Hello

Hi again Charlie7 and well done navigating across to this corner of the community.

As you know from my reply in your post in the New to Community I don’t have Angioblastic T cell Lymphoma…… but as you know I have been in my journey for over 25 years with 2 rare types of T-Cell NHLs

You can see from my story that I have had a lot of chemo over my years and on the whole I had no real problems with it all…….. what is the exact name of the chemo you are having?

Getting yourself ready for treatment is important so you may find this link very helpful…… Top tips for the day of your chemotherapy

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 this simple rule for keeping eye out for infections…… during treatment but I am now 9.5 years out from my last treatment and have been discharged for 6.5 years but I was still told to use the same advice.

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 has 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…….

I have been in hospital 5 times - 31 days (the first was a year after my last treatment) post treatments with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia x2 and Neutropenic Sepsis x2

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. 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.

Any questions do ask them.

Thank you Mike, this is really useful and I appreciate your time replying. Yeah will probably stay clear of a take away if it makes things worse.

From what I have read, it seems important to listen to your body, rest when it needs to but as you said stay active and drink plenty. 

Thank you so much again, feels good to start to talk about this.

Good morning Charlie….. as you may know T-Cell Lymphomas are rare and it is often hard to actually ‘talk’ with others with the exact same type….. it took me a long time to connect with others with my type.

Are you in the UK?