Help needed pls

[Elab]

I have been diagnosed with ET Jak+ 3 months ago.

I have been taking Hydro for 3 months ( 500g once a day) and now my platelets gone down from 1200 to 600. Which is one good news. My doc told me to stop chemo to see how quick the platelets with rise again. And when they do I will have interferon injection to lower my platelets again.

I also got some bad news today regarding my bone marrow biopsy.

Apparently I have an early stage of Myelofibrosis called prefibrotic Primary Myelofibrosis.

I am really scared and confused. Why doc don’t use any medication to treat it or slow progress it. Instead I have blood test in 4 weeks and an appointment with my doc.

I was wondering if anyone experienced something similar or have more info how quick it will progress.

I would love to hear from you.....

Many thanks

Ela

[fee13]

m.youtube.com/watch?v=JHyYQ...(Not working as expected?)

I have just posted this on another persons forum. Only 2.5 minutes long and explains use of low dose interferon early in MF can halt the progression. If you can tolerate this it seems like the best approach so far.

[Elab in reply to fee13]

Thank you

[Susana7 in reply to fee13]

I agree with fee13 : Pegasys interferon can halt progression in early MF and in some cases lead to haematological remission. I would try it if I were you. My experience with interferon has been fantastic: I have been on Pegasys for 2.5 years, for PV, my bloods are all normal now, and I inject only every 3 weeks. Good luck! Susana x

[Elab in reply to Susana7]

Hi Susana,

Thank you so much for your message.

I have my blood test and appointment in 4 weeks time as my doc wants to see how my platelets will behave without chemo. Then he said he will put me on interferon.

I am glad you are doing ok. Love hearing positive messages like this.

Have a good weekend

Ela x

[Paul123456]

Ela

I posted this link yesterday re Pre PMF, survival rates are similar to PV so good. And the MF video I posted this morning (see separate thread) talks of new drugs that will buy us more time until more new drugs are discovered. Hence, whilst no clear cure in sight, we simply keep kicking the can down the road. So please don’t panic, it sounds like you have loads of time and medical advancements should transform your already ‘good’ prognosis.

bloodjournal.org/content/12...

I saw my Hem this week, who is a SCT specialist. He said the same thing, I’m sufficiently ‘early’ that I may never need a STC

Best Paul

[Elab]

Thanks Paul. If u don’t mind me asking what is STC?

[Elab in reply to Elab]

Just read your link so know what STC is now

[Stephen399b]

I was diagnosed 2 years ago with ET Jak2+ and PMF (and systemic mastocytosis!). I have been taking reducing amounts of HU, now 10x500 per week. Just had a 2nd BMB and PFM hasn't changed.

My haemo indicates that there is no particular reason why it will progress any time soon, although he has discussed going on to Interferon at some point.

Keep asking questions and don't let them 'off the hook' with explaining bloods and blasts, but hopefully no need to get stressed.

Good luck

Stephen

[Elab]

Hi Stephen.

Thank you for your message it helps a lot.

I am glad you doing well.

I always try to ask as many questions I can but I am always so confused after appointment.

Our appointments are usually around 2 hours late with all patients waiting and complaining about being delayed. It’s such a stressful time .My doc is stressed as well and trying to finish the appointment as soon as possible.

Found this site very useful and very grateful for all comments

Many thanks again Stephen

[mhos61]

Ela,

You should not have to ever feel rushed at your appointment. Waiting two hours and then picking up on your Dr being stressed isn’t good enough! Maybe it’s time to look elsewhere for your treatment?

Mary x

[Elab]

I will call my hemo nurse and speak with her about it.

Thank u for your advice

Have a good weekend

Ela