reticulin fibrosis

[Mamab83]

Hello all! I was diagnosed last December with triple negative ET after a Bone marrow biopsy. I'm 36 and currently on aspirin only. My platelets hover around 940,000. My only question was my BMB also showed mild reticulin fibrosis. Is that normal? I read somewhere that reticulin fibrosis can be found in people that don't even have an MPN and can actually go away as opposed to collogen fibrosis. However, I was recently watching an older video about MPNs and heard them say that reticulin fibrosis is rarely found in ET patients. Made me nervous. Any ideas? Is reticulin fibrosis (Grade 1) normal for ET patients or is it a sign of something worse? Thanks in advance!

[fee13]

It is my understanding that this is quite common in everyone especially as we age. Grade 1 is not usually concerning. Perhaps others can give you more ideas 😊

[Mamab83 in reply to fee13]

Thanks so much for replying!

[Aneliv9]

What is the maximum grade of the scale ? Is it Grade 3 or grade 4?

[fee13 in reply to Aneliv9]

Grade 3. Even though there are only 3 grades there is a marked difference between each one.

[Mamab83 in reply to fee13]

So is grade 1 not a big deal?

[wotan10 in reply to Mamab83]

Greetings from Fleetwood England.

First and foremost, perhaps refrain from reading out of date research of more than five years old, as this can have conflicting connotations and makes you feel vulnerable.

Secondly ensure that you gain trust with your medical team.

It is vital to your sense of positive mental attitude that you create a safe space which enables you to explore all options based on relevant current up to date information.

Thirdly, we are not medically trained on here, but our unique experiences empowers us to make sense of pur own situations.

By sharing our own experiences I have found I feel less isolated, but it is imperative that you interpretate you relevant information with some consideration.

Following the headless chicken route is positively harmful and makes you feel ghastly.

Perhaps asking Maz our administrator for relevant leaflets may help you to process with caution.

Good luck.

[redumbrella]

Hi, I had a b.m.b. last September, I am being treated for PV jak2 neg for the last 15 years, up to September it was treated by daily Asprin and venesection as needed ie. over 45. Following the b.m.b. my Consultant told that I had markings of Mylofibrosis at stage 1 and started me on Hydrea ever other day along with the daily Asprin.

This is the first time I have across the word Reticulin paired with fibrosis but from reading about they appear to be one and the same at least at stage 1.

To answer your question it appears to me that it is not necessarily unusual to get it with an M.P.N. Best advice I can give is to discuss this with your Doctor and not to worry too much.

Garry

[Mamab83 in reply to redumbrella]

Thanks so much!

[xxbzd]

How are you? Nice to meet you. I'm a Chinese and an MPN. I was also very negative et and MF 1, which made me feel frustrated and scared. May I ask what the doctor has to say about this?

[xxbzd]

Hello, I really want to keep in touch with you! I don't know how to reply to emails in the background. I'm really sorry. I'm ET Platelet 500 (MF1)