Hi, I’m a newbie

Hi Dredog 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 DLBCL but I was diagnosed way back in 1999 at 43 with a 7 in a million rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 when my NHL was then presenting as a more aggressive type of NHL so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

As your DLBCL is a fast growing type of High-grade non-Hodgkin lymphoma……. the initial aim is to cure….. unlike my type that is incurable.

Have you been told the exact name of the chemo regime you are having?

You will find this link helpful Top Tips for the day of your Chemotherapy as it is a collection of tips as to what helped people during their chemo.

A few thoughts based on my 25 years journey.

There are a number of treatment regimes available and these are 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 more demanding 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.

My story is rather complicated See my story as I had to go onto other treatments but I am coming up to 8 years out from my last treatment and I am turned 68 in Nov and doing great.

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 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 contact the hospital.

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 you well hydrated.

It is VERY important to have accurate contact information/names/numbers for reporting in issues especially during out of hours and weekends.

There is no need to be a hermit….. you can go out. I would meet up with friends in a quiet corner of a garden centre….. fresher is a good healer……. The main thing is check that folks visiting you at home are not carrying a bug…. coughing, sneezing etc….. and open the windows and let some fresh air in,

Happy to chat or answer any specific questions you have.

Hi Dredog. I hope your for first chemotherapy treatment went well for you.
I too was diagnosed with DLBCL in November 2023 and have now completed my R-Chop chemotherapy regime and currently in remission. 
What chemotherapy regime are you having ? 
Mike has given some excellent advice and tips below , I would definitely agree take a day at a time and be kind to yourself as it can be tough. 

Hi Laineb …… I see it’s your first post in the group so a warm welcome to our little corner.

Hello Mike

Thanks for your message and sharing your journey with me.

My treatment is R-CHOP, every 3 weeks for 4 cycles. 
Monday was a bit eventful but I’m home now and taking each day as it comes. It’s ok so far.

I’m drinking lots of water and my appetite is still good at the moment…I guess that may change but for now I’m eating like a horse !!

Tess

Hi Laineb and thanks for your message and support.

I’m glad your treatment is complete and you’re in remission now.

R-CHOP for me too.

I’m being very gentle with myself yet trying to keep some sense of normality…I’m usually working hard and always doing something socially….these past couple of months have been challenging in that respect. 
I hope you’re able to enjoy this beautiful weather, it looks to last the weekend.

Hi Tess Dredog yes first days are often eventful for various reasons be it your team looking for any reactions, your body having a pity me party and saying it’s not happy but good you are home.

R-CHOP one of the main first line treatments for DLBCL…….. I had R-CHOPs big brother 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........ R-CHOP is nothing like this.

Good to hear that your are drinking well and eating - these are very important to flush out the toxins and keep your body hydrated….. food is your bodies fuel……. the body will use up a lot of fuel.

Make sure you keep active…… this helps reduce some of the fatigue ((hugs))

Hi dredog

Glad to hear you are being gentle with yourself. I am very much the same in keeping myself busy, so slowing down was difficult at times especially when you are feeling well, I think that was the steroids!  I found going for a walk helped when I was getting fidgety and it’s always great to get out and about.  I did experience the fatigue Mike mentioned towards the end of my treatment ( I had 6 cycles ) but more so after .  I am currently taking part in a macmillan 12 week exercise programme which I am finding extremely helpful with this….. and the beautiful sunshine when it’s out! 

Enjoy your weekend 

Dear Mike and Laineb

Hello ! I hope you’re both doing ok ?

By day 9 I was doing much better following the first treatment.

I’m day 14 now. My hair has started falling out in handfuls and that has made me feel upset, even though I expected it, have bandannas, hats, etc.

I wanted to ask this : do you feel similarly or differently after each cycle of treatment ? Is there a cumulative build up of fatigue ? I have been walking park run and trying to walk daily but if I need to rest, I’m resting,

Thank you

Hi again Dredog I am doing great although this weather!!!…… good to hear from you….. the hair thing is challenging but my mindset was ‘if the treatment was doing this to my hair what was it doing to my cancer?’…… and remember this period is temporary.

If we line up 10 people we will get 10 different answers about how each cycle develops…. often the first cycle is a shock to the body so it’s better prepared for the next hit. 

The fatigue does tend to build up over time but you are doing the right things - it’s a balance between recharging the batteries (your energy) and keeping active as being active actually over rights some of the fatigue….. you are doing great. 

Thanks Mike