My mother has just been diagnosed after 18 months of tests.
Stage 4.. absolutely everywhere..
Starts pole-r-chop 18th November.
Will keep updating here for people to read..
And no doubt will be asking loads of questions as she gets side effects etc
Great to know people care.
Hi Jason000 welcome to the forum..That's what we are here for for people to ask questions and hopefully get some answers and support from the people who know more about this type of Cancer. My colleague The Highlander springs to mind as he is very knowledgeable in this area and I'm sure will be along soon.
Hi Jason000 and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your mum.
I am Mike and I help out around our various Lymphoma groups.
I don’t have DLBCL but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (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.
At this early stage it is very important to understand that Staging in Lymphoma is rather different from sold tumour cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not……. I was stage 4a (my skin was 70% covered in tumours) back in 2013 and it made no difference to my outcomes.
Staging in Lymphomas identifies…..
1) Where the Lymphoma is presenting in the body (it can be anywhere)
2) What is the best treatment approach and best treatment type for your presentation
3) How long your treatment needs to be.
Your mum’s DLBCL is one of the many of types of fast growing High-grade non-Hodgkin lymphomas…. The confusing thing about a Lymphomas is that on the whole the fast f growing types respond better to treatment than the slow growing Lymphomas and the initial aim of treatment is to cure or at least provide long term Remission.
How old is your mum?….. I went though my main treatment when I was 58 - 60 but I know people who have been significant treatment in their mid to late 70s…… some in their 89s
As you and your mum get ready for the 18th you may find these 2 links helpful as they are a collection of ‘Top Tips’ gathered through Lymphoma Action. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
Top tips for family, friends and carers
Top tips for the day of your chemotherapy
Pole - R-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 exact 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 Pole-R-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........ Pole-R-CHOP is nothing like this.
My story is rather complicated See my story as I had to go onto have significant treatments mainly due to me developing a second more aggressive type of T-Cell NHL in late 2013……….. but I am 9 years out from my last treatment and turn 69 next week and I doing great.
These are some of my simple tips.
Nausea may be a challenge, but remember she must not to suffer in silence as there are lots of tools available - but her team need to know how she is 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 she needs 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 she does 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 her general immune system will last for weeks and is important to remember that she may well be more open to infections at about days 7-14 as this tends to be the window when her immune system is at its lowest……. then the body recovers in time for the next cycle….. but the more chemo she has 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 the reply. Really interesting. 9 years since last treatment is brilliant.
Moms 73.. she's a retired nurse so worst patient.
Gonna fight it. So keep you informed
Hi Jason000 good to hear that her first treatment went well…..
Going forward you look for a smooth journey with regards to any side effects…… and definitely don’t be sitting around waiting for something that my not even happen…..
Keep life as normal as possible (read through the tips I gave you in my first reply)…… and if any side effects do come along….. these can be dealt with.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
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