Hi, I have Non Hodgkin's lymphoma MALT so one of the lucky ones. Biopsies taken in December 2019 were supposed to go for further analysis but weren't. 2 years later, thanks to GP rereferring me biopsies were analysed and consultant rang me with apologies and diagnosis. CT scan and endoscopy showed I wasn't in remission as expected so decision is 3 monthly face to face appointments and 6 monthly endoscopy for 2 years and if no improvement further treatment, radio therapy or chemo. I don't have symptoms and physically isn't having any impact on my life but emotionally it is. Feel I need to hear from others with the same diagnosis so I don't feel so alone. Everybody tells me how well I look and although they mean well it sometimes I just want a hug and be asked if I'm ok
Hi and welcome to the Online Community. I am Mike Thehighlander and I help out around our Lymphoma groups.
I was diagnosed in way back in 1999 with a rare, incurable but treatable low grade type of NHL Stage 4a so I know this journey rather well.
I see you have already joined our Non-Hodgkin lymphoma group. could I suggest you copy and paste the text from this post into a new thread in the NHL group as we do have a few folks in the group with MALT - NHL.
I will keep an eye open for you in the NHL group.
Hi again
If you'd like to connect in with the NHL group click on THIS LINK then once the page opens 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).
You will then see a dropdown menu so hit ‘Chat’ or ‘Start a Discussion in New here, say hello’ and you are ready to go. You could copy and paste the text from this your first post. You can also search through existing ‘Discussions’ and click [reply] if you want to put up a comment.
