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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español. Por favor publique sus preguntas en Español y un intérprete le va responder.
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It's been ages since I have been on here as life has been just crazy recently but it's good to be back and see so many familiar faces.
A quick update on Mum - she is doing really well ! She is about to start chemo again at the end of January which is 14 months after her last dose. She seemed to have a reduction in the tumour after the last session but since then it has started to grow again, although they think very slowly. She is currently on no meds and living a normal life, but maybe a little more slowly than before. Not bad for 23 months post diagnosis.
Anyway, she has lost the list of vits/minerals etc that Andy posted and I can't seem to find it again on here. Does anyone have a copy ? Mum stopped taking it all a few months back and she is sure this is why she is feeling tired and wants to start again.
Sending my best wishes to everyone who remembers me
Definitely a miracle. Well done on managing to live as normal a life as possible and reaching your goals. With an attitude like that I am sure you will see the next ones through as well.
Thank you for giving us hope.
I hope you are doing OK. I was thinking about you a few days ago but hadn't managed to come on here but looks like you were around anyway !
Yes, things are looking good for Mum at the moment although I know that it can change suddenly but she is enjoying life at present and doing almost all the things she wants to do so we are just going with it while we can.
The oncologist appointment will be a bit of a milestone as we can then begin planning the summer holiday we are hoping to take with my girls. Last year we thought would be her last trip to France but if all stays well then she will get another chance to see all her family over there.
best wishes to you
We are very fortunate in that my mum's appetite has not been affected at all and she continues to eat very well, and has even put on weight. She is taking most of the vitamins/minerals and supplements that Andy recommends (see post on Alternative treatments I think), and that really has seemed to help her. As Lainy has suggested the high energy drinks seem to be the thing that work best for most people and it's just a matter of finding what she likes. I hope with all my heart that your mum's appetite comes back.
Well I suppose if it slipped out of the bile duct then it may have gone further down, into the small intestine and then, well, out I guess !
It's not on the scan anywhere and he doesn't seem concerned so presumably we shouldn't be either ?!
Mum's seeing the oncologist mid-June so we'll ask her what she thinks. Not that she is a very positive person at all but she may have a better answer.
best wishes to you
Hi Lainy and Marion
Thanks for the replies. I asked Mum's consultant about the stent in more detail and he said that it has probably slipped out as the tumour has shrunk. So good news I guess but it all seems just that....guess work !
I haven't been around much but have tried to pop in and read up on how everyone is doing when I can.
Just a quick question as my mum had a CT scan last week and whilst initial reports seem positive in terms of tumour shrinkage, I got her consultant to have a look at the scans too.
He has said that her stent seems to have disappeared !? Has anyone heard about this happening ? He says that since she is not jaundiced then it is good news but where is it ?
It is almost a year exactly since she had the stent put in and every day since then I have been expecting to have to rush her to A&E with an infection and to have it changed. Now it turns out it might not be there at all !
Any ideas gratefully received....
best wishes to all
Thanks for the update. It is great that your mum has got the chance to go for surgery as this really is the best option for CC. I will be thinking of you, your mum and your family on Tuesday. Do let us know how she gets on.
Welcome to this wonderful site and all the amazing people on here. As Lainy has said getting another opinion is a good idea, or even a couple more.
My mother was diagnosed Feb 2010 aged 77 and was basically told that nothing could be done as it was inoperable (she has a Klatskin tumour). We went to another surgeon who did not hold out much hope for her future. So we tried abroad and they also said that it was inoperable, but only just, and to try chemotherapy as just a little shrinkage might make the difference.
So Mum went through 3 months of gem/cis with very few side effects, and although there was no shrinkage there was also no growth. So we see that as a positive and she has been living her life as normally as possible.
She last had her plastic stent changed 1st June 2010 (very rare for it to last this long so again we see this as a positive), and apart from getting tired more easily she looks and feels well.
As I am sure other people will tell you no-one is born with an expiration date, so do seek other opinions, get as well-informed as you can about cc and keep living your lives.
Most of the doctors and professionals we have met have been incredibly pessimistic about mum's future but here we 14 months later and still going strong.
I wish you and your mum the best.
Yes there is always hope. When mum was diagnosed last year I looked first on the internet and was totally sure that she would not be here today. However, 13 months on and she is doing really well. She is still at home and looking after herself and feeling well. She is not a candidate for surgery so has had chemo and will probably start again in a few weeks. She is now 78 years young !
It's good that surgery is a possibility for your mum. Is she feeling better now that she has the drains in ?
I know that my mum couldn't tell my brothers herself what was wrong with her. I think it would probably have made it all too real and even now she doesn't discuss it with them. Since she lives alone I am the one who goes to all the appointments with her so it is easier for me to know what's going on. Maybe it is all too new for your mum and stepdad and they just don't know how to deal with it all.
I wish your mum the best of luck for the surgery.
and best wishes to you and your family
I am very sorry to hear about your mom. My condolences to you and all your family.
My mum was diagnosed in February 2010 and I was in the same state after diagnosis. I have found this site to be of great help both for information and support, and I am sure that you will too.
As Lainy says do as much reading as you can about cc so that when the doctors tell you things it is easier to understand what is going on, and as Joolz says, whenever you think of a question write it down so that you don't forget to ask it at the next appointment. Recording your Mum's session with the doctor is also good as it is difficult to remember everything that has been said. Also in my experience what your Mum hears and what you hear will be different.
