Dad has stage IV lymphoma, three weeks ago he was OK and now he's unrecognisable. Anyone knowledgeable about cancer?

[Greensleeves]

He was diagnosed with Burkitt's lymphoma a couple of weeks ago and has been in hospital ever since. It's a bulky abdominal tumour, spleen and kidney involvement and extensive in his bone marrow. When he was first diagnosed we were told "prognosis is poor, probably a few months, get his affairs in order". He's had one cycle of intensive chemo (DAR EPOCH) and he's neutropenic so we're waiting for the blood results to recover to find out what the situation is. Apparently it's the fastest growing human cancer so as soon as he starts producing b cells again they are going to start the next chemo cycle.

He can't eat more than a couple of spoonfuls, he's lost huge amounts of weight and he's shaking and confused most of the time. He's convinced he's going to be out in a few days and varies between saying he's just pulled a muscle and talking about being resigned to death, having no regrets etc. His temperature spikes over 38 at least once a day but no infection is showing up in blood cultures. His mouth and throat are inflamed and he finds it hard to swallow and speak. He had tumour lysis syndrome with the chemo so he's being pumped full of fluids etc.

I'm confused about prognosis. Are we still looking at a few months or is there a chance the chemo will work and he'll recover? He's 75. The different doctors seem to say different things and I don't know what to think.One minute I'm grieving and the next I feel like I'm being silly because he might not die. My kids are in pieces, they adore him. I'm commuting between Exeter and Stoke on the train every few days.

Three weeks ago he was up a ladder cutting hedges, a month ago we were all in Ireland playing music and hill-walking. It's like a nightmare. I know there are other MNers going through similar, I just wanted to share and see if anyone can shed any light, or wants to do mutual hand-holding

Greensleeves - Burkitt lymphoma is a horrible and aggressive disease but is potentially curable with chemotherapy. From what you have written It sounds like the team are treating your dad with the aim of cure, but are being being realistic in that the chemo might not work, or your dad might not be strong enough to withstand the intensive chemo required.

The fact that he is feeling better and discharge is being considered is definitely a good sign, but I agree with an earlier comment that really is a case of taking it day by day,and cycle by cycle.

Will be thinking of you.

thanks for the insights, that does seem to make sense and tally with what they've been saying. They were very pessimistic at first but the message seems to have changed somewhat probably because he tolerated the first chemo better than expected. So I'll just keep everything crossed. Next chemo will be next week apparently, I wonder when they will be able to give us more idea as to whether the cancer is fighting back or not?

I'm really struggling with the not knowing, I keep bursting into tears at little things like songs he sings (we've been musicians together since I was a kid and dh plays too) coming on the radio. Can't pick up my instruments or listen to music at all tbh. Feel sick all the time. Then feel guilty because he hasn't died, I should be coping better than this and being positive. It sucks.

Can't sleep. Anyone else still up obsessing about cancer?

I'm so sorry to hear what you are going through Greensleeves.
My husband was diagnosed with stage IV high grade Non Hodgkins Lymphoma back in 2009 at 25. Everything happened so suddenly, with no signs he was ill until a week or so before he was rushed into hospital to remove a fast growing tumour.
The prognosis was bad and the chemotherapy was tough (extended as not as effective as they hoped) but we got through it and he is doing well 7 years on.
I remember feeling so helpless and so many sleepless nights, so please don't feel guilty. You are coping the best you can.
It is the hardest thing not knowing what the future holds and feeling like you are not getting clear answers, but it really is a case of day by day and seeing what treatment works for him and how well he copes with it. He sounds like a strong man.
The hospital or even GP should be able to assign you to Macmillan nurse to give your Dad some support when at home and a place for him to direct questions about symptoms or talk about how he's feeling. They really are invaluable.

I wish you all the best and will keep your Dad in my thoughts. X

Greensleeves - we usually do a scan after 2-3 cycles to see how the chemo is working. The fact that your dad is 'stable' is a good sign.
Have you had much contact with his specialist nurse? They are usually fantastic source of information and support and should be able to answer questions like this. Our CNSs are happy to be contacted by email.

Bloodwise website is quite useful too.

Greensleeves, I totally get the music thing. If you want some background noise to keep you company, try something like Radio 4.
Sparkling water is good to settle the stomach, I've found. (I've been doing the 'retchy' thing, particularly in the morning.)
Sending you a hug.

How are you doing Greensleeves? I totally understand the sick feeling. I've been drinking soda water and eating watermelon which helps enormously.

I'm ok thanks, I just got home today after another stint with my dad. I've got a chest infection and a cold which I don't want to give him, so I'm staying at home to get rid of it, his second round of chemo starts on Friday so I'm hoping I'll be back up with him when that starts.

The worst thing is watching him in pain and not being able to do anything about it. He's so dopey and drowsy, he's showing his emotions more in his face than usual so it's like watching a child suffer, his face crumples when he has to swallow something and it hits me right in the guts. But I'm trying to get comfort from the fact that he's here, he's alive and i can be kind to him and be a part of keeping him as happy as he can be. His hair is starting to fall out now, I was pushing him in the wheelchair in the hospital yesterday and there were silver strands all over his back and my bag :(

Hope you're feeling a little better, greensleeves.
Now is definitely the time to look after yourself as well - if you don't, you can't look after anyone else. I've had to go and get medication for a stress induced condition tonight (vertigo).
I think in our different ways (in terms of conditions) we are both in it for the long haul.
My hugs to you.
And fwiw, I don't think there are any battles, or any 'kicking cancer's butt', just many, many families doing whatever they can to get through the next hours, days and weeks.
KOKO, to repeat a well-used phrase on here, but do take care of yourself.

How is your dad doing Greensleeves? X