Myleofibrosis

Hi Alicegirl123 and welcome to this corner of the Community. I am Mike and I help out around our blood cancer groups.

I don't have Myelofibrosis but I was diagnosed way back in 1999 at 43 years old with another rare, incurable type of blood cancer reaching Stage 4a in late 2013 so I do know this journey rather well although not necessarily some of the treatments you are on

In the early days it’s all about understanding and once you get more information and talk with others the journey will get more understandable.

So let’s look for the group members to pick up on your post. There are a number of active group members at the moment so why not click on the main ‘Main Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.

You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups the one I attend does have a few folks with Myelofibrosis in it so worth checking.

The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. You may also find our Ask an Expert section helpful but do allow a few working days for a reply.

You may also want to check out MPN VOICE UK for some good information and have various support platforms.

Always around if you need further help or just want to talk.

Hello. My mum has been diagnosed with MF at the start of the year. She has been put on a clinical trial called Fedora - just wondering if you have any experience and if you have any general info overall? She has already had 4 blood transfusions as her haemoglobin levels are so low, and she is breathless very quickly. She is 69. Thanks x

Hi Jayne E abd welcome to this little corner of the community but sorry to hear about your my…… this is a challenges time supporting your mum.

I have had as etch through the discussions and have not found the Fedora trial mentioned but not to say that a group members us on it or a lived one is supporting family on this trial.

Kets see if anyone picks up on your post.

You may find you will get better results if you put up your very owe discussion thread as your reply on this thread may get missed.

To put up your own post clicking [ + Create new post] or [ + ] in the top right of the main group page and put up your own post.

You can also see the various support routes available in my  reply to Alicegirl123 

Do get back to me if you need further help or just want to chat ((hugs))