CancerCompass message board discussion started by Bayla on 2/11/2008 http://www.cancercompass.com/message-board/message/all,20861,0.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/ We've had a hard day. My sister's surgery was today and instead of a liver resectioning for a Stage I or II Klatskin tumor, we were told that there was nothing they could do for her. Despite the scans and tests which had all been so positive, they were wrong. It seems to have started in her gall bladder and traveled upward to both bile ducts and much of her liver.So what's next??? Anyone experience the same? Thanks for helping Bayla Mon, 11 Feb 2008 00:00:00 GMT  On 2/11/2008 Bayla wrote:We've had a hard day. My sister's surgery was today and instead of a liver resectioning for a Stage I or II Klatskin tumor, we were told that there was nothing they could do for her. Despite the scans and tests which had all been so positive, they were wrong. It seems to have started in her gall bladder and traveled upward to both bile ducts and much of her liver.So what's next??? Anyone experience the same? Thanks for helpingHi Bayla,Sorry to hear they elected to bow out.  Something doesn't sound right.What hospital was your sister admitted to?  Unless there is more that they are not telling you...It sounds like they opened her up and saw something they didn't like. A Klatskin Tumor usually is in the right or left or both hepatic ducts. My wife had the same situation. Her surgeon's removed 2/3 of the liver, all the hepatic and common bile duct the gall-bladder and the cystic duct , plus 2 lymph nodes.  This sounds like what your sister's cancer situation is all about.  My wife had surgery in 2003 at UCSF Medical Center in San Francisco and doing very well. I know you are not new to this message board...there are many others with the same issues and most of them had or are planning to have surgery.  Unless the doctor's are holding back information regarding this issue...they may not want to risk there positions...believe this happens.Review the other messages on the web-site and then get another opinion. Unfortunately your sister may not have that option due to the surgery that was already performed.Just a note for thought. Before my wife went into surgery, the surgeon told me they will open her up and if they see more cancer then showed up in the CTscans, they would imediatley close her up and make her comfortable...I went through hell the first hour or two during surgery...after the first 2 hours pasted I knew they were going after it.  The next 12 hours were just as bad.I wish you and your sister all the best...I wish I had more positive things to say.  Take care and be there with your sister...being alone under this situation is total hell.Leonard for Alamo, California     Solutions Mon, 11 Feb 2008 00:00:00 GMT  On 2/11/2008 Bayla wrote:We've had a hard day. My sister's surgery was today and instead of a liver resectioning for a Stage I or II Klatskin tumor, we were told that there was nothing they could do for her. Despite the scans and tests which had all been so positive, they were wrong. It seems to have started in her gall bladder and traveled upward to both bile ducts and much of her liver.So what's next??? Anyone experience the same? Thanks for helpingHi Bayla,I am very sorry to hear this news about your sister. This same thing happened last year May with my husband. The liver was so badly infected, they had to take more than 75% away, plus there was a metastase near the pancreas, so the surgeons blew it off. There is not much that can be done now. The only help I can give you is the following. My husband recovered from the scar within 2 weeks, he got 2 stents to keep the bile flowing and he resumed LIVING. Yes, with capital letters. A month later he was back to work and he even plays squash again. Though we had a prediction for him to live at the most 2-3 months, this is 9 months now. He has occasional fever and takes antibiotics for this. But the quality of his life is still very good and we are living every day like a bonus.I hope your sister will be able to do this too, I strongly believe by acting "normal" again, she can cope much longer than when she behaves like a patient. I wish you, your sister and your family a lot of strength.Iris (the Netherlands) Flower1 Tue, 12 Feb 2008 00:00:00 GMT Thank you, Leonard and Iris for your responses. I can not tell you what exactly they found that made them bow out as you put it. I believe that it was in both ducts instead of only one, the entire gall bladder (they believe it began there and then went to the bile ducts) and a large part of the liver. We are in Sloan Kettering and her dr. is Dr. Jarnagin, who is one of the tops in the