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Profile picture for nohrt4me (Jean) @nohrt4me

I don't think it's uncommon for high platelets to be ignored or for an MPN to be diagnosed incidentally. An alert nurse spotted an upward trend in my high platelets after a TEE (cardiac procedure for wonky mitral valve).

But yes, compression fracture-- Jeez and ouch!

I have ET, CALR mutation, which is thought to be more likely to mutate to MF. My platelets are in 400s by alternating 500 and 1,000 mg HU per day. Wondering what your doc saw that indicated prefibrotic MF vs ET?

My dad had ET also. His platelets and other blood levels started *dropping* and the nurse said that she suspected he was moving to MF. However, he was already on hospice for end-stage COPD, and he opted to stop the blood tests. Lots of unknowns about Dad's ET because he died 15 years ago and much less was known about it.

You might add to your list of questions for your hematologist:

1. Can you reduce the HU dose as your platelets get closer to normal?

2. Do co-morbidities affect the speed of progression to MF?

3. Does age affect the speed of progression to MF?

4. Is an MPN likely to mess up or cause other morbidities? I'm 71. Platelets are great, but in the last year everything else seems to be getting worse--heart, liver, teeth, glucose, thyroid, rosacea, scoliosis--except my mordant wit and bone density. Last year's scan showed I had better than expected bone density for someone my age. So yay that.

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Replies to "I don't think it's uncommon for high platelets to be ignored or for an MPN to..."

Thanks for responding.
Yes, I was carrying a pan of boiling water down my 2 step front porch to kill weeds in my courtyard. My knee let go and I fell dumping the water on my chest. luckily I fell into a pansy flower bed where the dirt absorbed the boiling water. Unfortunately I then smashed my elbow into the brick wall around the courtyard and fell to the brick paves where I received the compression fracture. Laid there for 15 minutes deciding whether I should try to fish my phone out of my pocket and call 911 or just try to get up. I finally got up but the good news was my cancer doctor put me in the hosp the next day for diverticulitis and they help with my back....since I could barely walk.
Good questions... Thanks. I really appreciate it.

@nohrt4me @jtcat7. @1pearl. You have lots of good information for @mtnlife and each other! One request, though. Would you spell out the words rather than just using letters? I had a hard time following you, and I know that others do also. Keep up the good, positive attitude, though!