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
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Life-limiting illness
Dad has stage IV lymphoma, three weeks ago he was OK and now he's unrecognisable. Anyone knowledgeable about cancer?
Greensleeves · 13/10/2016 13:26
I would ask for a meeting with his consultant and tell them you want the facts. I would also look at //burkittslymphomasociety.com and //www.lymphomas.org.uk/types-lymphoma/non-hodgkin-lymphoma/burkitt-lymphoma could be useful too. macMillan can help too.
It's a horrible thing to be dealing with op, I very much hope you get some answers. 
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Thanks Mrs DeV they did say they are watching to see how he tolerates the first cycle. He hasn't had vomiting or anything like that but he's so weak, his limbs are like sticks and he shakes all the time and has literally no energy. He keeps spiking temperatures and they haven;t found why. It's such a shocking decline, a month ago he was striding about and making everyone laugh. Fucking cancer.
Sorry to hear about your poor father and what a difficult time you are having especially with conflicting information. I am a doctor but not a cancer specialist and have never managed anyone with Burkitt's lymphoma but I have spent enough time on the wards to be able to guess what has happened. Sometimes the info given by the ward team varies according to knowledge/ seniority but ultimately any management or discharge decisions will be for the consultant to make; they are ultimately responsible and they have more experience. Junior doctors will give you their opinion of the management plan and a ballpark plan for discharge but it's not unusual for a consultant to change the plan on his/ her ward round.
As for the nurse, I do wonder if she hadn't quite grasped the fact it is Burkitt's lymphoma and so reassured you based on her experience with Hodgkin's/Non Hodgkin's which are far more common and more responsive to treatment. I think she was wanting to be kind and supportive but as you have experienced, when information is given out that isn't 100% accurate, it can make it more difficult. As you have realised you need to speak to the consultant or their Specialist Registrar to have a proper discussion and be given all of the information you need.
As for meeting the consultant at the weekend, it will depend if they are on call as they will share weekend duties on a rota basis with their colleagues. I don't think speaking to one of the on call doctors will help you and you may well get more conflicting information as they will not necessarily have all of the information that you want. If I were you, I would phone the consultant's secretary tomorrow and ask if it would be possible to speak to them on the phone if they are not going to be available at the weekend. If the consultant is not available to speak they will probably ask their SpR to speak on their behalf and they will have all of the information you need and are experienced enough to be able to answer any questions you have.
Good luck and I hope you father starts to feel better.
Sorry about your grandmother lovepigeon
It's the rate of decline that has me shocked. It feels like no time at all and he has had all the stuffing knocked out of him :(
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