Gallbladder Cancer Treatments

Dulce

Hello everyone. My mother was diagnosed with stage 4 gallbladder cancer October 11th. After an ERCP they learned it had spread to pelvic cavity, and did not operate on her. After weeks of fighting with the insurance company she finally got her first treatment of Gemzar and Cisplatin 10/26/2010. We were told, that the amount given is according to the patient's height and weight. But the amount of treatment is how aggresive the cancer is. So I was shocked when they told us she was scheduled for 2 treatments, one not even being the combo. She will have her second treatment today, but the oncologist is only giving her Gemzar. Today we find out how many cycles she will be given, but the nurse made it seem like 2 was it. Which I hope she was wrong. We were told she would get radiation but until December. I am extremely confused about the treatment. If the Dr is giving up on her or if the treatment is what is given. We asked the oncologist, and he said the combination of drugs was aggresive and did not want to damage her kidneys, but the combo drug was given once. Can anyone here please let me know how many times a week you were given treatment? Specially if you were given Cisplatin and Gemzar. My mother is 55 years old, and has always been active. She is a strong woman, and I refuse to believe the Dr's statistics. I appreciate your help.

Dulce

haugy

gallbladder cancer treatment
Hi Dulce,i am currently on chemo for gallbladder cancer, i am getting the combination of gemcitabine/cisplatin and get it once a week for two weeks then one week off which makes up a cycle. i am scheduled for 6 cycles and have completed 4 cycles. they do blood work on me once a week to check my functions. i have not had radiation as it was not recommended because of the type of surgery i had. My chemo dose is based on my weight/ height and the duration of 6 cycles is a guidline, i will have a scan when my 6 are done and then it will be determined what is next.
Murray

maudsie

Hello Dulce, I thought I'd
Hello Dulce, I thought I'd add to Murray. (Hi Murray! how are you doing?) Murray's chemo regimen seems to be about the state of the art. Two weekly doses, then off a week, back on, etc., With blood tests before each dose. Dosed preferably through an implanted port. Maybe 5-6 cycles depending. Then a CT scan. Then go from there. Sometimes radiation is involved at some point, sometimes not, depending on location/size/spread of tumor(s). Doses are indeed mostly based on a weight ratio. They are also titrated up or down depending on if they are combined with another chemo agent, and sometimes depending on a person's side effects and/or lab results. Gemzar/cisplatin is a great combo and is used more and more. Sometimes it's just Gemzar (as in my case). Just differing docs for differing reasons. However, I have never heard of just getting two doses (which is usually considered one cycle). Is there a particular reason this doc may be worried about your mother's kidneys being compromised? Ask about her creatinine level. Is it below 1.2 (normal). Or does your mother have any underlying disease issues which would provoke the doc to act so conservatively? I hope you get the answers you deserve. Having this disease is bad enough, and not getting a clear idea of a positive path to take just piles the frustration on. Good luck! let us know what's next!
Maudsie

Lily50

maudsie said:

Hello Dulce, I thought I'd
Hello Dulce, I thought I'd add to Murray. (Hi Murray! how are you doing?) Murray's chemo regimen seems to be about the state of the art. Two weekly doses, then off a week, back on, etc., With blood tests before each dose. Dosed preferably through an implanted port. Maybe 5-6 cycles depending. Then a CT scan. Then go from there. Sometimes radiation is involved at some point, sometimes not, depending on location/size/spread of tumor(s). Doses are indeed mostly based on a weight ratio. They are also titrated up or down depending on if they are combined with another chemo agent, and sometimes depending on a person's side effects and/or lab results. Gemzar/cisplatin is a great combo and is used more and more. Sometimes it's just Gemzar (as in my case). Just differing docs for differing reasons. However, I have never heard of just getting two doses (which is usually considered one cycle). Is there a particular reason this doc may be worried about your mother's kidneys being compromised? Ask about her creatinine level. Is it below 1.2 (normal). Or does your mother have any underlying disease issues which would provoke the doc to act so conservatively? I hope you get the answers you deserve. Having this disease is bad enough, and not getting a clear idea of a positive path to take just piles the frustration on. Good luck! let us know what's next!
Maudsie

Dulce's Mom
Hi Dulce,

Welcome to our group. Thanks for sharing what is going on with your mom. I'm so sorry that you are facing this terrible disease. Most of the statistics regarding this disease are very outdated. You sound extremely frustrated and don't ever feel that you are alone. There are many of us that are willing to help you and your mom.

