Myelofibrosis: Anyone have experience with Vonjo (pacritinib)?

Hi @rivieramaya2009, Just popping into the conversation to answer the question you posed about who can read your messages written in the forum.

Because this is a public forum, anyone can read these messages between other members. However, people need to become members to be able to reply. Just to clarify, if there are private messages written between members those are, indeed, private. No one has access except those to whom the private messages are addressed. So if you want to reply to members such as @hanya privately about grandchildren and such, you’re welcome to do so and those messages are private.
To write privately, simply click on the avatar (picture or silhouette on the left side of the reply). It will take you to the person’s bio. Underneath their photo (avatar) there’s a little icon of an envelope that says Send Private Message. That’s all there is to it!
The beauty of Connect is that sharing our collective experiences may help so many other people. In that light, it’s really special when most of the conversations stay public.
Let me know if you have any questions! Was this helpful for you?

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!🙃

@rivieramaya2009
One of my very long time friends is named Susan !
Your grand daughters are close to age of my twin grand sons ! My husband and I have spent lots of time caring for them since they were born!!I live 50 miles away but I stay over there for couple of days a week
! I am now on my fourth day of my lower dose of OJJAARA! I feel pretty good!
I was able to get to church on Sunday !!I missed previous Sunday because of being sick ! Susan ! I am wondering are you getting any treatment?? All of my blood numbers were below minimum below the range !
My HEMOGLOBIN WAS 96
Previously I took JAKAFI ?
How are your numbers?
Text any time! As soon as I find your POST ! I will respond , my fear is that I will not be able to take care of myself! Generally speaking, I think people do not understand what we are dealing with and how it feels to be in our bodies!
I am always here for you ! Many other people on this site understand and empathize!
I try to read about my illness and treatments available! I read other cancer centers also . Stay strong 💪 keep speaking to GOD

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.

@1pearl would you mind sharing your doctors name at City of Hope? I’ve been considering going there for a second opinion. I have Myelofibrosis and Polycythemia Vera. I’m on hydrea and right now my blood numbers are stable. My UCLA doctor as of late has been very dismissive of some of my symptoms and that’s what I would like another opinion or a change of doctors. Thank you

Good morning, Anna. When I read your message, I have to tell you, I got a little teary-eyed. Your reason is my reason for wanting to live a long life! I pray every day for that! Sometimes I get frightened and Through prayer, Jesus give me peace. My granddaughters are 14 and 12 and give me such joy. So fortunate they’re only 10 minutes away. Let’s stay in touch. It was nice to see your message today. Sometimes I feel so alone! I love your name—my sister’s name is Anne. Hope you have a good day. Susan

@rivieramaya2009
It’s good to hear from you !
My name is ANNA
IN UKRAINIAN ITS HANYA
YES I NEED PRAYERS AND AM A STRONG BELIEVER
I BELIEVE THAT GOD HAS GIVEN ME GOOD DOCTORS WHO WILL HELP ME LIVE LONGER SO I CAN BE WITH MY LOVING GRAND SONS WHO ARE ONLY 13 !! I am fortunate they live hour away and my daughter alone to stay with her every week for a few days so I can be with my grand boys ! Honestly! They are my reasons for wanting to live longer ! I am in Connecticut
You take of yourself and GODS BLESSINGS

What is your name Hanya? I will say some prayers for you that Ojjarra will start doing what it’s supposed to.🙏🏼
Susan

@rivieramaya2009
Hello I am glad you responded to my post , since I texted last , I was doing well for two weeks on
200 mgs of OJJAARA ! Suddenly I became very sick to my stomach and no medication help the nausea!! Could not keep anything down ! Stopped taking OJJAARA, for few days, then developed bad diarrhea! Was sick for six days ! Went to urgent care they tested me for everything under the sun !
All came back NEGATIVE!
As soon as I felt , I restarted lower dose 150 mgs of OJJAARA! It’s only been three days so I PRAY 🙏
I STAY GOOD ON THIS LOWER DOSE ! GOD KNOW I NEED THIS TO IMPROVE MY BLOOD 🩸 NUMBERS WHICH ARE EXTREMELY LOW , Below the minimum!
I HAD PV FOR MANY YEARS AND WAS GIVEN ALL REGULAR DRUGS TO STOP MY BONE MARROW FROM PRODUCING!!
I think HU AND JAKAFI ! Both brought my numbers
I was shocked when I was low below range ! I guess I should have paid closer attention to monthly blood tests! I left it to my doctor
As it was ! I noticed how depleted I was and told the doctor I was cutting dose by half ! But by then , the numbers did not get better!
Now struggling to increase all my blood numbers ! I FEEL GOOD THAT I MAY IMPROVE WITH OJJAARA
ALSO UNCERTAIN OF MY FUTURE!
I hope to hear from you
Stay strong and positive

@hanya I was diagnosed with MF, June 2025 after 30 years with ET. Presently, not taking meds—“wait and see”. Not awful side effects, but there. Stomach aches, headaches, fatigue, joint pain in one shoulder, just not feeling well! Like you said, hard to find out much about this rare disease anywhere! I pray your test results improve. Let’s stay in touch!