Bile duct cancer

A support group for anyone affected by bile duct cancer to come together, share experiences, and ask questions.

Symptoms and stages.... What to expect with my father.

Sayahopes
Posted by

Hi there,

I have been reading the posts on this site since my father was diagnosed a few months ago after a visit found him jaundice and we took him to the hospital and a week later found out he had stage 3 / 4 bile duct cancer which had invaded lymph nodes and his liver and some surrounding areas. He had not been feeling well for months prior going to Dr and Dr with test after test but no one could pinpoint what it was. Thankful for the diagnosis to know what it was but crestfallen at the same time.

He is I guess I should say was a spry 91 year old who was extremely active walked all of the time and in the summer golfed frequently. This has changed of course as he is having trouble breathing and in discomfort and has lost great deal of weight. Now of course we know this is due to the cancer.

He is has a good spirit and has always been in good health his oncologist said he can offer him palliative chemotherapy to at least slow down progression and give him an extra month or two of quality of life. We decided to go that route since my father does not wish any extraordinary means in the end.

He was just about to enter his third cycle of palliative chemo when things are continuing to get a lot worse he's breathing is labored he is confused he gets very shaky and certainly doesn't want to eat at all. He is taking a couple souls and today when I was with him so that my sister who lives with him could go to work, (she and I are tag-teaming caring for him), he was so weak after I put them back to bed for a rest and give him some more oxygen he couldn't even get back out of bed and has been resting most of the day.

He shiver so much and cannot get warm.

I guess what I'm looking for here is is this normal what would be the progression of this horrible disease?

My sister and I reassure my father how wonderful he is how much we love him and my nephew who lives with him as well has been terrific with him especially given the fact that he is just about 16 years old his other grandchildren and great-grandchildren visit him and tell him the same and my brother who lives in a different state calld him frequently.

I'm just trying to get a handle on what's to come. From what it looks like it is similar to what I experienced with my late husband who had Parkinson's with Lewy Body syndrome at least in terms of the confusion and some of the following and perhaps things that he might say and not mean because it's really the disease and not him.

Any support or Insight anyone can offer sure would be greatly appreciated. We just didn't expect him to deteriorate this quickly.

Hambat
Posted by

Hi,

I am so sorry to hear about your father.

My 47 year old brother was diagnosed with cholangiocarcenoma in July and has spent a huge amount of time in hospital with various problems, especially stents. He should have started chemotherapy but a wound from an operation to attempt to remove the tumour, which failed, never healed rendering chemo a non starter. He is experiencing the same symptoms as your father and I too would be really grateful to read any replies to your post as I can find lots of information about this cancer, but it's harder to find out how it affects someone towards the end.

Yotababy
Posted by

My father developed those same symptoms; shaking, loss of oxygens, etc. Since, we knew it had traveled through his body, we knew the symptoms of those last days meant that it was in his brain. I pray that your dad has a living will. My dad had redone his in December before his diagnosis  and it told us not to do anything if he was terminally ill. The last ten days, he lost a different bodily function EVERYDAY. That is the fastest moving cancer that I've ever seen. It changed his behavior the last few days. I, too, joined this site to see what people posted about the last days. After losing the ability to do anything, he slept the last three days in peace with some pain  meds administered under his tongue by hospice. He couldn't even swallow.

Love.My.Mum.
Posted by

Oh my goodness I have just read your post, and I could have written it, The only difference is it's my Mum and she is 85. She hasn't been offered any treatment at all, due to her age the oncologist thinks she's best left. My mum refuses to believe she has cancer as she was feeling so much better after having a stent fitted, she is eating, and looks really well, other than losing so much weight.  I spoke to her last night however and she has been suffering with extreme shivers, and can't get warm. like your Dad, Mum had a bought of jaundice and I  took her to the Doctors, she was admitted to hospital immediately, where she stayed for 5 days then was sent home. We returned a week later for the results to find out she had cancer of the bile duct, lymph nodes, liver and some surrounding areas .She also hadn't  been feeling well for months. The hospital have told us they don't need to see us for another 4 months, unless obviously we need to take her in. So I'm struggling to know what the stages she will progress through are.

Sayahopes
Posted by

Hi there my dear one,

I am so sorry it has taken a while for me to get back with you, but caring for my father has been a lot as has the daily life.

My father is nearing the 3 month mark since his DX. 

 

He has deteriorated rapidly and has had 3 bouts of extreme confusion and my sister and I could not wake him. As it turned out this was due to low blood sugar. He is a diabetic and has always kept is diabetes in check but it dipped so low he had to have the paramedics called and given a sugar serum of D something which was amazing as this brought him around. He now is no longer to take his diabetic meds.

He has a DNR in place and a living will with no extra ordinary measures and didn’t want to be taken to the hospital.

He now is so weak it is a challenge to get out to he appointments for extra hydration, so the visiting nurses come in 1x a week to do this.

We did get him to get another CT scan and to see his oncologist about 2 weeks ago and we were told his cancer has spread to other lymph node and behind his back and spine and other areas and we were told half of the Drs. Patients would not have lasted this long.

The chemo Gemzar he was on was not working although this was just palliative and to help keep the cancer from growing more rapidly and give him more quality of the life he does have left.

So we were told this was to stop and given the choice of hospice or another chemo regimen of a pill to be given 5x a week orally or 2x IV. He chose 5x week. But then a few days later and before he could try this (by the way there are side effects of diarrhea and hand burning and peeling) he had another sugar coma we had to deal with and then his sodium level fell and just this weekend we had to take him to the ER because as it turned out he has developed a UTI ( urinary tract infection)

At this point we are sure he isn’t going to be able to be strong enough for the other chemo and will be starting in home hospice.

He is now down to about 128lbs and can barely eat any food. Maybe some soup. My sister does make him a smoothie of yogurt and fruit and ensure but he will only have a couple oz.

He is sleeping more and more and up for perhaps 6 to 8 hours during the day and this doesn’t include his napping.

His mood is grumpy grouchy, and he gets very upset with my sister and I and yells and gets upset with us. I do understand this is the illness and I can’t imagine what this may be like for a man who was once so independent and active even at his age or 91.

I am no stranger to some of this as I stated in my 1st post I cared for my husband who had/died of Parkinson’s with Lewy Bodies and in the end would have auditory and visual hallucinations and would get so very angry and agitated.

It is puzzling to me that his vitals seem to be as strong as they are, but we are happy about this.

I just don’t know what to expect and this is the hardest part for my sister and I.

I also don’t know how much longer he can keep not eating.

Also, I want to thank everyone here for having a place for us to come and just pour our hearts out.

As a psychotherapist, I know how critical it is to have support.

We also need to be mindful to practice some self care so we can be there for those we care for and those family in the what I call the ripple the other family members.

Be Gently and have a tender day,

Saya