I have JAK2 ET and MPN: Anyone else have these symptoms?

Thank you for this. I need to examine if my fingers turn white. I would venture to say they are a deep red color in the cold. I am just so intolerant. Painfully intolerant. I also would say my skin looks different. I don't know if it is from the medication as I said in my comment. The left side of my face (cheek) also gets redder than the right side. Go figure. I do have a follow up with my Hem/Onc doctor in the next few weeks. Thank you again for your response. All of this is a journey. I am glad I have the forum as I said previously.

I have MDS/MPN-RS-T which is an extremely rare overlap disease. I have multiple gene mutations on both the MDS side and the MPN side. The RS-T component is Myelofibrosis. I take one Hydrea 500mg tablet 5 days per week and two Hydrea 500mg tablets on Tuesdays and Fridays. I also take a daily low dose Aspirin every day. I get blood labs every month. I get the burning in my feet and calves but not sure if it’s related to the MDS or MPN disease. I underwent a whole Exome Sequencing test which indicates I have Sensorimotor Axonal Polyneuropathy, CMT2 and CMT4B which are PN diseases. It’s complicated but so far it’s bearable. Hopefully, the blood cancer won’t mutate to full blown CML requiring a stem cell transplant.

Good Morning. I have the Jak2 mutation and diagnosed with ET. I have been on Hydroxyuria for 2 1/2 years and a baby aspirin. I take my meds before bed. I feel a burning in my abdomen which wakes me up to urinate. I have a hard time going back to sleep because I feel hot, like I am cooking on the inside. Does anyone experience these symptoms? Best Regards

I have PV and have burning in my feet and calves. I’m taking Jakafi and low dose Aspirin.

Good to know that u are doing good mam. I'm 32 and recently diagnosed with ET jak2 positive. My platelets are around 900 to 1000. Please share your experience at the time of diagnosis.

Suggest you tell your Heme doc and your pharmacist. The latter may have helpful info to share w/your doc.

Sorry you having these symptoms. Definitely consult with your hematologist/oncologist about this. If you are just being seen by your general doctor, you need to have a specialist follow your case. I take the HU 4 hours before I go to bed with 16 oz of water and keep water next to my bed. I drink a lot of water throughout the day on HU and non-HU days. I take it 2x week. I also take 1 baby aspirin and iron daily. I drink OJ with iron and eat blueberries, strawberries, and orange Halos daily. Perhaps, they might consider cutting back on your HU and building up? My doctor initially wanted me to start at 3x a week. I opted for 1x week for a month, then the second month I went to 2x week. I've been at twice a week for 10 months and my numbers are stable. There are also other options for treatment that may be a better match for you. Sending positive thoughts your way!
Karla

Going for another bone marrow aspiration and molecular panel on November 29th at Sloan. Plus something called a Koch procedure. Anyone know what that is? Apparently, my red blood cells are too large and I have a high number of immature white blood cells.

Thank you for your post, tips and positive thoughts. I am going to incorporate some of your practices. I see my specialist next week, and I plan to discuss concerns. All the best in your journey as well!!!

I have been struggling with ET for 18 years now and have found heavy , really heavy exercise helps a lot. I don’t know if it’s the endorphins or maybe my blood getting heavily circulated but it really helps but you have to be willing to go do a 50 mile bike ride when you feel like cr$p. I recently went from Hydrox to Pegasus and my platelets have gone from 700,000 to 450,000 but I feel worse than ever. Not sure why? I also have some very large bruise marks about the size of an orange where I inject myself in the side of the stomach that will not go away. The most concerning is my vision seems to be getting more blurry. It’s so hard to tell what is just from age as I am 68 and what might be from the drugs and disease.