1. < Bone Marrow Transplant (BMT) & CAR-T Cell Therapy
Moderator

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

Posted by Colleen Young, Connect Director @colleenyoung, Sep 17, 2018

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?

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

Bob, Alumni Mentor | @grandpabob | Jun 1, 2023
In reply to @elwooodsdad "Bob, Thanks for the note and update. The University of Oklahoma is about 100 miles away,..." + (show)
@elwooodsdad

Bob,
Thanks for the note and update. The University of Oklahoma is about 100 miles away, and I know couple of people there who could be of help. I had a rather involved tumor removal at age 10 at Mayo, and it has served me well. I'm crowding 76 and still have similar misgivings which I had at age 10. I'm planning to make contact with the necessary players and see what the math problem looks like. Dealing with quarterbacking your own treatment plan, guesstimating the possible cost, etc...I'm going to ask for illumination by their social work committee at both places. They have likely already worked the problem.
Have a nice evening,
Bruce

Jump to this post

Hello Bruce, it appears you have a plan in place for next steps. Well done!

REPLY
elwooodsdad | @elwooodsdad | May 22, 2023
In reply to @grandpabob "Hello @elwooodsdad, I was treated for Lymphoma at the age of 62, five years ago. I..." + (show)
@grandpabob

Hello @elwooodsdad, I was treated for Lymphoma at the age of 62, five years ago. I had several different regimes of chemo which all failed prior to undergoing Car T therapy. As this therapy was not available where I live, I had to go away to receive it, we had to travel 400 miles. I was away for 6 weeks as you indicate. The side effects of receiving the treatment are wide ranging however my experience is that they were acceptable. I had many of the side effects post infusion such as cykotine release syndrome and a high fever.

The therapy worked very quickly in my case as 90 days post treatment, scans displayed no cancer present.

I would advise you to get proper accurate information on Car T from your health providers as that is always the best source of accurate information.

If you questions about my experience with Car T, please ask, I am happy to share.

How far away do you reside from a facility that provides Car-T?

Jump to this post

Bob,
Thanks for the note and update. The University of Oklahoma is about 100 miles away, and I know couple of people there who could be of help. I had a rather involved tumor removal at age 10 at Mayo, and it has served me well. I'm crowding 76 and still have similar misgivings which I had at age 10. I'm planning to make contact with the necessary players and see what the math problem looks like. Dealing with quarterbacking your own treatment plan, guesstimating the possible cost, etc...I'm going to ask for illumination by their social work committee at both places. They have likely already worked the problem.
Have a nice evening,
Bruce

REPLY
1 reply
vivian808 | @vivian808 | Apr 23, 2023
In reply to @elwooodsdad "My name is Bruce/Elwoodsdad. I was diagnosed with Non Hodgkins large cell B lymphoma, Stage 4...." + (show)
@elwooodsdad

My name is Bruce/Elwoodsdad. I was diagnosed with Non Hodgkins large cell B lymphoma, Stage 4. It didn’t present with the traditional lumps, knots, night sweats, etc. I felt weakness in my hips and legs. I am 75 and figured my issues had more to do with age. I vetted a local oncology group, saw the doctor at 3:15, and was hospitalized by 8:30. I received my first R-Chop infusion the evening of 11/17. I have complete six infusions, but we still have evidence of lymphoma and liver issues. CAR-T is my next stop should I be deemed able to endure it. I am unapologetically fearful.

Jump to this post

Hi Bruce,
I’m 70. I had CAR T-Cell at Cleveland Clinic in Ohio. In Feb 2022. It was easier than RCHOP. The infusion takes a mere 15 minutes. Then you will be monitored for 10 days. I felt fatigued & slept a lot. No energy. Fear not, you can do this. Take good care of your body, eat nutritional foods & avoid sugar & junk food. But most of all, be strong, have faith and remember this is a journey & you can do this. Sending you good thoughts, prayers and blessings.

REPLY
elwooodsdad | @elwooodsdad | Apr 23, 2023
In reply to @grandpabob "Hi Bruce, My Car T therapy was performed at Mayo Rochester. The care I received there..." + (show)
@grandpabob

Hi Bruce,

My Car T therapy was performed at Mayo Rochester. The care I received there was wonderful as it was with my local cancer center, however, as in your case the local center did not provide Car T therapy at the time.

Have a great day Bruce.

Jump to this post

Thanks for your quick reply. It is a 10 hour trip, but I find comfort with Mayo. I had ear surgery at Mayo when I was 10. An amazing experience.

