My Mom (UK)
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Hi Jemima
Thanks, I hope your Mom’s chemotherapy goes well – like you say I’m sure state of mind means that she will be in a better place to start the treatment having had such an enjoyable time.
Hi Andie
Thank you – we will try for a referral to the QE; glad you all had a great time in Wales. Hope we get to do that too…
At the moment, we are getting different messages from palliative care and medical staff over whether it will be possible for my Mom to go on the holiday BUT fingers crossed…. If not we will just have to try and re-arrange. We will hopefully know something more tomorrow.Hi PGTips
I am in the UK too and my mum was diagnosed with CC in Feb 2010. After 3 second opinions (if that makes sense !) we accepted that she is inoperable and she has now started on chemotherapy (just last week). So it has taken us 6 months to get to this point and a lot of ups and downs on the way. Initially I wanted everything to happen as quickly as possible but then we were in the same position as you and we had booked to go to France for the summer holidays so decided to postpone the chemo start date. I don’t know whether we will ever know whether it will have made a difference delaying it by a month, but I do know that Mum had a wonderful holiday surrounded by family and friends. Sometimes state of mind is more important than anything.I hope your Mum does get to go to Wales, if she is up to it, and that you have a great time.
best wishes
Jemima
Hi again,
The QE is a Liver Specialist hospital. If you check on their Website it should give you more details. They took part in the ABC02 trial which is now the standard Chemo treatment for CC (Gem/Cis) Dad sees Mr Bramhall and also on occasions Mr Maya, who have both been very nice. Another member on here was also treated at the QE. His story is a positive one, It’s under the Good News/Whats working. It’s called “my story incase it helps’ by andy
I’m not sure surgery wise if they would treat CC this way, as they wouldn’t my Dad. Perhaps one of the other hospitals listed would be worth contacting. My Dad didn’t want surgery once the Doctors at the QE had ruled it out so decided to go with Chemo.
My Dad had an external bag when his stent was fitted and once the Doctors were happy the bile was flowing they capped it off. It was left in a few weeks as precaution but after his check up at the hospital they removed it.
If your Mom is up to the holiday to Wales then I would 100% go. It will do you all good. Enjoy it if you do go. We went to Wales last week in July and had a lovely time.
Take care and best wishes to you and your family
Thank you so much; the support we’ve already had on here means so much. My love and support goes out to you and your loved ones.
We will do all we can to make sure my Mom gets to go on holiday and I hope we can make it as enjoyable as the one had by Lainy and Teddy. x
Hello to you and welcome, PGtips. While I cannot advise on the Medical condition, I would like to write about the vacation. My husband Teddy is now with Home Hospice Care but when we heard the words in June, from the Doctors, “we can do no more.” we schedule a trip from Phoenix to our home state of Wisconsin to see all the kids (adults) and grandkids. It was a joyous 2 weeks, one that I look back on as fullfilling Teddys biggest wish. There is nothing like family to give the best RX in the world. My vote is to plan the trip full throttle as it gives your Mom a wonderful goal and if at all possible make the trip. If the stent is working and all is well and this is what she truly wants, go for it. Suggestion: ask your doctor who you might call in Wales if a doctor is needed. That will give you all more security about taking the trip.
Hello PGTips. Welcome aboard.
I reside in York, and had a whipples resection at St. James in Leeds, followed by six chemotherapy back in York.
I do not know much about PDT, and do not know whether St. James do it, but it is my understanding that St. James is the most specialised hospital in Europe for treating cancer, and have a lot of experience of treating CC. The treatment and care I received there are second to none.
As Kris said, there is a good site on Facebook (AMMF), and the AMMF Website as well, for more information within the UK. Myself, Gavin, and several others from this forum go on there. I am sure that Helen Morement, the founder, will be able to assist you with any queries you may have. Sending all my love and prayers to you and your mum, and hoping that you may find some answers to your questions at this very troubling time.
