Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 7533
Joined: Jul 23, 2014
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?
@colleenyoung Hi Krista, and welcome. As you prepare for your husband's CAR-T treatment, I can imagine you have several questions regarding the needs of your young children, managing multiple caregivers, etc. I'm tagging @valerie912. Judging by her profile picture, I think she's been in your shoes. Also @grannybrenda and @grandpabob may be able to provide insights as dedicated grandparents.
Past Gift of Life House residents @jerrydrennan @rosemarya and @jodeej can help answer your questions about staying at the GoL House in Rochester. And this article may help answer commonly asked questions:
* Transplant Hospitality Houses – A Home Away From Home https://connect.mayoclinic.org/page/transplant/newsfeed-post/transplant-hospitality-houses-a-home-away-from-home/
Krista, will your children travel with you or stay at home with their grandparents?
Hi Krista.
I am Brenda and was Bob’s main caregiver. First let me say welcome to the CAR-T family. Sorry that you are having to be here, but we were very thankful to get the opportunity! It is a whirlwind and I cannot imagine doing it with young children. I can only share my experience as a care giver and not all are the same. I am very grateful I had people to relieve me and give me a break and to help at the GOL. When we were told to be with him 24-7. We did, and both neurotoxicity events came on during sleep. I was very grateful I was there. Nurses are fantastic but they cannot be there every minute. Lots of time it just involves watching them sleep. In our case that was important. Wifi is great at the Mayo.
We wish you, your family and extended family all the best! As a granny I’m glad you have grandparents to be with the children so you can be with your husband if he needs you.
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 7533
Joined: Jul 23, 2014
@marinak Has CAR-T therapy been used for metastatic triple negative breast cancer? Any trials at Mayo for m TNBC
Hi @marinak
I found this article
– CAR-T Trial for Triple-Negative Breast Cancer Under Way https://www.cancertherapyadvisor.com/home/news/conference-coverage/san-antonio-breast-cancer-symposium-sabcs/sabcs-2018/car-t-trial-for-triple-negative-breast-cancer-under-way/
Trials for CAR-T for TNBC are in early phases (phase 1) as yet.
Here is a recent article about promising research at Mayo Clinic for TNBC:
– Mayo researchers identify potential new treatment for subset of women with triple-negative breast cancer https://newsnetwork.mayoclinic.org/discussion/mayo-researchers-identify-potential-new-treatment-for-subset-of-women-with-triple-negative-breast-cancer/
You can find more clinical trials being conducted currently at Mayo Clinic for triple negative breast cancer here: https://www.mayo.edu/research/clinical-trials/search-results?keyword=triple%20negative%20breast%20cancer
Liked by jerrydrennan
Rosemary, Volunteer Mentor
@rosemarya
@rosemarya
Posts: 3836
Joined: Aug 30, 2011
@kjmahoney Hello all,
My name is Krista, and my husband Ryan has had his T-cells harvested, awaiting infusion until pancreatitis/liver function improves. We are approaching the one-year mark since diagnosis, and it seems as though there is always something unexpected around the corner.
We have 2 young kids at home, and a number of friends who will be sharing caregiving duties for Ryan during treatment. We have learned through other hospitalizations that the kids need me more than he does! We also have grandparents and others who will stay with them when I need/want to be with Ryan.
I’m particularly interested in hearing from anyone with children who has done CAR-T, as well as those who have had multiple caregivers. Our plan is to stay at the Gift of Life Transplant House. Can anyone share from experience there?
@kjmahoney
Hi Krista, I am a liver and kidney transplant recipient. My husband and I lived in the GOL ( https://gift-of-life.org/ ) for 11 weeks in the spring of 2009. We were 800 miles from our home, and it became our home-away-from home during that stressful time of our lives. At first the idea of a 'group' house was uncomfortable to me because I treasure my privacy. I soon learned that the GOL provided me the privacy that I desired, and also the companionship and support from patients and caregivers who were undergoing similar journeys. It is convenient to the Mayo Clinic because there is a free shuttle that picks up and drops off at the door! My husband (retired) was my full time caregiver, but I did meet others who had several family members/friends who rotated the responsibility. All guests are required to take a tour of the House and to agree to the terms for staying there.
I highly recommend the Gift of Life House!
Liked by Colleen Young, Connect Director, jodeej, jerrydrennan
jerrydrennan
@jerrydrennan
@jerrydrennan
Posts: 64
Joined: Mar 23, 2018
@kjmahoney Hello all,
My name is Krista, and my husband Ryan has had his T-cells harvested, awaiting infusion until pancreatitis/liver function improves. We are approaching the one-year mark since diagnosis, and it seems as though there is always something unexpected around the corner.
We have 2 young kids at home, and a number of friends who will be sharing caregiving duties for Ryan during treatment. We have learned through other hospitalizations that the kids need me more than he does! We also have grandparents and others who will stay with them when I need/want to be with Ryan.
I’m particularly interested in hearing from anyone with children who has done CAR-T, as well as those who have had multiple caregivers. Our plan is to stay at the Gift of Life Transplant House. Can anyone share from experience there?
@kjmahoney
Hello I am Jerrydrennan
I had a liver transplant 7mths ago. After my transplant I stayed at the GOL house for my recovery . My wife is disabled and not a le to stay at the GOL. My brothers helped alo g with my niece .
