jemima
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Donna
I am so sorry for your loss, and for your children too. My thoughts are with you and your family.
Jemima
Hi Lisa
Well I hope that the new treatment continues to have only minor side effects. Reading that you are nearly at the 3 year mark gives me real hope for my Mum who is only 4 months on from diagnosis but so many of the doctors are really negative. It would be good for them to come on here and read some people’s stories.
It sounds like you have such a good attitude towards it all.As for the weather we finally have some sunshine here in Wales and even had a barbecue tonight….hooray !
best wishes for continued good CT scans
Jemima
Thanks Lainy. The good news is that she is allowed out for the day so we will go and get her in a while and then take her back this evening so she is then in and ready for her stent change tomorrow. She is desperate to have a bath !
I hope that Teddy’s temperature comes down OK, and I will keep my fingers crossed for you both that the surgery happens.
For Cyberknife here in the UK, because it is not available on the National Health Service (i.e. free of charge) we have to pay ourselves and therefore we send medical notes/scans to them and do our own referral !
I thought maybe the place in Lille might be more experienced in CC because they have been open for longer, but maybe, as you say, it doesn’t work like that.
We will make some decisions this week once everything opens again….
Thanks again
JemimaWell, a bit of bad news in that Mum is in hospital with cholangitis. She was feeling unwell last Thursday, cold and just not herself but we didn’t think much of it. Then on Friday she had a pain in her neck and by the evening had a temperature.
Thinking back on it I should have taken her to A&E then but she sounded bright and said she wanted to go to bed and sleep so I thought it was OK. But when I rang her on Saturday morning shehad been sick, was shaking and had a temperature still.
So I drove her to A&E and they took her straight in and put her on IV antibiotics, IV paracetamol and fluids, and oxygen.
She had reall bad shaking like I’ve never seen. The doctor had warned us about it but it was very severe and although he said it was one of the symptoms to tell us her stent was failing to be honest she didn’t start doing it until it was too late.
So she is still there as they are still monitoring her. Monday is a holiday here so they won’t be changing her stent until Tuesday but hopefully by then the antibiotics will have worked properly and she will be in the clear.
It has really knocked her back though and she had been looking and feeling so well until then.
She has only just been referred to an oncologist so we are waiting (again!) for an appointment with him. In the meantime I think we will go for a second/third opinion with Prof Brian Davidson in London and maybe also to the Cyberknife Centre in London, or maybe the one in Lille in France as it has been up and running for much longer.
I guess this is just the beginning of trips to the hospital and her being unwell, but it is horrible and I just don’t want her to go through it. She has always been so strong and seeing her on Saturday so helpless and confused (she was very dehydrated having sweated all night) it just wasn’t my Mum. I guess it happens to everyone but I just want my old Mum back
Thank you Lainy, Marion and Gavin
You are all a mine of information ! I will try contact some of these places this week once all the children are at school. They are on holiday the week after that so I won’t be able to think for a minute once they are at home all the time…..
The guy in Aintree seems very switched on but it seems strange that I haven’t seen any reference to him elsewhere.
My brother is arriving tomorrow night for a couple of days so that should cheer Mum up a bit and be some moral support for me too. I will discuss all the options with him and see what he thinks.
Thanks again for all your support
JemimaHi all and thank you so much for your messages.
Mum is still very depressed. She is usually such a strong person and a real fighter but she just seems totally floored by all this. She is leaving it all to me to find stuff out (which is fine by me) but this means that she just accepts everything that the doctors say without questioning it or asking about anything else.
I guess as it is not happening to me I still have a partially objective view and can look at things from the outside in, but she is just reeling from it all.On Wednesday the surgeon from Basingstoke rang and said that she was not suitable for resection. I don’t know whether to try and get a second opinion or not as I can see from what he is saying why he can’t do it (i.e. Klatskins with involvement of both biliary ducts – although right side is probably only partial).
We haven’t heard from her local surgeon yet who is the one who did her stent and referred her to Basingstoke. Mum has spoken to his secretary and apparently he will contact her next week…… but when ? Surely she needs to be referred to an oncologist straight away (she hasn’t seen one yet), so that they can talk through chemotherapy and or radiation.
I would like her to send her notes and scans etc to the Cyberknife centre in London where they could assess her for suitability for cyberknife treatment but since the hospital has all her information then we have to go through them which could take who knows how long.
It is all so frustrating !!
Thank you everyone for your messages.
Gavin, the surgeon we saw at Basingstoke was very dismissive of PDT and said that the clinical trial that had been up and running for it was actually stopped part way through because of the really bad results…. does anyone know about this ? I thought that some people had done well on it.
Mum is really depressed at the moment about it all and I feel that she just doesn’t have enough information about it all. At her original diagnosis the doctor told her not to look cc up on the internet and so all she has to go on is what the doctors tell her at appointments.
I am not sure whether to suggest this site to her or not…… There are obviously some amazing stories on here and it would be great for her to be able to talk to other people dealing with cc but I don’t know whether all the sad stories would be too much for her at the moment.
I am looking into other options for her and telling her about them but she just seems bewildered. I don’t know what to do for the best.
