Hi all I was diagnosed with SMZL back in November 2025 and following my first chemo session in December ended up in hospital over Christmas after contracting neutropenia sepsis. Ever since I have worn a mask everywhere I go and use hand sanitizer whenever I’m not at home. Thankfully I recovered well from the sepsis and now only have two chemo sessions left. My question is am I being too over cautious?
My life basically feels like I’m going either to work and back or the hospital and back and I’m wondering whether I should start getting back to more normality like having the occasional meal out with my family or meeting up with friends and family
Thank you
Hi Emmark1907 and a warm welcome to this corner of the Community and I am sorry to hear you are on the Lymphoma rollercoaster.
I am Mike and I help out around our various Lymphoma groups.
I don’t have Marginal Zone NHL but I have been on my Lymphoma journey for coming up to 26 years first diagnosed way back in 1999 at 44…… when my first rare (8 in a million) ‘incurable’ but treatable type of slow growing Low-Grade Cutaneous T-Cell Non Hodgkin’s Lymphoma (NHL).
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…….. having had 750+ hrs of chemo, 45 radiotherapy zaps and 2 Allogenic (donor) Stem Cell Transplants between Oct 2013 and Oct 2015.
During treatment it is best to be that extra careful as the Risk of infection is real so care needs to be taken to control infection contacts.
Generally it takes about 48 to 72 hours for the body to break down and/or get rid of most chemo drugs. But the effects of the chemo on growth areas and your general immune system will last for weeks.
It is important to remember that you may well be more open to infections at about days 7-14 as this tends to be the window when your immune system is at its lowest……. then the body recovers in time for the next cycle….. but the more chemo you have the longer the recovery can take so by the end of treatment it could take a few months this to recover completely.
I actually had no infections over my main 2 years treatments…. we were not hermits….. we went out……. our mental health is importantly to consider.
Just not crowded places like supermarkets, restaurants etc. We would meet up with family and friends in a quiet corner of a garden centre….. fresh air is a good healer…….
We had family (4 granddaughters) and friends visit the house. The main thing is check that folks visiting are not carrying a bug…. coughing, sneezing etc….especially children.
We would open the windows and let some fresh air in and have good hygiene control……
Masks were not a thing back in 2013 to 2015….. so everyone found their own routine to live life around their treatments.
Actually my infections did not start until 10 months after my second Stem Cell Transplant with me being in hospital 5 separate times - 31 days in total over 3 years with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia x2 and Neutropenic Sepsis x2 ……..
I am 10+ years out from my last treatments and discharged from seeing my consultants since June 2018……. but my GP insists that I have 2 sets of on the shelf antibiotics (on repeat prescription) that I can take at the first signs of a developing infection and on the whole I have caught most infections before they develop.
You need to do what you are comfortable with…… we are all individuals and no one size fits all,
I have volunteered on this community but also on the various Lymphoma Action Support Platforms… for over 8 years and the actual perception of infections and how to live life has changed pre and post Covid….. I think we have a better understanding of good infection control and the best methods of living life around the challenges.
