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Myelofibrosis: Anyone have experience with Vonjo (pacritinib)?
Blood Cancers & Disorders | Last Active: Nov 1 7:29pm | Replies (36)Comment receiving replies
@davi0937
I appreciate knowing that if I do need to have a BMT in five years, I will have someone along to do one with me. Hopefully, both of us will never need a BMT then or ever. Maybe what they are working on in trials still for CALR will be found to be a cure to lower our CALR mutation percent so no BMT needed. That would be my preference. In the meantime, I hope we both continue to feel just fine. Are you taking any other meds or just what you get for the trial you are in to increase your hemoglobin? Thanks for sharing.
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@1pearl yes I’m in a clinical trial - phase 2 that has been successful increasing hemoglobin for the participants. I had one shot first week of October and go to Mayo weekly for vitals and blood tests. The next shot scheduled for last week in October then monthly after this. I was the last person allowed into the trial.
With my mutation SRSF2 I will need a BMT. It seems inevitable. My course of action is to continue to stay fit, eat well and make sure whatever Medicare plan I pick when I retire in April covers Mayo and this illness. We are fortunate that this disease research has come so far compared to even 5 years ago. With GVHD the medication’s and effects are much more minimized. The expected years after BMT when a patient reaches 2 years post have extended significantly.