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Dear Joyce, Thank you so much for your kind words and thoughts. The info you have provided is very interesting! I have picked her up from hospital today and she seemed the best I have seen her in a couple of days. She has been experiencing faintness and weakness for about the past four weeks and from today it seems to be subsiding somewhat.
I mentioned to her that I had been on this site thinking that she would be excited (as once she said she wished she had breast cancer as at least she would have someone to talk to) and unfortunately she didn’t want to talk about it, which makes me frustrated and sad, but I guess like us all she is going through all sorts of emotions. It is such an emotionally draining time for us all. She starts a course of Texitor on Monday which will apparently make her very sick and lose her hair (she has kept her her to date even with all the chemo treatments she has been having).
Anyway we just take one day at a time. Sorry for unloading…….
Maryellen
Hi Maryellen,
I’m not in Australia and I don’t have much helpful info for you, but I noticed that you mentioned your sister has advanced disease and no jaundice, which was something that always puzzled me about my mother’s experience. It turns out that if it’s intra-hepatic (the bile ducts within the liver, instead of the ones outside it), jaundice is usually one of the last signs, instead of one of the first. SO that may be the reason why. I kept asking if she’d have to have a stent in her bile ducts and the docs kept saying “no,” without explanation, so I had to do my own research – the blockage usually comes from the external ducts, thereby creating jaundice, so there’s usually no jaundice until the late stages when it’s the internal bile ducts. My mother also had the ascites in the abdomen (the “triplets,” as we called them) – your sister must feel so much better now that it’s drained!I wish you the best – sorry I have so little to offer! Good luck with the treatment!
– JoyceHi All,
Just wanted to share my experience. My sister (who is only 45) was diagnosed with CC in October 2005. She received sirspheres in November 2005 which have seemed to work fairly well. She has received various chemo treatments, some have worked a little, others haven’t but the big hurdle with chemo is that it knocks the stuffing out of her platelets so she has to stop the chemo! Unfortunately surgeons have told a resection of her liver is impossible as tumour is too extensive and now has gone into her right lobe of her liver as well as having a spot in her lung, sacrum and hip bone. She is now lining up for her first go of Taxotir next week. Has anyone had any experience with this drug with CC? Is there anyone else in Australia that has this disease and can recommend doctors etc? You know the funny thing about this disease is that she has it quite advanced and doesn’t show any signs of jaundice!
The past month her tummy has been growing by the day with ascites and has just spent the past week in hospital having just over 4 litres drained (collectively)!
This we are finding so exhausting emotionally, you hang onto every word the doctor says…..
Anyway would love to hear from anybody who can share the experience.
Maryellen
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