field, so I do trust his decision because he is quite optimistic and positive in general. Iris, did your husband have any chemo or radiation after he recovered from his surgery? Thanks again for your input. Bayla Tue, 12 Feb 2008 00:00:00 GMT  On 2/12/2008 Bayla wrote:Thank you, Leonard and Iris for your responses. I can not tell you what exactly they found that made them bow out as you put it. I believe that it was in both ducts instead of only one, the entire gall bladder (they believe it began there and then went to the bile ducts) and a large part of the liver. We are in Sloan Kettering and her dr. is Dr. Jarnagin, who is one of the tops in the field, so I do trust his decision because he is quite optimistic and positive in general. Iris, did your husband have any chemo or radiation after he recovered from his surgery? Thanks again for your input.Good Afternoon Bayla,Pleased to hear your sister was being treated at Sloan Kettering a super facility in New York. When my wife was travelling with my daughter in New York she had a problem with her bile drain tube. She called her doctor at UCSF in San Francisco and told him the problem.  He told my wife (Karen) to go to the IR department at Sloan Kettering and ask for Doctor Thornton (how previously worked at UCSF and knew Karen) and he would take care of her...she did and he did. Your sister is in god hands in a great hospital.Saying that...I'm very sorry to hear they made the decision to not continue with the surgery, they may have saw something that they believe couldn't be resolved with surgery.I'm sorry to hear this...we forget, I know I do...sometimes we give our opinion thinking everyone is the same and this just isn't the fact. Even though there are some similarities of issues...everyone is different and I guess we give information based on our own experiences.  The doctor's specializing in this field know best....Sorry for rambling.Take care of your sister and especially take of yourself...you are no help if you get run-down and sick.Leonard from Alamo        Solutions Tue, 12 Feb 2008 00:00:00 GMT  On 2/12/2008 Bayla wrote:Thank you, Leonard and Iris for your responses. I can not tell you what exactly they found that made them bow out as you put it. I believe that it was in both ducts instead of only one, the entire gall bladder (they believe it began there and then went to the bile ducts) and a large part of the liver. We are in Sloan Kettering and her dr. is Dr. Jarnagin, who is one of the tops in the field, so I do trust his decision because he is quite optimistic and positive in general. Iris, did your husband have any chemo or radiation after he recovered from his surgery? Thanks again for your input.Hi Bayla,My Peter did not have any chemo or radiation. It was offered to him after the failed operation, but the specialists said that this could perhaps lengthen his life by a few weeks, but would not cure anything. And the quality of his life would deteriorate. That's why Peter said no and I am very happy with that. Because, since the drains are in, the quality of his life is allmost as high as it was. No pain, no itching. He does have, every now and then, fever. By taking 5 or 8 days antiobiotics this also goes away.We have a very good marriage and two wonderful grown-up sons. There is, of course, sadness over the fact that Peters life will end sooner than expected. He allways was so extremely healthy and sportive. But there is also a lot of happiness in the fact that he is coping so much longer than predicted and still feeling so well. We do extra nice things, especially in the weekends and with our sons. We love each other allmost deeper and with more consciousness. Even in tragedy you can find a lot of richness.Will you please keep me update about your situation. And, as Leonard says, look after yourself. This illness is, if possible, even tougher for the bystanders. You are in my thoughts,Iris. Flower1 Thu, 14 Feb 2008 00:00:00 GMT Hi Leonard,My brother - within the last 10 days has been diagnosed with a Klatskin Tumor.  They were unable to remove the tumor and they did the 'stent' procedure on his bile duct.  He and his family have chosen not to do any redio or chemo therapy...Do you or anyone have any thoughts on this decision....He actually is preferring to utilize a akelein diet etc.  