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

I was diagnosed two years ago with PVCV but doctored for two years before that with the itching. All of a sudden the blood work and a bone biopsy confirmed PCV with Jack 2. I do notice shortness of breath at times. I was on Hydroxyurea for 6 months Until my platelets dropped. Right now I take one baby aspirin a day. I do have ear and headaches slight but constant and my oncologist. Hemotologist says it is from the PCV. I also find that keeping busy and exercise does make me feel a lot better. I have chosen to live with this disease, and not let this disease determine how I live. None of us ever know how long we have anyway, I research all the time and hopeful that maybe someday they have a cure. Hope you find some answers for you, make sure you ask tons of questions and keep yourself informed. Remember some people live 20 years or more with this disease .

Thanks so much as it is so strange as my bloodwork just came back really quite good?

I have similar issues with PV. It’s been a few years. I have opted not to take any medication other than baby aspirin. My platelets are stable at 700 and WBC at 18. I have fatigue and weakness all of the time. However, I have found like you, I’d I do early morning, moderate exercise I feel much better. And throughout the day, I will stop my work or resting, or whatever I am doing, and do a short exercise/cardio video and my oxygen level remains at 98% and heart rate 75-80. I am a,ways reinvigorated. I say moderate as I am cautious in moving. Slower pace, 15-20 minutes of movement and The energy level rises for a few hours. I had a similar thought as you, maybe endorphins …..maybe depression or sadness causing the tiredness/ fatigue. Whatever, just keep doing what I can. Volunteering to help and staying in touch with friends and family. I pray a lot and have been better at letting go and letting God take a hold of me…..also, I do research dietary issues that might help as well.
Gods blessings to you.

I have similar issues with PV. It’s been a few years. I have opted not to take any medication other than baby aspirin. My platelets are stable at 700 and WBC at 18. I have fatigue and weakness all of the time. However, I have found like you, I’d I do early morning, moderate exercise I feel much better. And throughout the day, I will stop my work or resting, or whatever I am doing, and do a short exercise/cardio video and my oxygen level remains at 98% and heart rate 75-80. I am a,ways reinvigorated. I say moderate as I am cautious in moving. Slower pace, 15-20 minutes of movement and The energy level rises for a few hours. I had a similar thought as you, maybe endorphins …..maybe depression or sadness causing the tiredness/ fatigue. Whatever, just keep doing what I can. Volunteering to help and staying in touch with friends and family. I pray a lot and have been better at letting go and letting God take a hold of me…..also, I do research dietary issues that might help as well.
Gods blessings to you.

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.

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.

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

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.