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

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.

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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.

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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.

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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.

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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?

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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

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1 reply
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

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

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pgollinger | @pgollinger | Jul 2, 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.

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To All
I am in my 5th cycle of VRd. I took a 2 week break after cycle 4 to harvest stem cells for storage. I was able to complete the harvest in one 4 hour apheresis. I will be randomized for CAR T cell therapy as part of a clinical trial after my 6th VRd cycle. Velcade is causing severe constipation and neuropathy. I am treating the constipation with daily Miralax and Colace. This usually doesn’t work so I take RX Constalose every other day. It is pretty aggressive. The neuropathy is primarily in my feet. Worse at night but still manageable. I am taking gabapentin but I can’t tell if it is helping. My hands are still pretty good. Overall I’m doing ok. My m protein has dropped to .2. It was 2.56. So the chemo is working. I’ll update when I find out if I will be doing CAR T.

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1 reply
pgollinger | @pgollinger | Dec 16, 2023
In reply to @pgollinger "To All I am in my 5th cycle of VRd. I took a 2 week break..." + (show)
@pgollinger

To All
I am in my 5th cycle of VRd. I took a 2 week break after cycle 4 to harvest stem cells for storage. I was able to complete the harvest in one 4 hour apheresis. I will be randomized for CAR T cell therapy as part of a clinical trial after my 6th VRd cycle. Velcade is causing severe constipation and neuropathy. I am treating the constipation with daily Miralax and Colace. This usually doesn’t work so I take RX Constalose every other day. It is pretty aggressive. The neuropathy is primarily in my feet. Worse at night but still manageable. I am taking gabapentin but I can’t tell if it is helping. My hands are still pretty good. Overall I’m doing ok. My m protein has dropped to .2. It was 2.56. So the chemo is working. I’ll update when I find out if I will be doing CAR T.

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To All
I was randomized to Car T in my trial. The trial is to compare Car T to VRd as an initial therapy for multiple myeloma. I had my Car T infusion on Oct 16. I was hospitalized for 10 days with one grade 1 fever. After being home for one day I fevered again and was hospitalized for 4 more days. Since then I’ve had no more CRS and no neuro-toxic reactions. I was returning to the cancer center every other day for bloodwork and evaluation. On the 11th of December I was changed to monthly observation. My monoclonal protein went to none. Not even a trace. My bone marrow biopsy still showed some plasma cells but no increase. I will have another bone marrow biopsy in January. I am hoping for MRD negativity. I am still immuno-compromised. So I stay home and don’t expose myself to others. My neutrophils are normal but my lymphocytes are still .28. This is as a result of the pre-infusion chemo. It is slowly getting better. I am scheduled to have all of my vaccinations in January. I feel great. I went to the driving range (empty) and hit balls yesterday and have been spending some time on the exercise bike. I’m a high risk myeloma patient due to a heavy tumor load at diagnosis and p17 del so getting to MRD negative will be encouraging. I am fortunate to be able to have this trial as an upfront treatment.

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esperanza3a | @esperanza3a | Dec 16, 2023

My name is Lynn, I’m 77 years old.
I had CarT cell therapy August 2023 at Methodist Hospitin San Antonio, Tx. I was in the hospital 23 days to monitor side effects.
I am in complete remission and slowly gaining back strength and endurance.
I am experiencing fatigue and muscle and joint pain. I hope this improves with time. I see a physical therapist once a week but it takes days to recover from a light workout.
Wishing you all the best.

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2 replies
maryangelasmith | @maryangelasmith | Dec 17, 2023

Hello,

I was infused with CAR-T Cells this past Monday, 12/11, at Mayo in Rochester. I am doing the trial for the colon rectal therapy.

So far no side effects and getting discharged tomorrow, 12/18.

Would love to hear from others if you’ve done this new trial.

Of course, hoping/praying it works.

Mary

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1 reply
Bob, Alumni Mentor | @grandpabob | Dec 18, 2023
In reply to @esperanza3a "My name is Lynn, I’m 77 years old. I had CarT cell therapy August 2023 at..." + (show)
@esperanza3a

My name is Lynn, I’m 77 years old.
I had CarT cell therapy August 2023 at Methodist Hospitin San Antonio, Tx. I was in the hospital 23 days to monitor side effects.
I am in complete remission and slowly gaining back strength and endurance.
I am experiencing fatigue and muscle and joint pain. I hope this improves with time. I see a physical therapist once a week but it takes days to recover from a light workout.
Wishing you all the best.

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Hello Lynn, I had Car T 5 years ago, I am 68 years old. I am so glad to hear that you are progressing so well. My experience at 4 months out sounds very similar to yours. Fatigue, muscle and joint pain still dodge me today, though not as bad as earlier, given it has been 5 years I am reluctant to point the finger at Car T. From my experience, I suggest you are doing the correct things to get your strength back. What I feel worked for me was to insure I ate very healthy, small portions often, exercise as able, incorporate some yoga if you can and most importantly rest whenever you need to. (Don’t worry about having a quick rest or nap anytime, I still do.)

What do you find alleviates the muscle pain.

Keep up the great work!

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1 reply
timt347 | @timt347 | Dec 18, 2023

I would be interested in hearing about research or clinical trials about CAR-T therapy for AML. It is a difficult problem, but there is research on it.

I saw a blog post about it on https://www.cancer.gov/news-events/cancer-currents-blog/2023/universal-car-t-cell-blood-cancer

I have relapsed AML, so that is why I am looking at exotic treatment possibilities.

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