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Hello to you all

Hi there to you all, and would just like to say how I admire everyone of you out there for the help that you seem to be able to offer each other.
As a 'newbie' I was pleased to find a forum site like this to not only hopefully find some answers & advice to my questions, but when I am hopefully wiser about CML, I can help others in the same way.
About 2 weeks ago, I went to my regular blood donor session and gave my usual bagfull and since then I have been diagnosed with CML as a result of the blood screening.
I've been lucky that it came to light this way as I had not experienced any symptons of the condition at all, so just like many of you felt, I feel like everything's been turned upside down.
I have tried to keep positive, mainly for my family, but that positivity seems to be running low.
I am 'only 30' and the consultant has said the best option for me would be to go on Glivec, which I began today.I am just waiting to see how they affect me.
My WBC was 20 times above what it should have been and my spleen was just to say enlarged.
My full trust is with the consultant, but I was wondering if anyone out there knows of anyone of anyone whose situation is similar to mine but they had a different method of treatment?

Sorry if this was long winded but I really would appreciate any help or advice.

Bram.

hi bram, sorry to hear of your diagnosis.... but let me assure you that Glivec has completely turned around the prognosis for those of us with CML and represents a new strategy in dealing with life threatening diseases.
i know you must feel pretty low if not devastated... i did too and my first instinct was to protect my family, but this instinct takes is toll and really in the end you have to allow your family to find their own inner strength and allow them to deal with your diagnosis.
this may involve a lot of heartache and grieving for the loss of the idea of perfect health! but it is amazing how strong people are and with time you will all learn to cope and live life with the confidence that you do have a future.

there are quite a few members here who are in or around their 30's.... i am sure you will find a lot of support and comfort here.
do as much reading as you can and learn about how this disease 'works'... then you will understand the way the TKI -tyrosine kinase inhibitors - drugs like glivec/sprycel/tasigna work.
at which hospital/clinic are you being treated?
best wishes,
sandy C ;o)

Thanks for your reply, and it makes sense what you say about my family.
I am being treated from Darlington Memorial Hopsital in County Durham. The consultant seems very good.
Just need to get my head sorted and then look to the future.
Thanks again.
Bram.

Hi bram,im 30 in june i was diagnosed in oct 03 at the age of 26 and have been on glivec since,this support group is great even though i dont post very often i read whats going on everyday,if you would like a chat my email is kathy.prudence@homecall.co.uk
take care love kathy

Hi Bram,

Welcome to the site, sorry you had to join us. I'm 25 now and was diagnosed 19 months ago, I also had a large spleen and WBC around 330. I didn't take Glivec, I went straight for a stem cell transplant as my brother was a perfect bone marrow match and things have gone very well since. A transplant is the only known cure for CML so I decided to go for it. life is better than before CML and I appreciate it more than ever.

You've definately come to the right place to have your questions answered there are many knowledgable people on here such as Sandy, Elizabeth and Anjana. I'm still trying to learn, it's a very slow process!

It took me a couple of weeks to get my head around things and accept the diagnosis. My first instinct was also to protect my family and keep a brave face for them.

Take care and feel free to ask me any questions about my experience,
Martyn

Please sponsor me!

it's good that you are so near one of the CML expert clinician's dr. steve o'brien at RVI newcastle. keep in touch and remember that CML is NOT a death sentence. you are not alone, we are all in the same boat and will try to help if you need it.

sandy C ;o)

Hi Bram,
I look after a 13 year old with CML - his diagnosis last August felt devastating to us all and he was also feeling poorly and very tired. Within a few weeks he was setttled onto Glivec and has virtually no side-effects now, just occasional stomach cramps which are easily treatable. You would never think that he had CML - he is as energetic as most 13 year olds - bike-riding, playing football, swimming and going out with his mates. Adjustment to the shock takes a bit of doing, but it IS possible to lead a 'normal' life even tho you don't know for sure what the future holds - but then, nor do people without CML! I log onto this site every day, tho only post occasionally. The site is a real connection to others in similar situations and I think it helps to keep me sane!
Wishing you all the very best,
Kestrel

Hi Bram, sorry to hear of your diagnosis, at first it all seems very daunting but through this website, you will meet a lot of friends who understand what you're going through and will offer you as much support as you could wish for. My hubby was diagnosed in August 2004 at the age of 39, in fact he'll be 42 tomorrow. He works as a double glazier and his job is very taxing and tiring but he has continued to work throughout. He went on Glivec within 3 months of diagnosis and his blood counts stablised within 6 months. At the moment they have risen a little and his dose has been increased but he's still working and living a completely normal life. What I'm trying to say is that you're not alone and if you're ever down about CML, just Log on to the website with your worries and you'll always have like minded people with experiences to share and advice to take on board. Take care RACHEL and GARY.

Hi Bram, I am in east Durham , diagnosed in June 2005 at age 36 I am currently doing extremely well on Glivec as I am sure you will too. I would advise that you ask for a referall to Dr Steven O'Brien at Newcastle as he is one of the top CML experts in the world. I am currently treated locally at Hartlepool hospital where I have quartely outpatient appointments with a haematology consultant and annually with Dr O' Brien. Glivec truly is a revolution in the treatment of CML and I am sure you will have a very good response with it. I have a 100 % sibling match doner , but my response to Glivec has been so good that Dr O'Brien has advised me that I do not need to look down that route. It does get a little easier with time, I was told this by everyone on here when I first logged on to this site and could barely bring myself to look at my computer screen, and they were right.

my e-mail address is arrowsc@msn.com if would like to chat or need any info.

Craig A

Welcome to the site nobody wants to join. I was DX Aug 2004 and went straight onto Glivec. Its an emotional roller coaster but be positive and all will be well.

Its early days but for your information every year there is an annual seminar for patients and carers. This year it is likely to be in Glasgow in Sept/Oct. Some of the worlds leading consultants give talks on current medications and also on any new medications and treatments in the pipeline and would be very useful to you and anyone else new to CML to attend. Last year for the first time we had a social gathering the night before so that everyone could meet and chat informally about everything.

Watch this space for more details later on in the year.

Good Luck and as others have said go and see Steve in Newcastle. One of the best in the world.

Good Luck.

Steven D.

Thanks to you all for the overwhelming response. I might be contacting some of you for some more info on points raised so brace yourselves ;-)

Hi Bram, Was devastated by your news. We have a mutual friend in John D.
I also have been touched by CML and although I can't for one minute know how you are feeling,I do know how your family must be feeling.
Sound advice from folks who said to see Steven O'Brien.
Please feel free to email me dragonfly25@btinternet.com

Hi Bram im the lad that kestrel is looking after.Dont worry i felt awful at the time but taking glivec becomes part of your life as you take it on a daily routine.
I am 13 years old and i have been taking glivec for about 7 months and i was diagnosed 8 months ago.How long were you in hospital for when you were diagnosed?
Speak to you soon Rio :>