new Submitted by Bmckenna on Sat, 08/08/2015 - 06:21. Hi! I just read marilus comment . I'm newly diagnosed with CML . Found out when I went to hospital with bad side pain. I don't feel sick other than being really tired and nauseous plus I'm short of breath. Is this common? . I haven't started treatment yet, but am a bit nervous. Any info about treatment with sprycel would be greatly appreciated. I am. 54 years you g and have 6 kids and. 9 grand kids!! I want to be around a while.
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Newly diagnosed cml- reposted from out of date thread below
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My mum was diagnosed with CML on Wednesday, we're just waiting for a blood test to confirm she has the chromosome but they're 90% certain from the cells. My mum is 49 and has 2 children and 2 Grandchildren. She was diagnosed after abdominal pain and bloody urine in hospital. She's feeling very tired and suffering with bad headaches and bruising oh and constant hot flushes but is otherwise ok. All being well my mum will be starting Imatinib on Wednesday.
What is sprycel? Is it a TKI? I'm afraid I don't have any advice but I wanted you to know you're not alone. Xx
Hi,
There seem to be two diagnosis comments on this thread, so I will try to reply to both of them.
Sprycel is a TKI. It's the one I take. It's also known by the name dasatinib, which is the chemical name. Sprycel is the brand name. Other TKIs are available, and they are all excellent. Some people have trouble with one or another one due to side effects, but we are lucky that there are several to choose from so people usually find one works well for them.
Being tired, short of breath and sore in your side (probably your left) is pretty common. You also have a lot to take in mentally, so the first few weeks and months can be a bit of a whirlwind.
CML, for the vast majority of us, can be controlled really well and most of us can live a normal life span. It might not be great to get CML, but timing is good - 15 years ago the prognosis would have been very different.
Being 54 is about the median age for diagnosis I think. Your kids and grandkids will be able to see you for a very long time yet - the vast majority of CML patients do really well these days, so though it's a hard time for you now there are things to be positive about, in a way.
David.
Hi Kimberley
I've been taking imatinib for nearly 6 years now. I was 66 when I was diagnosed, and, like your mum, have grandchildren and want to see them grow up. So far, I'm managing that, and hope to go on for some years yet!
At first it all seems too much to take in, especially because some of the language used to explain the disease is fairly technical (and for the numerically challenged it is even more difficult). However, as the months pass and the test figures improve, one begins to relax. Please tell your mother that the side effects of imatinib may seem overwhelming at first, but they do get better as your body gets used to it. It is an amazing drug and we are so lucky to have it.
Hi David, Kimberly and Olivia,
I'm still trying to figure out how to find my comments and peoples replies. Lol! I just saw your replies and wanted to say thanks!!! I have so many questions and comments! I've been on sprycel for 3 weeks. At first it was fine. But now I'm getting more nauseous and I'm getting more pain! I don't understand why?! How long does this last? Also, do any of you have to take pain meds? I feel like a sissy after tAlking to a family member aged 75 who was diagnosed and has been on the meds five years with no problems.!! I've had two mris on my cervical and thoracic spine. I have signs of cml in my T1 and my cervical spine MRI results say that it is entirely diseased and I have nerve impingement. I also notice I'm beginning to have more pain now than before I started the chemo. My forearms hurt and my knees in front and toward center of my body too. Can you please share your experiences with me? Am I just weak?
Don't be alarmed by stories of what WILL happen and how you WILL feel. Frankly it's the reason I never joined support groups. I strongly believe attitudue is infectious and you can think yourself ill if you try hard.
Everyone's experience is not the same and having lived with CML for over 20 years I'd say take it as it comes and if anything ascertain how others manage specific side effects and contraindications once you're certain that's what you're talking about.
I've never had any significant problem whatsoever from side effects of Imatanib. I've been on it since clinical trial and about 15 years. Indeed it's because of my experience on it that when I achieved MMR after just a few months that both my consultants and I were a bit flumoxed about "what now". We had a conversation along the lines of me being in the land where no one had been before and do I come off, reduce dose or what and also "what would happen IF I came off". Would I be ill again? The conclusion was "the medication is working. It's not got any debilitating or life affecting side effects, the drug's funding was provided (by Leukaemia Research in those days) and it was "just taking tablets at home" so stay on.
Though I have just completed my first year on the DESTINY trial. So far, so good.
You talk about pain in the side, breathless, tired and bruising etc. When first diagnosed that's all fairly standard clinical signs. Caused by things like enlarged spleen, things going wrong with your platelet and haemoglobin cells: anaemia causes shortness of breath and extreme tiredness , platelet problems cause bruising. Put all that on top of "worrying time" and there's no wonder that you're nervous and just generally feeling pretty rotten.
As you progress on to your treatment your Consultant will start to help you get on top of these symptoms and then you can carry on with living and enjoying your life and grandchildren.