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Welcome to our group! I'm impressed you found us so early in our diagnosis. Knowledge is definitely key to navigating the journey ahead. I was diagnosed 10 years ago with the CALR mutation. I remain asymptomatic. "Watch and wait" protocol with a baby aspirin 4 times/week. It is critically important that your diagnosis in confirmed by an MPN specialist, not simply an oncologist/hematologist. Your treatment plan should also be directed by an MPN specialist, even if it requires traveling to see him/her. It's so important that you remain as healthy and strong as possible - good nutrition, daily movement, meditation/mindfulness and an integrative approach to your wellbeing. Also. be sure you are getting all required cancer screenings, e.g., colonoscopy, skin cancer, etc. And then, live your best life possible with joy, love, and gratitude. Prayers to you and yours.
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@mjrussell2 Thank you so much for your words of support. This means so much to me as I navigate this new world. It's great that you've been free of symptoms for so long. What a weird disease! This thread has been my lifeline and I so appreciate everyone sharing their story.
I am focused on exercise, nutrition, and stress management and meditate nightly because it's the only thing I can control. My hemo did not want me to go the aspirin route as I have had a terrible bruising from blooddraws and IVs. As I mentioned in a previous reply, I am close to Johns Hopkins in Baltimore and hope I can get a referral there, just to get information. There are new discoveries every day and I am so grateful for the medical community who are working so hard to find new treatments. All the best to you in your journey.