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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 23 2:17pm
In reply to @loribmt "Hi @hanya, Regarding the message you sent to @rivieramaya2009 wondering who can read your messages. Here’s..." + (show)
Profile picture for Lori, Volunteer Mentor @loribmt

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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@loribmt Thank you. I think I have it figured out now!

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drmshadowrider | @drmshadowrider | 6 days ago
In reply to @davi0937 "Good morning Diagnosed in June 2025 with Myelofibrosis. WBC and platelets normal. Hemoglobin between 8 and..." + (show)
Profile picture for davi0937 @davi0937

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

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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

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davi0937 | @davi0937 | 6 days ago
In reply to @drmshadowrider "I, like you, have low hemoglobin counts (8.1) that cause fatigue and low energy. You did..." + (show)
Profile picture for drmshadowrider @drmshadowrider

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

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@drmshadowrider

My apologies- the clinical trial is full - not taking additional patients. Do you have Myelofibrosis with no other symptoms than anemia?

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drmshadowrider | @drmshadowrider | 6 days ago

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?

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davi0937 | @davi0937 | 3 days ago
In reply to @drmshadowrider "I have the typical high and low blood count concerns that most myelofibrosis patients deal with,..." + (show)
Profile picture for drmshadowrider @drmshadowrider

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?

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@drmshadowrider the clinical trial is in phase 2. No combination but 1 injection monthly. My hemoglobin went from 8.7 to 9.8 in 1 month. The difference in how I feel is significant. DISC is the company. The drug is 0974.

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drmshadowrider | @drmshadowrider | 3 days ago

Fantastic results. Thanks for the update

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