Stage 3 NHL

Hi Dottiec and a warm welcome to this corner of the Community. I am Mike and I help out around our various Lymphoma groups. 

For some context about me. I was officially diagnosed way back in 1999 at 44…… although I now realise I had most likely been living with with my rare (8 in a million) incurable but treatable type of Skin (Cutaneous) T-Cell Lymphoma (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-cell lymphoma not otherwise specified (PTCL-NOS) (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

Your Follicular Lymphoma like my first type of NHL is seen as a life long incurable but treatable condition….. 25 years ago my Consultant told me to have a mindset that I had a chronic life condition.

Yes in all my 25 years I have never had a blood tests that pointed in any way towards my Lymphoma but blood tests can highlight changes in the body that may be connected to the Lymphoma effects…… but these bloods can find other issues that we can have regardless of our lymphoma  diagnosis……. actually my regular appointments did highlight other medical challenges that had to be dealt with.

I have never had a PET scan so don’t know the challenges of having repeated scans……. But over my first 16 years I had a minimum of one CT with contrast a year but many more once I went into my various treatment between late 2013 to late 2015.

Due to me having to be treated for my 2 rare T-Cell NHLs at the same time my main treatment journey from late 2013 to late 2015 was rather complicated (See my story) but I am coming up to 10 years out from my last treatment, I turn 70 this year and I doing great.

Hi Lizzie, my name is Victor. I also have stage 3 non-hodgkin B-Cell lymphoma. I was diagnosed in 2021 with this disease, I went through 6 months of chemotherapy, after which I was examined for another year. That is, until the summer of 2022 and since then they told me that I was fine and the treatment responded successfully and I am in remission. No one has asked me since then how I am feeling, not even my family except for my daughter who is the only one worried about my situation. For me, I say it is very good because I am going into this fight as a winner and I do not want to end up in the hospital again. I have the information from them in case something goes wrong with me, what to do and that's it. Life is hard for me now because my wife has distanced herself from me, she does not believe me how hard it is for me to forget my problem and what suffering I have gone through. I do not receive anything from those around me, but nothing. That's it, I will continue on my path. From my point of view, this is a problem. I am very sorry for the disappointment you are going through and I hope my story helps you in some way. I wish you all the best and a lot of strength in this fight.