December 22, 2018 at 2:05 pm #97928bglassModerator
Thank you for posting on how your mother is coping after her treatment. It is concerning her doctors are having difficulty keeping her sepsis and gastric blockage issues under good control. From what you describe, this situation is impairing her quality of life and it must be discouraging not to be receiving better answers.
I am hoping other board readers who have encountered similar situations have advice to offer. In a general sense, when a patient is not getting relief, it is important to keep pushing the doctors to find a solution. A second opinion would be an option as well. I am also wondering if at some point, a palliative care specialist might be helpful to bring in, to help address nutrition and any pain concerns. This may be an appropriate question to ask your mother’s gastroenterologist.
I hope your mother’s doctors find solutions to her concerns and that she feels better soon.
Take care, regards, MaryDecember 21, 2018 at 11:56 am #97927
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,
AliJune 25, 2018 at 7:34 am #97194molly_mayParticipant
I ‘ve had a stent for 18 mths, and it does change what and how much you are able to eat. Your stomach still empties slowly, so you do need to eat very small meals. I could usually do a larger breakfast, but then a smaller lunch, and dinner was maybe just a glass of milk. I was able to eat like a spinach omelet on toast, provided I used lots of butter so the toast was soft. I could do cocoa and toast, if I dip the toast in the cocoa. For lunch I could do a couple pieces of string cheese, and applesauce, or a spinach salad with tomatoes, cheese and hard boiled egg. You need to cut it into small pieces and chew very well. I also did a lot of juice, I really don’t like smoothies, but that’s an option, as is soups, spaghetti, and any kind of hot dish.
Basically, its take small bites and chew really well. My problem was that I could not eat enough to keep my weight up, so I got a feeding tube that goes through the stent into my intestines. I am still able to eat during the day, but run the feedings at night. This way I gained back all of the weight I had lost, and am able to maintain my weight, while staying active.
A few months ago, the stent started to migrate and fracture leaving a “mangled, fractured stent with open ends”, basically a mangled mess of metal in my stomach. My stent is a metal, uncovered stent that cannot be removed without major Whipple like surgery. I just had a gastric bypass done endoscopically, which means a new outlet between my stomach and intestine, via a new covered stent. While this did not require surgery, if your Mom is able to have a gastric bypass (surgically), that would probably be your best long term option. Supposedly, I will be able to eat normal with my new stent, but that still remains to be seen.
Keep asking questions and keep pushing for answers.
MollyJune 24, 2018 at 4:22 pm #97192
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,
AliJune 24, 2018 at 2:43 pm #97188FayParticipant
I had intended to stay away from anything related to cholangio since I lost my mother less than 2 months ago and am trying to piece myself together….But I got an email with your posting (not sure how that happened but glad it did) and your story resonated with me and I had to reach out to you because I want your mother to have a happy and disease free life;)
Like you, my mother was diagnosed with perihilar cholangio and a golf ball tumor was resected. Her margins were positive throughout and she also had a positive lymph node. Unlike your mother’s case, my mother’s surgery was not well planned out and the oncologist refused to give her any adjuvant treatment. My mom lived in Vancouver and we were supposedly going to ‘the’ place to be for anything related to cancer. I am SO HAPPY that your mother had a much more comprehensive resection, and received adjuvant treatment post-op. I am also thrilled that they are trying hard to figure out what is going on. YOU are being a fantastic advocate, so keep asking the questions and keep doing what you are doing. You’re amazing!!!….now, to answer one of your questions, this was our experience…
Cholangio is not a disease that necessarily shows up on CT early on. In fact, my mother had disease recurrence with normal tumor markers and no objective evidence of disease on her abdominal CT scan. However, she was in a lot of pain. My sister and I were losing it with the oncologist since her resection did not achieve clean margins and the oncologist refused to give her any adjuvant treatment – so to my sister and I, it was clear it was the disease that was causing the pain. But we had a hard time proving our point when her CT abdominal and tumor markers were normal………..With cholangio, it’s best to assume the worst and put pressure on the providers to move things along quickly. What ended up finally diagnosing my mother’s recurrence was a liver-pancreas protocol CT scan (not a standard abdominal CT) with IV contrast. I’m sharing this, because I don’t know if your mom would benefit from this, but think it’s worth asking about…
Great job with the foundation one testing! I’m thrilled you did that. I hope and pray that things turn out to be unrelated to the cancer. But it’s important to be hyper vigilant regardless. And to pay attention to her symptoms, even if there are no concerning objective findings.