I'm very concerned about this - especially considering what I have read...Appreciate finding this site..however, wish I had no reason to be on it.sincerelyMaurice - Toronto, Ontario On 2/12/2008 Solutions wrote: On 2/12/2008 Bayla wrote:Thank you, Leonard and Iris for your responses. I can not tell you what exactly they found that made them bow out as you put it. I believe that it was in both ducts instead of only one, the entire gall bladder (they believe it began there and then went to the bile ducts) and a large part of the liver. We are in Sloan Kettering and her dr. is Dr. Jarnagin, who is one of the tops in the field, so I do trust his decision because he is quite optimistic and positive in general. Iris, did your husband have any chemo or radiation after he recovered from his surgery? Thanks again for your input.Good Afternoon Bayla,Pleased to hear your sister was being treated at Sloan Kettering a super facility in New York. When my wife was travelling with my daughter in New York she had a problem with her bile drain tube. She called her doctor at UCSF in San Francisco and told him the problem.  He told my wife (Karen) to go to the IR department at Sloan Kettering and ask for Doctor Thornton (how previously worked at UCSF and knew Karen) and he would take care of her...she did and he did. Your sister is in god hands in a great hospital.Saying that...I'm very sorry to hear they made the decision to not continue with the surgery, they may have saw something that they believe couldn't be resolved with surgery.I'm sorry to hear this...we forget, I know I do...sometimes we give our opinion thinking everyone is the same and this just isn't the fact. Even though there are some similarities of issues...everyone is different and I guess we give information based on our own experiences.  The doctor's specializing in this field know best....Sorry for rambling.Take care of your sister and especially take of yourself...you are no help if you get run-down and sick.Leonard from Alamo         Maurice Thu, 13 Mar 2008 00:00:00 GMT Hello Maurice,I noticed in your message you indicated you have been searching the web and reading about your brother's situation.  If I'm assuming correctly, then you are fully aware that a Klatskin Tumor is a very serious situation.Due to the fact that his doctor said the tumor was inoperable, this in itself is not good.  It may be the stent was inserted to allow the bile to flow out of his liver and give him a little better quality of life. Miracles can and do happen, but when a Klatskin Tumor is inoperable, it may mean it a lot more than the two tumors in the Hepatic ducts...the cancer may have spread to other organs.Radiation Therapy as well as Chemo are usually not the first approach to control this type of cancer tumor.  If he feels like the akelein diet will help, allow him to do it.I'm very sorry to hear what your brother is going through, keep in mind...it may get a lot worse and harder for him and the family.Good luck and take care of yourself....it's a very deadly illness.Leonard, Alamo California     Solutions Thu, 13 Mar 2008 00:00:00 GMT  On 3/13/2008 Solutions wrote:Hello Maurice,I noticed in your message you indicated you have been searching the web and reading about your brother's situation.  If I'm assuming correctly, then you are fully aware that a Klatskin Tumor is a very serious situation.Due to the fact that his doctor said the tumor was inoperable, this in itself is not good.  It may be the stent was inserted to allow the bile to flow out of his liver and give him a little better quality of life. Miracles can and do happen, but when a Klatskin Tumor is inoperable, it may mean it a lot more than the two tumors in the Hepatic ducts...the cancer may have spread to other organs.Radiation Therapy as well as Chemo are usually not the first approach to control this type of cancer tumor.  If he feels like the akelein diet will help, allow him to do it.I'm very sorry to hear what your brother is going through, keep in mind...it may get a lot worse and harder for him and the family.Good luck and take care of yourself....it's a very deadly illness.Leonard, Alamo California    Hi Leonard,I truly appreciate your response.  Yes, you are correct..the stent(s) were utilized to provide a better quality of life...and to allow the bile to flow...It's a 'heck" of a situation - he just turned 50 last October - great physical shape, non-smoker.  One of his daughters is getting married in June - I'm trying in a positive way to suggest moving the wedding up - so her dad can watch her being married and maybe even travel down the isle together...Tough thing to suggest - but I'm trying to be realistic- as it would be better to have him there than not...I appreciate your listening / chattin' with me..as I feel I can be quite upfront..The doctors have explained it's almost like shaking a dandelion - and thats how the cancer is spreading..like fingers extending..Of course, I'm very concerned for my brother's  family - but also my Mom - as this is not a normal 'flow' - of how life should go...What I have read so far - the survival time - is more short than long..in this situation....I just want to hang on to HOPE but also with an element of reality as well...Leonard - All the best of wishes and prayers to you and your wife...Sincerely,Maurice Maurice Thu, 13 Mar 2008 00:00:00 GMT  On 3/13/2008 Maurice wrote: On 3/13/2008 Solutions wrote:Hello Maurice,I noticed in your message you indicated you have been searching the web and reading about your brother's situation.  