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@suzannebhi First of all - take a deep breath. As noted here - upon first hearing it is hard to accept. There are lots of good places to find info. Having been diagnosed over 8 years ago, most of my life has been mostly normal, routine bloodwork and appropriated meds to control platelets. From what I see most start with hydroxyurea (I did) and it is quite effective for most, in these chats, I have seen some on it for many years without issue. I started there and am now on Jakafi as I am one that did not tolerate HU. My suggestions are to reach out to find a specialist ( see https://mpncancerconnection.org/mpn-experts/ ); if one is not close to you, at least go see them and have your local hematologist work with them. I am lucky to live near one and it has made a huge difference in my life; typical is monthly blood work and quarterly visits. If you are interested in trials, it will also be important to work with a specialist at a research institution. There are places to find trials through various sites as well. I am currently on one sponsored by Merck - unfortunately I am on a control arm, which is my normal Jakafi treatment, but need to have controls. There is trial open for those with CALR mutation with a bispecific antibody - it looks really promising (an hopefully I can move to that one).

As you navigate this journey, reach out to organizations that can offer support, one of the best is Blood Cancer United; they have lots of resources for patients and caregivers. One program that is often very helpful is the First Connections program ( https://bloodcancerunited.org/resources/patients/peer-to-peer-support ) that puts you in contact with other patients - no medical advice, just somebody else on your journey (Incyte used to have a similar program, but has discontinued). BCU also has a number of events. These have been helpful, as MPNs are rare it may be hard to find somebody near, but I was lucky and met a PV patient who lives near me though a conference and while are conditions are different, they have similarities and just having each other to visit with is great.

Other good resources are MPN Research Foundation, Voices of MPN, and there are others.

Again a deep breath, don't panic, and rely on others for support.

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Replies to "@suzannebhi First of all - take a deep breath. As noted here - upon first hearing..."

@drbart86

Thank you for taking part in the clinical trial. It's a huge commitment!

Be proud: You are moving medicine forward.

@drbart86, thank you so much for sharing your journey and participating in trials for a better future for all. While I just joined this forum, my husband has been on forums ever since he was diagnosed and has read horrific stories about HU, which adds to the fear. I am reading that many people have benefited from various medicines.
We are currently working with a research hematologist. I wish you well, and I thank you for reminding me to breathe. Even though I am a mindfulness trainer, I forget sometimes :).