Hi all hope your well.
Could anyone help me
I had a BMB nad results say I have Pre Fibrotic myelofibrosis changes not sure what this means I have ET
My Haemotoligist has suggested changing to Pegylated Interferon
Has anyone had same diagnosis
Is anyone on htis medication to and can tell me about it
Thanks
It seems that you have pre-PMF now not ET. Pre PMF is between ET and MF. Is like MF but not so aggressive and without fibrosis. This is your first BMB?
Hi, JeniMac.
It's hard to say much without knowing the details of what was seen in your BMB, so I will tell you a little about my similar case. I was diagnosed ET/JAK2 early in 2021, but there were results in the BMB that hinted at PrePMF. I started on 45mcg/week of Pegasys a couple months later. My MPN doc changed my Dx to PrePMF after my LDH was found to be slightly elevated. At age 73, they say my prognosis is not much different from someone with ET. Of course, there are other factors (and opinions) that are possible depending on how much weight the doc puts on my other mutations.
I was hesitant to take Pegasys, but I'm glad I'm on it. It brought my platelets solidly into the normal range and improved my symptoms, especially night sweats and erythromelalgia. My HGb dropped some as well, so my dosage was reduced to 45mcg/10 days and, very recently, to every two weeks.
It has also been said that Pegasys may slow or prevent progression to overt PMF, especially for those with JAK2.
I hope that helps!
Thank you. I go to see my haemotoligist on Thursday so will know more then. I received a letter saying that she had a meeting to discuss my diagnosis with team and they suggested peg interferon. I have been on Hu for years and recently changed to Anagralide before my second BMB. I also have an enlarged Spleen and horrendous sweats. I have confidence in her so hopefully we can get back to some normality. Thanks again for the information. Can I ask if you get any side effects with pegThanks again
What were the results in the BMB that hinted at PrePMF??
Hi, Aneliv. Please refer to the thread on which we communicated with EPguy a couple days ago.
You are right! What is 11/20 del(20Q)??
Deletion of part of chromosome 20 [del(20q)] is a karyotype anomaly. Microscopic examination of my chromosomes showed that the Q (longer) arm of chromosome 20 was truncated. It appears that when they examine the chromosomes, they look at 20 sets, and 11 of mine had the defect.
I'm sorry to hear about your symptoms, but I think there is a good possibility they will be reduced on Pegasys.
The possible side-effects were the reason for my reluctance, but I had no issues* and my MPN symptoms were definitely improved. My MPN doc wants me on Pegasys whether I have ET or PrePMF, so that is reassuring in my case.
It's encouraging that you have a team watching over you. It gives me confidence that you will be well cared for.
All the best to you!
*just a minor amount of redness in the area where I inject. I can handle that!
You're getting modern advice. Pegylated Interferon (Pegasys or PEG or just "IFN") is increasingly recognized as first line therapy in our MPN journey. More to the point, many Drs suggest getting it earlier is best, (the "Pre" part of your Dx) when it is most likely to help us the most.
Your Dr also did well to give you a BMB long ago so you have a comparison.
Hey JeniMac... 
All great advice that you received above from others too...
I am also Post ET/ MF, CALR+ Type2, w/ HRM ASXL1 & just to round it all out I have Von Willebrands Syndrome (VWS), too, which simply places me at higher risk of a TIA (minor brain stroke), if my Platelets do elevate to the 1M marker & beyond etc...
Anyways, & as many of us w/ an MPN learn over time, not all drugs are created equal, & some have different effects upon our individual body chemistry...
For example, IFNs. did not work for me personally... (While they brought my Platelets down to the lowest they'd ever been - they did not solve all my issues).
Hence, after my first BMB showed level 2 scarring of the bone marrow (fibrosis), I was eventually put onto Ruxolitinib (Jakavi). For me, Rux' gave me back some semblance of normalcy, & I was able to become more mobile once again w/ a lot less brain fog & relief from many other symptoms.
My spleen was only ever slightly enlarged, however, it too was reduced almost immediately w/ the Rux'.
My 2nd BMB showed that there had been a slight reduction in Fibrosis, to Grade1. Was this due to the Rux' or possibly the benefit of my 'Anti-Inflammatory' diet & intense exercise regime, (Cycling), or perhaps a little of both? 
Anyways, point is that some drugs work differently for some than they do for others...
Best you check w/ your MPN specialist to see what they recommend as best in your instance...
Very best wishes...
Steve
Great news is your diet what you have made or is there a site I can go on thanks
Hey Jenni...
Just make it up as I go etc...
* No alcohol
* No Processed foods
* No soft drinks
* No added sugar
* Black coffee or Green tea
* Loads of water (sparkling mineral water's ok too)
* Loads of fruits
* Loads of veggies
* No meat
* Some wild caught seafood, (when I can find it...)
