Hi all
my dad has recently been diagnosed and awaiting treatment, he is going on a clinical trial.
since diagnosis he has been really off his food rapidly losing weight and also extremely tired, is this normal? Will chemo help him with his appetite?
Any advice for this journey appreciated as I am a very worried daughter (lost my mum to cancer 2 years ago so brings back memories) dad is almost 77
Hi again Beth Skyfullofstars reduced appetite, losing weight (I lost 27kgs) and fatigue can certainly be normal pre-treatment issues…… but once treatment starts this can help.
Do you know the treatment he us having and when is he starting?
Being a carer supporting someone going through Lymphoma treatment can be challenging.
You may want to check out 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.
They run various Support Platforms… I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey…… especially their monthly group for carers.
The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.
R-CHOP is a widely used and effective treatment for DLBCL I have no first hand knowledge of Acalabrutinib but I do know it’s a targeted therapy.
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 big brother of 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........ R-CHOP is nothing like this.
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 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 he does 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 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 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.
This link will help you get him ready for his treatment as it's a collection of suggestions from people who have been through treatment and are things that helped them during treatment...... Top Tips for the day of your Chemotherapy
((hugs))
