jules1982
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Thanks Kris and Percy for your prompt replies. They both answer my question! I will pray that whatever happens, my mum’s tumour continues to grow very very slowly. I like the idea of viewing it as a chronic disease – it takes the sting out of it somehow!
Best wishes,
JulesHi Porter. I just wanted to chime in here and say what a great attitude you have – I love a fighting spirit.
Also, my Mum’s tumour is a similar size to yours (15cm x 9cm), with a few satellites. However, she has recently been told that surgery IS possible if the tumour stays the same size on chemo. I’m not sure whether this is to do with location, a bit of a daring surgeon or what? The surgery in question involves a first operation to grow a portion of the liver (so that there is 20% of “healthy” liver to support the body), and then a second surgery to remove the remaining 80%. I wonder whether this may be possible for you too?
Best wishes,
JulesPs, in general Mum seems very well. She has good energy levels, is eating well and seems very positive. It’s quite remarkable given the extent of the tumours! We are very thankful.
Hello,
We’ve had no shrinkage at all unfortunately. The main tumours and satellites have remained stable so far. The surgeon reckons that he can grow a bit of healthy liver and then cut away 80% of diseased liver. He just wants to check that the tumours stay stable for a bit longer and for mum to complete her course of chemo.
Re your dad, and the attitudes from Sheffield, that’s truly terrible. We’ve encountered negativity like that too. I sometimes wonder whether the medical staff remember that these ‘patients’ are also human beings, mothers, fathers, daughters etc. Hopefully Leeds will be more compassionate with your Dad’s situation. My understanding of palliative care, according to some of the good nurses that we have seen, is that they will never say that “nothing can be done”. There is almost always something that will help make patients more comfortable.
One thing that I have found pretty challenging is that in the US there appear to be far more options with chemo and clinical trials etc. It seems that in the UK, the docs are very limited in the treatments that they can or are willing to offer. Have you found this too?
Jules
Thanks Kris. I think he said that there’s not currently enough healthy liver to do the resection, so he is going to take the part of the liver that is the healthiest, cut out the small tumour in it, then grow more healthy liver tissue, so that there is enough to support mum whilst the rest of her liver regenerates. Would that make sense?
He said that it would take ten days or so for enough healthy tissue to grow, so that he can then get on with the big op! All sounds a bit scary, but we’ll have to put our faith in his hands, if it comes to that!
Oh, also, my Mum has had fibroids for absolutely years. They’re non-cancerous and just seem to sit there, not doing much!
Hi Dan,
Hmmmm, maybe it’s not the steroids then. Curious! I’ve just realised that I didn’t reply to your message a while ago. Sorry about that, I seem to be getting more and more forgetful at the moment. How is your Dad doing? Have his symptoms improved?
We had some good news today – the surgeon has said that if my Mum’s tumours stay stable for another two months on chemo, then he is going to attempt to resect. It’s given us some hope, and we’re thankful for that.
Best wishes to you and your Dad,
JulesHi Gavin, these are great links, thanks. Interesting about the centres offering SIRT, as my Mum is being treated in Newcastle, which I see is the first on the list
Great news!
Jules
Hi Percy,
Thanks for these links and for your fast response. It was actually Dr Khan’s team who felt that the adrenal mass was cancerous, which was obviously very worrying to us as they are such an expert team in CC.
I am going to investigate SIRT, I think there are a few centres in the UK that offer it. I’ve heard very mixed reviews about it and as I understand, there is little research into SIRT for CC?
Happy Thanksgiving to you too.
Jules
Hello, yes, feeling down at times is completely normal. I remember that my mum couldn’t have Cisplatin on her second round of chemo, because her platelets were too low. We all felt very deflated.
All bloods should return to normal if you have a bit of a chemo-break, so enjoy this time.
Hi LadyLinden,
Before my mum started chemo she wasn’t eating very much at all, and like you, she had some acid indigestion and fullness at the beginning of her treatment. In fact, her dose of chemo was reduced due to the indigestion. Around this time she was eating little and often, just to keep her weight and strength up.
However, a few cycles in to chemo, her appetite has returned and she is now eating all foods again (though she is taking it easy on the sugar!). We’re hoping that her increased appetite is a good sign. Our docs have told her throughout, to eat as much as she felt able to , including higher calorie healthy snacks such as nuts, to keep the weight on!
Hope that helps!
Jules
Hello LadyLinden,
I’m not sure that anyone really knows what causes this cancer, although there has been some research on it being caused by liver flukes, which are common in some parts of the world. All I can say is that my mum has ICC and she’s normal weight, not a big fan of sugar, eats a lot of organic veggies, drinks very little alcohol and lives a pretty healthy lifestyle. She did however have an infection a few years ago, of helicobactor pylori, which is a bacterium that I think sometimes causes inflammation in the liver. I believe that inflammation has been linked to cancer. I guess a lot more research still needs to be done.
Jules
