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- About footie_and_bill
footie_and_bill
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May 2013
November 2016
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November 2013
on the 21st of november at 7.53pm by beloved husband passed away from this hideous disease . i slept by his bedside in hospital watching him in excrutiating pain. its so not fair and cruel . i want to scream and cry but it wont come . but he was a hero to us ... he went on drug trials not to really help him but to others and he had a donation box at his funeral to donate to gist alliance ... to all that are going thru this journey with gist tumours if you need to talk please message me xx with love jill xxx
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October 2013
unfortunately when diagnosed i was secondary stage 4 as bad as you can get. They had to hit it as hard as possible straight up. I am no longer on glivec i went onto sutent next but now on 7th cycle of regorafenib cheers footie
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October 2013
hello Gabe,
I was diagnosed with metatastic gist exxon 9 in my liver on 13/9/11 and was put on glivec 800 mg for 14 months.i have only found about 10 people with gist in australia in 2 years.i hope you have a good response on glivec it has been the easiest one for me to tolerate.hoping for the best for you footie.
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August 2013
hi all ... just got back from peter mac melbourne today... what to say worst news ever my darling husband of nearly 25 years has only a few months left to live . Its devasting he has fought so hard .. gist is a horrible and lonely cancer as it is so rare... it has spread to his abdomen and new tumours in his liver ... all i want is to spend as much lovely time with him as i can xx
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August 2013
Thankyou Jules2 it is tough and doesnt get any easier after all these months. Your life just seems to be waiting on results week in week out . Ive had 8 pet scans and 13 ct scans and countless blood tests in 23 months. On a different not i hope DUNNC and GISTER that you are both doing well with your treatments. This cancer is so difficult to control . They think they've slowed it then something else happens anyway . All the best to you both and all the best to you Jules2
regards mark
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August 2013
just back home from peter mac ct results showed disease progression again.we have decided to give regorafenib 1 more cycle but things are not looking to flash.its going to be a long 4 weeks till next ct and results.staying strong and positive as best i can. regards mark
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June 2013
hi naomi
you are certainly under the best oncologist in melbourne for gist jayesh is wonderful. I live in albury and also go to melbourne to see jayesh once a month while on regorafenib. I was fortunate enough to tolerate glivec 800mg without too much trouble till disease progression a fourth met in liver. unfortunately when put on sutent 50mg i really struggled with side effects however a scan after two cycles showed a fifth met in liver which is definetly ammune to glivec and sutent. Tips for sutent ... rest and stay at home and good food and quiet time.
hoping all goes well for you next week
regards mark
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June 2013
hello dunnc
i am also seeing a surgeon in melbourne and when i finish my 2nd cycle of regorafenib will be having a ct scan at peter mac on the 2nd of july.i will then find out the results the next morning to see if this drug is working.
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June 2013
hi gister
i was diagnosed with metastic gist exon 9 in september 11 and comenced treatment with glivec 800 mg.i was given an imformation pack from gist alliance.when i was put on sutent 50mg i was given a star program kit both of these have a lot of good info in them .i hope this is some help and i know your frustration this cancer is rare i have not found anyone with it to talk to in australia. best of luck mark .
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June 2013
i understand .. my husband is still alive tho has terminal cancer and i want to vent and winge now but that would be useless .... if you need to talk im here unless they
have been thru it they dont understand xx
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