Re: [CMLHope] Re: Thankyou

2013-03-14 Thread Mylissa
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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Re: [CMLHope] Re: Thankyou

2013-03-10 Thread Mylissa
Thanks Pat - I appreciate it




From: Pat pfemail...@gmail.com
To: CMLHope cmlhope@googlegroups.com 
Sent: Sunday, March 10, 2013 9:00:12 PM
Subject: [CMLHope] Re: Thankyou

Hi Mylissa -
We're all glad to be of help.
Wanted to give you contact info for the CML Society of Canada. The
website is http://cmlsociety.org/ and the toll free number is
1-866-931-5165.
Take care,
Pat

On Mar 10, 5:42 pm, mylis...@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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