I have been diagnosed with my Chronic lymphocytic leukaemia ('CLL') at 50 very worried and can’t eat or sleep because under 55 you have umuted Chronic lymphocytic leukaemia ('CLL') which is more aggressive I have children I don’t want to die this young
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Hi @Gary4 and welcome to the forum.
I’m sorry to hear about your diagnosis. It will have come as a shock and not surprised you are concerned.
My diagnosis was with a different cancer.
What I would say that it’s important to ask lots of questions of your Haematology Team as everyone with blood cancer is different.
I’d also suggest that when reading up about your condition you rely on trusted sources. Google is very generic so be careful if you use.
Here are a few links you might find helpful
I would also encourage you to reach out to the @BloodCancerUK-SupportTeam and the wonderful nurses who can offer medical advice.
With it being the late August Bank Holiday in England it will be tomorrow before you can speak to someone. You can however email or call and leave a message
Her is a link with all the information on how to contact
I hope that helps and do take care
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Hi Duncan thanks very much for the help I will look into them there is lots off sites but most are scary saying I might only live 5 years do people with Chronic lymphocytic leukaemia ('CLL') only live 5 years
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No problem @Gary4
Important to keep in mind that anything you read about life expectancy is generic and averages.
Your own Consultant will be able to give a much clearer indication for you personally.
I just had a take one step at a time focus on what I can influence and let go off what I couldn’t control.
Sometimes the mental challenge is as hard if not harder than the physical challenge
Keep sharing concerns.
You will find everyone on the forum really supportive as they all understand what life is like living with blood cancer.
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Dear @Gary4 please don’t assume the worst. I know it’s such a blow and right now you’re probably trying to process it all.
When you get news like this it’s hard to avoid the prognostic data, I have multiple myeloma and there are stats like 60% survive 5 years. I was diagnosed at 50 with two teenage boys and thought exactly the same as you.
However these data points are generic. They are not your data points. You are very young to get this diagnosis and your age along with general levels of fitness will play into how you respond to treatment. The stats are better for Chronic lymphocytic leukaemia ('CLL') with 88% lasting over 5 years, so it absolutely does not mean you only have 5 years.
Have a chat with the amazing @BloodCancerUK_Nurses and @BloodCancerUK-SupportTeam they will help you process what this means for you along with your clinical team.
We’re also all here to support you xx
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Thanks spangleystar I’m very grateful for your insight my family are devastated my partner is worried she had to come home from work as she was crying my mum is very ill and I can see the fear in her eyes for me but I was a former professional kickboxer ill fight until I’ve nothing left at 50 I wasn’t expecting this I pray I get to see my children grow up
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I’ve heard the treatment for Chronic lymphocytic leukaemia ('CLL') has got great results I pray the treatment helps me I see my hemotogist on the 8 sep
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If you don’t mind me asking I know it’s rude to ask a woman but what age are you now after diagnosis thanks
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Hello @Gary4 my heart goes out to you. However I am pleased you have found this forum so soon after your diagnosis. It is quite understandable that you and your loved ones are in shock and have so many emotions at this time. As others have said I trust you will find this a supportive place. Only those of us living with blood cancer can really understand what it feels like. It can be a lonely and isolating place at times. Be gentle with yourself.
I live with a different blood cancer to you and I was diagnosed in my early thirties and have lived almost half my life with it. I won’t pretend it has been easy but I am still here. There is hope and a lot more is known about these blood cancers these days and new more targeted medication is becoming available all the time.
One of my regrets is that I wish I had accessed mental health support much sooner than I did as it has been a great help to me in processing everything. But it wasn’t really talked about when I was diagnosed in 1992. Thinking of you and your family. Willow x
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It’s not rude, you’re ok 
I’m 51 - it’s been quite the year. I had radiotherapy, 4 rounds of induction chemo and a stem cell transplant. I am in remission now and starting on maintenance treatment this week.
Sorry to hear your mum is ill too, you’re properly in the thick of it all and the emotional rollercoaster lasts for a little while, feel however you feel. There’s no right or wrong, but just know these doctors are so so smart and treatments are constantly advancing, you will be well looked after. Years ago blood cancer patients were told not to start a long book, now there are people living 30+ years. There’s some incredible people on this forum that are evidence of that too. It’s hard right now but you’re clearly not one for defeat and focusing on the positive is the best thing you can do for you and yours xx
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Thank you so much I really appreciate it I am going to see my hemotogist on the 8th so I’ll ask about seeing a counselor for help as my anxiety is through the roof
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My God you have been through it but you’re a fighter I see well done your in remission the thought off the treatment is scary but I’m waiting to see what my genetic types are to see what treatment or if I’ll be put on watch and wait which I don’t understand if you have cancer you should treat it right away but with Chronic lymphocytic leukaemia ('CLL') they say watch and wait until you have symptoms I hope you stay in remission for a long time God bless x
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Hi @Gary4 I am so glad that you have found us, I remember when I was diagnosed with Chronic lymphocytic leukaemia ('CLL') at 53 yrs feeling similar things to you and although the internet did not have as much information then reading the 5yrs life expectancy. I came home from the hospital and wrote my will and funeral music. That was 22 yrs ago and I have been on active monitoring (Watch and wait) ever since.
