Hi guys, I just wanted to say hello. Dx 8th March and on Glivec for one wek. Needless to say I am a bit daunted by it all. Got out of hospital and caught a bad chest infection straight away so I don't know wether the tiredness and aches are due to that or the medication. I really have no idea of what is in front of me and am obviously nervous about it all but I'll take it as it comes.
Regards for now
Don
Just wanted to say welcome to the club. I'm fairly new too Dx Oct 11 and doing fine, you will find most people are and they're doing great long term, there's lots of positive news which people will fill you in on here. Although it is all worrying in the early days, I completely understand where you are at. You've come to the right site and promptly as you will find it of great help. Sandy and co have done a great job of providing all the information you need to know so take your time to absorb the videos are great source. I'm also on the Glivec and have to say I haven't had many gripes about it ,the odd hand or foot cramp and mild nausea/tiredness in the early days half hr after taking it but nothing really now. You will find everyone gets some sort of side effect to some degree or other but they seem to get easier with time for most and there's great tips on here as to how people manage them. I think I ended up with a bout of cold/flu/cough within a couple of weeks of dx - think it was all strain in the beginning. Take care of yourself and feel free to ask questions on here - we're a lovely bunch ; )))
Hey Don,
I was diagnosed back in March 2009. I've been on Glivec for 3 years now and have been in CMR for the last 2 years. Yes the pills will make you feel knackered at the start. For the first two weeks i barely left the house. Just a two minute walk to the shops felt like i'd ran a marathon. I'd read online that it could take up to two months for the body to adjust to the pills so i took that time off work. Luckily for me they were very accommodating. I found that taking the pills after dinner worked best for me. At the start i could feel when they kicked in. After a few months i didn't notice it anymore.
Yes it's all very daunting, but there are lots of people to listen and offer support. I only found this group the other week. I've been in a Facebook one for 2 years which helped me. Don't be afraid to ask anything no matter how silly you make think it sounds. I'm sure we've all discovered new things since starting this journey.
All the best.
Andy
I share your concern Don - I too have no idea what is in front of me -starting the treatment on Tuesday- I thought that my life would be easing into retirement and all I hear these days is - You have to fight it . I did not want to fight anything! but hey the luck of the draw!- I just wonder what caused this to start?
Best of luck to you and all out there.
Marilu
Hi Don,
and welcome to this forum. Hopefully we can be of some support over the next few weeks- at least until you get your head around what has happened to you. We have all 'been there' as the saying goes.
Please do not hesitate to ask questions here as and when you need to. There are many of us who have survived CML over the very long term.... so there is a lot of advice available.
I assume you are being treated with imatinib 400mg?
Best wishes,
Sandy
Hi Marilu,
this is a question that many- if not all- of us have asked ourselves at one time or another, but particularly at diagnosis.
The cause(s) of any leukaemia are known to be from exposure to ionizing radiation- and that's about the only one that is definite.
It is highly likely that exposure to other chemicals could also be a cause- such as benzene etc.- but that is not certain as not everyone that suffers exposure goes on to develop CML.
In my opinion it is not really worth spending too much of your time trying to figure this out- although it is still a subject that even 12 years on from my own diagnosis I sometimes ponder. But I now accept this as an event that happened to me, and I can do nothing to change that.
best wishes,
Sandy
Nice to hear from you Don, and hope that your treatment enables you to get back to a normal way of living as soon as possible.
For me, 2.5 years on Dasatanib, the tiredness comes and goes, but that might be my one year old daughter as well! Keep in touch here and give yourself time to adjust...
Best of luck,
ADJL
Sany, You remind me of this story, which some may know already.
http://en.wikipedia.org/wiki/Sadako_and_the_Thousand_Paper_Cranes
