Myelofibrosis: Anyone have experience with Vonjo (pacritinib)?

I have the typical high and low blood count concerns that most myelofibrosis patients deal with, caused by the Jak2 mutation found in bone marrow. I'm extremely interested in the results of your clinical trial. Do you know what combination of drugs is being used in the trial?

I, like you, have low hemoglobin counts (8.1) that cause fatigue and low energy. You did not say what medicine is in the shot? Please post results ... if positive, I want to discuss with my Dr.
Thank you in advance

Good morning
Diagnosed in June 2025 with Myelofibrosis. WBC and platelets normal. Hemoglobin between 8 and 9. I’m 65. High risk due to mutation SRSF2 along with MPL. Over 20% chance of this turning into AML. I am seeing 2 md at Mayo a BMT specialist and a Clinical trial specialist. BMT MD says best to wait on BMT until a second mutation or other s symptoms. I have no co- morbidities and am in very good health otherwise. I started a clinical trial last week for low hemoglobin. I go to Mayo weekly to see if shot given increases hemoglobin and if successful could be a monthly shot for x years. It’s unnerving to wait on BMT but I understand that the risks with BMT are high and my quality of life right now is ok. Let me know if you have questions or information needs. I will say the mutation you have really impacts the course of the disease

Hi @hanya, Regarding the message you sent to @rivieramaya2009 wondering who can read your messages. Here’s a reply I wrote to her. Hopefully this is helpful for both of you.
https://connect.mayoclinic.org/comment/1421351/

@rivieramaya2009
Good evening! I am also wondering if anyone can see and read our posts ! I will text one of the mentors and ask her tomorrow morning
96 are my platelets !! 😇 I must have texted incorrectly! Wow ! You are very thin! Your HGB hemoglobin is less than normal! My was only 8,5 last tests! I am being treated at a teaching cancer centers, I will share once we know our posts are private ! I believe that my previous hem/onc
Failed me by not paying closer attention to my monthly numbers! He kept me on JAKAFI even though all my numbers were dropping!! Now ! The GOOD LORD NEEDS TO HELP ME GET SOME BLOOD ! I feel that I should be able to live much longer than this new doctor told me !! It was shocking 😮
I am in CT SO ITS 8:40 pm here ! Yes I get fogg and groggy often! Read that it’s lack of oxygen because my HGB is low so not enough oxygen going to my brain ! It affects my eye sight especially reading!
So your platelets are high , are you taking a baby aspirin every day ? If not , ask your doctor about it ! Did anyone test you for gene mutation ?
I have JACK 2 mutation
Tomorrow I am going to my daughters for the long weekend! One of my grandsons just called to make sure I am coming tomorrow 😊
I will finish so I can get ready to sleep . I get up very early so get tired . If I find out whether our texts are private I will let you know !
Take care of yourself!! Don’t diet ! It’s ok to eat some bread and pasta ! I will text as soon as I can .GOD S BLESS US

@1pearl my UCLA doctor is very nice but when I selected him we did not know I have myelofibrosis and polycythemia Vera. It was confirmed with the bone marrow biopsy. He is an oncologist/hematologist but doesn’t specialize in MPN’s. My last 2 visits with him he has been very dismissive of my complaints about episodes of fatigue, night sweats and pain. Maybe those issues are just age related I am 71. My bloodwork is relatively stable at this time which is great. But, maybe a doctor that specializes in MPN’s would look at it differently as some levels are high, some low etc… I’ve looked at some doctors at City of Hope in Duarte, CA also Cedar Sinai and Stanford. But if I can get an appt in Duarte that is where I feel may be the best place to get at least another opinion. There are also a couple of MPN specialists at UCLA but wasn’t sure about that since I already have a doctor there just in a different place.
It is all just a lot to digest!
I pray you continue to do well and I am very thankful I have regular Medicare and a supplement. It does allow me options

Lynda

Hi @lyd0218 ,

Thanks for your message. Sure, I would be happy to share with you the doc I saw through Kaiser who works for both City or Hope and Kaiser with schedule the rotates monthly as to where he works. He was very nice, listened to my concerns, and answered mine and my husband’s questions. I have no symptoms now, but he shared what I should watch for. I am blessed to still have no symptoms for which I am very thankful to God. His name is Joshua Mansour and he is actually a bone marrow transplant specialist as Kaiser does not have MPN specialists. I am in no need of a bone marrow transplant at this time he told me, but he doesn’t have a crystal ball to tell me if I will need one in the future.
Please share what your experience has been with docs through UCLA. I was considered changing my Medicare plan during open enrollment so I could see a MPN specialist through UCSD as I am not near any other places I am aware of that have them. I really do not want a video appointment as I prefer to meet docs in person. Maybe I would have a different opinion if I had any symptoms.
Hope your week is going well.

I’m happy to know the lower dose of Ojjarra is working better for you and wondering if everyone in this group can read our messages to each other? Maybe someone will tell us. It would be nice to exchange e-mails, but not if we talk about our grandchildren, et…. Currently, I’m not on medication, and haven’t been for at least 25 years. My life has been upside down for 5 years, and positive my mutations to MF were caused by stress. Not genetic—metabolic. My hemoglobin is 10 which is low. Normal is between 12-15 for women. I’ve never heard of a high number like yours—-96? My platelets are 583,000, and not sure of WC. And you are sure right when you said people don’t understand what it’s like to live in our bodies. I’m trying my best to avoid simple sugars and keeping carbs as low as possible. Makes it hard when you have a husband who loves pasta! Having shrimp and pasta tonight. I’ll eat a little and a salad. I’ve noticed cutting down on bread, pasta, rice, potatoes has really helped my inflammation in my stomach. Am 118 pounds and don’t want to lose more weight. Sugar feeds cancer. Don’t let anyone tell you it doesn’t. Happy to hear you made it to church Sunday. Let’s continue to be positive and trust in Our God. Take care Anna.
PS—-do you ever encounter brain fog??? I sure do. Sometimes my brain is clear and other times, not so much!🙃