ali
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Hi everyone,
Hope everyone is doing well. Molly May, I had a chance to read your other posts and am inspired by how much of a fighter you are. I hope you continue to have the strength to fight this awful disease.
Update on my mom: over the last few months she has yo-yo’ed back and forth between feeling okay and feeling awful. She spent the better part of the last 9 weeks in the hematology unit at the hospital. Basically, she has recurring sepsis risk from ongoing bacterial blood infections. The doctors have done a good job of containing liver abscesses from growing further, but her original operating surgeon suspects that it’s likely going to be a problem for the rest of her life due to bile back-up that will never go away.
In addition to that risk, my mother has lost a a lot of weight as she has trouble getting necessary nutrition. We found out yesterday through another endoscopy yesterday that there is partial blockage at the site of where duodenum stent she had been inserted. That obstruction makes sense given she started to have trouble keeping food down again. Because the stent can’t be removed (duodenum stents are permanent) and because she is very weak, doctors are likely to rule out surgery. I imagine our best hope is that another stent is inserted within the existing one or perhaps she can have that endoscopic procedure for the gastric bypass. That has yet to be offered to us.
I am at a loss of ideas of what the next steps are. I wanted to share my story to hear if there are others with the same experiences?
Thank you everyone,
Ali
Hi Kasia and Fay,
Thank you very much for your prompt replies.
Kasia: I’m terribly sorry to hear about your diagnosis. That is an incredible story of persistence and I am glad you were able to eventually get a resection. The resection did wonders for my mom and has greatly extended her life as well as her quality of life. It’s a lesson in never settling with the first opinion. I wish you the best of luck and hope you will remain disease-free given the great outcome (negative margins on what sounds like a very successful surgery). Duly noted about the MRI; it’s been a while since one was conducted. That is something we will discuss when we meet with the oncologist next.
Fay: I’m very, very sorry for your loss. Cholangiocarcinoma is such a terrible cancer and it’s so painful to see loved ones taken away from us so quickly. I’m unhappy to hear that the system failed your mother given the evidence that adjuvant therapy on positive margins has better outcomes. I myself live in Vancouver and have been traveling back and forth between here and Calgary as the rest of my family members have been taking care of my mom. Like you say, we have to be more vigilant as it’s easy to dismiss investigations given the terminal aspects of this cancer. The liver CT is also a great recommendation which I’ll ask about.
Thank you so much,
Ali
