Topic: cholangiocarcinoma

hi im new here, i just found out recently my mum as this disease, ive read up a little on it but dnt fully understand the extent, im absolutely devastated especially at the thought of losin her at 52 yrs, she is currently in hospital, after been admitted in with severe jaundice,pain, and weight loss. they av told her there is no cure as it is rare,i am so scared,is there anything i can do to help? i just dnt no wot will happen,how long she will be with us for. thnx for listening to me i feel so lost and alone.

Re: cholangiocarcinoma

carolann-I was in your shoes 1 1/2 years ago.  Father in law admitted with pain, jaundice, anorexia(not eating).  His cancer was classified as stage IV.  That was 19 months ago he is still here now.  Prayer works.  You might have a rough road ahead so stay strong and informed.

Chris

Re: cholangiocarcinoma

carolann-feel free to contact me with any questions or concerns you may have.

Chris

Re: cholangiocarcinoma

they havent sed how progressed the tumour is they sed they cant say, it was yesterday we got the news, and took it really bad, although she as picked up with the eating now. im trying to stay strong for the family, its not easy.

Re: cholangiocarcinoma

cneely7 wrote:

carolann-feel free to contact me with any questions or concerns you may have.

Chris

thank u so much glad i got sum 1 to tlk to about it.

Re: cholangiocarcinoma

ands how is ur father in law doing now?

Re: cholangiocarcinoma

Carolann, I just lost my mother to this and also feel so alone in the world - my heart goes out to you. Just know that there is always hope. She was just diagnosed so you don't know the full details yet - find out if she can get surgery, or chemo, or get more opinions if the doctors aren't coming up with anything. Some people respond amazingly well with treatment. You just have to make sure the docs are on top of it.

But most of all, show her your love and spend every precious minute with her. It's hard to pretend to be strong - I know - so give yourself time to cry and cry when she's not around - and even when she is. I think sometimes I was too strong for my mother and she needed me to cry with her.

Re: cholangiocarcinoma

thnx for ur reply, she got told there is no cure, n she cant av surgery, althought she may b able to av chemo,its the initial shock that devastates,i av spent the past wk by her side now she as been transfered hospitals, makes it harder to visit, i feel so helpless, will keep the site updated with the progress, n hopefully look up to the future, sorry to hear bout ur loss too.

Re: cholangiocarcinoma

Thanks, Carolann. Your mother is very young so there may still be some hope!! Where are you located? Some hospitals and doctors aren't familiar with the disease and you may have more of a chance if you get to a place where they may have more options, especially if it hasn't spread. But I know there's only so much you can do - so don't wear yourself down! I'm here to talk if you ever need it.

Re: cholangiocarcinoma

thnx so much j mneypenny where located s yorks, shes at sheffield at the moment, were not getting to find out much of wots happening the only thing we no is that shes going into theatre fri to av bile duct stretched n sumthing out in. then there letting her home.

Re: cholangiocarcinoma

j mney penny may i ask how long ur mum survived it, as ive read that most ppl live 12-18 mnths

Re: cholangiocarcinoma

Hya Carolann Just read your mail.
So sorry about your mom.
  However. I am in Birmingham and lost my son.
  Like jmoneypenny advise that you get as much information of this site as you are
   able at this time. If need be get second or even third opinions but make sure the docs and you have as much information  as possible. Some on this site have spoke about a prof. lodge at leeds. ?
    I found that my biggest concern with alan was how to stop him losing the weight that he had so quickly. There are lots of threads on here about food and vitamins etc.

At the time alan was so ill I offered to pay for some scans etc but was advised not to do this by the hospital. I now wished we had gone ahead and got them much quicker
as time was of the essence.
If you need to speak or mail someone please feel free to contact me by mail and I will give you my number and help in any way possible. All of my best wishes go to you and yours.
love and light  Alans Mom

U.K.Member

Re: cholangiocarcinoma

Carolann! I am sorry you are having such a hard time! Please ask your Mum's GP to get her refered to a Professor Peter Lodge in Leeds! He can't help MY Mum, but he may be able to help yours! I have been told MANY times that he is THE MAN to see if you are in UK, and lucky you, he is not far away! Several people on this site have had dealings with him, and he is very experienced in CC............
You can call his Secretary direct on 0113 2064890 if you want to ask her how to go about getting a referal.
The address for your Mum's Gp to write the referal to is
FAO Professor Lodges Secretary
GRound Floor Lincoln Wing
St.James Hospital
Beckett Street
Leeds LS9 7TF.

