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Welcome Marilu- new discussion thread - reposted from below

Feeling scared! just diagnosed with CML

Submitted by marilu on Thu, 22/03/2012 - 10:26.

Will be starting 2nd generation drug next Tues, so much to absorb.

Hi, Marilu I was just

Submitted by RodM on Thu, 22/03/2012 - 11:05.

Hi, Marilu,

I was just diagnosed on 6th Feb, so in a  very similar position. The good news is that the more you learn the better things look. I also started 2nd Generation TKI (Dasatinib) on 16th Feb, and already my white count was down from 145 to about 6 in 28 days.The symptoms of CML have largely disappeared (sweats, cough, fatigue), and the drug side-effects are really minimal.

Once one gets one's head around the fact that you're far more likely to do well than otherwise, I have become very thankful that out of all the possible cancer illnesses I could have contracted, I got the one that seems most treatable and for which a cure is on the 10 year horizon, with a high likelihood that I'll be around to benefit from it!

This forum is a great place for information and support, it does what it says on the tin...

Rod

 

Just to say hi and completely understand your fear especially for the first few weeks as it is a worrying time initally. Give yourself  of time to adjust and you will feel better about it soon. I'm fairly new ( coming into my 6th month) and doing fine. Anything you need to know is on here thanks to Sandy and co, I have found it invaluable. They're a lovely bunch on here- some have been members for years and some of us are newbies. Well done on your counts Rod too .Best wishes Jo ; )

Thanks Rod
I started the treatment and after 7 days had to stop due to pancreas problems, now back on since yesterday after a week off.
I feel less scared now- this site is really good. There are so many positive stories been told.
How does one deal with family that trivialise this condition as they can't see it - it's annoying as I have to spend lots of energy trying to convince them that I am ill.

cheers and thanks again
marilu

Not feeling so scared and very determined not to allow the illness to develop into acute - I met a lady at the hospital yesterday who has acute myeloid and she is STRUGGLING- in and out on chemo treatments and not winning. I wish her well.
How long have you had the condition?
cheers
marilu

Glad to hear you're feeling better and back on the meds. I'm no expert but from what I have read in some of Sandy's responses on here I think acute is different from advanced cml - more knowledgeable members will fill you in about that. My partner knows of a young man throught work who also was dx with acute last xmas but thankfully chemo has brought it under control so they have now stalled on the idea of a bmt. He is subsquently dealing with testic. cancer also but I hear that can be v treatable. As for how long have I had cml? the docs think I had it for some months before I was dx in Oct 11 as my white counts were nearly 300. I think a good 9 months to a year probably. Fortunately once on the Glivec everything improved. Take care for now and let us know how you get on Jo ; )