Myelofibrosis

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 davi0937 @davi0937

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!

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❤️

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In reply to @heimbca "@hanya" + (show)

@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.

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Profile picture for cindyem @cindyem

I posted a year ago about seeing a specialist in Myelofibrosis at Mayo Clinic. Dr. Tefferi put my on a half dose of Ojjarra to make sure I could tolerate it. My platelets were very high as was my WBCs and I was anemic. I had an enlarged spleen. The Ojjarra brought down the spleen size and stabilized my platelets and WBCs and anemia. They were still in the abnormal range but improved.
My annual visit to Mayo Clinic was uplifting for I am still not feeling any effects of the Myelofibrosis or medication. Dr. T decided to increase the medication to the full dose. It's been three weeks and my new tests reveal that everything in my CBC is totally in the normal range for the first time in four years. My biggest relief was seeing my platelets come down as my risk for clots was high.
I hope that gives you some hope for improvement.

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@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 !

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Profile picture for davi0937 @davi0937

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!

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@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.

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Profile picture for 1pearl @1pearl

@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.

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@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.

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Profile picture for davi0937 @davi0937

@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.

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@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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Profile picture for hanya @hanya

Hello friends!!
I have confirmed MYELOFIBROSIS! Just started taking OJJAARA ABOUT TEN DAYS AGO ! This is post PV L
POLYCYTHEMIA VERA !
I would really like to START A MYELOFIBROSIS chat on this site ! I do not see many posts about this ?
I have not BEEN ON VONJO
SO CAN NOT COMMENT
MY DOCTOR DID MENTION IT
BUT I AM OK TAKING OJJAARA ! I WILL HAVE MY FIRST BLOOD WORK IN FIVE DAYS!! Excited to see the results
Because NO BAD SIDE EFFECTS !! Good friends

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@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!

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Profile picture for rivieramaya2009 @rivieramaya2009

@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!

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@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

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

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Profile picture for rivieramaya2009 @rivieramaya2009

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

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@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

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