Complete Remission.

Hi Debbie66 so so good to hear your news and this is a great early Christmas present  

Indeed, never give up as there is always hope until it runs out ((hugs))

You were amazing to me and I want you to know how very very grateful I am to you. Thank you from the bottom of my heart 

This is very heartwarming and inspiring. Well done to you, and good luck with the future!

Thank you so very much 

This is amazing! I am new to this forum and have just been diagnosed and am scared (awaiting scans for staging) so it’s great to hear someone has got through it - fantastic x 

Hi Claire13  and welcome to the group. The more you talk with others the more you will start to realise that this is very treatable.

Staging in lymphoma is a tool for pinpointing the type of treatment and for how long……. and unlike in other cancers a high stage number is not a poor prognosis….. I was stage 4a in late 2013 and I am still here doing great.

Do you know the exact type of NHL you have?….. as there are over 60 types and sub-types of Lymphoma 

Hi Mike, thanks for the reassuring words, I think talking to others who understand this condition definitely helps. Not sure what type yet, my biopsy report went to the ENT who did the op so he’s not got a full report and has referred me to a haematologist for full body scan. Do you know if a bone marrow biopsy is always done? I will struggle to have this and am currently thinking I will refuse - not helpful I know but I am fearful of needles and hospitals (not a good combination in my current position)!!! 

Hi again, It took 14 years after my diagnosis before I needed a Bone Marrow Biopsy….. it often depends if this is a Low-grade non-Hodgkin lymphoma or High-grade non-Hodgkin lymphoma.

I have had many BMBs and they were fine…… there has to be an acceptance that you will have to deal with stuff as this is all about the greater good.

Hi, it’s comforting knowing you went so long without having to have this (I understand what you are saying re the greater good of course). The ENT said high grade, but not sure what specific type (hope that makes sense)! 

Yes this makes total sense, I think you need to be prepared that you may go into treatment soon as High Grade often needs to be treated straight away….. and unfortunately you may well have to have a BMB……. but unlike my low grade that is incurable….. the initial aim of the treatment used for High Grade is to cure. 

You need to prepare for your Heamatology appointment so this link will help you understand questions you need to be asking  Questions to ask your medical team about Lymphoma

I have been on my journey for over 23 years now and I am still here living a great life (hit the link below to see my story)