CHOPS Treatment for follicular lymphoma

Hi Jimboj    and a warm welcome to the Community and 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 Follicular Lymphoma but I have been on my Lymphoma journey for over 25 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 NHL was presenting.

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.

CHOP https://www.cancerresearchuk.org/about-cancer/treatment/drugs/chop is one of many types of regimes available, it is widely used and very effective......... as for the journey?.... if we line up 10 people on the same treatment for the same NHL we will get 10 different stories...... as the Side Effects of Treatments can be ever so different.

My great CNS (Cancer Nurse Specialist) initial words were “……Mike you can read all the information available and then start to catastrophise that every side effect that you have read about will happen but the reality is very often rather different….. take each day as it comes, celebrate the good days, endure the not so good day”…… and she was spot on.

I had the big brother of CHOP - R-EPOCH back in late 2013/2014 and honestly I did well during it all and this was with me having 6 cycles that had me in hospital 6 nights/5 days on my 2 IV pumps 24/7 for over 120hrs each treatment........ CHOP is nothing like this.

I know that some folk are able to work-ish during treatment but everyone is different.

These are some of my simple tips.

First this great link……

    Top tips for the day of your chemotherapy

Nausea may be a challenge, but remember you must not to suffer in silence as there are lots of tools available - but your team need to know how you are getting on as at times it is trial and error to get the right one.

I was only sick a few times during my 750+ hrs of main chemo and this was down to a bad food choice…… I just wanted some takeaway food….. believe me it’s not a good idea.

Cancer-related fatigue may well build up over time so you need to take each day as it comes but at the same time keep some activity going as this does actually help overcome some of the fatigue..... the less you do the longer the recovery.

There are signs everywhere in my local Heamatology ward and clinic saying a week in bed is like ageing physically by 10 years….. and the recovery after this is much longer.

There is a real 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 your general immune system will last for weeks and 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 was given this simple rule for keeping eye on infections…… If my temperature is 37.5°C, repeat in one hour. If my temperature has increased, whether I feel unwell or not, I must call it in…….

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.

I would also highlight the importance of drinking lots of water (the aim is 2 litres every day) as this will flush out all the toxins released by the chemo, protects the kidneys and keeps him well hydrated.

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 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….. tell their school you are going through treatment so they can get back to you if there are any bugs going through the school.

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.

If you have any questions do ask them.

I will also add that in way of some encouragement……

I was diagnosed in 1999 age 44 our daughters were 14 and 18…… but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turned 70 back in Nov last year and I am coming up to 10 years since my last treatment.

This can be done. 

As the great Highlander Mike said everyone reacts differently I had 7 months of chemo following my diagnosis of low grade follicular NHL I was very lucky having zero side effects whatsoever with the exception of being tired I'm a postman and with the exception of the 1st month of chemotherapy where I was not allowed to work, I carried on working throughout on my delivery albeit not the full amount as I physically couldn't manage that (exhaustion is a bummer lol) my chemo is now done and I'm currently on a two year maintenance plan where I have an antibody infusion every 2 months once this is done providing it all goes to plan it will be a once a year check my recommendation is to try and stay as positive as you can,your body is going through a big fight,it will be fighting the cancer,the drugs,the picc line if you have to have one so a positive mental attitude will help although easier said than done lol I wish you all the best take care