Prefibrotic Myelofibrosis: Diagnosis Favors Essential Thrombocythemia

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.

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!

Hi @loribmt
That was a very good video. I think doctors have a hard time telling between Easential Thrombocytosis (ET) and prefibrotic myelofibrosis.

Update. Good morning. I was diagnosed 2 1/2 years ago. At the time, both the diagnosis and treatment options were all so scary. Not so now. My hematologist/oncologist at the University of Virginia is wonderful. She advised that treatment would be the same whether my diagnosis is ultimately ET or pre-fibrotic myelofibrosis. I take hydroxyurea every day along with baby aspirin. I have no side effects and feel quite good. I play tennis multiple days each week and keep a very active travel and volunteer schedule. All bloodwork is now within normal ranges. I have blood drawn every three months and see my doctor every six. Also good news.
Will the condition progress? Perhaps, but there is no way of knowing, and as long as the current regimen works we see no reason to change it. I am now 74 years old. I encourage everyone, especially the newly diagnosed to maintain hope and recognize that many, many people do very well with these conditions.

Thanks for your inciteful comments. I was diagnosed with PreMF 2 months ago so I'm still finding my way through the maze.
I managed to break my back in a fall, be diagnosed with acute diverticulitis and with PreMF all in the same week.
It's encouraging to hear that you've managed to keep the disease from slowing you down.

There is so much info on the internet that it will be exhausting to sort through it, but I did at first and it brought knowledge along with worry; this forum has been most helpful. I was diagnosed in March 2025 and have been on this roller coaster since, but finally doing so much better. My BMB shows pre-myelofibrosis but my diagnosis is ET. It could mutate to Myelofibrosis; my mutations show TET2 and ASXL1 which means myelofibrosis or Leukemia could be in my future; I deal with today. I took 500 mg Hydroxyurea daily after dinner and went to bed shortly afterward since it does make me so tired. My platelet level has been dropping from 1200 K to 314 K last visit, so my Dr. reduced my HU dose to 500mg/5 days a week. I am 73, female and have had a complete thyroidectomy; so I am drug dependent right now on Levothyroxine and HU. I'm coping with the HU. It exhausts me. I also get minor headaches and am a bit off balance at times. I am not the same old me. It is depressing to have my hairbrush full of hair, but lately, it is tapering off with less hair loss. The best thing I have done to feel better is take the HU before bed, try to walk daily for 20 minutes every morning and lift some light weights to keep up my strength. This gets me going each morning, along with my energy drink. I take Aspirin every other day and my Dr. allows Tylenol on the other days for the headaches. I am trying to eat better, take my vitamins and avoid sweets. I still work each day with my husband in our business and he's very tolerant of my tiredness.
If you are given the option for sedation before your BMB, take it! I wish I had! I know that this is scary for you and it was for me, and very depressive. But I'm grateful for the help! Imagine how our pioneer ancestors dealt without medication!! I see others in my Oncologist's office with worse health and I feel ungrateful. This is OUR time. Keep moving, take a nap if you need it and hope for the best! It's my life now, and I'm not going to let this diagnosis take over; I have too much to do! I hope this helps you! Good Luck!