R-Gem-Ox

Hi Milpol and warm welcome to the Macmillan Community although sorry that you had to find us and especially sorry to hear about your Lymphoma journey.

I am Mike and I help out around our Lymphoma groups. 

I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ my be different I most definitely appreciate the challenges of this journey rather well.

I had totally different treatments but talking with others we could line up 10 people on the exact same treatment for the same NHL and we will get 10 different stories...... as the Side Effects of Treatments can be ever so different.

My great CNS initial words were “……Mike you can read all the information available and then start to catastrophise that every side effect that you have read about will happen but the reality is very often rather different….. take each day as it comes, celebrate the good days, endure the not so good day”…… and she was spot on.

There are over 60 types and sub-types of Lymphoma so we can’t have a group for every type but these are our main Non Hodgkin’s Lymphoma groups below.

General Non Hodgkin's Lymphoma

Follicular Lymphoma

Diffuse Large B-Cell Lymphoma

These groups are safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.