My mum did not have a biopsy either, just scans (CT and MRI). She has had plastic stents since diagnosis. Does your mum have this or an external drain ?
Has the doctor talked about any treatment options yet ? Do you know where the tumour is ?
It is such a lot to take on board at the moment and I really feel for you.
PS Are you in the UK ?
It sounds like you had an beautiful celebration of a beautiful person's life. To have so many people there from so many aspects of his life is real testament as to what sort of person he was and how many lives he touched. I remember you posting last year wondering how you and your mum would find the strength, but you have and I can only hope that you all find strength in each other now that your dad is at peace.
Sending you my heartfelt best wishes
Congratulations on such good results. Sounds like a fabulous holiday you have planned. Enjoy enjoy enjoy.....
I am so so sorry to hear about your Dad passing. A blessing I am sure that he remained pain free and that you and your Mum were with him at the end, but no easier to bear. He sounded like a wonderful father, husband and friend.
My heart goes out to you and your family at this time. From your posts I know that you will have some beautiful memories to remember him by. He is now at peace.
Hugs and blessings to you and all your family
I hope that your father in law has done well and is now out of hospital. What a small world it is..... my mum is being treated at Carmarthen ! She was diagnosed there and had her stents put in, and is having chemo there too. She is with Mr O'Riordan who has been very good to her, as have the chemo unit nurses who are all fabulous at being reassuring, professional yet friendly.
Has your father in law decided whether he wants to have any treatments at all ? The one thing I have found is that everyone (in the hospitals) is very negative about chemo and radiation and the like. It is worth doing some reading up yourself and also getting someone to explain exactly what his options are. From our experience you do have to ask for proactive things to happen rather than someone else suggesting them. I think this might be something particularly British/NHS !
I hope that you and your family are doing OK. I have found this forum to be a real help both emotionally and educationally.
Your dad does sound amazing, to have gone through so much illness and now still to be thinking of others. I am glad that you are able to have this time with him even if he is asleep for a lot of it. At least it is peaceful sleep and I hope for all your sakes that it stays that way.
Thinking of you and sending you strength.
I am so sorry to hear that your dad has gone down hill so quickly. It sounds like the doctor has things under control and even though your dad doesn't want the hospice nurses in I am sure that they will really help you and your Mum as well as him.
I am thinking of you all and keeping you in my thoughts and prayers.
Sorry to hear about your father/father in law. My mum was 77 when she was diagnosed (Feb 2010) and although we have gone through some highs and some lows we are still hanging in there !
We are in the UK too (Wales) and Mum has been deemed inoperable by 2 different surgeons. She then decided on chemo which she had for a few months. She tolerated this very well with only minor and manageable side-effects. She is now on a chemo-break until March when she will start again.
When she was first jaundiced and ill she was very itchy and nauseous but all these things are treatable with drugs. With the new stent in it will take a while for the jaundice to disappear and the symptoms too. However as Marion says they really should be trying to identify the cause of the infection.
The things I have learnt from all this it is to be as informed as possible, ask for things to be done if they haven't been and you think they should, and go for second/third/fourth opinion if you feel you need to.
Which hospital is your father/fil in ? There a few in the UK which have experience in CC and it really is worth going to see someone who knows about it.
best wishes to you and your family and I hope that they manage to get the fever under control
I am sorry to hear that your Dad is having a bad time at the moment. At least his drain is giving him less bother. I am sure I have seen people posting about ammonia levels and forgetfulness but can't remember exactly. It might be worth looking into...
I can only begin to imagine how hard it must be for you and your Mum right now. I don't know what to say except that I am thinking of you.
I know that alot of people (especially in the US) have their plastic stents changed routinely at 2-3 months, but we are in the UK so of course things happen differently !
My mum had her last stent change on the 1st of June last year and so far it is still going strong.... Her first stent did only last 3 months but they only changed it because she got an infection and was ill. They will do the same with this one too. So far so good but of course it has been so long now I keep expecting her to get ill with it any day. At first I thought it would be better for them just to change it routinely but seeing that doing it this way has saved her a couple of ERCP day admissions (and the risk of infection) then maybe it has been worth it.
But, just to say that the plastic stents can last longer, and since you are cancer free then maybe that will be the case with you.
Sorry to hear that your Dad is having problems with his drain again. Maybe it is just because of his lower food intake. Is he managing to drink some of the high calorie shakes and things at least ?
I have been away and am only just catching up with everyone's news. Your dad and your whole family are doing so well, and 4 months ! .... time and again we have to say it ' the doctor's can't tell'.
Sending you hugs and best wishes
I am sitting here with goosebumps having read your post but I definitely believe in this kind of thing. Someone as amazing as Teddy could not just disappear, and letting you know he is still close to you must be so comforting.
I hope that all goes well at the hospice meeting.
Thanks for this post. My mum has a Klatskin tumour which they have said is inoperable. She is having chemo instead which seems to have slowed the growth so we are pleased with that.
It's great that you have had three years and I hope that the whipple goes well and gives your husband and your family plenty more time together.
Mmmmmmm, your dad's food choices sound just like mine when I am feeling unwell. Real comfort food and if it's what makes him happy and he can eat it then that's great.
I am so pleased that he is feeling much better and that mentally he sounds better too.
As the others have said don't think about how long, just enjoy all your time together. The doctors have been wrong before....
best wishes to you and your family
Posts found: 1 to 25 of 151
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