Dad has non hodgkin lymphoma and has his first round of chemo mid Aug. Can anyone please give me advice on how best to support him before, during and after? He's not wanting anyone to go with him to his appointments as doesnt want a fuss, he just wants us at home to entertain mum. Obviously we will take and pick him up.
Hi RtaGr004c22 and a warm welcome to this corner of the Community although I am sorry to hear about your dad.
I am Mike and I help out around our various Lymphoma groups.
For some context I was diagnosed way back in 1999 at 44 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 NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so I most definitely appreciate the challenges of this journey rather well.
A few questions…..
What of the 60 types and sub-types of Lymphoma does your dad have?
What has he been staged at?…… Staging in Lymphoma is rather different from solid 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 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.…….
What treatment is he having?
Information like this is ever so important as with this information we can help you help him better……
Unfortunately there is a good chance that as he is going into appointments on his own he may not be taking in this important information.….…. he really needs another second pair of ears at appointments….. I listened but my wife was the note taker and prompted the questions that we had prepared before each appointment.
Top tips for getting the best from your appointments
Questions to ask your medical team about lymphoma
Questions like…..
Has he a type of slow growing Low-grade non-Hodgkin lymphoma?….. these are seen as life long conditions but treatable when required
Or a type of fast growing High-grade non-Hodgkin lymphoma?….. these are often treated aggressively but the initial aim can be to cure……. yes all very confusing- welcome to the world of Lymphoma.
Is he having his treatment as a day patient?….. or like me, I was in hospital for 5 nights/ 6 days on my 2 IV pumps 24/7 for over 120 hrs over my 2 cycles…….there can be significant differences in treatment approach depending on his type of NHL, where it is presenting and what stage he has.
These 2 links will help you get your mind round what will help him
Top tips for family, friends and carers
Top tips for the day of your chemotherapy
In no specific order these are some of my simple tips.
Nausea may be a challenge, but remember he must not to suffer in silence as there are lots of tools available - but his team need to know how he 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 he 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 he 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 his general immune system will last for weeks and is important to remember that he may well be more open to infections at about days 7-14 as this tends to be the window when his immune system is at its lowest……. then the body recovers in time for the next cycle….. but the more chemo he 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.
Are you and your dad in the UK?
If you have any questions do ask them.
