kr15ty
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Hi Jemima,
Sorry to hear all didnt go tp plan in Paris but glad you liked Dr Askill in Singleton, like i said he made time for us on his day off to go through all the questions we had, did he say what Chemo he would start your mum on?Good luck and hope you all enjoy your hols you deserve it,
Thinking of you allKristy x
Jemima wrote:Well, we got the news from Paris yesterday and it was a big fat NO…They decided that because of the artery involvement that they weren’t prepared to take the risk and so we are back to the chemo option. Mum took it really badly but I have been trying to make her focus on the chemo and how that might help. Infact the doctor in Paris did tell her to come back and see him in 4 months or so if the chemo does shrink the tumour so there is a very faint spark at the end of the long tunnel.
On Monday we went to see the oncologist at Swansea (Dr Askill) and he was great. Yes, you are right Linda, how they are does have a big effect on us. Mum did not like the doctor at Basingstoke at all and all she remembers is that he ‘told me to go home and wait to die’, which is not what he said.
Dr Askill was very straight talking but in a real person to person way, not condescending at all. Anyway, it turns out that Mum can have her chemo at the hospital where she has her stents done which is only 45 minutes away instead of Swansea which is 1 and a 1/4 hours away.
It doesn’t sound like much but it will make all the difference to us. The doctor there is part of Dr Askill’s team anyway so it is all working out well.So it has been another rollercoaster week, along with trying to organise our holiday to France. I think we now have a plan. I just have to convince Mum to do one section by train instead of spending 3 days in a car with four young, bored, tired and very active children ! I keep telling her that she needs to stay well before starting chemo but she is worrying about me driving by myself…….Mothers !!
Thanks for listening and sending everyone my best holiday wishes for the summer (or winter for those in the southern hemisphere
)Jemima
Hi Jemima,
Hope all goes well tomorrow with Dr Askall, hope i havent missed you before you go down make sure you try to ask the the questions you have (i wrote them down found it helped as you do forget).
He had a bad weekend high temp etc but being stubborn lol he would not let me ring the hospital but he road it out and was feeling much better yesterday thank god, apart from that he his been feeling great.I try and get on here as much as possible mostly every day apart from weekend.
I want to wish you and your family all the best for today, let me know how you get on.
Thinking of u all
Kristy xJemima wrote:Hi KristyThank you for your reply. I told my Mum what you had written and along with the fact that it is just a lot closer she has decided that she will the chemo at Singleton.
We are off there tomorrow (monday) to meet Dr Askall for the first time and to get everything set up so that she can start her chemo as soon as we get back from holidaying in France.
This is providing that the surgeon in France that we saw last week does not decide to operate. We are waiting on tenterhooks for that news but hopefully it won’t be too long.
I hope very much that your partner is still feeling well with the chemo. I expect that you don’t have much time to get on here but I just wanted to let you know that I have been thinking about you.
thoughts and best wishesJemima
Hi Jemima,
Thank you all went well he is still feeling well in himself. I agree you have to keep positive and strong physically and mentally through this and will be good for your mum to see all the family will keep her spirits high, everything with the hospital takes to long to orginise.Dr Askall does seem to be ok, will answer any questions you have he rang me to make an appointment with him on his day off as i had asked one of the doctors on the ward about some treatments. He asked me to bring in all information that i had and he would go through the options, which i did and kept him there for nearly 2 hours. He did say the new treatment might have a to wait for for a few weeks as they have to arrange it with Chemo Day Unit. I did tell him i wasnt happy that everything has taken so long since the start of being diagnosed,he came back in and offered us treatment the following week. I have never been pushy before but i have sat back for months and felt as if i need to keep on top of them to do something. My partners protein was very low and i bought him protein drinks and while in hospital i mentioned it to the doctor and she said or yes we have them here they are good to build his protein up and help with his weight, but if i had not mentioned it we would have not known.
Hope your mum is doing well, take care.
Kristy
Jemima wrote:Hi Kristy (sorry got your name wrong before as I have a friend called Kirsty so it must have been on my mind !)That is so bad that they didn’t do the blood tests. I felt exactly the same way all along that everything takes ages to happen and even if it is a day or a week it does all add up and suddenly you are a month down the line and still nothing has happened. Anyway, in your case I am hoping that all goes well tomorrow and that your partner gets his chemo.
My mum is not starting chemo until August as we booked a holiday (before being diagnosed with cc) to go to France to see all our family out there at the end of July. If things had happened more quickly then she probably would be in the middle of chemo now and we wouldn’t have considered it but what with other appointments happening going to France will only delay it by a couple of weeks. Dr Crosby at Velindre has agreed that the emotional benefit of being with family for a week outweighs the disadvantages of delaying the chemo. I know she will have a great time and it will be a boost to her morale but part of me just wants to get on with it as we have waited so long already.
I think it is Dr Askall that Dr Crosby has said we would see at Singleton. Is he OK ? She needs to make a decision about where to have the chemo quite quickly as we need to get the appointment booked in so that she can start straight away after we get back from holiday. Is he nice, professional, sympathetic ?
I will post about the other opinions we have got as soon as we have any news. Prof Davidson has been very nice so far in all the emails we have exchanged but I have not heard from him yet since he has had Mum’s scan images etc.
Best wishes to you both and good luck for tomorrow
Jemima
Hi Andie,
Sorry for late reply havent been well myself, anyway my partner David had Chemo eventually on Thursday was there for 8 hours but is still feeling fine on this combination of Chemo ECX which doctor advised. I believe he is taking antibiotics but will check as there are so many tablets he has to take hard to keep track. I know makes me want to scream aswell.Hope all is good your end, take care
KristyAndie wrote:Hi Kristy,Was thinking about you today. I don’t blame you for moaning, a simple blood test should have been given so you know if blood levels are ok for chemo. It’s the little things like this that sometimes push me over the edge and make me want to scream.
