Hello out there.Hope everyone is trying to do there best with coping and living with cancer. I was treated for predominant nodular Hodgkin’s lymphoma back in 2014. I had radiotherapy and I went into complete remission. I met a guy called Jonny at a Macmillan meet up at a Leeds hospital He said I was a member of an elite group and said it was a very rare form of lymphoma that I had and he only knew one other person. He was from the North East a really nice guy who was positive even though his condition was far worse than mine. I hope you’re still with us my friend because I’m ready to fight cancer again.I’m thinking of you because you left such an impression on how you and your family were being so positive about treatment. I hope this message reaches you wherever you are.
Apologies. I try to type as fast as I’m thinking which means I hardly make any sense 
Especially when I can only type with one finger!!
This is the first time I’ve been on a chat room. Got lots of mixed emotions feeling lonely don’t have a partner to talk to and don’t want my children to worry about me. They’re all over 25 but they’re always children. Thank God I’ve got a family there especially hitting 60 this year. I’ll message some more when I can make sense of my thoughts. Peace and love to everyone 
Hi Rodds and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike Thehighlander and I help out around our various blood cancer groups.
I don’t have PNHL but was diagnosed in 1999 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma Stage 4a and although my Lymphoma ‘type’ is different I have experienced ‘the’ treatment journey but not necessarily the exact same treatments.
It’s a funny old journey as we do meet many people on the road and most of the time things move on and you do wonder how things are going with them - that’s when ‘hope’ comes in.
My cancer journey is ‘interesting’ so if you make a cuppa hit my community name have have a look.
I did a quick search on the site and found some old posts for PNHL. So if you try putting predominant nodular Hodgkin’s lymphoma into the search 
tool near the top you can look at the older posts and as always you can hit reply and see if the members are still looking in.
Do also check out Lymphoma Action, a small but very active UK Lymphoma Specific Charity who have lots of good information, videos and run regular regional online Lymphoma support groups and indeed a great Lymphoma Buddy Service.
Do also check out the Leeds Maggie's Centre as they run Heamatology Support Groups.
But this group is always open to chat and support.
Hi again Rodds, it’s a stressful journey. As I said before I have NHL but also had a GA biopsy on my brick sized growth in my neck, just watch out for any infections getting into the wound area.
The wait for results can be hard but no amount of stress and worry can change what is found but let’s look for good news.
My type of Non Hodgkin's lymphoma is also incurable but treatable so I do understand the challenge getting your head round this. Over my years I have come to see my condition to be like a chronic health condition that can be treated unlike other chronic conditions like MS, Parkinson's. Diabetes.....
I think that your type is actually called Nodular lymphocyte-predominant Hodgkin lymphoma - does this sound familiar?
There are over 60 types and subtypes of Lymphoma. Non Hodgkin's Lymphoma (NHL) and Hodgkin's Lymphoma (HL) are the two 'types' but within these 'types' there are sub types - very confusing.
I have actually talked with a few others with NLPHL on a Lymphoma Action Online Support Groups so worth checking this out.
Always here to chat.
