Hi All, I have read a lot of posts. This is my first time posting. I'm a 46yr/male and was diagnosed in May of 2023 with ET Jak2+ at age 45. I had ignored symptoms for a few years... headaches, visual disturbances, shortness of breathe, crashes that felt like low blood sugar, and soooo tired. I thought maybe I had diabetes. Finally, the pain in my hands and feet became almost crippling. Went to a GP and CBC showed high platelets 800. Saw a hematologist, had BM biopsy to confirm. Immediately started aspirin, but due to ongoing symptoms we decided to be aggressive and started on Besremi by August. Platelets dropped to normal in 3-4months and most symtoms were gone. Fatigue is still a major issue and is especially disappointing when I cant keep up with my 4yr old son. It has taken me a bit to find and see the MPN specialist I wanted and she insisted on another BM biopsy. I just had it done last week and some of the results are coming in and I see my fibrosis is now grade 2. BM biopsy 1 yr ago said 0-1. Just curious who has progressed from ET and what the conditions were. I am just spinning a little bit and preparing for the consult to review the results. Still waiting on the genetic tests. Sorry so long. Any input would help. Thanks.
Increased Fibrosis. ET Progression ?: Hi All, I... - MPN Voice
Increased Fibrosis. ET Progression ?
Hello and welcome. Glad you decided to post about your concerns.
When I progressed from ET to PV I realize in retrospect that there was an increase in a variety of inflammatory symptoms. Nothing that could ever be distinctly "that is MPN" but significant none the less. Progression can be considered in different ways. Progression in fibrosis is just one element. Increased symptom burden is its own form of progression that can occur without progression into MF. This is always worth discussion with a MPN Specialist.
i would be very hesitant to speculate on the change in your BMB results. It is understandable that you would be concerned but interpretation has to be taken in the context of a wider number of factors. Suggest that your MPN Specialist will be your best source of information about your status.
Please do let us know what you learn and how you get on.
Thanks for the reply Hunter and I do understand 100%. There are so many variables and so many "blurred lines" in symptom overlap and even criteria for diagnosis per case. It just caught me off guard. I guess I didnt expect much of any change in less than 1 yr. On another note, after a year of the Besremi my allele burden was reduced from 17% down to 4%. I'll update after generics and review with specialist. Thanks again.
I progressed from ET to MF, main symptom was increasing anaemia. I was changed from Anagrelide to peg interferon but my numbers dropped so now on Rux since November. My counts are relatively stable but I’m still very anaemic, so tire easily. However at 71 I’m a lot older than you so that might be an age thing! However everyone is different and bmb results vary, hopefully your doctor will be able to interpret the results properly and explain them to you. Hope all goes well for you.
Hi,
My BMB 2021 was interpreted as ER, but fibr9sis grade 1. A month ago the BMB was a dry tap and diagnosed PMF with fibrosis grade 2-3. The interpretation of the results 3 years ago was probably not correct. I'm going to see an expert and am being sent for a first consultation at the SCT center now. I'm only on ASS 100 and have no symptoms. My local hem wants to put me on Jakavi 2x5mg. I have declined until I see an expert.
Hi Mate,
I was diagnosed with ET in 2012 at the age of 32. In 2022 it progresses to post ET Myelofibrosis at 42.
Symptoms prior to the new diagnosis I lost approximately 15kg of weight (muscle loss), I had abdominal discomfort, struggling to eat meals and significant fatigue (falling asleep at work). Pegasys also stopped working for me and my platelets were over 1000.
I've had multiple BMB and when participating in a clinical trial they were taking two samples at the same time and each sample had a different level of fibrous.
The progression of ET to MF, especially at a "young" age is not common. Try not to stress, stay healthy!
Does anyone with M F feel really weak & unable to eat properly after blood transfusions.I had transfusions on Friday,it is incredibly hot & humid where I live,might be the heat not helping.I am inside with AC on,so humid out dogs stay in as well !I am very anxious about the way I feel,hubby wants to take me back to my consultant at the hospital.Hoped to have some answers from M F people. Best to everyone .
I've never needed a transfusion. If you are feeling anxious I recommend going to the hospital to get checked out.
Take care of yourself.
Today I am much better,managed to get out onto our verandah very early & get some real air.! Thanks for your suggestion re hospital,as well as transfusions I am tested for everything possible…& see my consultant as well.Well looked after in S W Fr,just like everywhere tho we are so much hotter.30+ for day after day & night too hot for healthy folk as well.Hope you manage without transfusions.I have a nurse too who has come to me since 14 yrs when I started Pv.He does my blood tests & injections for bone marrow,we are almost family ! How good is that for care? Best to you.
I would try to relax a bit until you get an expert opinion. In a discussion with my expert Haem at Mount Sinai we were discussing if allele burden was important, we won’t get in to that here but he said they were not yet sure of its relevance, as an example he mentioned fibrosis, he said up until fairly recently they thought the level of fibrosis was important, he said now they think it’s not really important at all.
If your counts are stable and AB falling and no signs of progression in your BMB I wouldn’t worry. Your doing all you can by taking Bes , remember it can take a long time for Bes or Peg to work fully. Your young and recently diag so progression would seem unusual for sure. I wouldn’t try to analyse the BMB or genetic tests, I also wouldn’t seek too much advice on here re analysing both those things, that’s a MPN expert job and you can get yourself in a state trying to figure out what it all means. I had a BMB analysed by my expert recently and I asked him should I try to learn how to read a BMB, he said forget it, leave it to people like him. Fatigue is an issue for 92% with MPN, sometimes the drugs we take can help or make it worse. Strangely regular exercise seems to help.
hi, scout. So I was diagnosed with ET at age 52 16 years ago 2008. Started progressing. around eight years later, and I switched to an mpn specialist in 2019 where she diagnosed me with MF 1. I was having similar symptoms as you with high platelets and low hemoglobin, but my original doctor didn’t believe me when I told him I thought it was progressing. I was also experiencing extreme fatigue and lightheadedness. I am now MF 2/high risk and possibly a transplant candidate, if I decide to go that route.
Please keep us updated on your progress.
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