ET & MF

[pontygirl]

Hi Folks

Question I keep forgetting to ask my Haematologist.

Diagnosed with ET in April and then after BMB diagnosed with MF Intermediate 1 in May.

I can't make up my mind if I'm Post MF Or Pre MF.

I'm thinking it has to be Post MF as the ET JAK2 + came first. ???

Bit like Chicken & the Egg Syndrome.

My ET has responded well to Hydroxycarbamide 1000mg daily.

Today is my 90th day on Hydroxycarbamide and Platelets are 358000 not the 850000 I started out with.

And to think I originally was not prepared to take Hydroxycarbamide!!

I have not suffered any dramatic side effects and I'm very grateful for that. I sympathise with those that do suffer sadly.

I do not post often but I follow with interest. I'm very appreciative of all the support I received when I first posted and grateful for a few people that I keep regular contact with.

Maz has been wonderful which everyone predicted she would be, and I'm very grateful to participate in this wonderful forum.

Maybe someone can answer my question regarding MF.

The question is irritating and I cannot wait until I see my Haematologist in October.

I wish you all a Good Bank Holiday Weekend and hopefully you are all doing ok, with our various MPN's we are such an elite group on this journey of ours.

Best Wishes

Mary x

[Elab]

Hi Mary,

I am ET jak2+ been diagnosed back in Feb this year. After bmb my doc said that I haven't got any scaring on my bone marrow but my blood is different shape which indicates i might have prifibriotic MF ( on my blood form my diagnosis is ET and PMF with a question mark. Never got an answer about my second diagnosis. I don't think my hemo knows either.

I am getting my second opinion from another doc in Chester hospital so hoply I will know more.

Don't forget you can call your hemo nurse anytime before your app if u have any questions u don't have to wait till your app. I am always getting advice from my nurse.

Good luck and enjoy your Bank Holiday

[pontygirl in reply to Elab]

Thanks for reply, yes my Haematology Nurse are excellent, but I will not bother them with this.

Good Luck with getting your diagnosis.

Best Wishes

Mary

[pontygirl in reply to Elab]

Hi again

Reading your kind reply I see what you are getting at, the " P" MF but that can also stand for Pre or Post madness!!

I hope you don't have MF , I was quite happy just having ET, but I'm definitely MF too. I had 2 BMB but I agree how is the scarring measured.

As a just retired Surgical Nurse give me anything else other than this highly difficult Disease to diagnose 100%..

This is such a Specalist field of medicine.

Good Luck with Chester hopefully you will get some Clarification.

Best Wishes

Mary.

[Tico]

Hi mary, unsure whether i hit a wrong button along the way in replying to you,please accept my apoligies if i have,regarding your question, i do not know but would like to wish you & others on the forum a nice bank holiday weekend also. But at the moment forecasters are predicting a 🌧 typical british one! Atb tina.x 🤗

[socrates_8]

Hey Mary...

I was also initially diagnosed as ET, however, my mutation is CALR+ Type2, and my first BMB later saw me reclassified, as there was scarring present at a Grade2 level.

My understanding, for whatever it's worth, is if ET comes first, then one would be Post ET/MF, or otherwise known as a case of Secondary Myelofibrosis. However, if one was first diagnosed as MF, then they might have been Primary Myelofibrosis (PMF). Whether or not one always comes before the other I suppose is open to further specualtion

I am actually also now Grade1, Intermediate1, Post ET/MF these days too after my 2nd BMB showed signs of significant improvement... Yay!

Best wishes Mary

Steve

(Sydney)

[KADS in reply to socrates_8]

@Socrates_8. What did you do to improve? I have same diagnosis but no treatment. I have to do another BMB to determine level of scarring but recent Cat scan for something else showed scarring so maybe I can take something too.

[katiewalsh]

Hi Mary, my guess would be that you’re pre-MF as you aren’t completely in the MF category. I’m curious though, I also had fibrosis at level 1 but my doc said it’s hard to quantify scaring, & I read that level 1 is mild. I believe (from something I read here) that it’s 1 through 3. Maybe someone else knows? Katie

PS I’m supposedly ET, & am jak2+.

[pontygirl in reply to katiewalsh]

Thank you Katie

It's a real dilemma to get a grip on certain aspects of our Disease.

I agree 1 is low and apparently that is purely as I have just passed 65 years.

I'm ashamed to say I'm a just retired surgical nurse, but this is a very difficult subject to get to understand completely.

When our General Practitioners know almost zilch on this Disease, I allow myself a little leeway. But I'm hugely disappointed that I need to ask questions I should be able to know the answers to, by studying.

I wish you well with your health etc

Have a nice weekend, take care.

Best Wishes

Mary x

[Jimmyh29]

I’m as confused as you are. I was diagnosed with MF two years ago (I’m 72) but I’ve no idea whether it’s ore or post. I see my haematologist every 3 months or so, get my blood test results and told to come back in another 3 months. I am not on any medication. I hope I’m just one of the lucky ones

Have a great weekend

[pontygirl in reply to Jimmyh29]

Thanks for the reply, yes it is confusing but a good sign for you as you are not on medication. We can but put our trust in those that know!

Take Care Enjoy the weekend.

Mary.

[ihavegotet]

I am in the same boat. I got my initial dx as ET and last BMB 2 months ago showed fibrosis grade 1. It is post ET MF for me! I was bummed but nothing else we can do so I try to forget it and move on with my life. I am on Pegasus which is supposed to be good if you are progressing to MF. Glad Hu is working for you. We are all so different in how we respond to meds. Best of luck. Keep us posted on what your doctor says when you see him/her.