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Elderly father with leukaemia

19 replies

blackpear · 03/11/2024 17:19

Hi everyone.
My 92-year-old father has just been diagnosed with chronic leukaemia - I think lymphocytic. Has anyone any experience? The outlook looks a lot better than other formsof the disease, but it’s hard to know what to expect . . . Any wisdom gratefully received.

OP posts:
AnnaMagnani · 03/11/2024 17:30

Has he seen a haematologist and been given a treatment plan?

At 92 he may not need any treatment at all.

MaryGreenhill · 03/11/2024 17:35

My Dad had CMML, he had no treatment. In fact his consultant told us most sufferers of this die from something else. Which is what happened with my Dad sadly.
Wishing your Dad all the best .

blackpear · 03/11/2024 17:40

Thank you both so much. Doctor recommending no treatment..

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EmeraldRoulette · 03/11/2024 19:00

@blackpear I have a wee bit of experience with older rellies and blood disorders

is it the case that he would be unable to withstand the treatment, hence the doctor saying that?

blackpear · 03/11/2024 19:06

I-think the doctor feels that he is so elderly it’s not worth putting him through it. He has been having rib pain, which I now think is connected. Thank you for answering.

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AnnaMagnani · 03/11/2024 19:16

Most people with CLL don't get any treatment TBH. It tends to just be there in the background.

Blueberrycreampie · 03/11/2024 19:22

If I recall DFIL needed a couple of blood transfusions but other than that no meds. He certainly did not die of it!

nether · 03/11/2024 19:48

Whatever age you are, it's quite common (and very disconcerting) to be on watchful wait - ie no treatment - for certain of the slow moving chronic leukaemias, and CLL is one of those.

He'll probably be monitored (periodic blood tests), and treatment may be offered if his condition changes - there are several effective treatments, and they can/will be offered to the elderly (just not necessarily straight away).

They are slow moving, respond well to treatment when it is indicated, and are often a "die with" not a "die of" condition.

EmeraldRoulette · 03/11/2024 19:58

blackpear · 03/11/2024 19:06

I-think the doctor feels that he is so elderly it’s not worth putting him through it. He has been having rib pain, which I now think is connected. Thank you for answering.

I tend to agree and that's based on what I saw of a man mid 80s. You can't know how even a younger person will react.

rib pain - could also be spontaneous fracture if he is frail?

blackpear · 03/11/2024 20:36

Thank you so much, all. This is so helpful.

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Onetwobucklemy · 16/11/2024 02:30

Hi @blackpear

Sorry to hear about your father’s diagnosis. have CLL too and it was a real shock to the system at the time.

This group on Health Unlocked are really helpful and informative.

healthunlocked.com/cllsupport

blackpear · 16/11/2024 12:21

Onetwobucklemy · 16/11/2024 02:30

Hi @blackpear

Sorry to hear about your father’s diagnosis. have CLL too and it was a real shock to the system at the time.

This group on Health Unlocked are really helpful and informative.

healthunlocked.com/cllsupport

Thank you so much; that is really helpful and kind. I hope you are doing well x

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FiveFoxes · 16/11/2024 12:50

My Mum has CLL. She was diagnosed nearly 10 years ago, in her 70s, after catching Pneumonia. She did have a blood transfusion and chemotherapy, however they said she had probably had it for years before and not known. It's not a cancer that can be cured, just treated if necessary.

Since then, she has had 6 monthly appointments (phone and face to face) with the consultant and had her blood checked each time. She has also had a couple of CT scans.

The tests do show that it is edging back, but it's not causing her any symptoms so she's continuing in watch and wait. If she did need treatment, it would be tablets, but even then they might decide the benefits aren't worth the discomfort it would cause and might just treat any symptoms she has instead. CLL isn't usually life limiting.

The only thing to watch out for is that she doesn't get an infection/illness as she is vulnerable so important to get vaccinated.

Having said that, both times I have had Covid, I had unfortunately spent the day before I knew I had it in her company and she didn't catch it!

It sounds very scary, but isn't really. I know how you feel though - leukemia sounds terrifying.

blackpear · 16/11/2024 17:16

That is v reassuring. Thank you so much FiveFoxes

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Miley1967 · 16/11/2024 17:18

In my work with the elderly I come across quite a few older people with this. Most just seem to get monitored with no treatment.

Dontwearmysocks · 16/11/2024 17:24

Parent (78) with this right now. The CLL caused a complication called cold haemaglutinin disease and an acute drop in red blood cell count so rapid treatment was needed. After many blood transfusions things improving with a course of IV immunotherapy.

had it not been for the complication we wouldn’t have known about the CLL at all most likely..

ongoing plan is lots of monitoring, transfusions periodically and possibly more immunotherapy if rbc doesn’t stabilise. If that doesn’t do the trick they’ll opt for chemo.

all the best, it’s a scary diagnosis but from what I can gather, one which responds well to treatment xx

blackpear · 16/11/2024 23:48

Thanks, both - this is v reassuring. He seems to be doing pretty well. He’s taken himself off on holiday!

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Dontwearmysocks · 17/11/2024 10:09

@blackpear good for him I hope he has a ball! X

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