Just joined, I've got CTCL MF. How's shielding going? Up & down for me. Husband still working, on mend now from covid-19 & back at work, two teens in the house, both girls. Difficult, scary , relieved, apprehensive & in that order. Trying to keep my mind working, not just vegitate or go off at a tangent. Fancy a chat?
Hi and welcome to this corner of the Mac Online Community. I am Mike and I help out around our blood cancer groups. I am now on day 65 of lockdown and I am doing great and inside and outside the house is looking great.
I also have Cutaneous T-Cell Lymphoma (CTCL) (Mycosis Fungodes) diagnosed way back in 1999..... it’s a long journey but you can hit my Community name Thehighlander to see my story.
We do have a dedicated T-Cell Lymphoma Group but not many with CTCL - we are a rear type of NHL.
You may want to ‘Join’ the groups and also indicate if you want email notifications when you receive any answers or to see new posts - this helps you connect better.
You can also hit the ‘Discussions’ tab and look at the thread headings and you can always hit ‘reply’ if you want to join in a thread.
It’s late but we can talk more - just ask your questions or just chat and I will do my best to help out.
((hugs))
Click to see how to add some details to your profile
Looks like you are in the early stages and you could live like this for many years before you need full on treatment.
We have a Heamatology Support Group at our local Maggie’s Centre and there is a lad with exactly the same condition as well. He is 16 years on the road and has just finished his Stem Cell Transplant in the same unit I was in.
Do come over to the T-Cell Group and introduce yourself and take a moment to start your profile as it helps a lot.
Always around to chat.
