bile duct reconstruction??
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Hi Karen,
Yes Patty is right, my dad have PDT back in 2008 as his treatment for his inoperable CC after his diagnosis. He had that along with having a metal stent inserted for the jaundice. If I can help in any way with talking about his experiences with PDT then please just ask and I will do what I can. As Patty also says, I did write a bit about my dads experiences with PDT and here is a link to one of my posts about his initial treatment.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=1940
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=2089
Thats good that you were able to talk with Dr Khaleh as I understand that he has done a lot of work and research into PDT for CC. Please let us know how your mum gets and if I can help in any way just ask. One thing I would say is that if your mum goes for PDT then make sure the doctor explains fully the full side effects of the PDT with regards to your mums skin and eye sensitivity to direct light, as this can last for up to 2 months after treatment.
My best wishes to you and your mum,
Gavin
Karen,
I am sorry, I just saw your follow up question to my post about PDT. I also e-mailed you just in case you don’t see this reply.
My mother did not have PDT, I was not aware of it before she had the surgery, I am fuzzy on the details because it has been a few years but I think after her surgery I made a call to Cancer Treatment Center in Zion, IL, and they did not do PDT for cc at that time at that facility, though that may have changed.
Gavin’s father had PDT, if you search the board you will see he has posted quite a bit on his father’s experience.
Patty
Dearest Lainy,
We’ve been here for the month of Nov. but are returning to Seattle for Dec. for a couple of birthdays: our dear little Chloe turns one on the 11th and of course we want to celebrate Jesus’ birth with family and friends. We will be sure to look you up in Jan. Love and blessings back at you,bob
Bob, Bob, Bob & Donna! How good to see your smiling face again! I hope you are doing well and was wondeing if you were back in Phoenix. Love to Donna and take care.
Hi Karen,
As with Ike, I had a recent hepaticojejunostomy. I had the surgery at the end of March which was the second go around – the first was in ’96. A few years ago I began having cholangitis episodes which gradually became more frequent and more severe caused by strictures in the biliary system. We had nearly given up hope of a solution when we discovered Dr. Lawrence Koep at Banner Good Samaritan Hospital in Phoenix. He believed he could successfully rebuild the connections and remove scarring which caused the reduced flow of bile. As Ike has said, the recovery was very dificult and much longer than I had anticipated. For me it also took about three months before I began to function somewhat normally. It was about five months before I felt like I was back. I don’t know if it would be a viable solution for your mother – it is big surgery. I pray that God will lead you to an answer as He did for me.God Bless,
bobPatty – did you Mother have the PDT? Since I read your post this morning I contacted Dr. Michel Kahaleh who was the researcher at UVA doing the PDT and was quoted in the article link you sent. I emailed him, and actually got a phone call from him a few hours later. He told me that he moved himself and his research team from UVA to Weill Cornell Hospital in Manhattan because he is working for the FDA to get the PDT cleared and approved.
He said he would see my Mom and try to help her. We want to go but need a few answers like…will her liver begin functioning “properly” once the tumor is shrunk? Dr. Kahaleh told me that PDT works for CC and did not hesitate in his answer. Let me know if your Mom had it done, if you would. Thank you for your message and support.
KarenIke – thank you for sharing your story, and what the surgery and recovery has been like. I am really doubting that my mother, who is strong for her age of 77 yrs, but is now in a very weak state could handle the biliary reconstruction or much worse, the recovery. My Mom had a liver resection in July 2011 and the liver surgeon told her it would be a 6 month recovery period and she is only at 3 1/2 months, and has been through hell with the drains and bilary issues since. I am glad to hear you are gaining strength each day. God Bless. Thank you for your help.
