Hi Penny,
Thanks for replying. In reading some of the notes I've received, I have
learned just how lucky I amso many people on this board have had a much
harder row to hoe. It is also sounds like many people who find Gleevec no
longer works are switched to sprycel and do very well. If sprycel isn't the
drug for you (but I pray it is), one of the other ones will be. Sounds like
the drugs are different enough that where one fails, another succeeds. My
thoughts and prayers are with you. Please keep in touch and let me know how
you are doing.
Best wishes,
Mylissa
From: Penny boogie_woo...@yahoo.com
To: cmlhope@googlegroups.com
Sent: Thursday, March 14, 2013 10:33:30 PM
Subject: [CMLHope] Re: Thankyou
Hi,
I am Pennydiag. 2002 my story is very close to yours. This year Gleevec
stopped working for me and
I am back to being extremely tired. My onc has put me on Sprycel we shall see
how that works.
I hope you have continued success with Gleevec.
On Sunday, March 10, 2013 6:42:53 PM UTC-6, myli...@yahoo.ca wrote:
Hi there,
I want to thank everyone for all the kind responses and helpful suggestions.
I can't tell you how much it means to hear that there is a light at the end of
the tunnel, I just need to be patient to get there. I will absolutely try the
dial soap trick and the tonic water to help with the cramps. For cramps
through the day, would it work to carry it in my pocket?
Marty, my name is Mylissa...didn't mean to be a mystery person - lol. I live
in Markham, Ontario, Canada. I am so glad I found this group...I don't know
anyone else with CML and my onc is not open to a lot of questions and has told
me not to research CML on the internet. Think he's trying to keep me from
getting scared. So it means a lot to hear from all of you. It's reassuring
to know that what I am going through is part of the experience and not some
new added problem.
Have to say, this has been a frightening experience but things are beginning
to look up, with white cells normal now. I just had cytogenetic testing done
last Tuesday and should have the results back from that by the end of March.
In the meantime, in speaking to the onc about the bone pain, he thought I
should try one week at 200mg, and then try 300mg to see if I tolerate that
better. I sure hope so - one of the reasons I wouldn't want to change from
Gleevec is that the patent expires in April 2013 in Canada.which will
hopefully make it more affordable. This is a big issue for me, as I was
recently terminated at work, while I've been off on sick leave - so no more
benefits once the notice period is over. I'm sure that I will be denied
benefits at any new job I get as this will then be a pre-existing condition.
So affordable meds would definitely be good! I never knew medication could
be so expensive! I keep telling myself I am not
allowed to throw up, because it would be like throwing up $130...lol.
Thanks again to all who replied. Pat and Michele - I will have a read through
the links you sent me tonight; thanks for the info.
18's back to you Marty.
Mylissa--
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