Mums just died from Cholangiocarcinoma

This is so familiar. My Mum died last August about 1 hour after diagnosis. She'd been ill for just 3 weeks, just turned yellow and was terribly sick. She'd been feverish and unwell for a while but it was put down to her diabetes and diet. once yellow, endless test reassured her one week before her death that it was nothing sinister and probably gall stones. Then it escalated when they tried to fix them....she had stents put in to drain the bile, she had lost her dignity, she was scared and still we had no diagnosis. This lady had graduated just 2 years before in History at the age of 66. The itching of her skin was the worst thing, drove her insane. Then one day without warning her consultant tyurned up and told her she had just days left. She died minutes later - they believe from a massive heart attack. I didn't have a PM - she'd been through enough. This was a devestating and cruel death. I too have searched for answers but there are none - i hope you find a way to cope - one year on I still grieve for the mother who didn't deserve such a terrible end.

Don't know if either one of you will see this after 5 years but my mom, in the US, had a similar story. She attended my daughter's high school graduation in June, in July she was getting so itchy she was going crazy...tried every product imaginable! Then, she turned yellow. Went to someone. He put a stent in and broke through a tumor - which wasn't great - to relieve the jaundice. In September, 2010 turning 80 years old the day of surgery she had a Whipple. The tumor was contained and with the whipple she had so much removed. It did effect a few lymph nodes. She struggled to come back. I relocated to be closer. She was clean (via PET scan and blood work until the following June but she never felt great. Then, doctors and hospitals (3) screwed up one after another, injuring her in the worst ways, traumatic for her and our family. She was in agony because of medical errors and died a horrific long, painful death and even hospice did my mother a terrible disservice. I feel like we ended up with Post traumatic stress with what we all endured with my mom. My poor 82 year old dad...as well. This is a dreadful disease! My mom was on Premarin for 27 years! Not sure what the correlation is. She also had terrible back aches and indigestion for at least 1 - 2 years.

Common denominator? I received a medication for high cholesterol. M y stupidest decision was to take the despite the fact that I knew there is no point to take it, but it can destroy the liver. In 3 weeks I was in the emergency room with terrible pain. I received a med for 6 months. At the end they did ct scan. I was told that they are seeing 1 cm something on my liver and my bile duct is dilated, but I am fine. They never followed up on it. Last year on Juy 3rd I had a mini stroke. I recovered in two days, but I was diagnosed with intrahepatic cholingiocarcinoma. I had a huge tumor in my liver. I had no cancer in any other organ, but the last pet scan showed cancer in lymph nodes. So  I was stage 4.  My oncologist told me because the cancer already spread they cannot do surgery. I started getting chemo. I am doing well. Exercising, doing everything like nothing is going on, except the chemo begin to have an effect on my bone marrow and I am also having low platelets count after chemo and the platelets don't recover in normal time. So now my chemo does have been reduced. I am still bruising easily. My oncologist told me it is not good that they had to lower the dose. "They are just keeping cancer on bay. My tumor got really small. no new lymph nodes. I was on vacation in Europe this Summer for 2 months. I came back feeling completely healthy. Oh well. I don;t know what is in the future, bit this type of cancer does not give many years to us. About the common denominator? never liked alcohol, never drunk, use to smoke but stopped way before my diagnosis. I think mine caused by medication toxicity + environmental factors. My mom was a radiologist. They were aloud to work outside the radiology only after the third semester of their pregnancy. So I “enjoyed” radiation on my first months of my life. I worked as a cardivovascular drug researcher, exposed to drugs, chemical. I also live in the San Francisco bay area/Silicon Valley, where the soil is exposed to chemicals from the computer companies. In the USA most food are exposed to pesticides. I also had a lots of stress in my life. Many deaths among friends and family members. I was taking care of my late husband, then my farther in law and now for the last 15 years of my mother in-law. I could go on.

 

Ii'm very sorry to hear about your mom. My wife has the same cancer. It's been 11 months

Things continue to get worse. The odd thing is that my wife is and always has been a clean

Freak. My wife uses a lot of pinesol. I'll ask her tomorrow about any other things she may have used in the past.

It's hard to watch someone you love succumb to this.

Fred

Hi. I am so sorry to hear about your mum. You & your family have my sincere sympathy in such a tragic loss.

I have not upon my research heard of a woman having it except your mum.

My husband was diagnosed with it in July . At first it was diagnosed as lung cancer but with more testing it was a month later that they found it was cholangio carcinoma, intrahepatic & metastasized to the lungs.

My husband was not a drinker either. His only symptom was being very tired & short of breath. We think he had it for awhile. No one in his family had cancer. I always thought it would be me with cancer in my family. My husband's only option was chemo due to the type of cancer.

He started a treatment of chemo but after 5 weeks they found he had a blood clot, fluid & the cancer in his lungs had spread. It worked on the liver. He went a month without treatment & just started a different chemo .

Only one treatment so far & he's lost a lot of weight, his appetite, very tired, needs oxygen, etc. I'm scared because he isn't good & questioning whether to keep going, quality of life.

We don't know how he got it. The list they have of some reasons , he was not doing any of it.

Again I am so sorry. It was quick for your mum so I'm wondering if she had it earlier on too. It is an awful cancer.

May your wonderful memories bring some comfort & peace. So, so sorry.