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Dear Danielle,
I’m so sorry to hear that you are all suffering so much. You are deeply in my thoughts.
My only advice is to follow your heart and have no regrets and you will do the right thing. He is so lucky to have you by his side.
Wishing you both peace and strength.
WendyHi Gavin, thanks for all of this helpful information, and for providing all the detail about PDT. I guess nothing is as bad when you know what to expect. I will pass this information on at the appropriate time to my mum.
I wish you all the best too and I’m pleased that your dad is doing so well and living his life to the full, and it seems, managing the condition well. I don’t think I appreciate quite how debilitating the jaundice is, and I’m desperately hoping my mum will bounce back when she’s over this and it’s managed with the new stent.
My mum has just been introduced to the macmillan nurses, who I have every confidence will be another pillar of support for her and my dad.
I have been strangely comforted to read several accounts on this website which suggest that cc itself rarely causes much pain even right up to the end stages.
I’m sorry about your parents ongoing house troubles, having been through something similar with flood damage, I empathise with them about the huge inconvenience this causes when you have to move out- water can cause so much damage but hope that it all gets resolved quickly and they can soon enjoy a new kitchen and bathroom in a nice and newly decorated home. It’s a real annoyance isn’t it, especially when you have so much else to bear, but hopefully they can see an end to this in sight which will allow them to just get on with their lives and focussing on being positive.
Do take care,
WendyThank you Lainy, and thank you Tess
You are amazing – you don’t know me from ‘Adam’ and here you both are so generously giving me all this advise and support, giving me such a huge insight into the condition so quickly so I can help my mum and my dad. Its certainly giving me hope about what we can achieve for my mum.
It turns out my mum has too much calcium in her blood so they are questioning a problem with the para-thyroid and trying to bring the levels down. I don’t know/think it’s connected, but they may have to outrule any secondaries as I understand the tumour is in a place where there are a lot of veins and arteries which could mean it spreads into other parts of her body quite quickly.
Lainy – that’s certainly a good place to start, and we will take this on board.
Tess – you are an inspiration – these are things we hadn’t even considered (and probably not even known by my mum’s local acute team). I thank you for taking the time and trouble to write all this information in your post. I’m hoping that some of the information/images are electronically filed and can be forwarded to specialist colleagues through the NHS intranet, but it’s a great idea about the courier-ing if that speeds things up/or for paper format and I will bear that in mind. I know if she is transferred to the birmingham team they will want to redo everything as a baseline. However, we feel we are racing against time, so every shortcut and second counts doesn’t it.
Thank you both so much for this, I will keep you posted about how we get on.
Best wishes
WendyHi Gavin,
Thanks for answering so quickly, and I hope this post finds your mum and dad, and yourself very well and in high spirits. And I really hope they managed to fix that wretched leaky tap – it’s amazing how annoying but ‘fixable’ things like this can really upset everyone when they are feeling at their most fragile.
I must say, we have found yours and Tess’ advice so helpful – especially in these early days when we are fumbling around in the dark trying to make sense of it all. To be quite honest, I’m still trying find out what questions to ask, but I have to say that I’m so grateful to have so much expertise on tap, especially for such a rare condition. ‘Thank you’ doesn’t seem good enough, as we are very grateful for your help and advice and hope we can offer the same to others one day soon.
The link about the microwave ablation in UK which I found last week while searching on the net is http://www.theengineer.co.uk/Articles/311291/Microwaved+liver+cancer.htm but if you google the words ‘microwave ablation cholangiocarcinoma’ you will get lots of information on it. We contacted the UK specialist (Mr Lloyd) based in Leicester Royal Infirmary yesterday, who was so nice and emailed us straight back today but sadly told us that ‘Unfortunately, bile duct cancers near the liver hilum are not suitable for microwave. The energy required to ablate the tumour would cause local destruction of important vessels (hepatic artery etc) and potential liver failure. These are very difficult tumours to treat and surgery should be considered
Tess, I’m so sad and sorry to hear about your dad, you must miss him dreadfully and I’m so sorry for that.
