful. The other patients became friends who instinctively knew when you needed to talk - and when you didn’t! The House was beautiful. It would be my choice over a 5 star hotel without the cost.
Sincerely
Barb

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Hello @shadow99 – I would like to add my welcome to Mayo Clinic Connect.
I like you, live outside the U.S. (Canada) and was referred to Mayo Rochester for Car-T treatment. I will relate to you my experiences in the hopes that this will provide you with some helpful information.

For my pre-treatment appointments including leukaphereses where they harvested the T-cells, we flew directly to Rochester via regular air lines, this was a 4-day trip, (two for travel). After this procedure, I went back home until I received the appointment for the Car-T infusion, (20 days at that time, this may have changed).

At the time of my treatment, the guideline was that I had to remain in the Rochester area, (within 15 minutes of the hospital) for 4 weeks past my final release date from the hospital for any possible complications. In my case, I spent 2 weeks in the hospital post infusion, as this was the case, I spent a total of 6 weeks in Rochester post infusion. We reside approximately 9 hors by car from Rochester, for the treatment phase we were fortunate enough to be able to drive to Rochester.

I had a family care giver accompany me for the duration of my time in Rochester, this was a requirement at the time and was most beneficial to my recovery. I know there are many accommodations available in the Rochester area, we stayed at the Gift of Life Transplant House, which we found to be a wonderful accommodation which met all my needs.

I was also fortunate to be connected to the Social Worker that was part of the Car T team at Mayo Clinic, this was a huge benefit to me as well as they have a lot of knowledge on how to support Car-T patients. They were a great support to me during my recovery as well. It was this team that provided me the information on GOL.

Link to Gift of Life Transplant House
https://gift-of-life.org/
Please reach out at any time, I will be happy to share my experiences with you.
Bob

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Hi @shadow99

I had same reservations and feelings going to Rochester for the first time. We have lived off and on for extended periods of time for treatments. We did stay at the Gift of Life Transplant house, which was a great experience with a home like experience. It was also a financially sound decision for us. There are extended stay hotels near the hospital also if you are looking for more private type settings.

I had same feelings with being away from home for so long. But the time does go much faster than you anticipate. Mayo has expert care and keep you busy with appointments, etc. They are able to multitask and do more testing in a matter of days than one would get in a year at a traditional clinic. I recommend also just bringing a few favorite things from home to help make your time more comfortable also (pillow, blanket, hobbies, etc). We really enjoyed the little things, esp on days a person doesn’t feel the best.

Also work with your social worker as there are many types of grants out there to help with accommodations. Please reach out with any questions or concerns. More than happy to help! 🙂

Take care,

Dana

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@colleenyoung

Hi again, @shadow99. Allow me to introduce you to @grandpabob. He, too, had CAR-T cell therapy at Mayo Rochester and lives outside of the US. I also encourage to read the experiences of @smokie @sunnyd @ruttgerbay @tanis @blewellyn and others in the discussions in the group.

Shadow, many patients come to Mayo Clinic for extended stays for treatment, especially transplant and CAR-T. I can connect you with others who can answer your questions. Can you tell me what concerns or questions you have about an extended stay at Mayo Clinic? Financial? Location? Obligations back home? Is there something specific you’re worried about?

Jump to this post

A little more disclosure: I am an American living in Thailand. I have failed CHOP and my oncologist who did residency at Mayo says can get me in. I have Non Hodgkins Lymphoma.
My main concern is not having a care giver. I have relatives who can help a little, but I think I would have to hire a caregiver and don't know how. TBH I am concerned about the cost of hiring someone 24/7. Finally, I am 70 and wonder if it will be worth it. Thanks to all for your comments.

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@grandpabob

Hello @shadow99 – I would like to add my welcome to Mayo Clinic Connect.
I like you, live outside the U.S. (Canada) and was referred to Mayo Rochester for Car-T treatment. I will relate to you my experiences in the hopes that this will provide you with some helpful information.

