R Benda… side effects timeline??

Hi KatB25 and a warm welcome to this corner of the Community although I am sorry to see you joining us.

I am Mike and I help out around our various Lymphoma groups. 

I don’t have Follicular Lymphoma but 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.

……. and more so as I am also in Inverness and had most of my treatment at Raigmore - I know it ever so well.

R Benda 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 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 R Benda - 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 Raigmore 6 nights/5 days on my 2 IV pumps 24/7 for over 120hrs each treatment.

These are some of my simple tips.

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.

You may see signs 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….. fresher 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.

If you have any questions do ask them

thanks for all of this really helpful information Mike. Taking the good days as they come and getting through the less good ones particularly. As in “this too shall pass”! 

The staff at Raigmore have been superb, not least consultants speaking with doctors in Australia last month as we were on holiday when I became really unwell. 

I need to reconcile with not knowing how tomorrow will be, it’s stealing from today in a way. 

Thanks for taking the time to reply.

Yes the team are amazing although it’s a few years since I needed their help as I was discharged back in June 2018 and now getting on with life.

In June 2014 I went down to Glasgow at the Beatson for a month having my first Allograft (donor) Stem Cell Transplant…. this failed within 6 months, but I went back to Glasgow in Sep/Oct for 7 weeks for my second Allo SCT - it’s was a long recovery but I am living a great life.

As I was in Raigmore for 6 days I used to take my chemo trolly for walks around the ward corridor (I was not allowed out of the ward) after every meal….. this honestly helped reduce the fatigue developing. 

I like this quote from Corrie Ten Boom

“Worrying is carrying tomorrow’s load with today’s strength - carrying two days at once. It is moving into tomorrow ahead of time. Worrying doesn’t empty tomorrow of its sorrow, it empties today of its strength”

I do t know if you have been across to Maggie’s yet….. do try visiting it on your good days.

• I’m literally moved to tears by that quote. Exactly what I am doing just now. Thank you for sharing that and some of your story. 
  Kat