If I'm assuming correctly, then you are fully aware that a Klatskin Tumor is a very serious situation.Due to the fact that his doctor said the tumor was inoperable, this in itself is not good.  It may be the stent was inserted to allow the bile to flow out of his liver and give him a little better quality of life. Miracles can and do happen, but when a Klatskin Tumor is inoperable, it may mean it a lot more than the two tumors in the Hepatic ducts...the cancer may have spread to other organs.Radiation Therapy as well as Chemo are usually not the first approach to control this type of cancer tumor.  If he feels like the akelein diet will help, allow him to do it.I'm very sorry to hear what your brother is going through, keep in mind...it may get a lot worse and harder for him and the family.Good luck and take care of yourself....it's a very deadly illness.Leonard, Alamo California    Hi Leonard,I truly appreciate your response.  Yes, you are correct..the stent(s) were utilized to provide a better quality of life...and to allow the bile to flow...It's a 'heck" of a situation - he just turned 50 last October - great physical shape, non-smoker.  One of his daughters is getting married in June - I'm trying in a positive way to suggest moving the wedding up - so her dad can watch her being married and maybe even travel down the isle together...Tough thing to suggest - but I'm trying to be realistic- as it would be better to have him there than not...I appreciate your listening / chattin' with me..as I feel I can be quite upfront..The doctors have explained it's almost like shaking a dandelion - and thats how the cancer is spreading..like fingers extending..Of course, I'm very concerned for my brother's  family - but also my Mom - as this is not a normal 'flow' - of how life should go...What I have read so far - the survival time - is more short than long..in this situation....I just want to hang on to HOPE but also with an element of reality as well...Leonard - All the best of wishes and prayers to you and your wife...Sincerely,MauriceMaurice...Thanks you for the kind thoughts for my wife and I.  You seem to be abrest of the situation...yes it is hard...damn hard, but you need to stay strong, most of the family won't and they may even get a little angry with you, don't be surprised if that happens, especially your mom...she really only wants to hear good news. It's also a very good idea about the wedding schedule...move it up, way up.  Once this damn cancer take hold it's down hill rapidly.You mentioned your brother is only 50 and in good health...My wife was 53 and worked out everyday and in very good health. My wife was very lucky, they saw it in her blood test at her regular annual physical. If her doctor wasn't agressive about the lab work results, she wouldn't be here. This is a real deadly cancer.You mentioned the survival time could be short, you're correct. My wife was only in stage IIB and that's not far into the staging, but she was given only 6 to 8 weeks...that's right weeks not months...she was very lucky that two doctors at UCSF had the guts to for surgery...without surgery...it's only time.Well Maurice, I'm sorry all this is coming down on your brother and your family.Good luck and wishing you and your entire family well.Leonard       Solutions Thu, 13 Mar 2008 00:00:00 GMT  On 3/13/2008 Solutions wrote: On 3/13/2008 Maurice wrote: On 3/13/2008 Solutions wrote:Hello Maurice,I noticed in your message you indicated you have been searching the web and reading about your brother's situation.  If I'm assuming correctly, then you are fully aware that a Klatskin Tumor is a very serious situation.Due to the fact that his doctor said the tumor was inoperable, this in itself is not good.  It may be the stent was inserted to allow the bile to flow out of his liver and give him a little better quality of life. Miracles can and do happen, but when a Klatskin Tumor is inoperable, it may mean it a lot more than the two tumors in the Hepatic ducts...the cancer may have spread to other organs.Radiation Therapy as well as Chemo are usually not the first approach to control this type of cancer tumor.  