REPLY
elwooodsdad | @elwooodsdad | Apr 23, 2023

My name is Bruce/Elwoodsdad. I was diagnosed with Non Hodgkins large cell B lymphoma, Stage 4. It didn’t present with the traditional lumps, knots, night sweats, etc. I felt weakness in my hips and legs. I am 75 and figured my issues had more to do with age. I vetted a local oncology group, saw the doctor at 3:15, and was hospitalized by 8:30. I received my first R-Chop infusion the evening of 11/17. I have complete six infusions, but we still have evidence of lymphoma and liver issues. CAR-T is my next stop should I be deemed able to endure it. I am unapologetically fearful.

REPLY
2 replies
Bob, Alumni Mentor | @grandpabob | Apr 23, 2023

Hi Bruce,

My Car T therapy was performed at Mayo Rochester. The care I received there was wonderful as it was with my local cancer center, however, as in your case the local center did not provide Car T therapy at the time.

Have a great day Bruce.

REPLY
1 reply
elwooodsdad | @elwooodsdad | Apr 22, 2023
In reply to @grandpabob "Hello @elwooodsdad I can understand the fact that you are scared, news that procedures are not..." + (show)
@grandpabob

Hello @elwooodsdad I can understand the fact that you are scared, news that procedures are not progressing as planned changes how we feel, fear is certainly one of them for many of us. In my journey, I found that Car T side effects were somewhat different for everyone I encountered that had the therapy. This is really not a lot different than many other treatments as even chemotherapy does not work for some, but yet saves many thousands of lives every year. It is important also to note that the published side effects are a possibility but may not necessarily occur.

Making health care decisions can be a trying experience at times, do you have someone that can aide and support you in those?

Jump to this post

Bob,
Meant to ask yesterday, can you share where your CAR T therapy was done?
Blessings,
Bruce

REPLY
pgollinger | @pgollinger | Apr 22, 2023
In reply to @colleenyoung "Thanks, @pgollinger. I look forward to your updates as you move through treatments when you're able." + (show)
@colleenyoung

Thanks, @pgollinger. I look forward to your updates as you move through treatments when you're able.

Jump to this post

To all
I’m in my second cycle of VRd for multiple myeloma being treated at the University of Virginia Cancer Center. So far so good. The only reaction has been constipation. My bloodwork is showing good improvement. My bone pain and itching are gone. I am scheduled to have my stem cells harvested after cycle 4. This is for storage. Hopefully I’ll never need to have a transplant. I am still in a clinical trial for CAR T cell therapy. I will be randomized after cycle 6 to either continue with VRd or do CAR T. I’m a stage 2 patient due to a deleting P17 chromosome.
A note about the constipation. It is very uncomfortable and causes pain around my lower rib cage. I am treating with both colase and Miralax. These otc remedies have not been too effective. I’ll let everyone know whether or not I end up doing CAR T and how it goes.

REPLY
elwooodsdad | @elwooodsdad | Apr 21, 2023

My guess is that I’m several months out. Trying for the larger part of this month to have my records faxed to Mayo…frustrating, but standard practice. Mayo needs to triage my records to see if I am eligible for treatment. I also have a connection at the University of Oklahoma. Assuming I pass muster, there is a substantial down time to process the T cells, then re-introduce them to my body, and spend at least another month to see the results. Rochester is a more appealing place to summer than Oklahoma.

REPLY
Bob, Alumni Mentor | @grandpabob | Apr 21, 2023
In reply to @elwooodsdad "Much appreciation for your concern and sharing of your experiences. I am convinced that the CAR..." + (show)
@elwooodsdad

Much appreciation for your concern and sharing of your experiences. I am convinced that the CAR T information in the public domain has been strained through the legal department due to liability issues. I am blessed with a wonderful wife who is in my corner along with an attorney friend and the prayers of my Presbyterian cohorts. I am an elder in the church and former moderator of this Presbytery. This is scary. I am disappointed in the cancer center here, as I was presuming they are “full service”. They are, up to a point. I am strongly leaning toward Mayo even though it is a 10 hour drive. It’s worth it to be attended to by someone I trust.

Jump to this post

You are welcome @elwooodsdad , I am so glad to hear you have a solid support system, this is very beneficial to as we meander through life. I can't speak to what is accurate online with various information that is out there, however, a reputable health care provider will have accurate information for you once you are ready to take those steps. One has to keep in mind that Car T is still a relatively new treatment and likely requires some very specific specialties to support a program such as that and as such not all providers can offer this therapy. I am sure you will be provided with accurate information regardless of which health provider you may choose.

Do you know how far in the future you may have to consider this type of treatment?

REPLY
View MoreView Less
Please sign in or register to post a reply.