Chronic lymphocytic leukaemia - advice

[washngo]

Hi, my mum has just been diagnosed with CLL and I am looking for help and advice from anyone with experience or just any knowledge. Currently looks like it is stage A. She is 60. Feeling worried for her and don't know how best to help her or what to say.

[Tommy]

hi - don't know anything but don't want your thread to go unanswered. Sorry abut your mum - my friend's DS has just been diagnosed with the acute version of this
I gather the the Macmillan Cancer Care website is very good for support and advice.

[washngo]

Thank you tommy

[washngo]

Bump

[ImNotCute]

Hi, I'm not a medic but a researcher with some knowledge of CLL. I know it's terrifying to hear your mum has leukaemia but actually CLL is a lot less scary than most other forms of leukaemia. For stage A CLL she probably won't even need any treatment at the moment, they'll just keep a close eye on her and treat her later if it becomes necessary.

My mum has just been diagnosed with cancer too, so I think I can understand how you're feeling. Best wishes.

[scarfaceace]

My MIL has had this for about ten years. She will be 82 this year and is still going strong. She has off days, obviously, but from what I hear, her oncologist thinks she could go on for years.

Hope that helps.

[gussiegrips]

Hi washngo - my mum's got it too. Also had it for an age, about 15 years. And, is fine!

Being newly diagnosed is a scary time - and, you don't know hwo the disease will unfold...but, in all honesty, my mother is a fairly typical example of disease progression.

So, her blood levels are fairly steady, they go up and they come down. She has recently had some extrusions through her skin, so the cancerous cells clump together (usually in the lymph nodes, mind) and come up as small skin tumours. These are easy to spot, quickly whipped out, couple of zaps of radiotherapy, job done.

She is in her mid 60s and does everything she wants to. She is fine. She gets tired, my dad reports that she is grumpy (though, I'm not sure that can be attributed to the CLL, it's perhaps more to do with his inability to put stuff away) and I think she finds times where her energy levels are not as good.

To be honest, we've sort of just absorbed CLL into our family life. It's there, bumbling along in the background, and might be a problem one day - but, that day's not today.

The other thing worth bearing in mind is that research is finding new ways of treating things all the time. So, by the time she did need actual treatment, it might not be as unpleasant a prospect as it seems today - certainly, that's our situation. 10 years ago the chemo was awful, things have really improved, and she still isn't facing that as a treatment.

HTH. PM me anytime. And, whilst no one's looking

[TiredoutMum93]

Hello
My mum has been diagnosed with this recently. She’s only 48. We aren’t sure what stage she’s at but she’s deteriorated but not enough for chemo. She’s not working but has good days and some bad. She’s low on energy and migraines/night sweats etc.
It’s weighing heavy on my mind recently as they have said it could be 1,3 or 5 years. You simply don’t know with CLL. I’m hoping she lives longer much longer as I have a 2 year old and the thought of my mum not being around is torture.
Any advice or good news appreciated. Or bad.

[scottishnames]

OP This charity is very good, has contact with up to date research, and has a helpline you can call.
bloodcancer.org.uk/?utm_campaign=blood-cancer-uk-paid-traffic&utm_source=google&utm_medium=cpc&utm_content=brand&gclid=Cj0KCQiA47GNBhDrARIsAKfZ2rDDFXj_IIagnJ3QKv3E9LzzQUUjekXdd6o950M3WaJKuKuirC7Ng8AaAtlNEALw_wcB

[scottishnames]

The shorter URL for the charity is bloodcancer.org.uk