If he feels like the akelein diet will help, allow him to do it.I'm very sorry to hear what your brother is going through, keep in mind...it may get a lot worse and harder for him and the family.Good luck and take care of yourself....it's a very deadly illness.Leonard, Alamo California    Hi Leonard,I truly appreciate your response.  Yes, you are correct..the stent(s) were utilized to provide a better quality of life...and to allow the bile to flow...It's a 'heck" of a situation - he just turned 50 last October - great physical shape, non-smoker.  One of his daughters is getting married in June - I'm trying in a positive way to suggest moving the wedding up - so her dad can watch her being married and maybe even travel down the isle together...Tough thing to suggest - but I'm trying to be realistic- as it would be better to have him there than not...I appreciate your listening / chattin' with me..as I feel I can be quite upfront..The doctors have explained it's almost like shaking a dandelion - and thats how the cancer is spreading..like fingers extending..Of course, I'm very concerned for my brother's  family - but also my Mom - as this is not a normal 'flow' - of how life should go...What I have read so far - the survival time - is more short than long..in this situation....I just want to hang on to HOPE but also with an element of reality as well...Leonard - All the best of wishes and prayers to you and your wife...Sincerely,MauriceMaurice...Thanks you for the kind thoughts for my wife and I.  You seem to be abrest of the situation...yes it is hard...damn hard, but you need to stay strong, most of the family won't and they may even get a little angry with you, don't be surprised if that happens, especially your mom...she really only wants to hear good news. It's also a very good idea about the wedding schedule...move it up, way up.  Once this damn cancer take hold it's down hill rapidly.You mentioned your brother is only 50 and in good health...My wife was 53 and worked out everyday and in very good health. My wife was very lucky, they saw it in her blood test at her regular annual physical. If her doctor wasn't agressive about the lab work results, she wouldn't be here. This is a real deadly cancer.You mentioned the survival time could be short, you're correct. My wife was only in stage IIB and that's not far into the staging, but she was given only 6 to 8 weeks...that's right weeks not months...she was very lucky that two doctors at UCSF had the guts to for surgery...without surgery...it's only time.Well Maurice, I'm sorry all this is coming down on your brother and your family.Good luck and wishing you and your entire family well.Leonard       Good Morning Leonard,Thanks for your detailed response to my last email - tagged onto Bayla's area of the message centre...(still trying to figure the site out)First of all - I really sincerely thank you for sharing your experiences and information - greatly appreciated.  I didnt' get the opportunity to visit my brother this weekend - but will be travelling there on Friday the 21st - Good Friday - to see him again.  I have been told the infection is still there - but his fever has come down - temperature normal.  He has a lot of abdominal pain - I'm wondering if this is becuase of the hospital bed..Still no appetite  - according to one of my other brothers ( I have 4 in total).I do have a question(s) - Yes - as you assumed he does have an internal stent - Do these have to be drained manually -- or ??  And..when your white blood cell count goes up - is that becuase your body is fighting infection...I'm thinking and praying for you and your wife..and appreciate you sharing with me.Sincrely,Maurice     Toronto, Ontario Maurice Mon, 17 Mar 2008 00:00:00 GMT Hello Maurice,If the infection is still there and he's in the hospital and they're giving him some IV antibiotics everything should be okay...they should have everything under control with regard to the catheter entry site infection.With regard to the manual draining of a internal stent...I don't belive they drain an internal stent. If the internal stent gets clogged, I think the IR department will remove the clooged stent and replace it with a new one.With regard to the elevated WBC...As I understand it...an elevated white blood cell count is call leukocytosis. This can result from a bacterial infection, inflamation etc etc...it sounds like your brothers elevated WBC may be due to his current infection... Hope all is well when you see him on Friday.Good luck...Leonard   Solutions Mon, 17 Mar 2008 00:00:00 GMT  On 3/17/2008 Solutions wrote:Hello Maurice,If the infection is still there and he's in the hospital and they're giving him some IV antibiotics everything should be okay...they should have everything under control with regard to the catheter entry site infection.With regard to the manual draining of a internal stent...I don't belive they drain an internal stent. If the internal stent gets clogged, I think the IR department will remove the clooged stent and replace it with a new one.With regard to the elevated WBC...As I understand it...an elevated white blood cell count is call leukocytosis. This can result from a bacterial infection, inflamation etc etc...it sounds like your brothers elevated WBC may be due to his current infection... Hope all is well when you see him on Friday.Good luck...Leonard  Hi Leonard,Once again..thanks for your reply/info.  