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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?
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HugInterested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.
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Hi @hanya. At this point in time, CAR-T has not been approved for the treatment of myelofibrosis. There are ongoing studies for the possibility in the future.
However, allogeneic bone marrow transplants (using donor cells) have been approved and can be a potential cure for MF. Has your doctor discussed that option with you?
Hi @anthea29, I think we all get stuck in our own headspace for a time after going through something traumatic like our cancer journeys. Recovery from events like this can take its ever-lovin’ time. We go from all-out survival mode to ‘just go home and live your life’… well, it’s not that easy to coast into survivorship mode!
I felt the same way for a time after months of aggressive chemo for AML and then the bone marrow transplant. While all the tests revealed early success, there was always that little gnawing around the edges of confidence. I remember the day when that changed, when I had an Ah-Ha moment!! I even took a selfie to help hold onto that feeling of exuberance! But that moment was almost a full year after the BMT before I felt that I could truly believe remission was possible.
You’re still at a very early point in recovery; Memories and experiences are still fresh. Could the cancer return? Possibly..but what if it doesn’t? In the meantime it’s precious time wasted worrying about “what if”… Life holds no guarantees. But we’ve been given a 2nd chance with the amazing medical procedures that weren’t possible even a few years ago.
I’d like to toss this out for you and @shop516…instead of waiting for the other shoe to drop, wait for your Ah-ha moment! Then post a picture in this discussion I started a few years ago. It’s for those of us with transplants (of any kind) where we can post pics of moments that wouldn’t have been possible without our life giving transplant!
~Snapshots of hope! Life on the other side of transplant:
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/
Congratulations on your CAR-T … wishing you a long and happy life ahead! How often do you return for follow-ups with your team?
Hi friends! I am Anna
I have PV AND I AM WONDERING IF THIS TREATMENT CAN BE USED FOR P. OR MF ?
My PV has transitioned to
MYELOFIBROSIS !
Thank you for your time
Remember that positivity is the best therapy.
Best wishes!
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2 ReactionsInteresting to hear shop516 state that they are waiting for the other shoe to drop. I have had the same feeling. Went through CAR-T in June at Univ. of Kansas Med. and cancer is in total remission. That being said, i know it can come back, and it is sometimes a challenge not to get stuck in that thought. I am really trying to just take one day at a time and celebrate that i am alive.
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1 ReactionI just mask up. Along the way someone in the hospital gave me 2 boxes of n95’s. Still going through them. I have pretty much that blood counts are stable now - I just get on with life. If normal is what you are seeking then I wish normal for you - more than anything else.
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4 ReactionsYes, actually the last labs looked good, my WBC and lymphocites were still low but the neutrophils are good. I know they also said they will fluctuate as well.
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1 Reactionyup, I hear you, Im trying to get back to " normal".
sometimes its hard to live in the moment when youre counts are down and your immune system is shot.
that means not being able to travel or visit with friends, but things are better each day.... they did say it could take up to a year for blood work to reach pre CAR T levels.
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1 ReactionNot excited? Well having been through this twice, it’s starting to become routine. And love I find is not something to really get excited about. It just is. There has been so much love and caring in the care for my health.
I just live each moment as it comes. We are not guaranteed the next. So I just live in the presence of “limitless undying love “ to quote John Lennon. It has just been an amazing journey for me. Sorry if I seem blasé.
And back to reality, my red counts are still below normal are igg and igm. Just life. I get my measles vaccine in February.
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1 ReactionHappy to see you went ahead with the CAR-T procedure. Now that’s all in the rear view mirror as you’re moving forward!
It’s ok that you don’t seem to be as excited as everyone else. We all process experiences differently! What is important, is that you had a complete positive metabolic response and doing well. Thank you for the update! Hopefully in time you’ll stop listening for the ‘shoe’. ☺️
You mentioned being fatigued yet. That’s all part of recovery for a while. From what other members have stated, it can several months to regain stamina. How are all your blood numbers looking?