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Friend diagnosed with Chronic Leukaemia

Hi everyone,

A friend of mine who is 27 has recently been diagnosed with chronic leukaemia and has been prescribed Imatinib.
I understand this will not cure him but all I see online is “5 year survival rate” stats which frighten me somewhat! It really has thrown me.
I can’t even begin to imagine how he is feeling but I want to be as supportive as I possibly can be.

I guess I am just looking for some reassurance that this isn’t a death sentence and that at the age of 27 we should still have plenty of years of friendship ahead still.

Thanks in advanced for any replies.

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Hi @Caringfriend2021, your name says it all, your friend is very lucky to have a friend like you.
My personal experience is that I have a chronic leukaemia and I was diagnosed 17 yrs ago at 53 yrs old and I am still here and my 70th birthday was my best birthday ever.
When I was diagnosed I came home and wrote my will and funeral music.
I am really glad that you have found us, a reputable site, and perhaps beware of searching the internet too much.
There is some useful information on the Blood Cancer \UK website and if you need to talk to someone you can contact the Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at support@bloodcancer.org.uk
It is so hard being the friend of someone with blood cancer, I expect you have similar fears, thoughts and feelings as the patient, but you are powerless to make it better for them.
Personally I think all you can do is be there for your friend, keep communication open, ask them how they are and feeling, but don’t keep on and ask what can you do to help. Sometimes help with chores might help or a hot meal, but I would say just let them talk and don’t take their fears, thoughts and feelings away from them and my personal one is don’t say ’ oh, you do look better’ as you do not know how they are feeling inside.
We are here to support both of you, perhaps be kind to yourselves and have the odd treat.
Please let us know how you get on.

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Thank you so much, you’re right, I had been searching the web way too much.
There seems to be a great support network here and I am happy to hear 17 years after diagnosis you are still going strong!
I am hoping he has age on his side and that the Imatinib will slow down any further progress.

Again, thank you so much for your reply and support.

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Hello @Caringfriend2021 a warm welcome to the community. How are you doing today? As Erica said, the support line is here for you if you want to talk things through.
Regarding the statistics - it’s totally understandable that it’s all very overwhelming to read. This page of our website talks through what those general statistics mean. Please do give us a call if you want to talk this through.

Also, here are a few pages which might be helpful for you and your friend

Also thought this might be helpful for you to read through - Living well with blood cancer stories.

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Hi, just to let you know that I to was diagnosed with CML 15 years ago and prescribed Imatinib (was known then as Glivic then), at the age of 50.
Still worked a full week until recently when I retired and am still working 2 days a week to help out. As Erica has stated plenty of information on this site, which I have only joined recently

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Hi @Tony1 I am glad you have found us, welcome, and found the information on the website and our forum.
You have shown the value of the forum by being able to share your experiences.
I was diagnosed 17 yrs ago and when we were both diagnosed there was far less information available and more targeted treatments, less invasive treatments have come on leaps and bounds.
I look forward to hearing more about you.

Tough news for everyone. I have CLL diagnosed 2013 treated 2017 but it’s a treatment not a cure. Like you Dr Google I found is full of confusing and frightening information. So ignore it and rely on what you find in good sites like BCUK. All I want like many of us want is normality. Do just be the same person you was them before they was diagnosed. Keep a watch out for them becoming depressed as I did and intervene if they do to encourage them to seek help, I wish I had as it would have saved me 3 months of blackness. I gave a talk a couple of years ago on my experience so far which might help you understand what your friend is going through. Link here Mel’s Story – From Diagnosis to Clinical Trial Journey - YouTube

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Thanks @Mel and thanks for sharing your story, I will watch it.
I always think personal experiences are so much better than just the written word for me, thanks again.
Yes, Google is best avoided and stick to reputable sites like Blood Cancer UK.
I did find counselling very useful to help me make sense of all the conflicting emotions I had.
Take lots of care
How are you doing now?

Hi Caringfriend

Firstly, I think it is lovely that you have sought this site out to find out about your friend. I felt very lonely when I found out that I had a form of blood cancer and just being there for your friend is fantastic in itself.

I have a chronic form of leukaemia too and made the mistake of looking at the oncology books in Waterstones! However, since then I have learned that there are many people who have lived with a chronic leukaemia for many years and are on and off treatment or may not be treated at all. I’d definitely suggest looking at this site instead or one of the charity sites dedicated to certain types of leukaemia for more information. I’d also recommend listening to webinar sessions from charities too.

Best wishes

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Hi as many have responded Imatinib and the other TKIs have been a lifeline for CML sufferers. I am a long term survivor who did not have an easy journey into remission but enjoy a fit and active life as your friend will too. It is bad luck to be diagnosed so young as the average CML sufferer is somewhat older but on the hopeful side some CML patients respond so well that they can eventually come off imatinib some have to start retaking it after a while some not and some like me have to trundle along on a lower dose. I should be careful trawling the internet and remember everybody’s journey is different so by all means get support from forums but for advice over his own actions or medication he should speak to his Haematologist and Macmillan nurse specialist also some hospitals like mine have a mentoring system whereby newly diagnosed are supported by a longer term patient of a similar age. Before Imatinib (pre 1999) CML was a killer now it can be effectively managed.

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Hi @Caringfriend2021 - as others have said, please don’t panic! No cancer is nice to have, but CLL is one of the less scary ones. I was diagnosed 5 years ago (I’m now 57) and am only just about to start treatment. As my consultant told me originally “you are more likely to die WITH CLL than FROM it!”. It hasn’t stopped me from doing a single thing in my life, apart from having to shield, of course! Hope you can relax somewhat now? x

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I think a lot of blood cancers have similar 5 year survival rates @Caringfriend2021 . My certainly does. I think once you get over the shock, you start thinking about all the positives and things you want to do. I find doctors are generally very gloomy and give you a worst case scenario, but I’ve met many people with my cancer who have gone well beyond the prognosis that they were given. It’s certainly not an exact science and there’s every reason for hope.

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