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

I’m just connecting with this discussion which I see took place six years ago! I did a CAR-T trial in January for stage 3 ovarian cancer. First, four days of chemotherapy to knock out my immune system, then the actual infusion of my modified T cells two days later. I experienced low level CRS although it didn’t feel low level: fever of 101.9, vomiting, intense shaking. Two and three days later I had injections of interleukin (IL-2) which caused more inflammation, intense bone pain and a generalized rash. Now three weeks post infusion and just starting to get some energy back. I’ve had significant mental fogginess which has made it difficult to read or do much, but that is starting to clear. Personally, this was much more difficult to go through than front line chemotherapy, however I have no regrets. I will have CT scans in two weeks and that will show the outcome…nervous about this.

@floridaed Wishing you the best! Positivity does help. I trust you’ll be healed. Please keep us posted.

@kirkwilliams2049 Thank you for your wonderful message.
Merry Christmas to you.

@floridaed I am approaching my 2 year anniversary of my CAR T therapy in February. It was like magic! Interesting that you are “reaching out to your receptors” . In addition to CAR T, I did Ayurvedic healing with a guru in London (remotely). I see this as the same thing. I also meditate and use the energy that I acquire for healing. My motto is: Positivity is the best therapy.

I know you will do well. Good luck and best wishes! Oh and Merry Christmas!

At Mayo now. Had my CAR T infusion on Tuesday. Nurses signed a card wishing me a happy 2nd birthday.
So far I feel pretty good. I am 72 hours out and have only a slight fever. My ANC is low - which is to be expected.
I'm praying a lot and asking the Holy Spirit to protect and heal me. Doing some visual exercises as well. Imagining those receptors seeking out the cancer cells in my body and destroying them.

@loribmt GOOD MORNING! Wednesday morning! Nov 19th
Had good appointment and decent CBC . Liver ok
All numbers stable not going down . Some even up by hairline 😍Next appointment on December with HEM/ONC PA . I CERTAINLY CHALLENGE HER TO LEARN AS MUCH AS POSSIBLE ABOUT MF ,
Treatments, and most advanced!
She reassured me she is there for my needs ! Very important to be able to access medical specialists!
I have been reading and re-
Reading medical information! I am driving distance from MASS GENERAL AND DANA FARBER , MSK AND OTHERS . My husband will drive me where I need and want to go !
Thanksgiving in a week from tomorrow! I will be thankful if I can go to my church on the day!!
My new friend I met on this forum , we have been privately chatting and there for each other!
I will be reading posts on this forum !
Enjoy THANKSGIVING

@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.

@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

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
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