New here, Dad diagnosed with CC :(
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I have 1 main tumor in my liver. It had already taken out 2 of 3 hepatic arteries, so I only have 1 left sending blood into liver. And it was wrapped almost completely around my vena cava. So there has never been much chance of surgery, although my surgeon and I discussed it. I then had mets to lymph nodes, also, and the lymph nodes have attached to my pancreas, duodenum, intestines… So now no chance of surgery. And my symptoms?? I had pain from gall stones. My gallbladder was diseased and collapsed. Nothing else.
Radiation sent the treated areas to “sleep” for months before it spread to another lymph node.
I am now on a trial and staying stable, so I’m happy about that.
A suggestion… If you can’t get to other docs, can you send them discs and paperwork so they can guide your onc? That might be a choice, I hope!Lindsay, I don’t think his onc is very familiar with CC, it’s not easy to change DR either. He’s taking 21mg hydromorph and instants throughout the day as well as anti nausea pills. The pills are making him loopy and just managing his pain. My husband son & I are moving into the house with him since I’m there all of the time anyways, hoping that reduces some stress for us.
Kris- was your CC localized?? That is truly amazing!!!
Dear Ahottie, wow, you really have a full plate there, so sorry to hear about both your parents. I am sure that little baby boy is a bright angel in all of this for everyone. You did all the right things and I truly hope the chemo starts working. Dad does not have to be in pain. There are Meds for all of it. Like Kris I hope this ONC has seen quite a few CC patients. It probably is very hard to reach other hospitals where you are. You are an amazing daughter and we are all here for you. Please try to stay very strong and keep us advised as to how your Dad is progressing.
Ahottie,
Welcome to our family. I’m sorry you had to join us. As is often the case, doctors are not familiar enough with cc so it is missed.
We often say we are not born with expiration dates. Doctors don’t know. And I can say that because I was told I probably wouldn’t last 2 years when I was diagnosed. It will be 3 years in Feb. and if you looked at me you wouldn’t know I am “sick”.
I was diagnosed stage 4B with compromised hepatic arteries and almost compromised vena cava. And lymph node involvement, too.
So don’t let those docs tell him WHEN he will die!
I hope you are being seen by someone with experience fighting cc. And if you need to, get another opinion. Find someone who gives your father some hope, please! It’s tough enough to fight cc without having to fight docs, too.I don’t know where to start. We live in Yukon, Canada- my mom has MS and my dad has been diagnosed with non operable CC. I’m an only child so I’ve been become a caregiver, advocate and daughter all rolled into one, I also have a 9 month old son.
My dad started complaining about on/off nausea in January 2013, of course we urged him to go see a dr but he never went. In June after the nausea become pain he went to see his dr, they did blood work and an U/S but everything looked okay. They were sure he had ulcers and started treating them. After months of pain and 25lbs of weight loss they finalły sent a consult for a gastroscopy. He was suffering all of time so I started taking him to the ER, finally one dr ordered a CT scan. The scan reviled a mass on his liver, they moved his gastroscopy (added a colonoscopy) to layer that week. The results came back normal so we had to go for a biopsy. The biopsy couldn’t be done here because of our small hospital. Before we flew to BC my dad passed out but we thought his blood sugars were low because of him not eating. The day after we arrives home y dad was admitted due to severe dehydration and pain crisis. While in hospital his results came back with cholangiocarcinoma. our visit with oncologist was very disappointing, my dad was told he has 6 months. His cancer has spread to his lymph nodes and he has 3 lesions on his liver, his CA19-9 level was 5000. Since he’s inoperable they offered him chemo (gem/cin) 2 on 1 off. We just finished his first round of chemo and it hasn’t been the best experience
I’m just hoping I can keep him motivated enough to stick with it.I am so thankful to have found this group and I’m hoping to pass some of the positivity on to my dad.
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