Darrel Message: liver elevation
Subject: liver elevation
Date: 02/14/2007
hi everyone, i was sitting here alone in this awful snowstorm, just thinking. i figured that maybe i should share my thoughts and ask some questions. my mother is 63 years and was diagnosed with extrahepatic bile duct cancer in december 2006. of course it is an all too familiar story. mom went to the hospital in october 2006 because of severe right upper quadrant pain, radiating to the back and right shoulder and jaundice- no weight loss. at the hospital they did an ultrasound - saw stone in bile duct and stones in gallbladder, she had a non-conclusive ct due to no contrast ordered. a failed ercp, supposedly due to severe duodenitis, although there is no record of this failed ercp. an eus confirmed stone in bile duct and stones in gallbladder. mom was released and put on diet of lettuce, lemon juice and olive oil. of course mom lost weight-around eight pounds in a month. ca19-9 was ordered during this time - result was 24. by november mom could not take pain anymore. jaundice cleared up , liver labs back to normal. ercp was performed-completed this time-irregular narrowing of common bile duct throughout much of its course. mrcp was performed - showed stricture which appeared somewhat irregular but no mass found. open surgery was performed in december and the whole world came crashing down. extrahepatic bile duct cancer - retroperitonium spread, small tumor wrapped around portal vein, tumor on head of pancreas, small spots on stomach, gallbladder adhered to liver, spot on duodenum and 1 lymph node affected. doctor performed agressive surgery, partial liver resection, reroute of duodenum and partial removal and reroute of bile duct. no negative margins. i registered mom at sloan kettering, she had 8 months of gemzar and cisplatin or oxilplatin-this is a horrible chemo. mri and mrcps showed nothing throughout course, mom also maintained most of her weight, losing only eight pounds over course of treatment- liver labs elevated towards end of treatment. she got three months off and took another mri-showed nothing like the previous 3 or 4. my mothers doctor told her even though mri was negative she wanted her to go back on treatment. my mother can be very stubborn and told doctor that since no one saw anything why should she go back on treatment she was doing great and looked great, she finally felt normal again. doctor told mom she wanted to order a different test and sent mom for ct. ct found very small spot on duodenum - biopsy said cancer. so, mom reluctantly went back on chemo, this time xeloda pills. follow up visits were less and less. last week of treatment mom became jaundice, bilirubin and liver labs elevated extremely high. doctor took mom off treatments. this was about a month ago and she is still jaundice. has anyone had a similar experience with xeloda??? i am so sick and tired of this cancer!!!!!!! i really feel mad, i'm worn out, my heart is broken to pieces over my mother. i feel that this has gone on so long, that i can't even cry anymore-i just feel pissed! would anyone like to share your feelings? just let it go, i'll be here to listen and i thank you for listening to me.
Subject: RE: liver elevation
Date: 02/25/2007
My Mom is also 63 and has been battling this disease for almost one year. She loves her doctor but I am very skeptical about some of the things he says. She just spent two weeks in the hospital for an infection and belly pain that they did not ever really pinpoint, she cannot get out of the bed without two nurses with her, and her doctor strolls in and says " I have great news, your tumor markers are normal at 37!" I want to ask this guy if he is blind!! She sleeps 20 hours a day, is severely dehydrated, has ilius and a yeast infection in her bile ducts from the external drainage tubes that keep her alive, and he want to pretend that everything is great. She is under the assumption that he can cure her despite what two of his collegues say - that basically the chemo is a dam, and sometimes the chemo is worse for you than the cancer when you are talking about quality of life issues. He wants to keep pumping her full of chemo every three weeks, and I think that it will kill her before the cancer does. She gets severe mouth sores on day three of the treatment that continue until about two days before the chemo round starts all over again. She is down to 113 pounds and looks terrible. I want to ask him who he thinks he is fooling. Finally, after this two-week hospital stay, he conceded to postponing her chemo for three weeks. I have her at home now and she is on super antibiotics for 14 days through her port that I administer once a day. She seems a little better, but I wonder what the next round of chemo will bring. He says he will cut the dose way back, but then will it kill the cancer cells? He has also stated that bile duct cancer is very difficult to see on a cat scan or mri because the "pockets" that the cancer cells are in remain even if the cells are killed off. This is the reason they rely so heavily on the tumor markers. I am sorry to ramble and seem so negative but this is a very frustrating disease.
Subject: RE: liver elevation
Date: 02/25/2007
I am sorry, I did not ask how your Mom is doing right now. Also, where do you live, as we were in that huge snowstorm on Valentine's Day also. What a treacherous ride home from the hospital that day!
Subject: RE: liver elevation
Date: 03/01/2007
On 2/25/2007 Carol6 wrote:
I am sorry, I did not ask how your Mom is doing right now. Also, where do you live, as we were in that huge snowstorm on Valentine's Day also. What a treacherous ride home from the hospital that day!
sorry i'm late to respond. I live in upstate NY, originally from downstate (quite a difference!) i'm so sorry to hear about your mom. i am starting to think that our parents are just guinea pigs in some horrific experiment. my mother just got a call from sloan today, now they say her liver labs are elevated to the highest yet. they want to see her on tuesday. my mother said she will not go back on chemo and she will not let anyone cut on her again, she believes if it's God's will, she will live. she has gained more strength, weight and is so much more active since she was taken off chemo some weeks back. it's a shame that your mom is being robbed of precious time by chemo. this particular cancer rarely responds to chemo. i agree with my mother's wishes, i would rather have her be herself for a while than the miserable, tired woman that i saw with the chemo. please keep me updated on your mom. this is a tough one, we certainly need a place to vent our anger and pain about it. i would normally vent everything to my mother, as we are very close but i prefer to encourage her, not discourage her. so, it seems i have no one to turn to. i thank you for your response, it means a lot to me.
