anrena18

Hey Maria,

I think Tom maybe right. They possibly wanted your mom’s bili levels to drop before taking any action. My mom’s bili was at 23, and they needed to “decompress” the bile ducts with stents before they would do surgery. I would definitely go back to UCSF and inquire more especially at such a prestigious research facility and hospital, I doubt they will refuse help for you mom.

Serena

Hi guys,
I just discovered this thread after posting a question about adjuvant chemo in another post!
My mom is 11 weeks post-op after liver resection and bile duct reconstruction. We finally met with oncologist yesterday and doctor wants my mom to do 6 months of Gemzar with weekly infusions. They still want to give my mom a few more weeks of recovery because she had multiple complications since her surgery. I see that many do a regimen of both Gem and Cis or Gem/ox – has anyone every only done Gemzar alone and for 6 months straight every week? The oncologist didn’t make a real compelling argument for my mom to do chemo – she just said it decreases chance of it coming back by maybe 5%. Hmm.. as soon as she said that I knew my mom would lean towards no chemo. I don’t want my mom to have any “what if’s” and I want my mom to do everything she can to prevent this from recurring, but I know the decision is ultimately up to her.. sigh. I”m hoping a second opinion will convince my mom. She’s very hesitant to start, not only because of the side effects, but because she’s just starting to feel “normal” again and get her energy back and slowly start to eat more and doesn’t want to ruin her progression with the start of chemo.
This site has answered so many of my questions already and I am appreciative of any feedback that I can get. I’m glad I found such a great place to voice my concerns and not feel so alone.

Serena

I’m sorry to hear about your dad. Definitely get a second opinion; just because one surgeon says its inoperable, it doesn’t mean there isn’t another surgeon who can’t do it. Ask if cyberknife is an option. Cyberknife can possibly help shrink the tumor and your dad may be eligible for surgery later on. This site is very helpful and I’m sure there are others who can offer more suggestions or advice on what to ask the doctors.

Hello Lainy and thank you for the warm welcome! YIPEE is right and I am very grateful that my mom was able to have the surgery. She had a left hepatic lobectomy and roux-en-y. She was seen at Keck Medical Center of USC in Los Angeles and our doctor is Robert R. Selby. He has been an amazing doctor and his team is just as great. They have not referred us to an oncologist yet because they said they wanted my mom to recover from the surgery first.. Her surgery was on 7/11 and due to multiple complications she remained in the hospital until 8/12. Poor mom, she suffered a lot. A few days after her surgery she developed a bile leak and interventional radiology had to place a drain to remove the excess bile. A few days later mom developed an infection from her PICC line.. on top of that she also suffered from an ileus and had to have an NG tube inserted twice. Another week later my mom got another infection from the bile leak. They said the bile leak was also aggravating the stomach and contributing to the ileus. We are finally home and mom is still in recovery mode. So as of now we do not know what the next steps are. These discussion groups are helping me gain some insight. I feel comforted knowing that I am not alone, but at the same time I feel sad that there are others who have gone thru this.. My mom’s recovery has been a roller coaster as she is not back to her old self yet. I miss her smile and her vivacious energy. I thought being back at home would make her feel better but I see how anxious and depressed she is.. Her appetite is a major concern right now.. she does not want to eat much and she’s worried she will never get it back.. and of course she is extremely tired all the time. I’m still searching on this forum to see if others had experienced the same thing. If anyone can give me some insight as to what recovery will be like for the next few months, I would really appreciate it. My mom also still has her bile drain in.. I’m wondering if others went home with it to and how long did it take before they removed it?
Of course, I will also do my part and continue searching previous threads It is really nice to know there is a group of people who are open and willing to share their experiences, thoughts, and advice. I hope I can contribute to this group and help others as well.

Serena