Just don't settle for any old hematologist. Be your own advocate, and don't accept a treatment that makes you sick. I've had 4 hematologists, and an MPN specialist consult in 8 years. I've taken Hydroxyurea, Pegasys, and now Jakafi. Keep at it until you find a Dr. that cares/listens, what drug agrees with you, and also works for you. Good luck!

While MPNs are a form of blood cancer, they are something that can be managed successfully for a long time with proper care. Proper care mean more than preventing thrombosis. It also involves preventing other equally important issue like preventing hemorrhage and the many secondary or constitutional symptoms we can experience. Quality of life is just as important a goal as length of life. In addition, preventing progression of the MPN is also a critical goal. We now have the ability to reduce risk of progression with the improved treatment options available. Achieving these goals requires MPN-expert consultation. MPNs are rare disorders and many doctors, including hematologists, have little experience with them. Not all are up to date on the emerging science of managing MPNs. That is why consulting with a MPN Specialist is so important. Here are two lists just in case have not seen them.
https://mpnforum.com/tsr-the-list/
https://www.pvreporter.com/mpn-specialists-canc...

MPN Expert | #1 MPN Specialist Resource | Cancer Treatment Centers | PV Reporter

https://www.pvreporter.com/mpn-specialists-cancer-treatment-centers/

TSR — The List

https://mpnforum.com/tsr-the-list/

I understand the frustration with the fatigue. Before being diagnosed I was an ultra athlete. I went from running 100 mile races to not being able to make it to lunchtime without a nap. What Rx are you on? I was unable to tolerate HU and a long talk with my Doctor I was able to get switched to Jakafi and it has made a huge difference. I'm not doing 100 milers but 50-62 mile races again. Don't settle, we have the right to live out life not just survive.

Learning and management of symptoms. With fatigue I noticed that I have a limited amount of energy and therefore learning how to manage my weekly energy has been lifesaving. When I over exert myself it seems to trigger a high platelet count. People without the condition easily will want you to pickup the pace but for us it comes with a cost. If we over do things especially physically it may cost us three or more down days. So the best advice I can give is learning how the condition affects you and practicing management skills. Also vitamin C and D3/K2 has helped my with fatigue.

The best you can do is to find a doctor that specialised in MPN.
It will guarantee that you have the best quality of life and survival.

Wish you all the best.
Dolf from Holland.

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