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Myelofibrosis: Anyone have experience with Vonjo (pacritinib)?
Blood Cancers & Disorders | Last Active: Nov 1, 2025 | Replies (36)Comment receiving replies
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!🙃
Replies to "I’m happy to know the lower dose of Ojjarra is working better for you and wondering..."
@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
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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?