Subject: RE: liver elevation
Date: 03/01/2007
I was reading your message and I just wanted to share some things that my daddy told me before he passed away October 25, 2006. He said that if he knew how badly chemo was going to make him sick he would of never have done it. He had lung cancer, had his upper left lobe of his lung removed and was doing great, then he had what they call templets on his brain. Basically that meant that he had three spots of cancer on his brain. He refused chemo and he went out very peacefully and hopefully not in pain. My prayers are with you and your mom. All I can say is, "ask her what she wants to do?" Respect her wishes. My father was only 67 and until his first surgery he was in excellent health and excellent condition. After the surgery, he lived the rest of his life on pain killers and he wasn't my father. He was just heavily medicated and didn't know anyone. I will continue to pray, God can do all things, but I guess it was just time for him to go home. Sincerely, Mindi --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----
Subject: RE: liver elevation
Date: 03/01/2007
Thanks for responding back to me. We are also in "upstate" New York, near the Vermont border. There is so little known about this cancer that I too feel that my Mother is a guinea pig. The difference with her is that she is convinced that she is going to beat this cancer even though several doctors have told us otherwise. She says that she does not want to "give up", but hates how she feels. Every day she complains of how tired she is no matter how much sleep she gets. I have told her many times that it is the chemo causing this but I do not think it sinks in completely. Unfortunately, given how much weight she has lost because of the horrendous mouth sores she gets with her chemo, I think the chemo will kill her before her cancer does. She is only 113 pounds, and has no stores to fight anything that may come her way. Unfortunately, her main doctor has the reputation of fighting right until the end, and has made remarks like "I have more tricks up my sleeve." Who is he kidding?? Not me. It is so nice to talk to someone who is going through the same thing. I don't blame your mother for not wanting to go on any chemo. Miserable and tired are two adjectives that describe my mother perfectly right now. We have been going through this for almost a year and have yet to get a solid answer on what each of the blood tests is for, and what exactly the normal ranges are.
Subject: RE: liver elevation
Date: 03/01/2007
You know, I do not even know what T numbers we were at in the beginning. That is one of the things that bothers me. All I know is that my mother went for an ERCP because she was jaundiced, ect. and during the procedure they found a "growth". From there we had a cat scan, MRI and pet scan and they sent her to Boston for possible resection. In Boston they told us she was not resectable because the cancer was on both sides of her liver and in one lymph node. During our first visit with her doctor he said that the tumors on either side of her liver were fist-sized. Her tumor markers were only 91 at their highest, and the PA that we work with has explained that this cancer is very hard to see on the scans and that is why they rely so heavily on the markers. The last time they were tested, they were only 37. I wish I knew what her blood numbers were. I am going to ask about them and write them down when we go in two weeks. They have always said that they are "okay", but that answer is not going to be good enough anymore. I am the type of person who wants to know every detail, and I cannot accept that things are okay just because a tumor marker is slightly lower. If everything is okay, then why does she still need chemo, and why does she still need the external drainage tubes installed? Again, not to be negative, but as this thing progresses, I just question things more. I notice that your Mom's tumor markers are normal also. Do you know why this is? Also, what do they mean when they say that this disease is hard to see on the scans?
Subject: RE: liver elevation
Date: 03/01/2007
My mom's wishes are to continue with the chemotherapy because she believes she can be cured. It is the worst case of denial I have ever seen. Her doctor says that she will be on chemotherapy for the rest of her life. I think in the end, when she has to confront the truth, she will feel the same way your father did. It is very difficult to see someone who was always so independent become confused and withdrawn, so I can empathize with what you went through with your father. Most of the time my mother is okay, but there have been times when she has been downright delirious. It is hard to have to tell a parent that they cannot or should not be doing something because they are confused about where they are or what is going on. My mother retired at age 62, and was sick right out of the starting gate, she has not been able to enjoy any of it. Thank you for the input from your experiences with your Dad. It is so nice to have people to communicate with about this. None of my family members (besides my husband) have bothered to do any research or go to any of Mom's doctor appointments. Now at the 11th hour they want to know "what is going on?" and have begun bombarding me with questions that I have already answered months ago. Thanks for being a sounding board.
Subject: RE: liver elevation
Date: 03/02/2007
i'm sure it is the chemo that is making your mother so tired and run down. my mother was the same way. my mother's doctor wanted her to enter a clinical trial, thank God my mother and her doctors colleagues were against it. i realize that the only way to know the effects of these drugs on humans, are to test them on humans but you have to know when enough is enough. your mother sounds a lot like mine, a true fighter. when all of this started, my mother said i will do whatever they say, i want to live. her doctor told her that she couldn't cure her but she could treat her. when my mom went on her second round of chemo, she was fighting with her doctor to get off it. my mother said what's the point of feeling lousy if they can't cure me. of course moms doctor wants to hammer her with chemo until the end, so now she's at battle to stay off. i feel so bad for your mom, i guess you only need to hear one doctor say " i can cure you" and that's all you will hear. your mothers doctor sounds like a snake oil salesman. it's too bad that she won't give herself a break and let her body build back up. she would probably stand a better chance by doing that, than with chemo which is just toxic poisoning which can cause additional cancers and even death. bile duct cancer does not always image and does not always show up on blood tests. it's tough to detect and even harder to treat. was your mother's cancer advanced when they found it? how did they find it, if you don't mind me asking. my mother was t3 n1 m0 when they found it and not completely resectable. ca19-9 was not elevated. how are your mothers liver labs doing with all of this chemo?
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