I am 45 yrs old and a month ago got ill. Was diagnosed as mono but wbc were 29,000 and after a few days of testing went up to 35,000. Hematologist study showed cml. They have started me on sprycel once a day 100mg. Only problems I have had is bad headache and tired. Nervous and sometimes worry my days are numbered. I read this is a normal feeling when one gets cancer and will subside. My doc says I should live a normal life and was caught very early. Any one who can tell me their story and good or bass would be appreciated. Have two young girls and just wanna see them grow and get married. Know we are never guaranteed tomorrow but easy to get caught up in worry. Thanks to all and God bless!
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Hello recently diagnosed
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Hello
I'm glad you have found this site, and hope it helps you as much as it helped me (and continues to help). I was diagnosed nearly 6 years ago - and I'm still here, enjoying seeing my grandchildren grow up! There are, of course, some rocky patches, days when you may feel it's not worth getting out of bed, days when everything seems to ache - but they certainly do get fewer as time goes on.
Most days, I count myself as one of the lucky ones: cml is treatable now, whereas 20 or more years ago it wasn't; we don't have to have chemo and lose our hair; we don't have a restricted diet (apart from grapefruit and a few other things, we can eat and drink more or less whatever we choose); we don't have any disfigurement. All good things, in my book. Of course it takes time to come to terms with having cml, but take it as easy as you can, be good to yourself and trust in the sprycel to do its work.
I wish you all the best
Olivia
And I'm one of the rare ones.... diagnosed in the "olden days" when treatment options were severely limited. 21 years ago! Believe me the first 7 years were hell! And it wasn't "little" things like "losing hair". If only! I was in real danger of losing my life!
But I'm here to tell the tale. :) Thanks to the work of Leukaemia Research and the development of TKI's. Which thankfully I went on in clinical trial way back about 15 years ago. Life is now great and I'm on another trial and the very very last month to come off TKI's. It's all looking good :) In fact marvellous.
You talked about your feelings: I'm a Yorkshire horse trainer with little emotional intelligence ;) Northern, male and stoic! I well remember reading a pamphlet when I was in an intensive care unit 21 years ago it said something like "when faced with the news you have cancer you'll run a gambit of feelings, anger, bitterness, worry, fear, shock blah blah blah" My grounded partner said "Right we're ok then because we had all those yesterday" and my daughter then said "yep, it's time to concentrate of something else".
I chose to focus on living and all the things I was too busy doing and enjoying. I know it's easier said than done but as my partner often says "You can change how you feel in a heartbeat. Choose something different. "
You've said you want stories from other people. I chose precisely the opposite. I chose NOT to know about the troubles and woes of others and every time I was told at what stage I'd be likely to die or be seriously ill, I'd throw it back and say "well you never know I just might bloody well live" .... and I stress again.... this was in the olden days before there were the REAL treatment options that there are now. Even in those days it seems just common sense to me that someone somewhere had to break the rules and survive.
That happened to me and I'm delighted to have paved the way. Believe me when I say I know I've been lucky. I'm the only person who started treatment when I did at my specialist centre that's still here.
I also happen to believe that attitude is infectious. Surround yourself with positive supportive people. Dwell on the positive things in your life. Your lovely daughters - I've got 2. My eldest has to pull her wedding forward for fear of me either being dead of seriously ill in a bone marrow transplant unit. But hey.... we had a great day and I've now got 4 fabulous grandchildren.
I know you'll be overwhelmed with the diagnosis but you've a choice you can live with cancer and frankly I've never minded that. I've never wanted to have it define me and rule and run my life though. There's been times where that's been difficult and particularly in those "dark early years" and when no matter how determined I was I was stuck in hospital for months but heck now I'm just popping some pills and getting on with living life to the full. What's the problem. It's no big deal. I have leukaemia So what!
All the best and I hope you find a way through what you're feeling now and can quickly get yourself back on track with your lovely daughters.
Hi, welcome to this forum where you will find lots of support from people who, like you, are being treated with TKI therapy. I am sure it will take a while for you to come to terms with your diagnosis but....things will get better and you will learn that it is possible to be diagnosed with CML and live a good life. It will take some time to get used to how your treatment effects your body- everyone is different in how they tolerate this kind of therapy, but for the vast majority of patients treated with TKIs, this disease is no longer life-threatening. As you go along you will have questions, please do not hesitate to ask for advice on this forum.
Best wishes,
Sandy