CancerCompass message board discussion started by Bayla on 2/20/2008 http://www.cancercompass.com/message-board/message/all,21136,0.htm Sat, 30 Aug 2008 00:00:00 GMT Sat, 30 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi. You both have been helpful and kind. My sister had a bad stent removed and now has two catheters. She spiked a nice infection in the process and that's what we're dealing with now. We have a very large family and we all share in her care, so no one is terribly worn down, so thanks for your concern for me. One of my jobs is to see whats online. I spent the day yesterday and she wasn't feeling so great. She also is barely eating and vomitting a lot when her fever goes up. The drs don't seem to concerned. They culture the bile and change the meds as they see what's cooking. Thanks to both of you and we'll be in touch. Bayla Wed, 20 Feb 2008 00:00:00 GMT Thank you for your message Bayla. My thoughts are with you all. I sincerely hope that, when the stents are doing their work, your sister will start feeling better.Much love,Iris. Flower1 Wed, 20 Feb 2008 00:00:00 GMT  On 2/20/2008 Bayla wrote:Hi. You both have been helpful and kind. My sister had a bad stent removed and now has two catheters. She spiked a nice infection in the process and that's what we're dealing with now. We have a very large family and we all share in her care, so no one is terribly worn down, so thanks for your concern for me. One of my jobs is to see whats online. I spent the day yesterday and she wasn't feeling so great. She also is barely eating and vomitting a lot when her fever goes up. The drs don't seem to concerned. They culture the bile and change the meds as they see what's cooking. Thanks to both of you and we'll be in touch.Good Morning Bayla,Glad to hear the stent was removed. A stent is difficult to keep unclogged.The two catheter's will help control the bile flow.  The infection along with the high fever happens when bile backs into the liver and the body reacts.Eating is difficult when your body is going through what you sister's body is experiencing.Is you sister's doctor suggesting daily flushing of the catheter's. This is very important. If you don't flush regularly the catheter's will be the same as having the internal stents.  My wife has two catheter's and we flush everyday...there is a specific procedure that should followed, it's not just a simple inject saline and all is well.  As her doctor regarding this issue.Also, just because she has 2 catheter's helping the bile flow, fever's can and will surface once and a while.  Keep Tylenol handy and ask your doctor for some oral antibiotics.  It's a great way to control the infection until you get into ER and they connect IV antibiotics My wife needs to replace her two catheter's every 30 to 40 days.  Your sister may not go that long.  Take and hope all the best for your sisterLeonard         Solutions Wed, 20 Feb 2008 00:00:00 GMT Thank g-d my sister was released from the hospital today. She is on oral meds and we're hoping for good things. Her catheters were reversed and she now has internal stents. She is much happier with them and really hated those bags. I'm hoping that they won't clog, infect... I know it's so impossible to know what will happen but I'd love to hear from people who had unoperable klatskins as to what the course of the disease was. In any case, we're hoping that she'll have a stretch of quiet now. She was in the hospital 4+ weeks and that was without the real surgery being done. My best to you and hoping to hear good things. Bayla Sun, 02 Mar 2008 00:00:00 GMT  On 3/2/2008 Bayla wrote:Thank g-d my sister was released from the hospital today. She is on oral meds and we're hoping for good things. Her catheters were reversed and she now has internal stents. She is much happier with them and really hated those bags. I'm hoping that they won't clog, infect... I know it's so impossible to know what will happen but I'd love to hear from people who had unoperable klatskins as to what the course of the disease was. In any case, we're hoping that she'll have a stretch of quiet now. She was in the hospital 4+ weeks and that was without the real surgery being done. My best to you and hoping to hear good things.Hi Bayla,Good to hear the stents have been placed. Your sister will hopefully soon feel better. Are the oral medicins to keep the bile easier flowing?Concerning the start if the Klatskin tumor: nobody knows. As long as a kind of disease carries the name of the first person who examined it, you can be sure not much is known about it and no cure has been found. It is a very serious and quite rare type of cancer. As you can read from all these messages, a lot of people have lead a very healthy life and have hardly ever been ill. (As my Peter).Keep hope in the fact that he, as he picked up his daily life routine, has allready got 7 months more than the specialists and we expected. Make every day you are still together a good day and enjoy the extra time.I really love to keep hearing how your sister, your family and you are doing. When you don't feel strong, do not hesitate to e-mail. Though I am very grateful for our extra time, of course I also have my bad days (when Peter is not at home).Love, iris. Flower1 Tue, 04 Mar 2008 00:00:00 GMT  On 3/2/2008 Bayla wrote:Thank g-d my sister was released from the hospital today. She is on oral meds and we're hoping for good things. Her catheters were reversed and she now has internal stents. She is much happier with them and really hated those bags. I'm hoping that they won't clog, infect... I know it's so impossible to know what will happen but I'd love to hear from people who had unoperable klatskins as to what the course of the disease was. In any case, we're hoping that she'll have a stretch of quiet now. She was in the hospital 4+ weeks and that was without the real surgery being done. My best to you and hoping to hear good things.Bayla,Hi..this is Leonard, sorry for the delay in getting back with you.  Happy to hear your sister has been released from the hospital, that alone is very good news...hospital's tend to get you sicker.  The oral medication meaning Chemo, Antibiotic's or Pain Medication?I can understand your sister being happier with the internal stents...out of sight out of mind. But as you know from my many previous massages I am in favor of the external catheter stents. They are much more manageable than the internal stents. Keep a watchful eye on fevers, and body chilles...the internal stents will get clogged and that clogging will cause fevers and body chilles and a ASAP visit to ER.  