Have they determined how many cycles she will be receiving? It is true that the protocols are based on the patients height and weight along with what stage she is in, her health and numerous other factors. This is a very aggressive cancer and needs aggresive treatment. Chemo is a very toxic treatment. But in order to get rid of the cancer cells it is a must. I was diagnosed in 2005 Stage 4 at the age of 46 and received chemo in 2005,2006. I had surgery in 2006 and completed chemo in March 2007. I didn't receive radiation as my liver was compromised. My chemo cocktail was Cisplatin and Gemzar. I had to complete over 12 cycles and I was going three times a week but that isn't the norm. I still see my oncologist every other month along with bloodwork and have CT scans every 6 months. I am a survivor and your mom can be one too.

What Maudsie and Murray have both stated is so true. Maudsie is a survivor and Murray is well on his way to being a survivor. Everyone is different and the stories all have similarties and slight differences based on the individuals, where they are being treated at and whether or not the doctors that they are dealing will have experience with this disease.

Ask a lot of questions, seek second opinions and never give up Hope!

Let us know how it is going.

Take Care
Lily

Dulce

Update
Thank you all for replying. We finally got some answers in regards to chemo. We were told combo drug one week, than the following week gemzar. for 8 cycles and then a ct scan. On the 18th was her last chemo, and that day she complained again of her stomach being really hard. (Before she left the hospital this was known). She could not eat for a week, could not really go to the bathroom. The Dr kept saying it was the chemo, a side effect. But then she started vomiting and I took her to the ER this past Monday. We have been here every since. First the oncologist said she has no good nutrition so he thought the chemo was not working because of that. That has been because she cannot really eat, either she vomits, or says she is full. He thought she had an obstruction so they would do radiation. Then today we were told there is no obstruction and they "think" its the cancer that is not letting her eat. The primary Dr pretty much just told us that they won't do anything and she just wait to die here in the hospital bed. I am shocked they are saying "it did not work" when she did not have a full treatment, and they claimed it "spread", when there was really no test done to determine that. They just speculate that is why she might not be processing food correctly. My mother is up, and active, she does not look sick. She is 55 years old. We are now trying to get records so we can get second opinions. We also want her home, because they won't do radiation unless its outpatient, and they won't discharge her because she has the gastric tube.

Lily50

Dulce said:

Update
Thank you all for replying. We finally got some answers in regards to chemo. We were told combo drug one week, than the following week gemzar. for 8 cycles and then a ct scan. On the 18th was her last chemo, and that day she complained again of her stomach being really hard. (Before she left the hospital this was known). She could not eat for a week, could not really go to the bathroom. The Dr kept saying it was the chemo, a side effect. But then she started vomiting and I took her to the ER this past Monday. We have been here every since. First the oncologist said she has no good nutrition so he thought the chemo was not working because of that. That has been because she cannot really eat, either she vomits, or says she is full. He thought she had an obstruction so they would do radiation. Then today we were told there is no obstruction and they "think" its the cancer that is not letting her eat. The primary Dr pretty much just told us that they won't do anything and she just wait to die here in the hospital bed. I am shocked they are saying "it did not work" when she did not have a full treatment, and they claimed it "spread", when there was really no test done to determine that. They just speculate that is why she might not be processing food correctly. My mother is up, and active, she does not look sick. She is 55 years old. We are now trying to get records so we can get second opinions. We also want her home, because they won't do radiation unless its outpatient, and they won't discharge her because she has the gastric tube.

Dulce's Mom
Oh my you really have your hands full! I would definetly try and get a second opinion. Is she on any pain medication? That would contribute to her inability to go to the bathroom. Chemo can sometimes effect your appetite. I'm sure that many will tell you that even though they weren't hungry they would eat just a little to keep their strength up. Hydration is another key to success. If she was vomiting a lot then maybe that is the reason the doctor made the stupid comment that the chemo wasn't working. Who knows??
Speculation is what doctor's always seem to do when they don't have any answers. I have known primary care doctors that say the dumbest things (mine included)as they only have a little knowledge with the subject matter. I always took my oncologists advice before my primary. The good news is that there is no obstruction so it has to be something else. Maybe the dosage was too high. You need to get some answers as it sounds like things are quite evasive at the moment. Your mom is so young and she sounds like a strong women who just needs to make the right connection with the right doctor. Maybe the gastric tube has helped her get the nutrition that she needed but what are your options at this point? I'm sure she isn't ready to leave this earth and she has to do everything she can to get out of the hospital and try to continue on with this battle.
Thanks for keeping us updated.

