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/
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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!