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

@altabiznet I really restarted all activities immediately. I should note that I spent 2 weeks being monitored in the cancer facility. The only thing I couldn’t do was drive for 3 months. They were afraid of neurotoxicity during that period. I really could have driven. Like I said: Magic!

@kirkwilliams2049 This does sound like magic. It is great that you had CAR T option for your condition. Where did you have CAR T transplant done - which Mayo Clinic?
I am 9 months post Stem Cell Transplant for a different condition and still very fatigued, need help with my daily activities with a prospect to start recovering only at 12 months post-transplant. But it is good to know, that if I need additional therapy in the future, CAR T will be my first choice. Best regards and thanks for sharing.

@kirkwilliams2049

I'm happy for you and also relieved to hear you share that your experience with CAR T was a positive one. Thank you for posting. My 33 year old daughter with Mantle Cell Lymphoma will undergo CAR T after her BTK-i treatment. I'm newer to this site and reading through the posts this week to acquaint myself with members and their helpful insight. Thank you again!

@pamcatl, I hope you saw the helpful replies you received from other members. Did you decide whether or not to get CAR-T cell therapy? How are you doing?

@pamcatl
Hi Pam This is my first post on this site. I had Car T Cell treatment on July 22 of this year
I just got my 3 months pet scan and no cancer is showing. I also had the exact same cancer you did and it was very advanced. This was my fourth time having non-hodgkins lymphoma It started when I was 48 went into remission for long time Over the past ten years has returned several times and the last treatment did not work. I am 71 now and I also was very hesitant about this treatment. I did have some side effects. I was only in the hospital for three days and then returned home. It took me till about three weeks ago , around the middle of October,
to really start feeling good enough to go for walks and cook and get out. I had pain, some nausea and few other discomforts, but one day I woke up and the side effects were gone and so far have stayed gone. My oncologist told me that she had heard this before by other patients. You do need someone you can count on to go through this therapy. I am holding on to the thought that I will remain in remission for a long while and hopefully be cured. I have granddaughters to watch get married and great grandbabies on the way. Lots of prayers to you and yours

@bangobingo Welcome to Mayo Connect, along with a congratulations on your CAR-T cell therapy! There are so many wonderfully positive stories from lymphoma patients receiving this treatment and yours is another! So thank you for sharing with the group! While the early days can be uncomfortable they are quickly forgotten when life returns to a level of certainty and normalcy again. Three months and you are now back up to speed! That’s fantastic. Sticking around to see your granddaughters get married and to see some cute little great grand-babies are strong motivators!

How frequently do you return for follow-ups with your oncologist?

@loribmt
HELLO LORI ! As you may recall , I HAVE GONE FROM PV TO MF NOW !
Took HU ! JAKAFIE AND NOW ON 150 mgs of
OJJAARA!! Almost two months with some interruptions because of acute side effects! JUST HAD FOLLOW UP ON NOV
NOV 13th 2025 ! Still anemic! Very low plates and low white blood cells !
Will continue to take OJJAARA UNTIL NEXT APPOINTMENT IN DEC 12th ! I do not SEE MUCH ABOUT OJJAARA FOR MYELOFIBROSIS!!
Read quite a bit about
CAR T CELL BUT DO NOT KNOW IF ANYONE WITH MF HAS TRIED CART CELL
PER MY HEM/onc !! My prognosis is DISMAL !! Do you have any information whether MAYO CLINICS ARE USING CAR T CELL TO TREAT MF ?
Transfusions are difficult because my spleen is HUGE !! I am aware that if anyone can get latest info!! That would be you !! Awesome LADY !! No rush on my part
HAVE A WONDERFUL THANKS GIVING !!
Thank you for your support to all of us who are part of this community!! With gratitude HANYA

Hi Hanya! Yikes, your oncologist sounds like a real downer telling you that your prognosis is dismal. Good grief! I’m not sure it’s time to throw in the towel yet! There are other potential treatment options besides Jakafi and Ojjaara. You’ve only been on Ojjaara for2 months with some lapses in treatment. So it’s really not a fair trial yet of the drug. Give it time. From everything I’m reading, it can be a helpful treatment for MF. I found a couple of sites that I’m posting for you that might be of interest. I have a couple of others sources, but since they’re subscription based, I’m not able to post a working link.

