Starting chemo

Hi Gingerninjer and welcome to this group…… we do have a dedicated Diffuse large B-cell lymphoma support group so Akways worth having a look through the posts.

What of the few first line treatments are you having?….. I was an inpatient for 5 nights 6 days for each of my 6 cycles of R-EPOCH and the clinical team walked me through everything in the early days and got into a rhythm very quickly.

If we line up 10 people on the same treatment for the same Lymphoma 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.

You may find this link….Top tips for the day of your chemotherapy helpful as you get ready for 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 once 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 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 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 these simple rules 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… when on treatment I used the Treatment Hot Line number I was given……. but post treatment I was advised to call 111 and this always opened the right doors for me to get seen, assessed and treatment if required.

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 as well.

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. 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.

Happy to answer any specific questions.

Wishing you the best of luck tomorrow 

Hi Gingerninjer

It's all very difficult to get your head around to start with it is a big learning curve.

I wouldn't say things get easier as you get past each cycle of treatment but you learn what to expect and that makes things more manageable. Personal found it all become very tedious. You spend a lot of time just waiting for test or the next cycle or scan etc.

If you have a look back through the topics there is some info on what to take with you on treatment day that is worth a read.

Regards Ken (Garfield)

Thanks so much for all the info.

Thankyou.

Thankyou