Did the oncologist mention your partner taking a low dose antibiotics whilst on Chemo?. My Dad was advised by his Doctor to, it helps keep infections at bay in the stent whilst on Chemo.
Good luck for tomorrow
Best wishes
Hi Andie,
Just read your post cant believe they have no beds and also got to wait so long it is terrible. Don’t they realise with Cancer you cant wait for any treatment the quicker they do something the better chance of it working, i am so annoyed at them. Hope all goes to plan for you all tomorrow and your dad gets his bed.
Kristy
Hi Jemima,
So sorry to hear about your mum, my partner has it in the bile duct and they had to put a stent in which was done begining of march 2010 @ Singleton Hospital, the specialist is Dr Askall at Singleton who has been and still is treating my partner. I have been reading up on Cholangiocarcinoma and it is all mind blowing just dont know which way is the best to go at the moment, Andie has given some good advice on where to go for opinions. Iam glad you are having other opinions regarding this Cancer, i have been doing research but not sure the best places to go. Let me know how your mum gets on with the other opinions and wishing you and your mum all the luck. He was due to start his new Chemo today but we got there as arranged by the doctor this morning to be told they cant give the Chemo as he has not had his bloods done no one had arranged for them to be done so was sent home and have to go back early tomorrow morning. Its just a nitemare we worked oursleves up the last few days to be told it cant be given today, i was very annoyed but my partner said not to worry he is going back tomorrow but all these littles mistakes along the way just make you think another day wasted, the waiting time between treatments etc are all adding up why dont they just get on with things instead of weeks passing by. I have had my moan now lol…..Sorry. Why does your mum have to wait until Aug to start he Chemo?
Thinking of u all down there in Pembrokeshire.
Kristy
Jemima wrote:Hi KirstyI have only just seen your post. Not sure how I missed it. I am just down the road from you in Pembrokeshire. My Mum was diagnosed in Feb 2010 with CC and has a klatskin tumour which is in the left bile duct just inside the liver but it has now spread a little to the right duct. The first place we went to for surgery advice (Basingstoke) said that it was inoperable, but we are getting a second opinion from Prof Brian Davidson at the Royal Free in London, and a third opinion from Prof Jacques Belghiti in Paris (my mum is French but lives here).
If they don’t come up with anything then she is due to start chemotherapy (gem/cis) at the beginning of August.
Who is it that your partner has seen ? Was it in Swansea ? For chemotherapy we have seen Dr Crosby at the Velindre Cancer Centre in Cardiff but Mum may end up having the treatment at Singleton but I can’t remember the name of the doctor…Dr A??? Would this be who you have ?
It doesn’t seem like they are very switched on or sympathetic so it may sway our decision to stay in Cardiff even though it is further away.
In everything that I have learnt so far the best thing to do is get as much information as possible and then if you are not happy with the care that you are getting then try somewhere else.
Sending my best wishes to you and your partner
JemimaJust a quick message before i go to bed, early start in the morning and a long day ahead with the Chemo. Many thanks to all of you that have left messages, Will try and get back to reply to them tomorrow evening.
Take care all
Kristy
Hi,
It sounds like my partner has the same as your dad, they put a stent in which on the second attempt worked thank god so chemo could be started his first treatment was Cepectibane which after 8 cycles of 30 minute sessions did not work. Due to feeling very unwell i insisted a CT Scan was brought forward as was due to have it the week later, which the doctor agreed to. We were informed that the cancer is 13 cm in the liver and on the main vein from the bile duct and has spead to stomach. They are now going to give him a combination Chemo which is called ECX Chemo which he is starting tomorrow,the mixture is made up of epirubicine-cisplatin and capecitabine also known as Xeloda as they say his was inoperable. Will let you know how he gets on. I cant remember but will ask my partner what they said.What Chemo is your dad having?Kristy
Hi,
Many thanks, much appreciate your help and kind words
Kristydevoncat wrote:Kristy,
I was originally diagnosed in Scotland and we have lots of UK members here who
I am sure will pop along and offer some more advice, though Andie did give the cc specialists that I can think of.Hang in there.
Kris
Hi Andie,
Thank you for your quick reply, yes been hell of a year, must be the same for you. Hope all goes well with your dad and wish you all the luck in the world.
Also thank you for the information i will have a search on the internet and get the relavant information i require for the contacts you have sent, i have contacted the Royal Mardsen today and was told to send over all my partners information, so will speak to my partner about this would be good to have a second opinion. Have you had any second opinions regarding your dad.
Once again thank you for the replyKristy
Andie wrote:Dear Kristy,What a rollercoaster of a year you have had. I’m sorry you have had to find this website but the people on here are so helpful and kind and they will do the best to help you.
My Dad was diagnosed in April when he became jaundiced, no other symptoms, and luckily he still feels well. He was due to start chemo Gem/Cis but his bilirubin has gone up again and he needs to have his metal stent unblocked. My Dad is being seen by Dr Bramhall at the QE Birmingham but they have told my Dad his tumour is inoperable so we are hoping that the Chemo will work and help to prolonghis life.
Looking at this site these are a few contact details for the UK
Dr Valle, Christies, Manchester
Dr Peter Lodge, St James, Leeds
Prof David Cunningham, Royal Marsden LondonDr Valle was involved in the ABC02 trial which is the trial that made Gem/Cis standard chemo treatment for CC in the UK. Dr Valle can be contacted on 0161 446 8106.
I hope the above helps.
Best wishes and Good Luck
