Hello,
I am supporting my dad who is 73 and recently diagnosed with MF through what has already been a long journey and looking for information/ advice about next steps.
He is a complicated and inspirational case having gone through various different types of cancer already at different times in his life, including having lung removed 3 years ago. He has had ET most of his life and taken hydroxicarbomide for this and this has become MF.
it is complicating things that symptoms of MF are similar to lung cancer and he is currently worried (waiting for scan results) that the lung cancer has come back as he is very breathless most of the time and has fatigue and chest pain. He’s recently been suffering with itchy skin on his chest and has become quite confused and unable to articulate himself properly - this is very unlike him. I’m unsure whether this is a further symptom, a sign of something I.e. infection (he has seen the GP and spoke to haematology nurse) or perhaps a sign that all this is taking a toll on his mental health as he is clearly stressed and anxious.
My family and I are unsure what to expect and have not been given a point of contact to discuss with anyone at the hospital. As he is under different hospitals for the lung cancer, MF and other health issues, it is even more complicated and hard to grasp the whole picture and know what is going on. If anyone has any input I would be really grateful. Thank you!
Hi Klimt 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.
Let’s look for the family 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.
When it comes to the practical and emotional challenges of supporting family and friends you may also benefit from joining the Community’s general Carers only and Supporting someone with incurable cancer support groups where you will connect with others navigating the same support challenges.
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.
