Hi all,
My son has recently been diagnosed with Stage 4 Hodgkins Lymphoma. We are really hoping the outcome will be cure like the consultant says but I'm terrified of managing infection during the chemo. And am really struggling with my anxiety.
Any positive help or stories to keep me calm?
Hi Worrymumand a warm welcome to the Community but sorry to hear about your son’s diagnosis.
I am Mike and I help out around our various Lymphoma groups.
I don’t have Hodgkin's Lymphoma 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.
I had no infections over my 2 years main treatments…. but I may have been lucky.
There is obviously a Risk of infection 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 the general immune system will last for weeks and is important to remember that he 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 he has the longer the recovery can take so by the end of treatment it could take a few months this to recover completely.
I was given this simple rule for keeping eye out for infections…… If my temperature is 37.5°C (without taking paracetamol as this can take your temperature down and hid an infection) repeat in one hour. If my temperature had increased, whether I feel unwell or not, I must call it in…….
This was to the chemo support line during treatment but now I call 111 and where my notes have a red infection flag…….
This is especially important with regress to Sepsis as sepsis doesn’t always cause a high temperature though, especially if someone is taking steroids……. below 35°C could be a sign of infection which your immune system may be unable to fight so this needs to be called in.
It is VERY important to have accurate contact information/names/numbers for reporting in issues especially during out of hours and weekends.
Based on my long experience we were not hermits….. we went out……. our mental health is important 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, good hygiene control…… We did this all the way through my main 2 years treatment 5 months of Chrome, 45 sessions of radiotherapy and 2 Allo (donor) SCTs….. and I did not have one infection.
As Pete Tenterden has highlighted do check out the UKs main Lymphoma charity - Lymphoma Action.
The Lymphoma Action website has lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
If you are in the UK you can also access their various Support Platforms…
I highly recommend these groups as this will widen you and your son’s support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey……
Their Closed FB group alone has over 6400 members and unfortunately you would most likely bump into me on there also ;)
They also have a great Buddy Service where you and/or your or your so can be linked up with someone who has walked the same support/treatment journey.
The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.
Google is just not your friend and most certainly will generate more stress than you need.
The main place to find accurate, up to date information is on the Lymphoma Action website.
Do call the Lymphoma Action helpline open every week day from 10 till 3 on 0808 808 5555 as this will give you an opportunity to talk your concerns through with the team…..
Actually a few years back once I started volunteering for MacMillan and Lymphoma Action I put lump in my neck into Google and I followed the top hits… after a few hits I was being told I had 6 months to live….. the next top hit was an advertisement for a funeral directors…… this is how wrong Google can be!!!!!!
But tthere is good info out there..,,. just look at the reliable sits,
