VonJo (pacritinib) effects

@lschmeit, I'm tagging fellow member @cupofsunshine, who has experience with Vonjo (pacritinib) to share their experiences.

Lynn, have you started treatment with Vonjo (pacritinib)? Any side effects? How are you doing?

Hello Colleen,
Thank you for your reply. Looking forward to msg someone who has used this medication I've had 4 doses so far. Found out better for me to take the medication right before I ate because otherwise it seemed like it sat on top of my stomach. I feel a little bit under the weather/light headed for the first few hours after taking so I'm still trying to figure out the best timing to take the medication. I take the second dose towards bedtime because most of the side effects are worn off by the time I wake up the next morning. No major GI effects so far.
I had to cut my statin and diltiazem by 1/2 so worried about cardiac side effects from doing so on top of those from the medication itself So far so good.
I freaked out initially about the potential cost of this medication. Thankfully the medication is now covered by my insurance Part D policy after a special letter was sent by my doctor. Therefore my co-pay applies to my Medicare deductible and out-of-pocket expenses. My out-of-pocket expenses will ultimately be limited. Better next year and even better in 2025. Though at this point near as I can tell this medication is mainly to be a bridge for a stem cell transplant. I am 68 yrs old, have Post -ET (essential thrombocythemia) MD/MF (myelodysplasia/myelofibrosis) Intermediate risk-2. I was treated for 7 years with hydroxyurea for ET. My platelet count has been dropping for a year and 2 weeks ago was 30, 000 having dropped 17,000 in about 6 weeks. Hope the levels increase soon.
Lynn

Happy Thanksgiving!
Lynn

I've been on Vonjo for well over a year. I took hydroxyurea for many years along with Aranesp and Reblozyl. Dacogen for the past year. I'm 76 and have MD/MF. I had reached the point where my spleen was so large that I was scheduled for radiation to try and shrink it. Two days before the procedure the doctor put it on hold and started me on Vonjo. It started showing results on shrinking my spleen within a couple weeks. My abdomen pain went away and my spleen is no longer a problem. After a year of being treated with Dacogen every 28 days it was stopped because it was taking me down so far that it was doing more harm than good. I was getting Blood transfusions every 1-2 weeks. My WBC was almost non existent, RBC way down. HGB went down as far as 6.1. I was struggling to keep it above 8 but I was fading fast. They told me they had no other options. We had been waiting for momelotinib to be approved by the FDA, but they were dragging their feet on it. When they stopped the Dacogen, I started feeling better quickly. All of my CBC numbers started to improve rapidly. They continue to improve week after week. First thing you know my CBC was great. HGB over 13, WBC, RBC, PLT all in the normal range! It's been over 6 months since I've needed any blood. My twice a week visits and treatments are now once a month. It turns out that the Dacogen that was knocking me down so far was also knocking down the cancer too, like it was suppose to be doing. So when I stopped it, things started coming back in a positive way very quickly. I still take Vonjo twice a day. 2 in the morning and 2 in the evening. The side effect that I most notice is the never ending diarrhea. Meds help, but it's always present. It was worse when I was on the Dacogen too. I am enjoying a wonderful life with my new found energy level. It's the best I've felt in over 10 years. I don't know how long all of this will last, but if it goes back down, we now have the new drug to try since it has been approved. I credit God for helping the doctors to bring me to this point. Never give up!

Thank you so much for your input Snakebite. Sounds like the Dacogen caused a number of problems gor you. Glad to to hear that is overview and you're feeling much better! I will keep that in mind if they ever bring Dacogen up as an option for me. So far so good just really morning nausea at this point. Odansetron helps
Happy Thanksgiving!
Lynn

Just an update. Been on Vonjo for ~ 10 weeks. Spleen smaller and no longer painful and platelet count got a good boost initially, now decreasing again.
Have tolerated Vonjo pretty well. Olanzapine controls the nausea well.
Scheduled for a stem cell transplant in a month. Vonjo has been a good bridge to transplant.
Lynn