Hello and initial advice
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Nic,
Wishing your mum good results moving forward. Please keep us updated on how she (and you) are doing.
Best wishes,
CatherineExcellent, Nic as a plan is the most important thing one can have. Wishing your Mum great success with the chemo and please do keep us updated as we truly care.
Thank you for your words of support and advice. I’ve been reading this discussion group for a while before posting and have found it a great source of inspiration and knowledge.
The hospital setup is unusual in that even tho our hospital is not a specialist centre they had a MDT with Oxford (a specialist liver centre) to discuss mum’s treatment options (or lack of!).
After some thought she has decided to have the chemo (blood tests allowing). As this is the standard treatment it doesn’t need to be in a sprecialist liver centre. It would appear that trial treatments and SIRT may only be potentially available after chemo has been tried. This is when we’d contact the Oxford specialists.
Best wishes to all.
NicHi Nicg,
Welcome to the site. Sorry to hear about your mum but glad that you have joined us all here as you are in the best place for support and help and will get loads of both from everyone here.
I can’t say too much right now as am in a bit of a rush but wanted to give you some stuff on SIRT in the UK. Yes it can be done under the NHS for ICC but there are some conditions for it being offered and it has been approved by NICE now for ICC, your mums consultant may not know this. Some links for you
https://www.england.nhs.uk/wp-content/uploads/2013/07/b01-psa-sirt.pdf
Where in the UK is your mum being treated and has she thought about a 2nd opinion into treatment options etc?
Ah just noticed that your mums situation has been reviewed by Oxford, I take it by a specialist in CC?
And don’t worry about the duplicate posts, I removed them for you.
My best to you and your mum,
Gavin
Hi, my mom’s tumor (icc) was 4×6 when found. We did 3 cycles of gem cis before moving on to SIRT. We were lucky that the cancer had not spread beyond
Tumor site so now at a year after SIRT,she is still enjoying treatment free life .
Best wishes
CatherineDear Nicg. welcome to our remarkable family and sorry you had to find us. If Mum is using a hospital not really experienced with CC I would see about getting her to a place that is very familiar with this rare and strange Cancer. We have had quite a few Members in the same situation where the Tumor is contained and with proper treatment the tumor was brought down in size and made treatable.
There is a Search button at the top of the page and if you type in SIRT many posts will appear on that subject and may be of help to you.
It is early over the pond here but I am hoping members more familiar with that treatment will respond. Don’t worry about the dupes, it happens all the time and we will make them disappear.
Please do keep us posted on Mum’s progress as we truly care.Apologies. I seem to have posted several times….. Computer kept saying it had failed so I tried again. If any moderator would like to delete my replica posts!
Thanks.
NicfHi
My mum is a relatively spritely 78 year old who’s just been diagnosed with ICC. There is a single tumour of about 6x8cm and no evidence that it’s spread beyond her liver. Amazingly she still feels pretty ok. The consultant doesn’t thinking the tumour is growing particularly fast.
She’s been offered combined chemo though the consultant said he did so with a heavy heart, given the side effects would ruin her current quality of life for some time and it only has a roughly 30% chance of tumour shrinkage.
No other options were put on the table given the size of the tumour. I mentioned SIRT but he didn’t think you could get this on the NHS for ICC and wasn’t sure whether it would be clinically possible anyway. (Our hospital is not a liver specialist hospital though it has already discussd my mum’s case with one that is (Oxford). If they had recommended a specialist treatment she would then have been referred to Oxford for treatment).
Has anyone any experience of someone (ideally of a similar age) having combined chemo – I presume this is Cis/Gem but don’t know for sure? Or anyone have SIRT either on the NHS o privately? Or any other advice?
We’re keen to know you’re experiences.
Thanks.
Nicg
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