KarenKaren,
My mom had difficulty recovering from her surgery and was never really able to complete chemotherapy because of the types of issues your mother is having. I would ask the doctor if photodynamic therapy (PDT) is an option, it is non-invasive and the side effects are minimal. There are posts on here about it, see:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3851
This post is about a study on PDT at UVA:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=1455
Patty
To give you some idea about the surgery, I had a Roux-Y hepaticojejunostomy performed in conjunction with gallbladder removal, etc. 3 months ago for what was then suspected Cholangiocarcinoma which turned out to be a stricture in my bile duct caused by an extremely infected gallbladder or Mirizzi syndrome (the infection had eroded into the liver and effected the bile duct. In my reading this can appear very much like Cholangiocarcinoma and the surgical solution is much the same, it also has a high incidence rate of turning cancerous. I am a 42 year old man in good, but not great shape and this surgery was an ordeal, the procedure was performed by doctor Barakat in Houston, it lasted about 6-7 hours, my recovery has been much more difficult than I expected, at least it has been at a slower pace. I spent 5 days in the hospital after the surgery, the first two days are a bit foggy, but involved no eating or drinking, lots of tubes sticking out of me, and a morphine pain pump. The key themes of my recovery can be narrowed down to fatigue and digestive / eating problems. When they first started getting me up and moving the day after the surgery simply sitting in a chair felt like I was running a marathon, it was a month after the surgery before I had the strength to drive myself, and at 6-7 I was returning to work for limited hours (office work), I would have to sit at my desk and rest for about half an hour to recover from the ordeal of driving 15 minutes to work and walking into the office. Now at just under 3 months my strength is getting back closer to normal, I am still far weaker than I would like, but I can at least do normal daily activities like taking out the trash without having to lay down and rest afterward. As far as the digestive side goes, I have a very low tolerance for greasy or fried food, for the first month everything I ate caused a range of digestive issues, and I had no tolerance for greasy foods (even a sandwich with mayo or cheese was too much), this is slowly improving I can now eat limited greasy foods, nothing breaded and fried though without dire digestive results things like a little bacon or cheese, or even stir fried rice, last week a even managed to eat a fried chicken strip, although it did cause a evening of stomach issues, so perhaps it was still too soon. As to your mother’s ability to handle the surgery, I can’t really tell you, other than it is certainly an ordeal, and the recovery is not fast.
Ike
Karen…..I have learned that in order to receive chemotherapy the bilirubin has to drain. This is to prevent the chemo from backing up in your Mom’s system. The question I would ask the physician: Is my Mom strong enough to withstand the surgery? And, that I believe is the real issue here. Karen, my heart goes out to you as the decision with and for your Mom is extremely difficult to make. You should know within the next few days whether the new drains will be efficient enough. In the meantime I wish for your Mom to gain back her strengths.
All my best wishes for a successful resolution to this problem and please stay in touch. We care. Tons of hugs are coming your way.
MarionPCL1029,
Thank you for your help, and the information. It amazes me how hard or complicated that CC can be, and seems like it should be easy; i.e. “bile flow through the bile duct…”how hard is that?”We will keep persevering and stay positive. May He bless us All.
Karen
Hi, Karen,
I do not think the De Vinci robotic surgery is suitable for biliary reconstruction.
Most of the time it is used in urology and gynecology related cancers like prostate,uterine,kidney,throat ,bladder ,colorectal or endometriosis.Most of the time, Whipple procedure or Roux-Y hepaticojejunostomy are used for biliary reconstruction if patient’s medical condition is allowed. Both surgery are long and difficult and should be performed by experienced GI surgeons.
I do not think the oncologist and the surgeon will start anything unless the bilirubin is within the normal range.
Radiology procedure like PDT;chemotherapy like Gem.Cis or Gem/Xeloda
may be of use to the extrahepatic cholangiocarcinoma (tumor located in the common bile duct).
but I think the most important goal now is the bilary drainage to relieve the blockage and decrease the bilirubin level back to normal range in order to receive surgical or chemotherapy treatment.
God bless.Me again…sorry for the long post. I am trying to figure out if the bile duct reconstruction would be the best thing for her or finding an oncologist that would give some chemo to her with hopes that it shrinks the little tumor inside her bile duct!??!!! Do all oncologist not give chemo when the bilirubin is high like my Mom’s = 16.3?
Thank you for all your information, help and support.
Best to all, and hugs.
KarenHi everyone, it is Karen again….my Mom had her 3rd external drain (so she has 3 external drains at the same time now) put in last week. It worked for a few days, and her bilirubin dropped. Then it began to creep back up. The liver specialist told the interventional radiologist to check the drains with dye, which they did and they could see that the blockage in her common bile duct is where things are not getting through. (Some dye did make it down into the intestine and to the other bile duct branches.)
The IR changed out the three drain tubes for larger ones. Her bilirubin went down 1 point between last night and today which is good.The liver specialist told me that if the drains do not work properly and do not have proper outflow each day, then Mom has a few weeks to live (if we do not do anything else). He said we could try surgery again and do a bile duct reconstruction removing more liver (she had a liver resection in July 2011 with half removal) and pull up the intestine and attach to bile duct with hopes they could cut out the part of the bile duct that has the tumor/scar tissue blockage.
The oncologist here will not give her any chemo meds until her bilirubin is down below 2. It is today 16.2.
Has anyone had the da Vinci robotic surgery for the reconstruction of the bile duct? I have read that is less invasive and would probably be best in my eyes. What is life like after the bile duct reconstruction?
I sat and talked to my Mom today in the hospital, who is weak and sleeping a lot, and told her that we could explore surgery but she needs to keep fighting. She wants to fight this thing until it cannot be fought anymore!. She is so weak but I understand that she is not getting any protein with these 3 drains and the liver not working well so essentially it is like she is starving right now.)
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