Nhl

Hi Hullfran and a warm welcome to this corner of the Macmillan Community.

I am Mike and I help out around our various Lymphoma groups…… and it’s good to meet you and well done getting through your treatment. 

I have been on my Lymphoma journey for over 26 years first diagnosed way back in 1999 at 43……. when my first rare (8 in a million) ‘incurable’ but treatable slow growing Low-Grade Cutaneous T-Cell Non Hodgkin’s Lymphoma (NHL) was found.

I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) type of very aggressive High-Grade Peripheral T-Cell NHL was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

My main treatment was between Oct 2013 and Oct 2015  having had over 750hrs of chemo, 45 radiotherapy zaps and 2 Allogenic (donor) Stem Cell Transplants….. I turned 70 last Nov and I am living a great life.

Even although my scan post my chemo was clear I was always going to have Stem Cell Transplant as my second type of NHL was very aggressive.

What exact type of NHL do you have?

Let’s look further a good result tomorrow…… you find the link below helpful as it has lists of questions to ask at various points on your Lymphoma journey.

Questions to ask your medical team about lymphoma

I dnt know what type i know was stage 4 has spread from neck lymph nodes to my gi tract were there are tumours 

Hi again….. there are over 60 types and sub-types of Lymphoma and each can be different from each other and the treatments used can be different as one treatment does not fit all.

I would think that your actual type will be mentioned on some of your hospital paper work.

Thankfully the Staging in Lymphoma is rather different from solid tumour cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not.

I was stage 4a back in 2013 and it made no difference to my outcomes.

Staging in Lymphomas identifies…..

1) Where the Lymphoma is presenting in the body (it can be anywhere in the body and in multiple places)

2) What is the best treatment approach and best treatment type for your presentation

3) How long your treatment needs to be.