Lots of love to you,
Sylvia xx
Hi Gavin et al
Thank you again for the information and support; I’ve told my Mom about the discussion board and she was really pleased that there is something like this available.
The hospital will check my Mom’s stent tomorrow ( It is an expanding metal stent with external bag) and we think her jaundice is improving. Although she is now in some pain in her liver area.
I’m hoping to see her consultant this week and will ask him about a second opinion/referral to one of the hospital’s you mention (although from what I’ve read – I think the PDT trial is as you say suspended). If he isn’t too helpful (as long as the stent is working OK; we hope that she will be able to come out of hospital soon) and we will then discuss a referral with her GP – who is usually pretty helpful.
A couple of questions. From what we’ve been told it seems pretty vague about whether Mom will continue with an external bag (my Mom thinks they said it would be inside from Monday if working OK?) and although I’ve looked into it a bit on the internet – I’m still confused about what is normal procedure.
This next question may sound daft in the circumstances BUT my Mom was really hoping to go on holiday to Wales next week (with myself and my sister’s family). Obviously we are only going if she is able but my Mom has looked forward to this so much – is it possible timescale wise and if the stent is OK/jaundice gone etc., that she will be out of hospital and able to do this? One Doctor at the other hospital she was in – indicated it could be possible but I don’t know if they were being realistic or not…. AT THE MOMENT THIS IS ALL MY MOM WANTS TO DO and we want this to for her quality of life but obviously don’t want to jeopardise her health/treatment?
Hi Pgtips,
Welcome to the site, although I am sorry that you had to find us all. And I am sorry to hear about your mum. You have definitely come to the right place here and as Kris says, this is the best place to find out information and for support. Please feel free to ask a ton of questions if you have them and we will help if we can.
My dad was diagnosed back in the summer of 08 with inoperable CC due to its location, too clsoe to the portal vein. He couldn’t get radiation either so the only other treatment options were PDT or chemo. My dad chose PDT with the possibility of trying chemo at a later date. The reason he chose PDT over chemo first was that he wanted a quality of life and the effects of PDT were not as tough as chemo. As Kris says, my dad was diagnosed in Dundee and had his PDT done there also. If you want to ask me anything specific about my dads experiences with PDt then please feel free to do so and I will help if I can.
As I understand it right now though, the PDT trial has been suspended I think, but I can’t say that for definite. Perhaps this is something that you can discuss with a specialist when you and your mum meet one. Here is a list of the hospitals in the UK that were running the trial –
University College Hospital London
QueenThank you both so much for the information, advice and support and good luck to both of you and to Andie’s Dad for his chemo.
I hadn’t found the UK charity so will have a look at that ASAP and will also look into liver specialist hospitals. I would presume from your Dad being with the QE in Birmingham that they are perhaps liver specialists (?). Would I still need to look for these if the cancer is outside the liver(?) (although I think from other comments there has been some metastasis/spread/scaring to the liver)?
My Mom is from Shropshire and is being treated by the local hospitals thus far but is only about 40 miles from Birmingham.
Once again, many thanks.
Hi PGTips,
I’m also from the UK. My Dad was diagnosed in April after 5 weeks in hospital for suspected Gallstones due to Jaundice. He had various tests including ERCP, PCT and Ultrasounds at his local hospital but it wasn’t until he had a second CT scan and they referred it to the Queen Elizabeth Hospital in Birmingham that they diagnosed CC. Our local hospital didn’t seem to know anything about CC and when they had his results they told him he had a few months to live and no treatment was known. We were devastated, and angry they had told Dad this whilst he was on his own.
Dad was transferred to the QE and had a metal stent fitted, he also has extrahepatic CC which is outside the Liver. The QE were lovely and whilst we were told no operation could be done due to location (to near main artery/vein) he would be able to start Chemo which will hopefully keep it stable or better still shrink it. They also told us our local hospital was wrong to tell us he only had months left as this was not the case. Dad did have a biopsy via EUS, they only confirmed it was CC as to stage it they really need to operate and get inside to do that.
