Wanting to thank everyone for their input, kindness and responses.

[Sunnylesser]

Hi Everyone

Thank you all for answering my questions and sharing such great information. This is frightening being diagnosed with something you have never heard of and feeling the support and encouragement has helped a great deal. Having PV ,a Jax 2 positive and being asymptomatic is still hard to accept. However after much reading I am grateful I don’t have any symptoms. Being an avid runner I use Moo Cream always on my feet and wondered if that could help the burning people describe.

I did not want to take any drugs but my Specialist said being in top shape has nothing to do with it. He referred me to a great article about young cyclist having heart attacks because of getting more RBC into their bodies and dying. That changed my mind so I am starting this Thursday on hydrea and phlebotomy.I know I need to change my thinking and take the pill with gratitude if it keeps me alive and healthy.

Again thank you all for sharing with me.

Sunny Lesser

[MPNBlog]

Hi Sunnylesser. Thanks for the update - I was wondering how you were going. There's a lot of information to understand when you are first diagnosed and there are some important decisions to make. All while you are in shock. It is great that you are so healthy and feel well and I think being grateful for that is a good mental position to be in. [You will read on this site there are many who are not so fortunate.] It's also fortunate that it was picked up before you had an adverse event. You need to know your level of risk. Your haem should be able to help with that. From your posting , it seems you are assessed as high risk hence the recommendation for meds. But you should confirm that for yourself. You need to understand your blood results and what mutations you have, the size of your spleen etc.

You can always stop or change meds of course if you get more information, or your blood results change or you decide on a different med, it's not an irreversible decision. That was something that I hadn't quite got my head around when I first took HU. So you can then do your research and ask lots of questions while you have some clot protection. If you know anyone who has had a stroke or heart attack, you will understand that at your age you need to weigh up the risks in PV and your circumstances, as stroke or heart attack are the most serious possibilities. From all the guidelines, someone well over 60 with PV is usually considered high risk. Again I didn't know this when I was first diagnosed and was feeling fine, so that shocked me. So without giving medical advice I would think your decision is a good one.

Here is a link to the National Comprehensive Cancer Network (US) Guidelines for treating MPNs (2019): nccn.org/patients/guideline... It is updated every year or so. But it requires consensus from all the consultants on the panel (about 30) so I find it quite conservative. There's also some UK guidelines (which I prefer). The risk stratification starts on p182: onlinelibrary.wiley.com/doi...

Here's another link from a famous researcher about PV treatment: nature.com/articles/s41408-...

I'm not sure how much you want to delve into it all so pls ignore these if it's too much information - I just like to see evidence. All the best.