Myelofibrosis: Anyone have experience with Vonjo (pacritinib)?

@davi0937 that is great you slipped into that trial just in time! I think hemoglobin affects how people feel and may make them feel short of breath too. I only showed slightly low hemoglobin on the day of my bone marrow biopsy and it miraculously improved on its own on all my subsequent labs for which I am grateful to God with my taking nothing.
You are fortunate to still get to make your decision next year on which Medicare plant to take. I haven’t had medical insurance from my work for quite a while, so I was on my husband’s and it was not helpful for what I have I have with my swollen non painful right finger joint so I took Medicare when I turned 65. I have always been well so just took an Advantage Plan. With the Advantage Plan I have currently, if I needed a bone marrow transplant, I would have it at City of Hope which I am not sure is better than UCSD which is closer. I really do not know either’s track record on bone marrow transplants for myelofibrosis. Honestly, unless I need one I am not motivated to get one. I was not aware that the mutation you mentioned that you have made transplant such a sure need in the future. I was not told mine does, so I hope that is correct. I did see a bone marrow transplant specialist from City of Hope so I would think he should know. I know he seems confused why I was sent to him but he was very nice. He made it seem like I am in a category of myelofibrosis that really is not defined but somewhere between prefibrotic myelofibrosis and the next level because pathologist graded my bone marrow fibrosis as 1-2 of 3 which really is not how it is graded. I have no symptoms but do have high platelets.
Have a good week!

@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.

@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.

@cindyem Cindy, thank you for your information, it is wonderful that’s it’s working for you. My husband is on Vonjo which is supposed to help with low platelets but so far staying the same. From what I read about Ojjarra it could make platelets go lower. I keep praying there is something that will help. Thanks again for taking the time to send encouragement. God bless !

@heimbca that’s good to know you are having no issues. My bone marrow shows I have MF and PV. At this time I’m only on hydroxyurea. My doctor is very dismissive of my symptoms so I’m in the process of seeking out a new doctor.

❤️

Thank you @1pearl - maybe we will do the BMT at the same time 5 years from now! I’ve read the CALR is the least risky mutation- that is good!

@davi0937
I am so glad to hear you are doing pretty well. I thought you posted that you have CALR mutation but I think I am wrong as you just posted MPL so my mistake. I have CALR 1 , TET2, and DMNT3A. I have normal red cells, normal hemoglobin, slightly high white cells at 13, and High platelets that fluctuate but are always high this past year. I am taking low dose aspirin only. I am not interested in Hydrea which I was offered. My spleen is normal on CT scan of pelvis and bone marrow specialist also told me they do not rush to do them and I do not need one for at least five years and maybe never. I am 66 now.
I hope you get your hemoglobin level normalized from doing the trial you are on. I think you are definitely right that the mutations affect the disease a lot and I was told also that more mutations can be acquired with passing time.
Have a blessed weekend!

Would like to see group. I’m on Jakafi. Still messing around with dosage.

@hanya