Thank you all for your kind thoughts. My journey started the middle of July of this year. My husband was in & out of the ER 5 times before his first hospitalization. They thought it was just a kidney problem & put in a stent. He then went back in with a blood clot. Blood thinners were not working & his blood test were really strange. He then went back in again with more blood clots even tho' he was on the thinners & they put in a filter to keep any more from getting to his lungs. They still had no idea of what was going on, however, were now suspecting possible a type of cancer was causing all the strange symptoms & reactions he was having. The stent also was not working so at that point they had to put in a tube to one kidney. He became weaker & more fatigued, had no appetite & when he came home one more time the last week of August he was really trying to eat etc. & started vomiting. He was home from Friday night until Sunday afternoon at which time I had to take him back to the hospital. He had every test, scan etc. imaginable. Nothing definitive was found. They finally took a biopsy of his liver as each test showed rapid changes from normal to cysts to leisons. That Tuesday they also did a PET scan which finally determined (along with the results of the biopsy) that he had this terrible cancer. At that point we were told he had atleast 6 months even without treatment, however they were still considering Chemo to atleast try to stop it from going further. He then started to become so weak & run down from not being able to eat etc. that they felt Chemo would not help as it would make him even sicker. They considered a feeding tube or port, but that too would have possibly been too hard on him. By the following Monday they told us that he may only have a few days, weeks or a month at the most. He died at 9AM the next morning. Only one week after they had the positive diagnosis. I spent that last week at his side & one of our sons spent the last night there with us. One of us at each side of the bed. It was a very intense 7 weeks & in the end there was nothing anyone could do. Atleast he is now in a better place & at peace. Watching the progression of this terrible disease & not knowing what was happening was so very hard on all of us. Now we are left to try to pick up the pieces. I will add what a friend of my sister's who is a 2nd year med student sent us:
very sorry to hear about your brother in law
>> cholangiocarcinoma is a cancer of the bile ducts- vessels that drain
>> bile into and out of the liver. it is a weird tumor in that it is
>> very silent until it is large enough to impede on other organs around
>> it (ie. liver, gallbladder, pancrease, etc). by the time it
>> manifests itself in symptoms such as turning yellow, abdominal pain,
>> itching, vomting, nausea, and things like that, it is often spread to
>> a point where it is not able to be resectable by sugery, which is the
>> only definitive cure. thus, a lot of the management is by palliative
>> measures and pain management because of the late diagnosis.
>> there is a higher prevalence in asia due to some kind of endemic
>> chronic infection associated with liver flukes. other risks factors
>> include chronic hepatitis, HIV and ulcerative colitis (a form of IBS).
>> it is hard to pinpoint any one of these down because many people with
>> the above don't develop the cancer. the fact that he had a parasitic
>> infection may have contributed to the development of the cancer, but i
>> would not say that it is the sole cause. the majority of people
>> diagnosed with cholangiocarcinoma have no known risk factors.
>> as a family, i would make sure he is in sufficient pain control- if
>> this means very high doses of pain meds, that is ok. if he is still
>> lucid, he will eventually want to stop eating and stop drinking
>> fluids- this is alarming because it is against our thoughts that food
>> = comfort but this is normal and very characteristic of the final
>> stages of death. hydrate the mouth with small ice chips if he cannot
>> drink fluids. in the last days, he may spike a fever. this is also
>> normal. there may be secretions in the mouth that towards the end
>> will accumulate because the swallowing reflex is diminished and this
>> will make a rattling noise. these secretions can be sucked out of the
>> mouth if necessary.
>> i know this is all hard to hear but i wanted to write it out in case
>> the doctors didn't say anything about what to expect.
I know this is harsh & hard to read, but I wish I had know all of this as his illness progressed. This is exactly how it went. It would have made it a little easier to understand. Hopefully it will help others. Sorry this post is so long, but hopefully it will help others to try understand & cope with this horrifying disease. Again, Thanks to all of you here & I am so gratefully to have found you.
"One Day At A Time"