3rd external drain for Mom & dilated bile ducts!??!!!
- This topic has 8 replies, 6 voices, and was last updated 12 years, 5 months ago by
.
-
Posts
-
Karen….finally it worked. Sounds like something of: third time is a charm. Now that things are draining adequately your Mom should feel significantly better each day. Your Mom successfully has passed this major milestone and is on the upward swing of the roller coaster ride. Great news!
Please, keep us posted as we love to hear success stories in fact we thrive on it.
All my best wishes,
Marion
.Hi Karen,
Thank you for letting us know how your mum is doing. And that is great to hear that they managed to get the 3rd drain in and that it seems to be working so far. I will be keeping my fingers and everything else crossed that it keeps working as it should. Yes the doctors and nurses are right in what they say about the bilirubin, it takes time to build up and also it will take a bit of time to come down. I so hope that the bili does come down much further and that your mum can start her chemo, again, fingers are crossed here.
Yes this is a tough cancer and is different for each patient. And also yes, your mum has not lost her battle and I love her fighting spirit. Kicking some butt sounds like a great plan to me! Please keep us updated, we are here for you.
My best wishes to you and your mum,
Gavin
Thank you to all of you for your loving responses. The 3rd external drain the Interventional Radiologists inserted into my Mom’s bile duct this Monday seems to be working, by the grace of God. They are watching her bilirubin and today’s lab work showed that the bilirubin is dropping….from 15.8 yesterday to 15.2 today. The doctors and nurses all say it takes a couple of days for the bilirubin to regulate or adjust in the bloodstream so I hope they are right.
When her bilirubin is down to 2 or lower, they will do chemotherapy and hope it is next week. We are prepared to seek the 2nd opinion but at this point, if the drains are working and she can get the chemo here than we are comfortable as what she will receive is the same as what I have read on this blog (gemzar and the other chemo that goes well with gemzar).
This is truly one tough cancer and it seems to present so differently in each patient. I keep telling my Mom that she has not lost this battle yet and to keep fighting each and every day. She is thankfully digging in and prepared to kick it’s butt while she can!
Thank you, again, and I will stay in touch and keep everyone updated on my Mom’s progress.
Hugs.
KarenHi Karen,
I think its a good idea to get a second opinion I, too, had intrahepatic cholangiocarcinoma and a liver resection in 2009. Except for a couple of months, I have had 2-3 external drains since 2009. I’ve never had an internal stent – my doctor said they can be more problematic because they move and can stop working. So, we’ve never tried it.
I sent all of my records to The Mayo Clinic in Minnesota for a second opinion and they said to stay with the Cleveland Clinic…….the Mayo Clinic would be treating me the same way.
You could ask for a consult at the Clinic;
Dr. Mark Sands, Interventional Radiology
Betsy
Hi Karen,
I too am sorry to hear what your mum is going through right now. And I just want to echo what everyone else has said to you about seeking further opinions for your mum. Here is a list of major treatment centres in the US that may be of help to you –
http://www.cholangiocarcinoma.org/majorcancercenters.htm
Please do not give up hope here and also, please keep us updated on how you get on with getting your mum seen by other doctors. Stay strong and know that we are all here for you.
My best wishes to you and your mum,
Gavin
Hi Karen. I am so sorry your Mom is going through all this “stuff”! I would run, for that other opinion. Someone new may be able to know just what to do to eliminate a drain or 2 and get that stent working. Best of luck to you and your Mom and please keep us posted. Key words here are DO NOT GIVE UP!
Karen…You are making the right decision by wanting to obtain a second, or third, professional opinion. In preparation of you need to request copies of all medical records including, blood work, scans, physician reports, etc. Unless you have power of attorney your Mom will have to sign the permission slip for release of records.
Most major hospitals will require a personal visit and often times they also like to repeat scans and blood work.
Margaret had posted numerous times on the problems Tom encountered with drainage issues of the bile duct. You might want to take a look via our google search function. I am sure that her postings will show up. That is of course in case Margaret does not have the opportunity to respond to you personally, on this site. Margaret?
Hang in there, Karen. The third, external drain may just do the job. Even so, I would consider obtaining at least one other medical opinion.
All my best wishes,
MarionHi,
2nd opinions for surgical and G I consult,medical oncology and interventional radiation consult from John Hopkins is a good start.
Do not give up. Few can have the chance of resection like your mom.
This is the time for the best use of 2nd opinion.
God bless.My Mom was diagnosed with cholagiocarcinoma; intrahepatic, in July 2011. She had a liver resection with removal of left hepatic bile duct and about half of her liver on July 29th. She left hospital with 2 drains. One drain was removed about 4 weeks later as it stopped working. She has since had two internal stents placed into the bile duct, and last week with the onset of her 3rd blood infection the Gastro doctor removed the internal stent and then they added a 2nd external drain. They said that due to stricture in the bile ducts and blockage the internal stents are not working because they keep moving upwards and out of place. That was last Tuesday. Since then, she has been in the hospital and her bilibrubin has been rising. So, today they added a 3rd external drain. The gastro doctor and liver surgeon are telling me that Mom has blockage in her bile ducts (the original tumor was removed but some left behind because a clear margin could not be obtained due to location of bile duct) which is causing dilated bile ducts, and the bile not draining properly.
They have not started her on radiation or chemo pills, as planned, because she has been draining since July 29th and then the infections have been every other week. They will not do radiation or chemo until her bilirubin is 2 or less now. Her bilirubin was 14 today before the 3rd external drain was added.
They have essentially said that if this 3rd drain does not work, then they cannot help her anymore and she can go home to die. They did not say “to die” but they said to “be comfortable”.
I now believe we need a 2nd opinion as these doctors are “good” but this is the circle of doctors they deal with every day and this is what they all agree is “okay”. We do not feel it is “okay”! They have to be able to do something to find the blockage, and also to get the bile ducts to reduce and not be dilated……….right?????
What do you all think? We live in Richmond, Virginia. We are willing to travel. Advice is greatly needed! Thank you for this site, and God Bless us All.
Karen
- The forum ‘General Discussion’ is closed to new topics and replies.