What can we expect?
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Hi Jemima, it really is a small world! My father in law is now out of Morriston hospital. They have put in the metal stent and he is now on a two week course of anitibiotics. He is very weak, but in good spirits at the moment and starting to eat a little better. He is also under Mr O’ Riordan at Carmarthen and he is being referred back to them now to see if Chemo will shrink the tumor to enable them to insert any future stents more easily. It seems everyone keeps telling us how seriously ill he is and that he could deteriorate at any moment and will eventually lose is battle because of infection.
Hope your Mum is doing well. We may just bump into you at the hopsital some time.
Take care
Alison
Dear Alison
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.
best wishes
Jemima
Hi Jemima, we are also in Wales! My father in law is in Morriston hospital at the moment but was originally diagnosed and the first stent was put in in Carmarthen hospital. It was there that we were told his cancer is inoperable and his liver scans were the worst they’ve ever seen, hence the prognosis of 6 to 9 months.
I went to see him yesterday and he says it was his first pain and fever free day for 13 days, so we are keeping our fingers crossed that the infection is now being beaten. they have told us that he should be out next tuesday or wednesday if he remains well until then.Marion, I have been assured that a culture was grown of the infection ( although nonone seems to be able to tell me exactly what it is) and the right antibiotics have been given on the advice of the microbiologist. I am advised that they are giving him a very strong penecillin.
It was encouraging to read that some people have outlived their prognosis by a long stretch and hopefully this will be the case with my father in law. Until his diagnosis he was a very fit and active man, who even when he was jaundiced walked two miles with us on New Years Day! He does however have the added complication of a heart problem, for which he was due to have a heart bypass just before Christmas. It was during the routine pre op blood tests that the problem with his bile duct was discovered. before this he had no idea that he had cancer.
Thank you again everyone for your responses. It helps to be able to speak to others who are in the same situation as us.
Alison
Allison,
I agree with Marion that a culture should have been taken. Blood cultures were always taken when I was admitted to the hospital. They put me on an antibiotic right away, but continued to run the test for a few more days to find out exactly what kind of an infection and make sure the antibiotic was the correct one to be on. Both times I felt much better after a few days and usually by then I had been told exactly what kind of infection I had.
Kathy
Hi Alison
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
Jemima
Alison… A culture must have been taken in order to identify the cause of the infection. I would address your concerns regarding the continuous fever with the physician. From what I have learned, these blood infections are difficult to treat.
All my best wishes for a gradual improvement for your father in law,
MarionThank you every one for your messages of support and information. my fahter in law ( my husband wrote the first message) is being treated in a hopsital in the uk. He is 77 years old and had his stent replaced today. it was a long operation and at first they thought they wouldn’t be able to put one in as the duct is now so narrow. We are waiting to speak to his consultant to know what to expect next. What we can’t understand is that he has been on very strong intravenous antibiotics for nearly 2 weeks now and he still has a very high temperature and is feeling very ill ( sick and generally unwell). we’re hoping things will now improve with a new metal stent in place.
Dear BV, welcome to our wonderful family but sorry you had to find us. I almost didn’t catch you in this thread and may I suggest you put your first post under Introductions so that others may meet you as well. I am so very sorry to hear about your Dad but I must say you all have a fantastic attitude and that is better than any RX. And yes, we do have Miracles aboard here.
Chemo: to have or have not is one of the biggest decisions anyone will ever make. Teddy was 78 and decided he wanted quality of life. It’s such a personal decision. I was wondering if you sought a second opinion. Somewhere in the recess of my mind, and believe me my mind takes a lot of recesses, I seem to recall someone else having CC around the portal vein but the doctor felt he could perform surgery. Perhaps some more family here will come around and remember the post. In the meantime have as much family togetherness as possible and enjoy each other to the fullest and be strong! Please keep us posted.Alison,
I think the hardest thing for me, caretaker to my dad (62) is you have no idea what to expect.
My dad is 11+ months into this battle and it has been a BATTLE. 12 hospitalizations from 4 to 44 days in length (the Whipple and recovery was the 44 day one), several blood infections, all kinds of open wounds and tubes and fevers and we begged for chemo and sought out a second oncologist to get it and it has been the battle extraordinare!!
I don’t know where we stand but I do know we have made it 10 months longer than we would have without this fight. I have,basically, moved back to St. Louis to care for him 24/7. My dad was luckily retired for several years before this, so he has never had to deal with that aspect. It has been overwhelming…all that said, we would do it all over again. He has gotten to see my daughter blossom from 4 to 5 and my sister had a baby a week after my dad had his first (and three more) surgeries.
