Questions & Answers

Here are some that I respect:

General Information
National Library of Medicine: medlineplus.gov/healthtopics.html
For general information about a condition, use Google to search for: NIH condition-name patient education
or
condition-name patient education site:*.gov
https://www.mayoclinic.org and then select Health Library, or
https://www.mayoclinic.org/diseases-conditions
https://my.clevelandclinic.org/health/diseases
Specialized Information
https://pubmed.ncbi.nlm.nih.gov/
https://www.uptodat… read more

I’ve just started hydrea after two years of venesections and monitoring of my PV. Bloods are now in the red zone and finally have been taking the proffered hydrea. A few days in, I am struggling with extreme tiredness and low level dizziness. Can anyone tell me if this is normal in the early weeks of taking hydrea 500mg daily?

I began thinking about the tremendous changes a diagnosis of an MPN brings to one’s life. For me as an old nurse, but one who always tries to keep abreast of what’s going on in the medical world, it was a shock to be told after routine annual labs that I was being referred to an oncologist due to my CBC being “out of whack,” with the likelihood of a blood cancer that I had never heard of. Then came the very painful bone marrow biopsy with confirmation of the JAK2 mutation pointing to… 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!

No matter how solid our relationship is, serious illness adds all sorts of stressful challenges, and this applies to all relationships. We often discuss in our groups our frustration with not being understood, and it becomes a burden on the relationship if we make it all about US. When one is sick, we may not feel the way we did before the illness, which can make the partner feel rejected and not handle the changes well (for all the reasons that Tatiana mentioned).

So, what are some things we… read more

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 was diagnosed with ET in the spring, but apparently I had it for two years before diagnosis. My main symptom is Fatigue. Will that increase the longer I have ET? Or is my level of fatigue more related to my platelet level?
Does anyone have experience with this?