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#1 eithne01


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Posted 06 October 2012 - 02:08 PM

Hi again everyhone

as always hope you guys are all doing well.  NOw things seem to be getting a little shakier by the mimiute.  I would really love

to know if anyone has come off treatment for three to six months without adverse effects.  my vascular consultant has told me my graft

isn't healing and wants me off Glivec fo r a while. He's adamant its causing the problem with my leg. ive already hed two bypases and

i can't face anyt more surgery.  I have come off my treatment as the alternative  (selfish as it is of me) is not an option for me.  I dont get

to talk to my new oncologist till monday as I didnt get away in time to call on him.  I'm going to ask for BCR-ABL monthly if it could help..

My head is all over the place

#2 Susan61


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Posted 06 October 2012 - 02:24 PM

Hi:  I can see your getting yourself upset.  See what your new Oncologist has to say.  When I was diagnosed with CML, and it was before we had the TKI drugs available to us.  I was on the original treatment they used back in 1998 which was shots of Interferon everyday, plus I was doing another drug in addition to the Interferon.  Anyhow, It was ruining my liver.  I had to come off of that treatment, and there was nothing else available to me.  I was put on Hydrea for about 6 months until I could get into the Clinical Trial for the Gleevec.  I did not progress with my disease.  The Hydrea kept me intact until we could get me started on the Gleevec.  Talk to your Oncologist, and see what other plan they can do for you until your graft starts to heal better.

I know exactly what it feels like to have your head all over the place as you say.  Try to calm down till you see your doctor.  There may be no need to get yourself into such a state of mind.  I wish you the best, and let us know how this works out for you too.


#3 eithne01


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Posted 06 October 2012 - 03:56 PM

Thanks Susan

I am all over the place. I'm spending six hours per day on a machine called Art Assist, i dunno if you guys heard of it?  That machine is for th e circulation in my right leg which isn't as bad as my left one, god., I can't believe all this is happening so fast.Im so glad everything worked out ffor you.I will hopefully see my new onc on monday. ive only met him once and he seems to be very approchable, time will tell!!!! lol.

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