I manage my symptoms, mainly fatigue, and I am fitter now than I have ever been and walk a lot, go to Pilates and a dance class every week.My 70th birthday was my best birthday ever.
Personally I would say give yourself time, really look after yourself, eating and sleeping are so important for your for your physical and mental health, and just try, and I know this is not easy, to take it a day at a time.
@DuncanB has given you the details of the Blood Cancer UK support line in you need it, We are all different in the way our Chronic lymphocytic leukaemia ('CLL') and our bodies.
Take lots of care and we are here for you.
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Thanks Erica I feel the same I said to my partner what I wanted at my funeral my music and things and she went mad at me your not dead yet you have years left but when you hear you have Chronic lymphocytic leukaemia ('CLL') it’s hard to think off a future may I ask did you have immature or mature Chronic lymphocytic leukaemia ('CLL') because I read at under 55 it’s more likely you have immature Chronic lymphocytic leukaemia ('CLL') which is more aggressive thanks
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Hi @Gary4 when I was diagnosed the test methods were far less sophisticated, so the answer is ‘I have no idea’ !!!
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Yes I understand thanks
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Whilst awaiting my bone marrow biopsy results to finalise my diagnosis- I was told that they ‘may not treat’ me, totally threw me into a tailspin, I was in so much pain with my back and hip bone lesions I was struggling to walk, how could they not treat me. I was told ‘because once you start treatment you can never come off it’ and also ‘because treatment could be tougher on your body right now than the cancer’
All of these messages went down very badly with me at the time. As time has gone on I know them to be true. Active monitoring is exactly that, you won’t be left in a situation where it’s gone too far to treat and you can live your life without weekly hospital visits - you will need to keep your spirits up and anxiety at bay of course, but it really is the least worst option to hope for right now xx @Gary4
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Oh my lil 
I didn’t know they had said that to you! How scary that must have been! How could they even contemplate not treating? I know when I first got diagnosed they said they were having a MDT meeting, and I asked ‘ is that to discuss if I’m worth treating’ and that was upsetting enough for the seconds before I got an answer, I couldn’t contemplate them saying that to me x @Spangleystar
So sorry you have had to find us @Gary4 but you will find amazing support on here, we have all been at the beginning of diagnosis at some point, and know exactly how you are feeling, for some of us it was years ago, others like and me started on this Nov/dec last year, so still only newbies ourselves
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Hi @Gary4
Watch and wait is a good thing as you will be monitored
I can understand the anxiety
You can ask your consultant to refer you for some counselling
I was diagnosed at 49 with myeloma and I thought I wasn’t going to see my kids reach 18/21
All these thoughts are normal but try not to let them consume you.
Write down your questions for your appointment
I’m now 58
I always say until I’m told there’s nothing more that can be done for me there is always living
Copied from lymphoma action
Outlook
Chronic lymphocytic leukaemia ('CLL')/Small lymphocytic lymphoma ('SLL') usually grows very slowly and there are lots of effective treatment options. Treatment generally aims to keep the lymphoma under control rather than curing it.
Most people live with Chronic lymphocytic leukaemia ('CLL')/Small lymphocytic lymphoma ('SLL') for many years, with some periods when they need treatment, and other periods when they do not. It is hard to predict how long it might be before you start treatment.
Active monitoring (watch and wait)
Most people don’t have any symptoms when they are first diagnosed with Chronic lymphocytic leukaemia ('CLL')/Small lymphocytic lymphoma ('SLL'). If the Chronic lymphocytic leukaemia ('CLL')/Small lymphocytic lymphoma ('SLL') is not causing problems, you do not need treatment straight away. Instead, your medical team monitors you regularly until you need treatment. This is called active monitoring or watch and wait.
It can be difficult to hear that you have cancer but are not starting treatment. However, research shows that there is no benefit to starting treatment before you need it. While you are well, you can avoid the side effects of treatment for as long as possible. Treatment is still available when you need it.
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Thanks has anyone had ricters syndrome it seems very scary
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