newly diagnosed Myelofibrosis

[Discover59]

Hi to all

Was recently diagnosed with Myelofibrosis

Still learning about the condition and associated terms

[Cat1001954]

oh I know it’s scary I was only told in august lots of great vibes and help on here welcome x

[Discover59 in reply to Cat1001954]

scary is so true , I’ve certainly learned to stay off goggle as normally out of date

Appreciate you coming back to my post

[Cat1001954 in reply to Discover59]

I looked on Google and it’s total rubbish compared to real life keep strong I’m new to all this I have ET and on hydroxycarbamide

[Cat1001954 in reply to Cat1001954]

I’m Cathy and I’m 68

[Robeets_33]

Hi, I was diagnosed with MF in January 2021. I definitely stopped going onto Google! I have bloods and an appointment every three months. I started on Interferon in the January. Hope all goes well.

[hunter5582]

Hello and welcome to the forum. Glad you found your way here.

You already found out that random Googling has poor results for learning about MPNs. Better to stick to reliable sources until you learn your way around the MPN world. Here are a few links that may help you learn more.

mpnvoice.org.uk/

mpninfo.org/

mpnadvocacy.com/

powerfulpatients.org/

mpninfo.org/conferences/202...

All the best to you as you start on this journey.

[MFBMT2011]

Good morning. I was diagnosed with Primary Myelofibrosis at age 57. No really helpful drugs available as was 12 years ago. Opted for a Stem Cell Transplant (SCT) 11 years ago. The various drugs help with symptoms but can not cure.

SCT is not suitable for all but worth reviewing. There was a brilliant pair of presentations on SCT on an MPNVoice webinar on Tuesday. It will be on the website or utube soon and will be worth a look.

SCT is not suitable for all and is risky but is worth a look.

Chris H

[Discover59 in reply to MFBMT2011]

Hi Chris

Thanks for your response

I watched the presentations on SCT and found them very interesting and educational. Definitely something I want to discuss with my consultant as you say not suitable for everyone but currently the only cure available

[SRH55]

Hi, I have recently found out I have MF & started on Ruxolitinib in October. It is very scary & definitely not a good idea to google, I think MPN voice is a reliable source of information.

I am going to go through the SCT route, not an easy decision & I know it’s going to be so very tough.

Like others have said the presentation on Tuesday was very informative.

Sending best wishes,

Shirley

[LittleLuna]

Welcome to this group. It is a fantastic forum for support, advice and knowledge.

I have PV diagnosed this year and can say with my hand on my heart, this group is my lifeline for MPN contact.

People dip in and out but you can always get a question answered, support when feeling scared.

❤️

[DLaux]

Phlebotomies for 9 years then diagnosed by BMB in 2017 with PV. Now in April 2022 a new BMB with Myelofibrosis. Jakafi started in June 2022 which shrunk my spleen back to non palpable. I am now scheduled for a SCT December 16 if I pass all the pre tests. I’m 71.

We are all so very different. The best to you. Yes, it is scary.

[Wyebird]

welcome to this site. I find it extremely supportive

[artydutch]

welcome! As others have said, inform yourself but check the sources and particular the date published. Things change quickly. I have only been diagnosed in April this year. I had to read and reread to become somewhat familiar with the terms of this rare condition. I also felt overwhelmed at first, so totally understandable!