Hi. My name is Jude. The Highlander has directed me to this site.
I'm 73 and was recently diagnosed with DLBCL. I've had one round of chemo and have come through it relatively unscathed apart from a very dry mouth. Do the symptoms get worse with subsequent cycles?
For the past 3 years I'm been a carer for my friend who has lived with me for 24 years. He was diagnosed with MS in August 2020 but appears to have Secondary Progressive as he has deteriorated at a rate of knots. Following 4 falls last week on consecutive nights he decided it was time he went into a care home. He is currently in hospital undergoing tests.
I feel totally overwhelmed at the moment. I've got numerous appointments coming up and, at the same time, am trying to sort things out for Graham.
My friend is helping with lifts but is 80 and can't be expected to run round after me. One of my sons lives locally and is on call if I need anything.
I could really do with someone to help me sort Graham out but I don't know which way to turn.
Everyone says I should be looking out for myself but it's difficult.
Hi again Jude thegothmother and well done navigating over to this corner of the community.
I don’t have DLBCL but as you know I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of T-Cell NHL eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
What is the name of the treatment you are on?........ I will take a punt and say R-CHOP as this is often the go to treatment for DLBCL.
I was on the big brother of R- CHOP........ I had 6 cycles of R-EPOCH back in late 2013/2014 and honestly I did well during it all and this was with me being in hospital 6 nights/5 days on my 2 IV pumps 24/7 for over 120hrs each treatment........ R-CHOP is nothing like this.
As I said the Side Effects of Treatment can be ever so different. We could line up 10 people with the same NHL and on the same treatment and get 10 different stories. It's good that you came through your first treatment ok and as I said in your first post Difflam worked for my dry mouth along with drinking a few liters of water a day to keep my body well hydrated.
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 never sick during my 750+ hrs of main chemo.
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 our immune system is at its lowest……. then the body recovers in time for your 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.
It is also VERY important to have accurate contact information/names/numbers for reporting in issues especially during out of hours and weekends especially if you have an infection.
I am so sorry to hear about Graham, this is very challenging but what your friends are saying about looking after yourself is so important as the further into treatment you go the more fatigued you will get so you will need to take more time to recover........ then the fatigue will take time to go once you are actually finished treatment.
You may want to call the Macmillan Support Line it is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides practical information, emotional support, benefits/financial guidance or just a listening ear and you can talk though the challenges you are facing with supporting Graham..
The hospital should not release Graham without everything being put in place and this should include a care plan....... but also the hospital should put you/Graham in contact with Social Care so that you can get advice about practical things.
We also have our Ask an Expert section but do allow a few working days for a reply.
Always around to chat ((hugs))
Do you have a service agreement for your boiler?
We had problems with our heating a few days after one of my chemo cycles. We live in the Highlands of Scotland so get some very cold weather during the winter.
We have a server agreement with Scottish Gas and they came out very quickly once my wife told them I was going through chemotherapy.
I do hope you get this fixed quickly
Don’t get yourself cold, your immune system is not working at 100% so a simple cold, sniffle can turn into an infections - let’s look for this to be fixed ASAP ((hugs))
7-14 days post treatment tends to be the low point. As long as your temperature is ok you often just have to rough it out and push through.
Mouth washes etc are not an instant fix….. it takes time to build up the prite ruin. I used mouth washes regularly every day all the way through my treatment including the days I was not actually having treatment.
I would also recommend you try blitzing some fresh it tinned pineapple and putting it into ice cube trays and freezing it…… then regularly taking a few cubes and sucking on them - again this helped me to some extent ((hugs))
Sorry to hear this…… things like this need to be taken care of as if left can develop further like an infection and could end up with more demanding treatment that could have you ending up in hospital 
When you talk with 111 they can arrange for you to see the out of hours GP cover and not have to wait in A&E
You can also go to the duty pharmacy in your area tomorrow - Sunday and can talk with the pharmacist under the small ailments clinic and they may prescribe something for you.
