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CAR-T Cell Therapy: Introduce yourself and connect with others
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: 2 days ago | Replies (333)Comment receiving replies
@loribmt
Good morning LORI ! It is oct 3 2025 ! I am actually at a beach enjoying the water air sound of waves gently rolling! One of my favorite places to spent time !!
Follow up on my situation
I did have BMB MIDdle OF SEPTEMBER! Got unfavorable results which I sort of expected because I know how I feel and I try to educate myself on my symptoms! Sadly I have
MYELOFIBROSIS PRETTY ACUTE ! New drug the PRECIOUS OJJAARA 200 !
Now seventh day ! At very beginning I did have two side effects! Neusea and
Loose painful bowels!
I am taking one gelcap of IMMODIUM ! WORKS GREAT BUT MUst BE TAKEN BEFORE DIARRHEA BIGINS ! So now no GI PROBLEMS
I TAKE ZOFRAN ONLY AS NEEDED! IMMODIUM AS PREVENTION!
ON OCTOBER 9th I am GOING TO A A COMPLETE ULTRASOUND OF ALL MY ORGANS!
On Oct 14 th CBC AND ALL OTHER LABS TO see seeSERWHAT IS HAPPENING INSIDE MY BLOOD !I did lots of reading about OJJAARA
ONE ISSUE WHICH CONCERNS ME IS POSSIBLE IRREGULAR HEART BEATS ?! At your pleasure time , see what you can dig up ? I certainly would appreciate it greatly
! Thank you LORI ! I hope you are blessed to stay healthy and strong for many many more years ❤️
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Hi, @hanya. What a great place to be…at the beach, enjoying the breezes and the water! In a month I’ll be doing the same! Can’t wait! ☺️
Sorry to hear your recent BMB showing a possible change in your myelofibrosis. Hopefully with the new medication the Ojjaara will help slow the progression.
You mentioned having some side effects of the medication, such as GI problems. Glad to hear you’ve gotten that under control. What a pain in the…well, you know! 😅
As for possible heart related issues. They are listed in possible side effects but from what I’m reading they’re not common. Certainly if you experience skipped beats or heart palpitations report that to your doctor immediately.
Possible side effects of meds have to be listed, even if they are not common. I know some of what we read can scare the bejeepers out of us! But we also have to weigh the benefits against the possible risks! In the case of MF, if you can prevent any further damage of the marrow and keep producing healthy blood cells then it is important to stay on the Ojjaara.
Best wishes for only good news with your upcoming tests! Will you please let me know what you find out? Hugs…enjoy the beach for me!