The lady was very helpful when I spoke to her.
I so relate to your panic and fear! I aws the same when my Mum was diagnosed a year ago!
Best wishes to both of you.

Re: cholangiocarcinoma

thnku so much kate, im trying to get as much help n information i can get, its a pretty numb moment for us all, the more i no bout the disease the better i think i will feel, its not knowin things that makes it harder to cope with. good luck bestwishes.

Re: cholangiocarcinoma

thnk u terressa, thats helped alot, feel much calmer. sorry bout ur loss, hope theres a light at the end of the tunnel.

Re: cholangiocarcinoma

Carolann - I see that you're in the UK and already the UK people have gotten right on track, giving you the information you need. I'm in the US so couldn't help you with that stuff - I'm so glad there are such knowledgeable and helpful people on this board who CAN help you with all the practical details. I should have realized you were in the UK since it was 5 in the morning here! I just can't sleep since my mother passed.

Anyway, keep in mind that everyone's case is different with this horrible cancer. Some people live only 2 months - like my mother - and some people live 8 years or more after diagnosis (there are a few miracle stories on this forum, lots of people still going after years, especially if they're young when diagnosed). The doctors tell everyone they have a year, maybe 2, and everyone's different. If they're putting a stent in her bile duct so that it's not blocked, that seems to work wonders for many people and gives them a lot more time and a lot more quality of life.  Right now you still have hope - so cling on to that or you'll go crazy!

Best of luck and sorry I didn't respond sooner, but I had to go to bed eventually- Joyce

Re: cholangiocarcinoma

thnx hun, for ur reply, it is a stint  my mum is aving put in t mz, so do u no how that works plz, n how she will feel.

Re: cholangiocarcinoma

Hya Carolann it is 5.43/pm thursday now.
Good luck to you and your mom tomorrow for stent insertion.
Hopefully your mom will not feel too bad.
You will feel dazed and numbed by all of these things at the moment.
However, if need be personally I would either speak to docs over the weekend and find out as much as possible.
OR E-MAIL, FAX or telephone the number given for prof lodge etc.
Whilst I know most doctors are quite quick many in this country are not informed enough concerning this type of cancer and tend to take too much time.
There is no harm in making enquiries and having more information and more options.

Every little helps and please make use of all of us on this site as there are some marvellous stories. love and light  Teresa

U.K.Member

Re: cholangiocarcinoma

once again thnk u so much, 4 ur help and support, how r u feeling? they say times a healer, im glad to av found this site it is of much help.

Re: cholangiocarcinoma

once again thnk u so much, 4 ur help and support, how r u feeling? they say times a healer, im glad to av found this site it is of much help.

Re: cholangiocarcinoma

well its been  a long day t day reading up on so many touching stories that vary in different ways, thnx 4 all ur posts, support and care, hope everything keeps on the right tracks for each n every 1, of u, n mayb 1 day, this beast will be sorted once and for all, any way t/c all. post soon.

Re: cholangiocarcinoma

Carolan mate!
As far as I'm aware, the insertion of a stent is not a big worry in itself. My Mum had to have one put in last year before she had her resection (operation to remove the tumour), and it was quick easy and painless. I hope the Docs have explained this to you. The stent should allow the bile duct to open again and relieve her jaundice, which is caused by the bile not being able to flow through the bile duct, because the tumour constricts it.
I am going to PM you Carolann.

Re: cholangiocarcinoma

Carolann-

My father in law is currently hospitalized with a quite serious infection, in addition to edema in his extremities and a few other complications.  We are hoping to have him back home soon.

Thanks for asking,

Chris

Re: cholangiocarcinoma

Carolann-

Stents have worked wonders for my father in law.  As with any procedure involving a foreign object being placed in the body, there is a risk of infection.  The stent will most likely need to be replaced after time-the frequency is usually determined by whether the stent is metal or plastic.

Re: cholangiocarcinoma

sorry to hear that chris fingers crossed for u, am sure he will be home soon hes in the rite place, prayers 4 u and urs.