You just have to take what comes to you day by day and work from there. We have laughed and cried at some of our circumstances, but it has been joyous to have the time.
Hang in there, read everything you can, ask questions and try to live each day with a little more joy.
Stacey
Alison,
My husband was diagnosed in Oct. and had those same symptoms ( very nauseas, tired, sick and lost 45 lbs.) until they took the plastic stent out and put in the metal one. He has done very good since then, (that was in Dec.) He really has no symptoms now except a little discomfort in the abdomen. He is eating again and going to work and says he feels really good. The Dr.s gave him 3 – 6 months as he is in stage 4 and it is inoperable and cancer is around the portal vein…I’m having a hard time believing the diagnosis of 3 – 6 was accurate since he is doing so well now. Hopefully he will beat the odds. Anyway, I think after the metal stent is in place, it will make a huge difference for your dad..My husband tried chemo for 3 weeks and it was so awful, he quit…He is so glad he did, he feels almost normal now…the chemo made him extremely ill and nauseas and depleted him of all energy. He was bed ridden the whole 3 weeks and lost 20 lbs during the chemo. Everyone has a different experience with chemo, but his was BAD. The Dr.s encouraged him to stick with it, but he says its the best decision he ever made,quitting the chemo.
So, for now, life goes on as normal as it can. It seems like it’s in remission of sorts and we’re thankful for that. I hope that your dad has the same luck, that he feels better after the stent and can maintain a more normal lifestyle.Hi Alison and welcome to our wonderful family and so sorry you had to come. We are big believers in 2nd, 3rd, 4th opinions. It’s very important to make sure the ONC has dealt with CC before. There are many RX for nausea so if one doesn’t work you can try another.
While we are not doctors, I would guess that most of what your father is going through is from the infection. What kind of tests have they done and what was the diagnosis they gave you. I am wondering why they gave him a time of 6-9. We don’t go by times either. Guess we are kind of rogue, but we like it that way. The ONC should at least explain to you if dad is sick from the infection or the CC. My very best to you and your family and please keep us posted.Hi Alison, Sorry to hear of your dad’s diagnosis. My husband is 59 and has inoperable stage 4 with mets to liver and bones. The prognosis is not good but we are doing chemo and he is responding well. He is doing better now than 2 months ago. Not everyone responds to chemo but some do! How old is your Dad? I would get a second opinion. Have they tried something for his nausea? Sounds like they could offer more help.
My husband also does naturopathic support which we have been very pleased with. I wish you all the best.
NancyAlison,
I’m so sorry your dad has been diagnosed with bile duct cancer. It sucks! That being said, I was diagnosed July 09 with an inoperable Klastin tumor and given 3-14 months max to live. During the first year I was hospitalized 3 times. Two of those times were with “infections”. For me they were blood infections. Infections seem to be a common problem with cc. Have they taken blood cultures? Every time I’ve been hospitalized I’ve had terrible nausea. The 3rd hospitalization was because my stent had blocked and bile was building up in my system. Your dad’s total bilirubin count should probably be below 1.5 if the bile is flowing properly. (Doctors my vary a little on this).
Where are you being treated? It’s important to have a doctor who has experience with bile duct cancer. I had to go out of state to find this, but was able to get an insurance referral as this is a rare cancer and the doctors/hospitals in our network did not have experience treating it.
I do not know how your father’s journey will go. It seems to take different twists and turns for all of us. I can tell you that I am now past 18 months and feeling very good. My doctors have told me I’ve beaten the odds. I have no pain and no symptoms. The tumor is still there wrapped around my portal vein with hepatic artery involvement. Half my liver is gone because of the lack of blood flow, but right now I don’t even feel like I really even have cancer.
May God be with you and your family.
Kathy
My Dad was sadly diagnosed just 3 weeks ago with cancer of the bile duct. He was taken into hospital last week and it transpitres he has an infection, which they believe is as a result of the plastic stent they inserted into his bile duct. It has now been removed. They are to insert another stent this week. His temperature is going up and down, he feels terribly nauseaus and generally rotten at times. He has not got much of an appetite as he feels full all the time, and struggles to eat much.
His prognosis is only 6-9 months as it is inoperable and I don’t think he will have chemo as they seem to think it wont make much difference to his longeivity.
Are the above symptoms, conditions what we can expect now? This is all new to us as a family and having sort of come to terms with the heartbreaking news we are now hungry for information so as to help manage ours, our childrens and the grandchildrens expectations etc.
If someone could help shed some light we would be hugely grateful!
Thank you
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