The external catheters can be flushed daily and keep the upper stents unclogged.Also keep in mind, an unoperable Klatskin Tumor is a very serious situation.I don't know if you mean the course of the disease or you meant the source or the disease.  The course of the disease as you know is not good. As far as the source of the disease this is still unknown...some say it's from East Asia...if you search out some web sites...they will identify other causes...what ever the case, you sister has it and it's very serious.I really wish the best for you, your family and naturally your sister.Leonard     Solutions Thu, 06 Mar 2008 00:00:00 GMT  Hi Leaonard.. All the best of thoughts and prayers to your wife and yourself. It's Maurice here - again - from Toronto.  Found out today that they have removed the external tubes/cathader from my brother...I noticed you are not in favour of this..And, never heard of them doing an internal drainage - other than the original stent.  He now has infection around the incision.What do you think of this...I'm thinking...where does the bile go....if it's not draining out of the body...Doesn't make sense to me to have the tubes removed..What do you think.As always appreicate your responses.best regards,Maurice   Maurice Fri, 14 Mar 2008 00:00:00 GMT  On 3/14/2008 Maurice wrote: Hi Leaonard.. All the best of thoughts and prayers to your wife and yourself. It's Maurice here - again - from Toronto.  Found out today that they have removed the external tubes/cathader from my brother...I noticed you are not in favour of this..And, never heard of them doing an internal drainage - other than the original stent.  He now has infection around the incision.What do you think of this...I'm thinking...where does the bile go....if it's not draining out of the body...Doesn't make sense to me to have the tubes removed..What do you think.As always appreicate your responses.best regards,Maurice  Hello Maurice,I noticed you picked up on my message to Bayla...that's find because most of these situations are almost about the same horrible issues.Thank you for the warm comments regarding my wife and myself.In your last message I read form you was that the doctor inserted an internal stent not a external stent.  Well, first of all you are correct about how I feel about external bile catheter drains. Let me say one more thing about the external drain catheter. I think some of you think the only purpose of this type of catheter is to only drain bile out of the liver into an external collection bag...that's not the total purpose. In my wifes case, she has two (2) external catheters inserted into her liver. One tube is a #8 and the other is a #10. They both are inserted into two separate existing ducts in the liver. At the upper end of the tubes is an area of approximately 2" to 3" long with small hole in it. Picture a lawn watering hose with all those pin holes. The bile drain/stent tubes in my wifes liver are very similar. The purpose of these tubes is to allow the bile to flow out of the two existing ducts and  directed into those holes, down the tube that's also inserted into the new common bile duct (small intestine) and down into the digestive system. The only time my wife uncaps the external caps is to flush the catheter's, this is why she has no bile and or blood infections. We flush once every day. This keeps the upper portion of the inserted tubes (stent) free from clogging. That has been my wifes life saver.Sorry for inserting all this info, I just wanted you to understand the external drain tube purpose...I've read a lot of messages on the cancer board that indicates a lot of folks have the wrong impression of the external drain tubes. By the way, you should only need to drain for 30 minutes each day. Now there are times when the bile turns dark green and a fever surfaces. I that case the draining procedure needs to be handled in a different way. But back to your comment about the doctors removing the external drain tubes/catheter. Okay assuming he had an external catheter and now it's removed. And I am assuming he still has the internal stent.  I am a little confused, but lets go with those assumption. First of all if your brother has the internal stent and it is not functioning it most likely is clogged, he has a problem.  If that's the case and they removed the external drain catheter, your brother has a bigger problem. I hope they are not giving up on him.  You mentioned he has an infection at the incision. I'm assuming you mean the entery site where the catheter enter's the body. Allow me...This dressing must be cleaned everyday. In my wifes case...Wash your hands first, cloves are not necessary. I remove the dressing everyday. With Q-Tips dipped in Hyhrogen Peroxide wipe around the tube entry site. You will see white foam surfacing because of the bile in the entry site area. wipe the entry hole clean with another Q-tip. Take a 2x2 gauze pad and cover the entry site. Then take a wide (the IR department furnishes me with this special tape) tape and cover the gauze pad. If you or some one else does this everyday your brother will not get an infection at the entry site. I have been doing this for my wife for 4 years and she has never had an infection at the entry site. Maurice...you bring up a very important question, "where does all the bile go" Lets assume there are no internal stents or if there are they are clogged, no external drain catheter and the existing ducts are clogged...sounds like you have a 747 in a crash mode at 700 miles an hour.  If this is the scenario, your brother is in trouble. Where does all the bile go...well it backs up into the liver and into the body. Your brother's eye's and skin will turn yellow, his urine will turn dark orange and his stools will be an ash color...as you can imagine, all this is not good.  I can't believe his doctors are allowing all this to happen, unless they have a hidden agenda that you and/or your brother don't know.Maurice, Keep questioning the doctor's or at least tell them to lay it all out on the table, so there are no surprises.Goo Luck...sorry for the long message. Leonard       Solutions Fri, 14 Mar 2008 00:00:00 GMT