kavita1

Hi heartdoc,

My situation unfortunately parallels yours.
My mom had a partial hepatectomy in July 2010, a year ago, with a Roux en Y repair, and she had complications of biliary peritonitis, sepsis and massive intraperitoneal fibrosis which require a second adhesion removal surgery in August 2010. she was finally strong enough to go through 2 months of xeloda and gemzar iv before she started getting episodes of recurrent cholangitis. The horrible part for us has been to watch her suffering.
Last night she went in for what was supposed to be a bile duct repair due to the recurrent cholangitis, and they found a recurrence; a 2 by 2 cm tumour which wasn’t seen on any of her pet CT scans, or her CT or her ultrasounds. Her tumour markers were very low to start with and were coming even lower as they treated her with iv pip tazo and then moved onto imipenem since she developed resistance to the pip tazo. We are in Canada, doing some hybridized care between the US and here. Her oncologist is at the Seattle Cancer Care Center, because that’s where she chooses to be, even though we took her to NYC last fall to memorial Sloan Kettering with Dr Goodman who was great. She offered my mom targeted radiation therapy at that time and stated there is a crucial three month window post resection where you should do something if you’re going to do anything at all. My mom refused at that time, we struggled as a family of physicians, my husband is a radiologist, Dad is a doc, Sis is a doc, and myself albeit we are in different specialties, it truly has been a nightmare for us because as we help our own patients beat and maintain their chronic diseases on a daily basis, we endure the physical and deeply emotional suffering of my mom. Her fighting spirit has deteriorated, and she is post op right now, and doesn’t even know that the so called bile duct stricture as seen on HIDA scan and cholangiogram is actually a 2 cm tumour.

I am awake at 4 am on this forum because this is a site which has been an invaluable resource to myself and my family. My husband keeps asking why they never did any MRIs on her over the last 6 months; she’s had multiple CT scans but he says that MRIs are more sensitive a specific, and can highlight the biliary tree very well. We live thousands of kilometers away from my family, that also makes it hard. I try to keep the hope for my mom, and try to ask her to treat it like a chronic disease, diabetes, asthma, etc. But she has trouble understanding this approach and has a huge amount of comorbid depression, understandably. She has been seein a counsellor and a neuropschiatrist with mixed results.

All she can tell me is ” when I get better, I won’t be depressed anymore.” It is painful and heartbreaking for all of us, but especially her. They say half the battle is psychological, I wish she would take on a more positive and fighting spirit. We all need to be strong and band together for our loved ones.

Goodluck with her progress, I agree you should always seek a second opinion.

Thanks Marions! Well my mom has started her oral Xeloda and goes for her first Gemzar on Monday; we’ll see how she does. They are planning for her to take the regimen from three to six months depending on the results of her follow up PET scan. Her original PET scan from two weeks ago showed no evidence of disease recurrence 5 months post surgery, so we all have our fingers crossed.
Thanks for the kind words, hope everyone has restful holidays!

Hi there everyone! I am new to this website as my mom was diagnosed in June 2010 and had her resection on July8th here in Canada. She had a bunch of complications and had to go back in for adhesion removal secondary to a bile leak that went out of control and sepsis, but she had a slow recovery and is now doing fine, despite lots of abdominal wound pain. My mom is getting ready to start Gemzar/Xeloda for a “close margin”, even though all the margins were negative. She tends to be really sensitive to many medications and can’t even tolerate IV gravol or IV morphine so she is soo worried about starting the chemo and is convinced she will have horrible side effects. I can palpate her fear. As her oldest daughter, it is hard. She is still so young at 58. We are still waiting though, because her med oncologist refuses to do the chemo for her stating there is no evidence for it in her case, so we are waiting for a referral to another oncologist (We got the advice to start the chemo combination at Memorial Sloan Kettering in NYC with Dr. Karyn Goodman, who is a radiation oncologist); she suggested one week Gemzar and one week off with taking oral Xeolda daily (but we are also still waiting for her recommendation letter so we can give it to our doctors here). She is also following up the chemo with focussed respiratory gated radiation therapy for that one close liver edge after three months of chemo…any advice and experiences would be much appreciated! Thanks

I have read the posts above…it is clear you have had experience with the gemzar (aka gemcitibine); thanks for your postings..they are very helpful..especially the heating pad part..we are in Canada and we had to fly for a second opinion to NY because it seemed that all my mom’s doctors weer confused about her diagnosis as well as her management…if anyone else has had liver resection plus chemo and radiation..it would be great to hear from you!

Cheers