Jemima
Hi Lainy
Yes I wondered about the size of the tumour and how much damage it has done but none of the experts have mentioned it.
She has gone back to the surgeon who put her original stent in, although she doesn’t go until next Tuesday so I may have time to persuade her that it is not such a good idea to change it without it being necessary. I am sure that the surgeon won’t do it unless he thinks it is needed (I hope).
Thanks for the good thoughts and I think I will do some more research this weekend into other options and where the best place to go is.Hello
Just an update on how my Mum’s appointment went.
She had the MRI scans in the morning and then we waited until the afternoon to see the surgeon who said that from initial diagnosis (i.e. looking at he scans for about 15 minutes) the left side of her liver is quite atrophied and dilated which suggests that the tumour has been there for quite a while doing it’s thing before she got jaundiced in February.
The tumour itself is in the left duct but quite near the ‘exit’ (basically a Klatskin) and he thinks that it has started to spread into the right duct as well. However he is not sure so although he hasn’t said definitely no to surgery he thinks it will probably be too marginal to proceed as often things look worse on the inside once you start the surgery compared to what the scans look like.
He wants to discuss the case with his colleagues next Tuesday before making the final decision as he just isn’t sure whether the right duct is affected or not. Mum has her stent in the right duct so this could be affecting the image, although he said that the edges of what he can see look ragged, not smooth as they would if it was the stent.
I can appreciate what he is saying about it all and that it is a big operation for someone of 77 (although he never said that her age was a factor) but he did seem quite negative about any other options I mentioned.
I asked about the possibility of chemotherapy or radiation to shrink the tumour so that surgery was a possibility but he seemed very dismissive and said that it rarely works.
The only thing he mentioned was stenting and that Mum could have a couple of years maybe of that as it was all very slow growing.
I asked about Cyberknife and sir spheres but he just said that they didn’t do it there.
So all in all not a very optimistic or informative venture !
Mum is very down about it all. It is now 2 months since she had her stent and has contacted her own consultant about getting it changed even though she has had no symptoms. Is this wise or should she wait ?
We have to wait for the final decision from Basingstoke next Tues/Weds and then if/when they say no she will have to be referred to an oncologist for chemo presumably ?
So another week down the line and still no further on…….Jemima
Forgot to add that the surgeon told us on Wednesday that on the original CT scan there was evidence of lesions on her liver and possible lymph node involvement on the side of the main bile duct. However, this was the first we heard of any of this. Luckily on the new MRI scans this does not seem to be the case at all and also there is no major vein/artery involvement.
The tumour is very small – 1cm or less – so surely this should make her a good candidate for chemo/cyberknife ?You are right Janet, the stent was the most important as it has restored Mum back to feeling like she is OK. I don’t know what things are like in Australia but we have had to wait weeks just to get appointments let alone having any decisions made !
I am hoping that once we have gone through tomorrow that whatever the outcome things will start moving a bit more quickly….
JemimaHi Ash
I am in the UK and my mum was recently diagnosed as well. We are actually in Wales and having to travel to England to get a decision on surgery. Tomorrow we are off to Basingstoke to the liver unit there. I don’t know whether they have much experience of cc so I willl be asking them some hard questions and if they are not good enough I will be taking Mum to one of the hospitals that Gavin listed above.
I have heard that Birmingham has a good reputation too.
It is about two and a half months since my Mum was diagnosed and like you I would read all the stories on here and just cry. Now I am at the stage where I am ready for a fight and will do anything, read everything and contact everyone in order to get the best treatment for her.
As for private vs. NHS well the doctors and specialists have all said to go NHS and that going private will not speed things up. I think this is probably true at the beginning but if my Mum gets turned down for surgery then we may go private for a second opinion, and for any ‘newer’ treatments such as Cyberknife and sirspheres.
Warmest wishes to you and to your DadJemima
Thank you for your reply Marion. As I am sure other people find it is just difficult to take so much information on board, as well as dealing with the emotional side of things.
There doesn’t seem to be the link you mentioned ?
Thanks again.
JemimaDear Andie, Kris and Gavin
Thank you for your replies. It is good to know that there are other people who understand what is/should be happening.
Mum has had the Macmillan nurse out to see her when she came back from hospital but not since then (6 weeks ago). She went back to the hospital about 2 weeks after being discharged and we saw her specialist again for the results of the MRI. She had blood taken at that time but no-one has given us any levels or taken any since (i.e. a month ago). She is not visibly jaundiced anymore but who knows since they haven’t tested her….
The specialist we have seen is a very nice chap and has done liver surgery in the past but just seems to come under the heading of General Surgery. Should she not be seeing an oncologist ?
She has been referred to Basingstoke for the decision on the surgery which I haven’t seen mentioned by anyone else. Does anyone know anything about the people there ?
The only contact we have is with the secretary of the specialist at our local hospital.
Surely someone should be telling her about other possible treatments so that at least she can get more informed incase the surgery is a no.
Her GP told her not to google CC so as far as I know she hasn’t so she is completely in the dark.
It just doesn’t seem right.
Thanks for ‘listening’
Jemima
