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Profile picture for Lori, Volunteer Mentor @loribmt

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. 😄

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Replies to "Hehe I’m no angel…ask my husband!! 😇😂 It sounds like you’ve hit a sweet spot with..."

@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 ❤️