I’ve never used a support website before but I thought I would give it a go. My mum was diagnosed with CLL 5 years ago at the age of 43, doctors have said she is one of their youngest CLL patients and she is now on a clinical trial. She’s been through chemo once and clinical trial treatment chemo once which is said to have put her in remission. I have always had quite a positive mindset towards CLL but 5 years later and it’s like it has only just hit me. The realisation that she has now had 2 treatments, she has had pneumonia, many chest infections and just seems to be getting ill all the time. Does anyone know anyone whos had CLL at a relatively younger age? I don’t know if it gives a better prognosis or worse. I can’t really speak to anyone about it as I feel like no one really understands the not knowing
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Doyle12
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Hello doyle12, you are most welcome to join the forum. Lots of friendly folks, many have had treatments for CLL so we understand the worries and concerns. So sorry to hear your mum is having a hard time but there are treatment options and new treatments in the pipeline so try to stay positive, if you have questions or just want to share your worries here, please do, there is always someone with some information that can help
Glad you found us Doyle. So sorry for your Mum’s illness, you are a good son for doing the reasearch, this is the place to learn from the ground up. best wishes to your Mum and you.-bill
I was 43 when I was diagnosed and I am now 60. Mine was found very early and it was a long time before I had chemo 7yrs ago. I had remission for 5 yrs. I will soon need more treatment. The new treatments give us so much hope. There are more drugs on the horizon and your Mum has had a good result. I have introvenus immunaglobulin to help prevent the kind of infections your Mum has had. I live in the uk and the Nhs provide this. This may not be available to everyone. Cll is different for each of us and we cannot predict the outcome but I hope your Mum stays well and we will hope for a cure.
Hi Anne, I think my mum also has that, is that the drip that helps prevent infection? We are also on NHS in the UK. She is on a clinical trial at the moment, are you on the same one?
Welcome, Doyle 12! Just starting treatment, so I don't have much information to share, but I just wanted to send love and prayers from Ohio to you and your mom. Sounds like she is lucky to have you in her corner. There's so much love and hope on this site. I'm sure everyone's arms are around you both.
Hi Doyle, I was 56 when I was diagnosed with CLL...long story short they put me on a drug that is called Ibrutinib (seems to help). I understand it might be a challenge in the UK to get, but look for some trials that use Ibrutinib. I did not start taking the drug until 9 years later when I was 65.
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