Thanks for your kind words of support too.
On the one hand, I’m grateful that my mum has not had to endure years of suffering and worry before now, but just so shocked that this has all come about so quickly -it seems a horrible condition and creeps up so fast and quietly. I’m so very grateful for you taking the time to write back and your helpful and comforting advice…. I’m glad about the itching because that’s the one thing that seems to be bothering my mum at the moment, she seems to really enjoy ice cream and fruit right so the shakes are such a great idea. And I guess we have to find out what we’re dealing with first – she’s only just had results from CT/Endoscope which the team are going over again with a fine toothcomb to see if there are secondaries which we will know about later this week – so I suppose we need to get a second opinion from a specialist and find out what grade she has with a biopsy if we can. We’ve just heard that microwave ablation is out of the question because it’s too close to the hepatic artery. You have been like a shining star in a very dark night Tess and I thank you for responding so quickly. Your dad must’ve been so proud of you too and everything you did for him.
Thanks for the suggestion about the new thread too.
Best wishes
WendyThanks Tess, the site seems to explain everything so clearly about possible treatment. i’m so grateful to you for posting it.
One other query I have which may not be possible to answer – for cc is the jaundice an early indication or a late one? Or is there no measure? I guess it depends largely on where the tumour is located and if its blocking the bile duct and we need to find out exact what she’s dealing with first. From what I’ve read it seems there are no clear ‘symptoms’ of cc until there is a problem such as with jaundice, nausea or deep fatigue and it gets investigated with CT but what I can’t work out is how extensive it can be by this time.
I’m trying to gauge right now how bad my mum is going to get and plan ahead for my dad who is just bewildered by this whole new thing my mum has. At the moment she is very jaundiced, is completely exhausted, sleeps all the time, is very itchy, gets the shakes, is not eating, lost weight and has tablets to control the feelings of nausea. I’m so hopeful that she will feel better in herself after the stent has started to work and clears the bilirubin in her blood, but scared that this is the best it’s going to be from now on. I’m just so hopeful we can find something that will give her a window of time to feel like her old self, as we’re certainly not ready for her to give up on life – and she has far too much she wants to achieve still. I’m sure you feel the same for your dad too.
My best hopes and wishes go to you and your dad and thanks for the time you have taken to respond to my email.
Take care,
WendyGavin
Your story sounds so familiar, it could’ve been our own – as my mum has just be diagnosed with CC after 6 weeks of jaundice, but not yet treated. We are hoping to hear about any spread of the cancer on Thursday after a local multidisplinary meeting. We too live in the UK. We are currently exploring a potential new treatment called ‘microwave ablation’ as I know it is successful for inoperable liver tumours but I don’t know about CC and I will keep posted on here with developments in this regard. We are waiting to hear from the specialist based at Leicester to see if this is an option for my mum.
I am so pleased I read your post, i’m interested that the specialist recommended PDT before chemo treatment which will hopefully be an option if microwave ablation is not suitable. My mum is not currently with a specialist, but we hope to get her referred to Birmingham from Glocs and I don’t want to waste any time.
Having a 13 year old boy myself who was born with a rare and life threatening muscle condition / COPD himself I know how important it is to be seen by a specialist and quickly, and indeed it seems you have to do the research to get the best treatment for your loved one.
Thanks again, to each and everyone here for posting this wealth of information – my heart goes out to you all. Wishing you strength and good health.
WendyWe are uk based, and my mum has just been diagnosed with a potentially inoperable cholangiocarcinoma in the perihilar region of the bile duct. Her first and only symptoms have been 6 weeks of jaundice.
I’m sorry to bombard with questions but I’m interested to know if, in your experience, the jaundice is a ‘late’ sign of this cancer, or if it’s an early sign?
I would like to know if anyone has ever had success with microwave ablation – a new treatment in UK which has had big success with other liver tumors?
Also my mum has just had a stent fitted and I would like to find out how long (on average) they last, and how soon her jaundice is likely to clear so that she is feeling better in herself.
Thanks so much for your help and support
Wendy
