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?
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.
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
@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
@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
@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
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
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
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
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