I see alot of posts regarding PV and ET.Can anyone share some feedback on mylepfibrosis?
At first, I was diagnosis with ET, but after a second BMB my physician is leaning toward PMF. I will be starting on Jakfie next week. I've been taking anagrelide for about 2 years.
At this point, I'm feeling very scared and confused.
Hey there drucella01... 
Well you are in extremely good company here...
My name is Steve from Sydney, Australia. I am also Post ET / MF & on Ruxolitinib & have been now for over Five (5) years. Mostly, I am remarkably stable. However, there are plenty of ups & downs too... Fatigue can be the worst thing of all... And on those really heavy "F" days... I simply go back to bed if possible, until I regain some energy & bounce back yet again for the next spell... 8-). Par for the course I am afraid...
Drucella, I find that one of the most important things to "ALWAYS" remember is that MPNs, are "chronic" illnesses that will be w/ us for the rest of our lives... And that working on improving the 'Quality of Our Lives' is also crucial to carrying on...
A few years back, I took up cycling, & it's truly remarkable to me how much better I feel when I'm trying to remain consistent in both my dietary & exercise regimes...
People here are an absolute wealth of MPN information... and although we are all quite uniquely different in our own ways, many of those 'Tips & Tricks' can really help make life more bearable...
Hopefully, we shall all live reasonably long & fruitful lives, even w/ our MPNs... 
Very best wishes
Steve
Thank Steve for the feedback.I'm trying to stay positive.
I appreciate all the support.
If your platelet count is still above normal, your RBC and HGB counts are still normal and your spleen is not enlarged or only moderately enlarged and if you have no serious auto-immune type disease(s) then you may be a candidate for Pegasys or Besremi interferon. Unlike Jakafi, interferon can often slow or stop disease progression towards advanced myelofibrosis.
If your current doctor is inexperienced with prescribing interferon then he/she may not mention it to you as an option. In that case you might have to seek out a hematologist that is experienced with it and who is known to have a generally favorable attitude about it.
Thank you for your feedback.I truly appreciate it.
Hi, Drucella01, we have a similar situation in that I was diagnosed with ET in 2008 and with myelofibrosis in 2019, at age 63. I was also scared and confused. For months, I was on an emotional roller coaster. My symptoms were low hemoglobin and high platelets. I found an mpn specialist which I highly recommend that you do. She brought my hemoglobin from 8.7 to around 11. this year, my numbers have changed again and she has advised that I get a consultation with a transplant specialist, so that is my next step.
I wish you all the best and if you have any other questions, feel free to private message me. It’s true, not that many people on here have myelofibrosis.
Thank you so much.This helps.
I was terrified when I was diagnosed with MF in 2020, I thought it was a death sentence. However, on Ruxolitinib, I felt so much better. Last year I took the step of having a stem cell transplant. It was undeniably a horrible experience (mainly because of the gruelling chemotherapy) but six months on, my health is improving hugely. JAK2 is no longer detectable and pretty much all of my blood is being made by my donor cells. If your fibrosis is of a low grade, you may never need a transplant and there are a number of drugs to fight this.
Thank you all for the feedback. I truly need this support. I will definitely keep everyone posted with journey. I must admit it's scary.
Sorry to hear about the possible progression of the MPN. Treatment options for MF are progressing. There is very real hope in the emerging research. You may find this presentations helpful.
youtube.com/watch?v=vZsXbWr...
All the best to you. .
Thank you so much.
I had PV for 12 years which then transitioned to MF. I am now approaching 4 yrs post transplant. It's been said many times before but it's worth repeating; try to get the most expert opinion, diagnosis and evaluation of your MPN. The fact that your physician 'leans' toward MF suggests that a clear cut diagnosis may not yet be evidenced. But despite that I think you should have at least some certainty on how you will be monitored, what to expect both in terms of diagnostics and possible treatment. This might help reduce your understandable fear and confusion. I was too shy until pushed by a friend to ask questions, but I'm very glad I was pushed. The old saying that the 'squeaky wheel gets oil' is worth bearing in mind. I wish you all the best going forward.
Thank you. Yes, At first I was told the BMB look more like ET. When I had the second one I was told the pathologist said it look more like PMF then ET. The early stage. The mutation I have is CARL, negative for JAK2.
I'm so confused. I just saw a new MPN physician last week. He was referred to me by this group. Dr. Brady Stein out of Chicago.
He sounds like he is very experienced with this disease.
Had more blood work, waiting on results.
I don’t have any experience with pMF or MF but I just wanted to show you some support and hold your hand for a while. ❤️❤️
Hope you get a proper diagnosis and the positive support you deserve on your MPN journey. The people on this site are an amazing group. 🥰.
I truly welcome all support.Thank you.
Hi Drucella01, I also have a very recent diagnosis of PMF (last month)- also CALR+, slightly low platelets and Low Hg. No medication yet but have been referred to an MPN specialist. I found the diagnosis almost a relief as I could then understand why I was feeling so tired, not recovering after exercise, infections etc. It’s given me ‘permission’ to focus on my own well-being and to find the right balance for my available energy.
Myelofibrosis
Myelofibrosis
