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Chronic lymphocytic leukaemia - advice

(7 Posts)
washngo Fri 06-Sep-13 18:23:49

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 Fri 06-Sep-13 18:26:23

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 sad
I gather the the Macmillan Cancer Care website is very good for support and advice.
thanks

washngo Fri 06-Sep-13 18:43:58

Thank you tommy

washngo Sat 07-Sep-13 00:03:28

Bump

ImNotCute Sat 14-Sep-13 20:01:19

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 Wed 02-Oct-13 12:48:29

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 Fri 11-Oct-13 10:47:09

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 <hug>

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