We have had a few set backs, Dad turned Jaundice again the week before his Chemo was due. This resulted in him going back in the QE for a stent change. It should have been a 3 day hospital stay but turned into a week due to an infection BUT he is feeling much better now, gaining weight, eating lots and going out and about. All this with no treatment apart from the stent. So 7 months along the line he is still here when the doctors originally said he wouldn’t be!
Chemo is booked for 2nd September and hopefully he will get there this time.
My advice is never give up, get second opinions, and take one day at a time. There will be a rollercoaster ride ahead but you will be suprised how strong you can be when you need to. Also this site has been a wonderful support.
Have you got a Liver specialist Hospital near you? If so ask to be referred to it. If you type in Hospitals in UK in the search engine it will list posts that discuss them.
Good luck to you and your Mom
Welcome Pgtips. I was originally diagnosed in Glasgow. What part of the country are you from? Gavin, a very wonderful member and moderator, is familiar with PDT in Britain. His father had it done I think in Dundee. So it is being used in Britain. He is our current “expert” on the treatment. I am sure he will be around soon to welcome you and answer some questions.
In case you havent found it yet, Britain has its own cholangiocarcinoma charity…AMMF which is run by Helen Morement. It has a facebook and webpage. Perhaps they know more places in the UK where PDT is offered for this type of cancer. IT wouldnt hurt to ask them.
You are in the right place for support and information. We are a tight group that really does our best to help each other.
Kris
We have been told that my Mom has bile duct cancer. She has just had a metal stent fitted. From a diagram we had drawn it appears the cancer is outside of the liver just below the two branches (?) and above the stomach area and the pancreas.
They have been trying unsuccessfully to remove gallstones in the bile duct and found the cancer – they told us it is malignant but I’m not sure how they know. Mom has been jaundiced for six weeks and in hospital for a month (initially treated as being due to side effects of methrotrexate for Rheumatoid Arthitis). She has been having itching and nauses and problems eating for at least that long but her lack of appetite and low energy levels are much longer lasting.
A non gastro enterology registrar told us the bad news (he was very kind to my Mom but it wasn’t his area of expertise) after I asked to see someone as a nurse just came out at the ward desk that the results from the gallstone removal procedure didn’t look good/suspicious etc. I understood what she was implying but didn’t recognise the terms she was using and was just shell shocked as we had been told when my Mom had asked repeatedly that cancer was extremely unlikely.
The registrar (?) said didn’t know if primary or secondary/stage/level.treatment etc., and they wouldn’t know until biopsy results (up to two weeks). But, from looking on the internet it seems the biopsy isn’t really important in bile duct cancer it’s either resectable or it’s not. No one else has spoken to us and my Mom about treatment options. I realise I need to chase this up but it’s now the weekend. We had been given the impression that nothing more would be known until the biopsy results but from what I am reading I don’t think that this the case.
My Mom was in hospital in May with peritonitis and suspected ulcers (she has know been taken off the ulcer medication- I now think possibly related to the cancer but not diagnosed at the time). They didn’t operate then as didn’t think she could survive (heart problems, irregular BP, possible earlier stroke, brain bleed last October, diabetes) so doubt they will consider resection surgery as an option?
I know my Mom has said she will refuse chemo and radiotherapy (this is due to her experiences of this with her family) and I’ve read about photodynamic therapy (PDT). Is this available in the UK and where (or was it just for trial purposes)? I also think we may need a second opinion and would like some names. What else do we need to know?
I am not sure my Mom is ready to hear any more bad news yet. At least with their abysmal lack of communication she and we can cling on to some hope – that it’s early stages and resection is possible.
I just wanted to add my Mom is wonderful. She is a great Mother and grandmother. She has always been a fighter of illness BUT I think she feels this has the beating of her …. hopefully that will change.
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