Hope this helps a tad...
Steve
Thanks
What was your measurement of your slightly enlarged spleen?
Hi Aneliv9...
125mm if I recall correctly... 
Indeed slightly enlarged. This measurement was before any medicine?
Yes Aneliv9...
Only "Slightly Enlarged"...
However, an enlarged Spleen alone does not always indicate MF, as there are quite possibly many other reasons outside an MPN diagnosis that could also be a contributing culprit.Nevertheless, & all of that said, if one knew one had an MPN, an 'Enlarged Spleen' should be seen to post-haste obviously...
It is also true, that not everyone who becomes diagnosed w/ MF always has to have a super enlarged spleen.
For as we keep discovering in our MPN journeys, we are basically & continue to remain essentially individual & unique...
While Two (2) of us here, might have exactly the same Dx, be the same age, gender, even have biological anatomy similar to one another ...
...YET our MPN journey, our individual symptom burden, (including its intensity), can all be quite different, one from the other...
The same with our Med's too... What the symptoms & side-effects are on two (2) different people can be astonishingly diverse, when compared w/ each other's experience etc...
That to me at least is such an astonishing fact! Apparently, genetics & body chemistry have rather large roles to play too...However, there are so many variables, & quite likely so many more that continue to avoid detection, at this juncture...
On a positive endnote tho' much continues to unravel, ever since the discovery of the "Driver" mutations: JAK2, MPL, CALR etc...
Best wishes, stay happy, safe & well...
Steve
Hello, I too was diagnosed with pre fibrotic myelofibrosis due to mutations jak2 and tet2 plus around 20% fibrosis has formed per my BMB. I also had a heart attack 3 years ago which is when I was diagnosed. I am considered high risk because of that. I am also on pegasys 45 mcg/week. I notice that if I do NOT drink enough water or eat enough the day of injection I will be left with a horrible headache that feels like a bad hangover (bottom shelf liquor!). I also have made changes to my diet that finally got me to my ideal weight. I stopped drinking water with my meals (I drink 30 min after a meal) and limited myself on dairy and meat. I have a limited amount of dairy and meat days per month mainly as a reward for eating good all week. I stay away from processed foods, restaurants and fast food joints to limit my sodium intake and whatever else they put in the foods that may not be healthy. I workout/ exercise everyday to get the blood flowing and try to drink more water. I even set a reminder on my phone to alert me every hour to drink water. Dehydration is the enemy! Hope this helps!
HiI am in a similar position to you. I was diagnosed with ET about 10 years ago and had a BMB 2 years ago and my diagnosis was changed to pre-fibrotic MF. There was just some signs of scarring in the bone marrow, although not sufficient to be MF.
I started Pegasys immediately after and since then, my platelet level is near normal (so from 1100 to around 450). I had some issues taking Pegasys initially, but stuck with it and these have lessened over time.
I had a recent BMB which showed my bone marrow was stable and there had been no fibrosis progression - which everyone was very happy about.
As a heads up, I did have issues with travel insurance- prefibrotic MF is not on insurance company systems, only MF is, which is more challenging to get insurance cover for. I got a letter to confirm that although i have prefibrotic MF medically it presented more like ET, than MF and had no issues since then.
Your first diagnosis of ET was based on BMB, or just hematological counts and clinical presentation? Also do you know what were the bone marrow features that dictate to pre-PMF? I mean you had MF1 and that was it? Or some other features such as megakaryocytes morphology was also different than previous ET dx?
I have been told that my ET is morphing into myelofibrosis and have been put on Pegasys-Interferon. It appears to me that it is very similar. Started Pegasys at way to high of a dose and side effects were awful. After getting it down to .45mg, every two weeks, the side effects are minimal and platelets are well controlled. Don't know about any of the rest of it (so many other things tested) but my haemotologist says I'm good for another 14 years.
Great. I am going on Thursday to see her about changing to peg I'm a little worried. Can I ask what side effects you had thanks
Headaches, fatique, body aches, nausea etc. But the first dose was way too high. Started at 180mcg per week now am on .45mcg every two weeks. Now I really don't have any side effects.
You got a dose that was more common in the days they used PEG for Hepatitis C. It is unusual to get such a high start for MPN. Good you're doing well on the smaller dose.
Hi Jeni - My diagnosis was updated to pre-fibrotic MF also after a BMB.
My understanding is that pre-fibrotic MF is grade 0-1 fibrosis ; Overt MF 2-3 on a scale of 0-3 fibrosis.
My Doc immediately started me on Peg. Peg was a tough adjustment in the beginning but it has really been life changing for me. I have gained my energy back and feel more like my pre-MPN self again. Blood numbers are also in check. My platelets were well above 1Mil before.
