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

(38 Posts)
Greensleeves Thu 13-Oct-16 13:26:51

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

Stuffofawesome Thu 13-Oct-16 13:29:52

I can't coment on his prognosis but do you have a named nurse who can explain it all to you with his permission ? Sorry this is happening.

Greensleeves Thu 13-Oct-16 13:34:11

I do talk to the nurses looking after him and the doctors when they come round, but they seem to contradict each other. The other day a doctor told him he wouldn't be considered to go home for at least a week. The next day the consultant told me he wouldn't be allowed home at all because as soon as his bone marrow recovers they will need to start the next chemo. A doctor told me he had a 20% chance of remission after the first chemo but even if that happened this type of cancer would relapse and then he would die. But on the phone a staff nurse told me Burkitt's is one of the most treatable and I shouldn't assume the worst! It's so confusing.

Stuffofawesome Thu 13-Oct-16 13:41:09

It sounds really tough getting conflicting advice . Perhaps ask the consultant why they are all saying different things and get clarification. You may need to be bold and persistent.

P1nkP0ppy Thu 13-Oct-16 13:41:25

I would ask for a meeting with his consultant and tell them you want the facts. I would also look at and 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. flowers

Greensleeves Thu 13-Oct-16 14:51:14

I will ask to see the consultant again when I go up at the weekend, I'm at home in Exeter now trying to get rid of a throat infection so I don't give it to him. Just wish it wasn't all so uncertain.

Greensleeves Thu 13-Oct-16 18:09:32

Anyone else got a parent going through chemo/with a crap prognosis?

Greensleeves Thu 13-Oct-16 19:02:31


StealthPolarBear Thu 13-Oct-16 19:08:23

So sorry to hear this, bumping

mineofuselessinformation Thu 13-Oct-16 19:12:37

I've just started a second thread about my DF.
The conflicting advice sounds very familiar.
Do ask to speak to his consultant, tell them the different things you've been told, and ask what the treatment plan is.
Hugs to you.

FranklyMeDeer Thu 13-Oct-16 19:14:26

Hello Greensleeves, I've been having a look around on this board because my mum has just been diagnosed with pancreatic cancer. We don't have an official prognosis yet, however we do know that she already has secondary tumours in her liver and lungs, so I'm aware that it's a case of how long she has, which may not be very long at all.
I haven't seen her for a few weeks, I live a few hours away and we're not all that close. I'm off to see her at the weekend.
We only found out a couple of days ago and to be honest I'm in shock.
All the very best to you and your dad. I hope you get some decent information sooner rather than later.

MrsDeVere Thu 13-Oct-16 19:17:22

Message withdrawn at poster's request.

Greensleeves Thu 13-Oct-16 19:18:33

thanks stealthy xx

mineofuselessinformation I will ask to see the consultant as soon as I get up there at the weekend. It's so frustrating though that he only ever has a few minutes (I'm not complaining, everyone caring for my dad is wonderful, just very overworked!) and he would need seven years to explain it all to me. I'm a fact-finder by nature and I've read everything I can get my hands on, which I think is making it worse rather than better. Will find your thread and read it.

Frankly I am so sorry to hear about your mum. I found out two weeks ago and I am still reeling, it's just too big to take in. Give yourself time to absorb it sad

Jenijena Thu 13-Oct-16 19:19:54

Does your Dad have a Macmillan nurse? They can be great in coordinating the stuff into one message, and would be the person to say 'hang on, x said this and y said that, what does this mean?'.

It's shit. Sorry you're going through it...

Greensleeves Thu 13-Oct-16 19:22:39

Thanks Mrs DeV flowers 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.

Outinthegarden Thu 13-Oct-16 19:23:51

I'm so sorry you and your family are going through this. From my experience I'd suggest phoning tonight/tomorrow to make an appointment with the consultant incase they are not in at the weekend. I hope you get some clarity.

Greensleeves Thu 13-Oct-16 19:25:30

We did ask one of the doctors about contacting MacMillan, maybe for some counselling for dad because he seems very depressed and confused and homesick. But she said MacMillan wouldn't do anything unless his treatment was at the palliative stage which they can't confirm yet.

Emmageddon Thu 13-Oct-16 19:29:07

You can still contact MacMillan yourselves, they are a charity and very helpful. My DB had the same diagnosis and sadly didn't recover but this was several years ago, and there have been massive strides in the treatment of blood cancers now, you can also contact Bloodwise for information. Wishing you and your family all the best.

Citizenerased123 Thu 13-Oct-16 19:50:38

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. flowers

Greensleeves Thu 13-Oct-16 19:53:31

thank you Citizen, that makes a lot of sense x

dynevoran Thu 13-Oct-16 19:58:05

I'm sorry I can't offer any useful advice but I do know the feeling of things going from normal to serious in a short period of time and it's so hard to get your head around. I hope you get some clearer information soon and that your dad starts to get better again.

lovepigeon Thu 13-Oct-16 20:21:55

I am sorry for your devastating news OP and Frankly. We went through similar a year ago when my grandmother was diagnosed with pancreatic cancer at 75. She seemed completly fine a month before diagnosis but unfortunately died just over a month later. I do not know about Burkitts Lymphoma but we also had problems with the doctors not being clear about the prognosis which was very hard on my grandfather. He had the impression she would have chemo and get better at least for a few months and therefore pushed for interventions she did not want. The rate of decline was so shockingly fast, I got to speak to her just after diagnosis but that was the last 'proper' time as she was too ill to converse much after that. I miss her so much and feel robbed of the chance to have properly said goodbye and spend time with her. It is so painful to think of that last month, noone deserves such a horrible time. She was in France where palliative care is not so good, I hope at least you will have better care here.

Greensleeves Thu 13-Oct-16 21:28:03

Sorry about your grandmother lovepigeon flowers

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 sad

Greensleeves Fri 14-Oct-16 15:10:15

Just heard from my dad's partner, his temperature is back down and the consultant is saying they may let him go home for a day and a night next week before the next round of chemo starts (not sure exactly when as his bone marrow hasn't recovered yet, he's still neutropenic). They said he's responded better to the chemo than they expected.

does this mean the prognosis is better? does anyone know?

Stopyourhavering Fri 14-Oct-16 16:48:22

Sorry your having such an awful time, although your nads neutrophils are still low and therefore make him neutropenia, the fact his temp is now under control will hopefully mean that he's over this 'crisis'(nadir).
If his next chemo is not due till next week there's every chance his neutrophils are now on the rise and he will indeed be well enough for further chemo
I think at this stage things are very much touch and go especially as he was stage 4 when diagnosed as the lymphoma is in his bone marrow
There should be a specialist nurse who is assigned to your father , she should be a useful person to liaise with re your dads care
Hope he's beginning into feel a bit better, as the treatment is brutal

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