I actually decided on Monday the 17th to leave the office..and drive to London - 2.5 hours - to see him...It was great as we actually had an hour or so on our own..Still has infection - and they are treating with IV antibiotics.  Ted has had the hicups for 3 days - very frustrating for him.  Still no apetite - but he at a bit of an orange - and I made him eat part of an oatmeal cookie..He's still trying to have a BM which has been far too long...Ted is also experiencing a lot of liquid build up in his ankles, calves and now to his upper legs...(He jokes that his legs are looking like he is a body builder)The positive is his spirits are amazing..and his faith is unbelievable.  A Ultrasound was performed yesterday..I think they are trying to see what's up with the infection/cancer spreading..Will probably get the results today I'll be in touch.We're praying for you and your wife...and thank you for your correspondence and caring.sincerely,Maurice   Maurice Wed, 19 Mar 2008 00:00:00 GMT  On 2/11/2008 Bayla wrote:We've had a hard day. My sister's surgery was today and instead of a liver resectioning for a Stage I or II Klatskin tumor, we were told that there was nothing they could do for her. Despite the scans and tests which had all been so positive, they were wrong. It seems to have started in her gall bladder and traveled upward to both bile ducts and much of her liver.So what's next??? Anyone experience the same? Thanks for helpingHi I understand what you are going through.  My mother has been diagnosed with Stage 3 Klatskin tumor.  Exploratory surgery showed that if they removed the bile duct and parts of the liver, there would be too little liver left for her to survive, so there is also nothing they can do.  Because both bile ducts are blocked, they removed the gall bladder which was severely infected, and put in outside drains.  She doesn't want chemotherapy but we are trying alternative medication.  We are also looking into Rexin G, which although has not been tested against this type of cancer, seems to show promise against other chemo-resistant tumors. Has anyone heard about this also?   mayandjune Thu, 03 Apr 2008 00:00:00 GMT Hi Leonard,It's been a while since I wrote to you.  I hope you and your wife are doing OK..and we think about you often in our thoughts.My brother has now been home for 3 weeks..They are putting on an external drainage apparatus for his incision today...and he is on very little medication.  Of course, he is getting weaker and weaker, by the hour...It breaks your heart so badly...but we continue to pray...for him and his family.  Our family has never experienced anything quite like this..Thanks for all your informative emails..and all best of wishes and prayers to you and your wife.Sincerely,Maurice Maurice Mon, 14 Apr 2008 00:00:00 GMT My sister was diagnosed with a Klatskin Tumor 14 months ago.  They removed half her liver and gallbladder and rerouted her blie duct with her intestine.  They said at the time if it is in her lymph nodes or elswhere they would close her up and end the surgery.  She was cancer free for 13 months but a recent catscan has shown a retrun of a tumor ans swolen lymph nodes.  She is due in shortly for a biopsy. Her doctor is telling us that he will be unable to operate again but we are hoping to prove him wrong after the biopsy. Jean8 Mon, 30 Jun 2008 00:00:00 GMT  How is your sister doing at this time?  I am sorry for what you are going through. I am new to this message board and site. I have a 39 year old  sister and she has been told another tumor is present as we await a byopsy. She has a successful resection at Sloane Kettering a year ago where they removed half her liver and gallbladder removed her bile duct and rerouted it with her small intestine.  At the time there was no other cancer anywhere.  Her surgeon did say that if they saw that is has spread,they would close her up and not contine with the surgery. She was in surgery for almost 9 hours. I ahve been reading that the Mayo Clinic does liver transplants but I just strarted doing the research on that. my prayers are with you adn your family. Jean8 Mon, 30 Jun 2008 00:00:00 GMT