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But it's finally getting to me, I've been getting pain on left side of sternum about 45 minutes or so after taking. My platelets are only 491 so aspirin is only meds I'm taking even though Dr wanted me to start hydroxyurea. For now I'm gonna stick with just aspirin but it's bothering me so I'm gonna take a week off and then 1 every 3 days instead of every day for now until stomach or whatever is causing pain stops. Today I didn't take any aspirin and no pain in chest, so I'll take a week off… read more

What has least side effects?
I heard Pegasus Interferon but Googled that and it has some bad side effects also.

What about Jakifi? The others?

I’m stressed out as I already have big anxiety about taking meds and Rx.

But I (like all of us) will have to take something at some point.
I’m reading those who wait to treat with Rx generally end up with worsened progressed condition(s).

Seems it’s a game of Russian Rouette whether you take it or not.😰

I believe I am biologically 10 years less than my actual age of 63 and even physically younger, so why would the 60 plus rule stand for me. It should vary depending on everyones physical health
Also my dad lived to be 90 and did not really take care of his health like I do, smoker etc. Mom is 87 and just amazingly got diagnosed with ET/JAK617 with low 400's platelets. She's been a health nut all her life and never really had regular check ups until recently. The Dr. didn't try to panic her and… read more

Hi All,

I am a 62 y/o law student. Over the last nine months or so, ever since my polycythemia diagnosis, I have noticed trouble recognizing, remembering, and naming other law students on my campus. These are people I feel I should know. I wonder whether my blood-sludge is decreasing oxygen transport to my brain. I worry that this problem will get worse and affect my capacity for critical analytical thinking.

Online reading has not indicated polycythemia as a reason for such memory trouble… read more

He was proactive at least
ran extra blood tests, did a blood test to check blood thickness, a chest CT scan to look for clots, a pelvic ultrasoundand to check spleen if enlarged, and a transvaginal ultrasound bc longer heavier shifting periods last 3-5 years.

Chest CT Scan negative, pelvic ultrasound no clots either. I didn’t think there were but felt better doing it bc I have medical anxiety, and anxiety about Rx, meds, even some holistic herbs, etc.

I think period issue, being 44 and also… read more

I noticed that both my hematologists avoid to use the word cancer when talking to me. When I got the diagnosis, the hematologist downplayed ET so much, despite the fact that I was in fever, pain and had so much brain fog I had to take a nap during the appointment. All these are ET symptoms, but apparently not for my doctor. So I was fine in his eyes. Being young was the reason
This was very detrimental as my partner thought and still thinks that ET is a bit like a headache, nothing scary, and… read more

I am hoping someone can help. I am 37 years old, and had a bone biopsy a few months ago to see if a vertebral lesion was malignant. It came back negative for a metastasis, but showed myelofibrosis. I was referred to a hem/onc who does not think it's an MPN because of my age. I just did 23 and me DNA testing, and it came back positive for the JAK2 mutation. The hem/onc now wants to do a bone marrow biopsy, but I don't think it's necessary as I have all of the diagnostic criteria for Primary… read more