Hi people,
My name is rio and iv had cml for 8 months and im 13 years old.Kestrel cares for me. Iv decided to log on to this site myself because i wanted to speak to people with the same illness as me.Im have been taking glivec for about 7 months and i have a few side effects which are stomach cramps and sometimes some aches and pains in my legs but acctuly i feel almost 100%.I dont think anyone notices iv got leukaemia/cml.
Rio
You are here
Hi everyone
Hey Rio, welcome - Glad you decided to post. I think you are our first 13 yr old with CML. Glad you are doing great on Glivec and not having too many side effects - I've posted below about the cramps and possible solutions. Glivec is an amazing drug and allows most people to lead normal lives. Do you think it makes you tired ? How do you cope at school ? Take Care and you and Kestrel keep up the good work.
Elizabeth x
Hi Rio
You're the same age as my daughter although it is me with the CML. I'm glad you're feeling good adn I know exactly what you mean. I have friends who know I have a disease but keep forgetting, which is just fine by me. :)
If you'd like me to put you in touch with my 13 year old let me know by mailing me at mariansymons@hotmail.com
Anything you need to ask this is the place to do it.
ATB
Marian
Hi Rio,
Welcome to the site. I thought I was young being diagnosed at 24. You must be far braver than I've ever been! Where are you being treated?
I'm pleased to hear that you are feeling good and hope it remains that way.
Take care,
Martyn
I think glivec makes me feel great and i can play football and do everything with my mates.I cope really well in school and all my friends are very helpful to me.
best of luck Rio
Hi Rio,
I was admitted on the 20th November 2005, after all of the chemo I had my transplant on the 30 November 2005 and was allowed to go home on the 15th December 2005. So all in all I was there 25 boring days, but got home in time to open my christmas presents! I started work again on the 22nd February, about 100 days after my transplant. So you'd get a few months off school!
I bought a laptop to take to hospital for my transplant as well. It's good to watch DVD's and play games because as I said it's very boring.
If you've got any other questions please ask.
Be good!
Martyn
hi rio, welcome to our group and thankyou for your message about my'cure'... i really do hope you too, and as many people as possible, get to say that word someday.
have you seen max horwoods diary on our home page? you have to scroll down a bit to get to the diaries but they are worth reading.
max was 10 when he was diagnosed with CML and has already been through his transplant.
i think he is around 13 now, the same age as you are, so maybe you would have a lot in common. his website address is
he is a lovely boy... i am sure you would find a lot to interest you if you read his story.
glad to see you posting here.
sending you my best wishes,
sandy ;o)
I was wondering how long you were taking glivec for.
ATB Rio
Hi Rio,
I didn't take Glivec at diagnosis. My brothers and sisters were tested for possible bone marrow matches a week after diagnosis, a month or so later I found out my brother was a match so I asked the Dr if I could have a transplant as soon as possible and they agreed. So I had my transplant just 4 months after diagnosis.
I was given Glivec a month after tranplant just to keep any traces of CML that may have been lurking at bay, but the Dr stopped them after a couple of weeks as he said they were too expensive and I didn't really need them. So I didn't really have enough time on them to notice any side effects or anything.
Take care,
Martyn