Questions & Answers

I have PV and am JAK2 positive. I was diagnosed two years ago and have been taking 1500mg Hydrea/per day for almost a year. It has been keeping by blood work and symptoms under control. I am under 60 and have concerns about staying on Hydrea long term. I just had a telemedicine appointment with a doctor at Johns Hopkins who also expressed concern about the long term use of this medication, particularly for me since I am also BRAC2 positive. We discussed two other options such as Jakafi or… read more

I saw a MPN specialist who suggested that I try this. I'd be curious to see if others have done it and what the outcome was.

I started noticing issues with brain fog about 2 years before my MPN diagnosis. Went to a neurologist for a full work up. They said it was stress. Now I know differently since I got the MPN diagnosis last year. Multitasking is impossible. I've flooded rooms in my house TWICE forgetting to turn off the faucet. Today I had to hang up my car keys because I got out of my car without putting it in Park. Thank God it was in my driveway and I could jump in and break. So I don't trust myself behind the… read more

I noticed that both my hematologists avoid to use the word cancer when talking to me. When I got the diagnosis, the hematologist downplayed ET so much, despite the fact that I was in fever, pain and had so much brain fog I had to take a nap during the appointment. All these are ET symptoms, but apparently not for my doctor. So I was fine in his eyes. Being young was the reason
This was very detrimental as my partner thought and still thinks that ET is a bit like a headache, nothing scary, and… read more

I am hoping someone can help. I am 37 years old, and had a bone biopsy a few months ago to see if a vertebral lesion was malignant. It came back negative for a metastasis, but showed myelofibrosis. I was referred to a hem/onc who does not think it's an MPN because of my age. I just did 23 and me DNA testing, and it came back positive for the JAK2 mutation. The hem/onc now wants to do a bone marrow biopsy, but I don't think it's necessary as I have all of the diagnostic criteria for Primary… read more

I have ET, Cal Axion 9 Mutation (Calr). I have been on HU for over a year, my platelets have reached 1.5 million. (They have been at 1 million for over a year.) I am wondering about side effects. Thanks in advance!