Hi Gillian,

A very warm welcome to our forum.

I am sorry to hear that you have recently received a diagnosis of  prefibrotic myelofibrosis and can understand how you feel at present. This must be particularly overwhelming, when you haven't yet had time to make new friends in Scotland. Can I ask what part of Scotland you are now living in? There are cancer support centres dotted throughout the country and you might find it helpful to join one of these.

I do not know much about this type of cancer, other than the fact that the disease can be progressive and the rate of progression can vary. I understand that some people never progress to overt primary myelofibrosis, so, there's still a chance that you might be one of the lucky ones.

Please keep in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Hi Gillian

Hello Gillian

i just found your post and it was a while ago so I hope you have found some help and support now

i was diagnosed with MF in October 24 and I I m based on the Isles of Scilly so I can understand the isolation you experienced

i I am on treatment now so momelotanib and regular transfusions but looking into a possible stem cell transplant

if there is anything at all you need to know about regarding MF just message me

its so rare it difficult to find someone with it!

anyway take care and I’m here if you need a chat

cheers

Hi Ian,

thanks for your reply. You seem to be further down the road than I am at the moment. I was diagnosed with prefibrotic myelofibrosis a year ago. It feels like it’s been a year of confusion. My consultant never uses the word cancer but all the googling does. I thought since they found this in the early stages they would be able to treat it to prevent it from becoming worse but that doesn’t seem to be the case. It’s an awful waiting game of when does  it progress. That’s what I find hardest to deal with. I try to take one day at a time, accept some days are bad because if the stress and try to do things I enjoy. Any hints on how to accept this and move on keeping my sanity!! 
I hope you are keeping well and your treatment is helping. 
Regards

Gillian,

Hi Gillian

firstly I’m sorry to hear about your diagnosis

there aren’t many of us as I have found out!

MF used to be classed as a blood disorder and consultants will avoid using cancer and use disorder instead

It is now classed as a cancer and that was the first thing that freaked me out

Mine was caught by accident as most cases are and it was further developed than they first thought so I was put on a new drug momelotanib

you will get used to all the long names!

All the treatments at the moment treat the symptoms as there is no cure yet but there is an amazing amount of work going on like clinical trials and genetic magic

i waited just a month before my diagnosis and that was difficult so a year must be so frustrating and worrying

you almost put your life on hold and feel a bit isolated but they have you on the radar now so that’s positive

The first thing I did was google everything usually at stupid o’clock so please don’t there is a lot of old info out there

i stick to NHS sites and the major charities so Macmillan and cancer research also Blood Cancer uk but I have found MPN voice has been great lots of info and webinars so I stick to them

Have you spoken to family and or work and friends?

I did eventually and it has helped The only thing you can do is utilise all the resources you can find so chat rooms like this but mainly look after yourself with eating well and gentle excercise I find walking helps either on your own or with with friends

its difficult to explain MF I find so I just say a blood disorder but you will become an expert

I have gone through macmillan and go to coffee mornings etc but it’s a horrible condition and can be slow or fast developing

what hospital are you with? You can get more info from the haematology dept possibly

It must be frustrating and scary but you don’t have to go through it alone 

you can message me anytime and do a bit of research and don’t google !!

Once again I’m sorry you have developed this and don’t hesitate to message 

Take care

iain