Sending much love to you and your mother,
June 23, 2018 at 10:29 pm #97187KasiaParticipant
- This reply was modified 2 years, 4 months ago by Fay.
Have they done an MRI or PET scan? Last November, 2017, I was diagnosed with Cholangiocarcinoma and they caught it early while I was in the process of being cleared for knee surgery. The CT scan, which was not liver specific, showed one tumor and a biopsy said Bile Duct cancer. We were ready to do an endoscopy and then laprascopic surgery exploratory. Additionally, the tumor was up against the veina cava vein and they weren’t sure they could do the surgery because of the location. Fortunately, I got a second opinion and the surgeon did not like the original CT scan and ordered another liver specific which then showed an additional tumor. Surgery was then off the table. I then got a third opinion and the Doctor said we should do chemo and if the tumors shrank he would do the surgery. I was sent to an oncologist, the tumors shrank and I was scheduled for surgery. They then did an MRI the week prior to surgery which showed a third small tumor.
The 3rd opinion doctor proceeded with the surgery, 1/2 of the liver was removed margins clear and no lymph node involvement, pathology great. It has been 5 months since surgery, blood work great, feel good and new MRI showed no new tumors etc. However, I am now taking Xeloda oral chemo as a mop up for what might be hanging out in my system and not detectable by scans. My point after my rambling, is that technology for scans does not have the capability to see minute particles so following a successful surgery there still might be something there undetected. Additionally, not all scans are the same. I believe that an MRI gives the best definition and would recommend that your Mom have one.June 23, 2018 at 6:57 pm #97186
Firstly, thank you everyone for the ongoing support in this forum. There is so much love and generosity in such a time of need.
My 64-year-old mother was diagnosed with type 3b perihilar cholangiocarcinoma in Calgary, Canada in October of 2016. The tumor was fortunately detected early through a CT scan and there was no observed metastasis and lymph nodes were clear. My mom underwent surgery and had her left side of her liver removed (which had already shrunk because of the golf ball-sized tumour constriction in the bile duct) along with her gallbladder and left portal vein branch. Unfortunately, the resection margin came back as R1. Over the course of 2017, mom went through adjuvant therapy consisting combination of radiation and Xeloda chemotherapy. We were very fortunate as multiple CT scans came back clean after the therapy. I am unsure but those clean scans may have been a red herring.
Starting in May of this year, mom began feeling severe symptoms of severe stomach pains, bloating and nausea, which eventually turning into vomiting at night. Unfortunately, these issues were misdiagnosed through continued clear CT scans/negative biopsies until a second endoscopy in this revealed a gastric obstruction at the pylorus/duodenum. The doctors have not been able to obtain any biopsies that show cancer. A malignant gastric outlet obstruction is suspected but it’s not confirmed.
A few days ago, mom successfully underwent a stent operation and the surgical oncologist informed us that a bypass surgery is possible if the stent doesn’t prove to be successful. As an aside, we recently sent the original resection sample to FoundationOne for genomics profiling.
Some questions for those who have gone through the same experience:
– Is it common for these infiltrating tumors to not show up on a CT scan? Are there instances where these obstructions may have been caused by something else (H pylori?). I ask because we’ve receive a lot of conflicting information in the last while.
– In the case of gastric obstruction treated with stents, how was quality of life affected? At this point, the doctors have informed us that solid foods may now be out of the question.
Thank you so much again for all the support.
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