These two are actually pretty clear on how Ojjaara works:
This from the makers of Ojjaara with little videos.
https://ojjaara.com/about-ojjaara/how-ojjaara-works/
~~~
Article #2:
I seldom site WebMD as a source, but this article is pretty relevant to your situation and does a good job explaining how Ojjaara works as well. Towards the bottom of the article it cites the study and benefits of treating MF as well as reducing spleen size and helping improve symptoms of anemia.
~Treating Anemia and Myelofibrosis With Ojjaara https://www.webmd.com/cancer/lymphoma/ojjaara-anemia-myelofibrosis

Unfortunately, at this time CAR-T isn’t approved for use in the treatment of myelofibrosis. It’s still in the research phase. There are also ongoing clinical trials showing promise with the combination of current meds with a newer drug. Again, not for release yet. So fingers crossed that there’s an update soon. If I see anything I’ll post it.

Allogenic stem cell transplantation (using donor stem cells) is an approved treatment for MF. I have a good friend who had her transplant for MF the same time I had mine for AML 6 years ago…we met at Mayo and still keep in touch. She’s healthy, active and no signs of MF. We have other members in the forum who have also had a stem cell transplant for MF. There are some limitations and it’s not suitable for everyone. Has your doctor discussion the possibility of a stem cell transplant?

Thank you for the holiday wishes. Ours will be a little different this year. With the airline disruption my daughter wasn’t able get the flights to join us. So we’re hoping maybe for Christmas we can get together. But we’ll do as we’ve done in the past when not together, FaceTime Turkey Talk. 😂 I wish you and your family a lovely Thanksgiving! 🦃
Let me know what you find out at your Dec 12 appointment! We’ll wish for only good news!

@loribmt
Good morning Lori !! Thank you for such a thorough and thoughtful response. I read it several times , read the WEB MD ARTICLE ALSO .
When I READ INFORMATION ON WEB SITES , I sort through it , I also compare with accurate publication like MAYO AND NIH !
I was TOLD ! I have less than two years to live ! My husband was present ! I am am BELIEVER AND WILL LEAVE THAT DECISION TO MY LORD !
I am OPEN TO GET ANOTHER OPINION , and I am researching who the most experienced physicians are, anywhere in the country,
I am encouraged, and NOT GIVING UP , will take OJJARA BEFORE GIVING UP ON IT !
Doing What I should do and read and learn how to best take care of myself!!
Unfortunately, I do not recall that my physician nor his PA INFORMED ME OF THE PROBABLE, serious side effects!! Now I know, also , understand what my CBC RESULTS MEAN !!
My DRIVING FORCE TO CONTINUE TO BATTLE THIS , are my precious grandsons ! Besides, my house is not in order , nor are my finances 💰🙏
I need at least five years !!
AS OTHERS ON THIS SITE , I am GREATFULL FOR YOUR TIME AND OTHER VOLUNTEERS! Who share their experiences!!
HAPPY THANKSGIVING TO ALL! Sincerely HANYA

@hanya You are always such a bright spirit, Hanya! Your positivity is golden and as I’ve seen in my own life, it can be the driving force behind our survival! ☺️

Oh my gosh, I know it’s not funny but I couldn’t help chuckle with your comment about ‘your house and finances not being in order’…needing more time! Is there EVER enough time??? I’ve been through that myself. I’d always thought I was ‘fairly’ organized until leukemia hit out of the blue for me! Boom! Was in the hospital for 5 weeks the first time, with no certainty that I would return home.
My husband and I always had a tacit division of labor. He had his jobs and I had mine. Along with household issues, I also paid bills, fortunately through online checking. But husband had no clue of the utility accounts, passwords, etc. So here I was, plugged into my chemo in a hospital bed with my iPad, opening a new email account for bills only, so that my husband got the notifications, when to pay, etc. We are both organized in our own right, but when it came to merging our ‘jobs’ it was obvious we had a lot of work to do. I believe we are now better organized to the point where we’ve made it easier for our daughter to find pertinent paperwork/financials. But our house…le sigh…no matter how hard I try there is always excess somewhere!

When we’re not feeling well, the last thing we want to focus on is cleaning and prepping for the end. We should be enjoying our time on the planet! So whatever you feel you need to do, mete it out…set a timer and only do so much work at a time, devoting the rest of the day to focus on essentials and joyful moments.

Now, for that 2nd opinion on your health…if you’d like to make an appointment with Mayo Clinic, here’s a link to get you started!
http://mayocl.in/1mtmR63
There are 3 Mayo Clinic Campuses. Rochester, MN
Phoenix, AZ and Jacksonville, FL. They all have impressive hematology departments. I wouldn’t be here today without the amazing care I received in Rochester. So of course I’m a little biased. ☺️

Happy Thanksgiving to you and your family, Hanya. Hugs.