For my pre-treatment appointments including leukaphereses where they harvested the T-cells, we flew directly to Rochester via regular air lines, this was a 4-day trip, (two for travel). After this procedure, I went back home until I received the appointment for the Car-T infusion, (20 days at that time, this may have changed).

At the time of my treatment, the guideline was that I had to remain in the Rochester area, (within 15 minutes of the hospital) for 4 weeks past my final release date from the hospital for any possible complications. In my case, I spent 2 weeks in the hospital post infusion, as this was the case, I spent a total of 6 weeks in Rochester post infusion. We reside approximately 9 hors by car from Rochester, for the treatment phase we were fortunate enough to be able to drive to Rochester.

I had a family care giver accompany me for the duration of my time in Rochester, this was a requirement at the time and was most beneficial to my recovery. I know there are many accommodations available in the Rochester area, we stayed at the Gift of Life Transplant House, which we found to be a wonderful accommodation which met all my needs.

I was also fortunate to be connected to the Social Worker that was part of the Car T team at Mayo Clinic, this was a huge benefit to me as well as they have a lot of knowledge on how to support Car-T patients. They were a great support to me during my recovery as well. It was this team that provided me the information on GOL.

Link to Gift of Life Transplant House
https://gift-of-life.org/
Please reach out at any time, I will be happy to share my experiences with you.
Bob

Jump to this post

Thanks for your comments, I don't have a social worker yet and in fact am ahead of the game I feel,

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@shadow99

A little more disclosure: I am an American living in Thailand. I have failed CHOP and my oncologist who did residency at Mayo says can get me in. I have Non Hodgkins Lymphoma.
My main concern is not having a care giver. I have relatives who can help a little, but I think I would have to hire a caregiver and don't know how. TBH I am concerned about the cost of hiring someone 24/7. Finally, I am 70 and wonder if it will be worth it. Thanks to all for your comments.

Jump to this post

Hello @shadow99 - Shadow, I am not a phycologist, this is coming from someone who has gone through the Car T process and is concerned for your wellbeing. I encourage you to look in the mirror and tell the person you see looking back at you that you are worth it! It sounds like you are concerned about cost, Mayo is a wonderful care provider however they are not the only provider of Car T in the world.

Given you reside in Thailand, have you researched a provider closer to your home?

Shadow, does your current cancer treatment provider/clinic/hospital have a Social Services department that you can get more information on Car T options from? I am in no way encouraging you to look elsewhere or break any trust you have with your oncologist, however I want you to be aware that there may be other providers that may better fit your circumstances.

Do take care and keep in touch.

Bob

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@grandpabob

Hello @shadow99 - Shadow, I am not a phycologist, this is coming from someone who has gone through the Car T process and is concerned for your wellbeing. I encourage you to look in the mirror and tell the person you see looking back at you that you are worth it! It sounds like you are concerned about cost, Mayo is a wonderful care provider however they are not the only provider of Car T in the world.

Given you reside in Thailand, have you researched a provider closer to your home?

Shadow, does your current cancer treatment provider/clinic/hospital have a Social Services department that you can get more information on Car T options from? I am in no way encouraging you to look elsewhere or break any trust you have with your oncologist, however I want you to be aware that there may be other providers that may better fit your circumstances.

Do take care and keep in touch.

Bob

Jump to this post

Thanks for your reply, Yes, Mayo is the best for me. I have looked into other avenues and it again is the best. I am not concerned about cost, but not having a caregiver lined up.

My comment about it being worth it has nothing to do with cost but how long I might live after months of treatment at mayo, Probably too hard to explain on a forum

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@shadow99 - That is great that you are committed to where you want to receive your treatment.
I did understand you were thinking about about your wellbeing and not the cost when you reoffered to your age, and if it was all worth it. I felt that for me, it was worth having the treatment, which is a you say, you will have to decide that for yourself.

I hope you can locate a caregiver for your stay.

Below is an email address for the Mayo Clinic Concierge Service, perhaps someone there can be of assistance.

Email: concierge@mayo.edu

Do you know at this point what your timeline to start the Car T process might be?

Take care.

Bob

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