My Doc explained to me that pre-fibrotic MF (when treated) will present more closely to ET.
Was your first ET diagnosis based on BMB? Or this was your first BMB?
My ET diagnosis was only based on bloods - JAK2 by a standard hematologist that refused to do a BMB saying it would not change the course of my treatment and it didn't matter if it was MF or ET ( "treatment is the same"). A couple years passed as we watched my platelets pass 1Mil and symptoms grow more severe.
I sought out an expert MPN specialist that promptly did a BMB and found evidence of fibrosis, updated the diagnosis to MF, and started me on PEG. According to her, a BMB HAS to be performed in order to diagnose ET. I am disappointed to not have a baseline to know if I actually have scarring from years of ET or if I have always had MF... The difference DOES matter and no, the treatment is not the same.
Having an MPN Specialist is ESSENTIAL in getting proper treatment. Lesson learned!
That's wonderful the PEG is working well. Your Dr's comment that treating PreMF ET can hold it to ET like MPN is new information to me and likely others here. I assume Dr refers to treatment by interferon (IFN) in particular. This matches latest practice of early IFN treatment.
Did Dr have more info on that note?
Were there features in your BMB other than the grade 0-1 that indicated Pre-MF? Usually several factors are required. For example ET can include mild reticulin fibrosis, although rare.
At my updated diagnosis by the MPN expert, I had grade 1 fibrosis (positive reticulin staining) for my BMB, elevated LDH, platelets >1Mil (and JAK2), and significant symptom burden (severe fatigue). She noted that the level of fatigue I was experiencing suggested it was beyond what is normal for ET.
She told me that (based on my current stats) I should expect a pretty normal lifespan with prefibrotic-MF thanks to interferon treatment. PEG not only stops/slows further fibrosis from occurring but can also reverse the existing scarring (woohoo!!), especially if caught early (and also reduce platelets and other cell numbers, LDH, allele burden, and all the other goodies in there...). Her main point - remove the BM scarring aspect and it resembles more like ET (a manageable disease).
My doc recognizes that my diagnosis is sort of in that gray area (is it post-ET MF? Or Pre-MF?) since I never had that original BMB data point collected at my initial diagnosis years ago.
I'm lucky enough to be seen by Dr. Catriana Jamieson at University of California, San Diego. She's mind-blowingly awesome! A brilliant MD/PhD.
Was your updated Dx or BMB after some treatments?
Our Dx are similar. One diff is I had grade 0-1 mild fibrosis, PLT at 1 mill, and PV as my Dx, although BMB said ET was indicated. What was your allele burden (AB) % at Dx? I was 14-19%
I didn't have fatigue so much as "something is not right" to the extent that I was expecting to go to emergency. But I also had Long Covid badly at that time, so it was sort of a added blend of that.
Is your Dr feeling high probability of reversing the scarring? I've posted some reports on the various results here. One aspect seems to be requiring at least 4 years to see any marrow reversals. This is much longer than the time for potential AB reductions (1st year often)
Our Dx do sound similar... MPNs seem very much to be a spectrum. I had hct up at 48% for a bit also and a spleen on the heavy side. AB for me was 16- 18%. I was only aspirin until the BMB. I'm not sure of my Doc's feelings on the probability of reversing of bm scarring, she simply said it is definitely a possibility - She has seen it herself. Of course, there's no easy check.
Long covid - that sounds truly awful to have on top of the MPN. I'd have to guess that must be convoluting your blood results. Are you one of those on ROPEG? I've been so interested in reading about their experiences. Is your official dx PV?
Interesting near exact AB match. I've had ok spleen so far. My LDH responded slowly to HU and so far in range on IFN. But my MPN specialist does not think LDH is medically important.
Understand your Dr did qualify the stop and reversion, everything we experience seems to get qualified.
It's hard to know how much the Long Cov affected things. I think the LDH may have been part of it. It near killed my husband and messed our livers. We got it even before they had tests. We're both ok now. Infections are a lot less deadly these days.
Correct I'm formally Dx with PV, but more in the continuum. BMB was ET like with an ambiguous cellularity result (I've posted on this confusion)
I am on Bes, since Feb. I was my MPN specialist's 1st Bes patient. I've posted on my experience including dose questions. I have a CBC etc for next week so I'll update then.
--
This post has some interesting member data on Besremi. I have a small update, I hope to get a bit more info before that:
healthunlocked.com/mpnvoice...
Looking at your Dr's bio, it's impressive. Her opinions are clearly valuable.
This study looks very intriguing:
<<Dr. Jamieson’s stem-cell research studies have taken a great leap: from identifying a promising treatment in the laboratory to opening and completing the first clinical trial to target cancer stem cells in humans.>>
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