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?
Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.
Remember that positivity is the best therapy.
Best wishes!
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
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 @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?
Love your thoughts. I am doing quarterly follow ups until February. I have been in a 2 year clinical trial clinical trial. I feel like the most cared for patient in the history of medicine.
Thank you Lori for what you do as a volunteer!!
None of my doctors have discussed BMT ! I have read much information about the process and potential benefits!! Indirectly, I am under impression that I am not a good candidate! First , my age ! Huge spleen, enlarged liver ! And other serious issues like coronary artery disease, high blood pressure! I am praying for 8 more years to see my grand sons grow up !! Have next oncology appointment in few days ! Going to YALE FOR FORTH BMB to confirm MYELOFIBROSIS!
Already saw MPN PV AND MF SPECIALIST AT YALE !
Thank you again !! Stay well
thank you for those encouraging words, you really hit the nail on the head.
we go through so much just to stay alive and then, its like, ok see ya, go live your life. wait, what? how do i do that ?
but I will look forward to getting my "AH HA" moment and thank you.
I go every month for blood work and every 3 months for PET scan.
Good morning, @hanya. Thank you for such a sweet reply. Having gone through and survived my own blood cancer odyssey gave me the opportunity to pay it forward. As with so many other members here, we’ve ’walked the walk’ and in the unique position of being able to offer support and hope where we can. ☺️
It sounds like you have a great team of doctors at Yale. Having a specialist in MPN/MF is a huge advantage so that you get the right diagnosis and treatment. They’ll do their utmost in keeping you healthy so you can watch your grandsons grow up! What a special incentive for you to keep moving forward and staying positive! Our attitudes can make an enormous difference in how we cope with the challenges tossed at us.
Wishing you only good news on your upcoming BMB! ☺️
Please let me know how everything goes! I didn’t ask before, but have you been on any treatments for your PV?
I was phlobotomized many times! I took HU FOR ALMOST TWO YEARS!!
Reduced need for nasty phlebotomy but did not help burning skin ! Spleen did not decrease and blood numbers were still high !
Started taking JAKAFI! About a year ago! Took 10mgs twice daily! In four five months! It crashed my numbers down below minimum range ! Became fatigued and anemic!! Doc reduced JAKAFI BY HALF !
Taking 5 mgs twice daily!
Controls skin burning! Keeps all numbers steady !
Now ! Up to me now when I go back to YALE TO CONFIRM MF 🥵needed eye surgery so waited ! For BMB . My understanding is that my treatment will not change even if MF IS CONFIRMED with BMB !
My QUESTION IS ! Does BMB GIVE CERTAIN PROGNOSIS?? Another words , how much time do I have !!? Going to my local onc/hem in few days !
Lori !! Thank you again for your prompt response
You are an ANGEL
Hehe I’m no angel…ask my husband!! 😇😂 It sounds like you’ve hit a sweet spot with the Jakafi dosage keeping your blood numbers steady! It can take some trial & error & fine-tuning to find the best dosage for each patient. We’re not ‘one size fits all’ when it comes to medicines and treatments.
The BMB will allow your doctor to check the health of your bone marrow. With MF, the usually spongy marrow becomes scarred and fibrous which can interfere with normal blood cell production. So a sample of the marrow tissue and blood cells directly from the source of the blood manufacturing site can give a clear picture to your doctor. It can also help the doctor determine the extent of any changes.
If the Jakafi has been working fine for you and your numbers are remaining steady then I would think, at least in my experience, that it’s encouraging. I’d put those thoughts of ‘how much time do I have’ out of my head and keep living life like ‘they left the gate open’, because no one knows how much time they have left. Heck, any of us could be hit by a bus…with no warning but a horn.
While there’s life there’s hope. But, just to be safe, look both ways when you cross a street. 😄