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Myelofibrosis: Anyone have experience with Vonjo (pacritinib)?

Posted by dax1million @dax1million, Oct 8 8:57pm

My husband has myelofibrosis. He has low platelets and has had 72 platelet infusions since the first of February. His cancer doctor started him on Vonjo three weeks ago, platelets are still low. Does anyone else have experience with Vonjo.

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Profile picture for rivieramaya2009
rivieramaya2009 | @rivieramaya2009 | Oct 21 10:28am

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

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1 reply
Profile picture for lyd0218
lyd0218 | @lyd0218 | Oct 21 12:21pm
In reply to @1pearl "@davi0937 that is great you slipped into that trial just in time! I think hemoglobin affects..." + (show)
Profile picture for 1pearl @1pearl

@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!

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@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

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Profile picture for 1pearl
1pearl | @1pearl | Oct 21 1:24pm

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.

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1 reply
Profile picture for hanya
hanya | @hanya | Oct 21 5:34pm
In reply to @rivieramaya2009 "Good morning, Anna. When I read your message, I have to tell you, I got a..." + (show)
Profile picture for rivieramaya2009 @rivieramaya2009

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

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@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

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Profile picture for rivieramaya2009
rivieramaya2009 | @rivieramaya2009 | Oct 22 3:30pm

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!🙃

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2 replies
Profile picture for Lori, Volunteer Mentor
Mentor
Lori, Volunteer Mentor | @loribmt | Oct 22 7:33pm
In reply to @rivieramaya2009 "I’m happy to know the lower dose of Ojjarra is working better for you and wondering..." + (show)
Profile picture for rivieramaya2009 @rivieramaya2009

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!🙃

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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?

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Profile picture for hanya
hanya | @hanya | Oct 22 7:50pm
In reply to @rivieramaya2009 "I’m happy to know the lower dose of Ojjarra is working better for you and wondering..." + (show)
Profile picture for rivieramaya2009 @rivieramaya2009

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!🙃

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@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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1 reply
Profile picture for lyd0218
lyd0218 | @lyd0218 | Oct 22 8:15pm
In reply to @1pearl "Hi @lyd0218 , Thanks for your message. Sure, I would be happy to share with you..." + (show)
Profile picture for 1pearl @1pearl

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.

Jump to this post

@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

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1 reply
Profile picture for hanya
hanya | @hanya | Oct 23 7:24am
In reply to @lyd0218 "@1pearl my UCLA doctor is very nice but when I selected him we did not know..." + (show)
Profile picture for lyd0218 @lyd0218

@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

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@lyd0218
My personal experience
The symptoms you mentioned I had and suffered from them ! I had PV POLYCYTHYMIA VERA FOR MANY YEARS! NOW ITS MOVED TO MF MYELOFIBROSIS! I would
Look FOR ANOTHER DOCTOR WHO SPECIALIZES IN THESE ILLNESSES! YOUR DOCTOR SHOULD NOT
DISSMISS YOUR EXPRESSED SYMPTOMS!!
You DESERVE BETTER CARE AND THIS DOCTOR IS NOT FOR YOU!! Do NOT BE SHY OR AFRAID TO GET A GOOD DOCTOR ! Every ONE HERE IS PULLING FOR YOU ! Good luck! STAY STRONG

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Profile picture for Lori, Volunteer Mentor
Mentor
Lori, Volunteer Mentor | @loribmt | Oct 23 9:40am
In reply to @hanya "@rivieramaya2009 Good evening! I am also wondering if anyone can see and read our posts !..." + (show)
Profile picture for hanya @hanya

@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 @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/

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