Hi - I’m new to this group and would like a bit of advice. My husband has been recently diagnosed with Sezarys Syndrome - a very rare blood cancer. He had been treated for psoriasis for the past 18 months but now it is the above diagnosis. As this cancer is so rare does anyone have any experience of it? I’ve Dr Googled it (of course) and it doesn’t look great but we are being passed from pillar to post with no treatment plan yet - we have had loads of appointments and bloods/scans etc but no treatment plan even suggested. We are off to the QE in Birmingham next week to see a specialist but would welcome any advice from here? Thank you 
Hi Pluts and warm welcome to the Macmillan Online Community although sorry that you had to find us and especially sorry to hear about your husbands Lymphoma diagnosis.
I am Mike Thehighlander and I help out around our Lymphoma groups. I was diagnosed back in 1999 with a rare, incurable Low Grade skin Non Hodgkin’s Lymphoma so I understand this journey rather well. My type of Mycosis Fungodes is very much the same as Sezarys Syndrome so I know this even more.
The Community is divided into support groups (discussion rooms) so can I suggest you consider joining our supportive T-cell lymphomas group where we can support you more.
If you'd like to connect in with a group click on the Green (Bold) link(s) I have created above. Once the group page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."
You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New or + (Depending on the device you are using) and you are ready to go. You could copy and paste the text from this post into your new post.
I will keep an eye open for you but if you are not sure what type you have pleased do get back to me on this post and I will help you out further.
Good, so do put up a post and I will help you more in that group.
