Topic: What to expect

My husband was doagnosed 01/11/05 and after a failed op left hospital on 13/12/05. He was very ill in hospital, had no appetite or energy and lost a lot of weight.
Since he has been home ( 6 weeks) he has gone from strength to strength. Today he complaoins of tiredness and had a bout of shivering in the afternoon and though he ate a reasonable dinner,didn't have quite the same appetite.

I am worried that he is about to have a relapse and I realise that I have absolutley no idea what to expect. At the moment he is not having any treatment.

Can anyone who had been diagnosed for longer tell me, how the disease develops. Do you have good periods and then relapses. Do you come out of the relapses and return to where you where before? Is there any pattern or warning that you are in for a bad period and can you do anything to avert it?

I feel I am walking in a fog with no idea what is out there.

Re: What to expect

I'm sorry that your husband is not feeling well.  I wanted to reply because my brother Mark who also has cholangiocarcinoma  went through a failed operation in November.  It seemed to take quite a while for him to get feeling better.  It seems that the surgery and the cancer take a lot out of you.

I don't know a whole lot, but it seems from talking to others with this cancer that after a  while you start to see a pattern.  Sometimes feeling good, other times in pain, with nausea etc. 

My brother went through a pretty hard time after the operation, then about a month of feeling good, then the last week he was not feeling great again.  The doctors seem to say that it depends on the tumors.  Mark has a large tumor on his liver which causes pain and nausea, as well as other tumors on his omentum.  Sometimes the tumors cause the nausea and pain, other times there doesn't seem to be any.  It seems that cancer is a puzzle.

I would stay in close touch with your doctor.  They always say that if he isn't feeling good he should come in.  There are things they can do to help.

I hope this helps.  Good luck.
Kelley

Re: What to expect

patricia,
I am really sorry to hear that your husband is feeling unwell again, this must be a very anxious time for you, sometimes as carers i think we feel so helpless.  It does not seem right to me that your husband is not getting treatment of any sort.  PDT does sound very promising, also some combinations of chemo have been holding the condition stable and easing symptoms, I think you need to press your Drs for some action to help ease any discomfort that your husband is experiencing. 

thinking of you both

Jules

Re: What to expect

Thank you Kelley and Jules.
Yesterday evening he took his temperature, it was 38 and this morning it was 36, so it seems that yesterday he had a slight temperature which seems to have gone today.

My GP told us to take the temperature every morning to get some forewarning of infection and get anti biotics to deal with it asap.

My husband's tumour is small. 2cms on Nov and he has metastatses on the omentum.
Does anyone know the speed at which these tumours grow or is it different for different individuals?

I wish everyone well and appreciate your comments and concern.

Patricia
Jules did you get the recipe?

Re: What to expect

Patricia,

my Dad often has a temperature in the evening, he has been told that this is due to infection.  he has started a course of antibiotics.  My Dad has been symptomatic for a year now.  Throughout he has had problems with temperature 'spikes' - normally worse in the evening, he feels rough with the temperature and often experiences nausea and appetite loss with it, he takes paracetamol and goes to bed when he feels like this.  It does pass, the liver amongst many other fuctions regulates body temperature as i'm sure you are probably aware - i don't know whether this is relevant.  as for speed of growth i think this depends on different factors - ie whether the tumor is hepatic (began growing outside the liver) or intrahepatic (contained within the liver) i think i am right in saying that intrahepatic is more aggressive.  I think in general that it is very hard to say how the disease effects individuals (as we have discussed before in relation to statistics) however i can understand that you need some idea of what to expect.  I have tried to steer clear of this information as i am trying to focus on a cure.  last year i was told to go away, accept what was happening and just make the most of 'the few months you have with your father' - had i taken this advice my dad would not be here now, i think that it is just a case of finding a dr prepared to make the effort to help and who specialises in bilary/liver surgery and medicine.  Your husband's tumor is small, forgive my ignorance - is the omentum part of the bowel? - have you sought a second opinion?

keep strong

jules

Re: What to expect

Kelly,

How is your brother doing? - is he recieving chemotherapy? - do you think that he could be a candidate for surgery in the future if the tumors shrink?  It must be a great strength to him that he has such a supportive family all rooting for him.  You can go round in circles with internet research as i know - i find this site very informative, i feel as though we are all fighting it together, it is a great comfort.

jules