Massive spleen and dangerous low platelet count

Hello @derikburger and welcome to Mayo Clinic Connect. It sounds like you may have been diagnosed with Myelofibrosis. Is that correct? Help me understand what you are looking for so I can best help.

Amanda-I am 74 & was diagnosed with myelofibrosis in 2016. Just interested in overall discussions of treatments--I started with hydrea & switched to Jakafi a few years ago. Thank you.

Hi Dillydally,
There are several discussions where members are talking about myelofibrosis and treatments. Here are a couple to get you started:
- Myelofibrosis* https://connect.mayoclinic.org/discussion/myelofibrosis-24a025/
- Primary Myelofibrosis diagnosis in 40’s https://connect.mayoclinic.org/discussion/primary-myelofibrosis-diagnosis-in-40s/
- Medication for JAK2 https://connect.mayoclinic.org/discussion/medication-for-jak2/

@derikburger, have splenectomy (removal of the spleen) and/or bone marrow transplant been discussed as options for you?

No. Not yet. Hoping to enter drug trial soon.

Myelofibrosis JAK2 I’m currently on Jakafi and just completed cycle one of vidaza. White cells keep rising

Hi @tampakaren, how are you feeling?

derikburger @derikburg My PV caused Myelofibrosis, I was diagnosed Dec. 30, 2022 . Jakafi, Hydroxyurea , INREBIC (fedratinib) and phlebotomies - All these meds lower numbers but your with your low numbers, the disease is progressing. That's really hard because less options. How are your pain and fatigue? (I've had bone pain for few years and getting worse) Just got handicap sticker and walker/ "Don't want use them and try NOT too but my legs stop working and I get stuck" I miss having normal functioning legs" I can walk, but it's when I over do it and my body stops working and I shuts down! Pain and fatigue sometimes level 10. I'm so sorry (my liver and spleen are double the size) I can't be in control something I have no control over, but learning, education, researching and asking questions, talking to those that had it helps. Prayers, my friend
Did you have PV or is it Primary Myelofibrosis?

I was on Jakafi for 8 months and went through 6 cycles of Vidaza treatments which were 5 days every 28 days. The treatments haven’t resulted in controlling high white cells so I’m entering a clinical drug trial using Fedratinib. What do you think?

My diagnosis is Atypical Chronic myeloid leukemia. JAK2 mutation. There isn’t a protocol to treat it specifically so entering drug trial. Fedratinib this week.