Changing caregivers is not hard . Need to get registered and they can take turns. Our daughter took care my wife/mom.
They where able to visit everyday. We had dinner at the GOL house together and enjoyed the game room upstairs. If there is any question that I can help with please ask. Also @jodeej is very helpful I follow her lead with her husband.
Prayers
God Bless
Jerry Drennan
jodeej
@jodeej
@jodeej
Posts: 532
Joined: Jan 13, 2018
@kjmahoney the Gift of Life is a great place to stay. You need to tour it before you can stay so you can learn the rules and see if it's a good fit for you. After that just let them know when you will be there and if it's not full you will have a room. If they happen to be full, they will contact hotels in town on your behalf too get you a discounted room. We've only had to do that once in all the times we stayed.
The people you will meet there become like family. It's great to talk to people that are walking a similar journey as you. I highly recommend giving it a try.
Blessings,
JoDee
@annmillercarr My name is Ann. My husband David was a CAR-T patent at Mayo's-Rochester in May-June 2018. I would be glad to discuss the CAR-T experience with any prospective Mayo Clinic CAR-T patients or caregivers.
My son was a CAR T cell lymphoma patient Sept 2018. 7 months later he is extremely tired. More so than he was a month ago. Did this happen to your husband?
@valerie912 Hello, my name is Valerie and my mother, Phyllis (age 61), will infuse her CAR-T cells on 2/11. We are from Des Moines, Iowa. She was diagnosed with Diffuse Large B Cell Lymphoma in September 2018. She went through two rounds of R-CHOP and R-ICE and one round of GemOx but the cancer continued to progress very rapidly. I will serve as her caregiver along with my two sisters, Venessa and Vania. Interested to hear others stories and advice for us.
My son had his infusion for large B cell lymphoma. He has done well but has been extremely tired for the last 3 weeks. Has this happened in your case?
My name is Barb and my son Greg had a CAR T Cell Transplant in Aug of 2018 for large BCell lymphoma. He has done well except for immunoglobulin being low. He had a reaction to the infusion and is giving it to himself weekly in needles in the stomach. Just in the last 3 weeks, he has become unusually tired. Has anyone else experienced this at this stage.
Liked by Colleen Young, Connect Director
Bob
@grandpabob
@grandpabob
Posts: 38
Joined: Nov 10, 2018
@grandpabob Hello this is Bob, i had my infusion in August of 2017 for large B cell as well. I have not experienced this at this point.
Thanks so much for replying! Going to check with the Dr.
Ann
@annmillercarr
@annmillercarr
Posts: 22
Joined: Sep 20, 2018
@smokie My son was a CAR T cell lymphoma patient Sept 2018. 7 months later he is extremely tired. More so than he was a month ago. Did this happen to your husband?
Has he discussed this with his hematologist/oncologist, either at home or at Mayo's?
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 7533
Joined: Jul 23, 2014
@smokie My name is Barb and my son Greg had a CAR T Cell Transplant in Aug of 2018 for large BCell lymphoma. He has done well except for immunoglobulin being low. He had a reaction to the infusion and is giving it to himself weekly in needles in the stomach. Just in the last 3 weeks, he has become unusually tired. Has anyone else experienced this at this stage.
Hi @smokie, I just wanted to check in. How is your son doing?
He is doing pretty well. Still gets tired though.
Not the worst thing. He is having immunoglobulin shots as he had a bad reaction to the infusion.
Thank you for asking.
Liked by Colleen Young, Connect Director
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 7533
Joined: Jul 23, 2014
Hi @greta_k @annmillercarr @raemark2010 @raemark @valerie912 @grannybrenda @kjmahoney @smokie
I thought it was high time that I checked in with all of you. First a little news.
This week the Connect Member Spotlight features fellow CAR-T cell therapy member @grandpabob. Get to know a bit more about Bob, what brought him to Connect, how he finds balance in life and some unexpected things too.
– Don’t Expect What You Don’t Inspect : Meet @grandpabob https://connect.mayoclinic.org/page/about-connect/newsfeed-post/dont-expect-what-you-dont-inspect-meet-grandpabob/
See all Member Spotlights on Connect: https://connect.mayoclinic.org/page/about-connect/
Now I'd like to get an update from you.
@smokie, how is your son doing? And you?
@raemark2010 and @raemark Have you returned to Africa?
@greta_k how's Graydon? How are you?
@valerie912 how are things for both you, Dave and the little one?
@annmillercarr any news from you?
@grandpabob
In reply to @colleenyoung
Hello Krista, My name is Bob, i had Car T therapy last August. We stayed at GOL on several occasions. We found it to be beneficial with its close proximity to the clinic. We found the advantage of being able to use the amenities within the facility when we wanted to be very practical. The social aspect was vey helpfull as well. I felt haveing others around me in similar circumstances to be beneficial. People understood what was transpiring around us. The clients and staff were always courteous and treated everyone with dignity. In preparing for Car-T we were advised to have two care givers at all times. This turned out to be great advise as one was not enough at times. Insure your freinds are totally commited to caregiving. (no disrespect intended to anyone) We did not have the added complexity of having to care for young children simultaneously. Feel free to reach out if you feel I could provide more insight.
Liked by Rosemary, Volunteer Mentor, Colleen Young, Connect Director, jerrydrennan