Take Care and don't lose you Hope or Faith
Lily

maudsie

Dulce said:

Update
Thank you all for replying. We finally got some answers in regards to chemo. We were told combo drug one week, than the following week gemzar. for 8 cycles and then a ct scan. On the 18th was her last chemo, and that day she complained again of her stomach being really hard. (Before she left the hospital this was known). She could not eat for a week, could not really go to the bathroom. The Dr kept saying it was the chemo, a side effect. But then she started vomiting and I took her to the ER this past Monday. We have been here every since. First the oncologist said she has no good nutrition so he thought the chemo was not working because of that. That has been because she cannot really eat, either she vomits, or says she is full. He thought she had an obstruction so they would do radiation. Then today we were told there is no obstruction and they "think" its the cancer that is not letting her eat. The primary Dr pretty much just told us that they won't do anything and she just wait to die here in the hospital bed. I am shocked they are saying "it did not work" when she did not have a full treatment, and they claimed it "spread", when there was really no test done to determine that. They just speculate that is why she might not be processing food correctly. My mother is up, and active, she does not look sick. She is 55 years old. We are now trying to get records so we can get second opinions. We also want her home, because they won't do radiation unless its outpatient, and they won't discharge her because she has the gastric tube.

Dulce's mom...
Dulce, just to add to what Lily has said -- the fact that your mother (temporarily) has a gastric tube is no reason she has to stay in the hospital. Those things can be handled at home with home health nurses, etc. So don't let that stop you from getting the help you need. I assume they have done all the tests (endoscopy, etc.) to rule out obstruction, which would be the first thing one might think of causing these problems. The cancer is not letting her eat? I might buy this if your mother was really sick in the bed with the cancer itself, but your otherwise this sounds silly. And, happily, your mother is up and active. Yes, I totally agree with Lily, keep fighting, keep questioning, and get other opinions.
I am hoping that by the time you receive this, her GI problem has resolved, as it sometimes happens this way. Comes for no known reason, goes away for no known reason.

let us know,

Maudsie

Dulce

I don't know what they did to my mom at that hospital. But I leave one night, and the next morning she is having trouble breathing, high blood sugar, rapid heart beat. The dr's refused to do anything, they wanted us to put her on hospice. My mom was so strong, and she made it clear if she was not out of that hospital that day they were going to kill her there. I begged the Dr to drain her ascites fluid, he claimed it was all tumor because her belly seemed hard, and no sign of fluid. There were never any tests done I read that when ascites fluid accumulates it has to be drained with a needle or complications come. He refused. We took mom home last Monday, we found her a new Dr that would drain her ascites. My mom died a day before her appt, at home, in my brother's arms. I am so angry, that her oncologist, her primary dr, they scratched her, and did nothing to help her. At the ER when they were trying to revive her they kept yelling how much ascites fluid she had. When the primary Dr said she had none. My mom suffered a lot, i took her to the hospital and all she had was constipation, was still very active,and now she is gone She starting vomiting, and a heart attack. The hospital (not the one where they did her harm, another one) tried for an hr to bring her back. But they couldn't. I buried my mom on Tuesday.

Lily50

Dulce said:

I don't know what they did to my mom at that hospital. But I leave one night, and the next morning she is having trouble breathing, high blood sugar, rapid heart beat. The dr's refused to do anything, they wanted us to put her on hospice. My mom was so strong, and she made it clear if she was not out of that hospital that day they were going to kill her there. I begged the Dr to drain her ascites fluid, he claimed it was all tumor because her belly seemed hard, and no sign of fluid. There were never any tests done I read that when ascites fluid accumulates it has to be drained with a needle or complications come. He refused. We took mom home last Monday, we found her a new Dr that would drain her ascites. My mom died a day before her appt, at home, in my brother's arms. I am so angry, that her oncologist, her primary dr, they scratched her, and did nothing to help her. At the ER when they were trying to revive her they kept yelling how much ascites fluid she had. When the primary Dr said she had none. My mom suffered a lot, i took her to the hospital and all she had was constipation, was still very active,and now she is gone She starting vomiting, and a heart attack. The hospital (not the one where they did her harm, another one) tried for an hr to bring her back. But they couldn't. I buried my mom on Tuesday.

Dulce's Mom
Dulce,

I'm so sorry for your loss. You have to be so angry about these circumstances surrounding the care of your mother. It is tragic and don't take this lying down. You need to find out exactly what happened. They need to be held accountable for what happened to her. If nothing else so that they cannot continue to practice medicine this way. I am angry for you also. You were a good son trying to take care of you mom but the situation got out of control and you couldn't re-group it. How could he have made that diagnosis of all turmor if he didn't do any additional testing? It seems once they recommend hospice that they feel there isn't anything else that they can do so they don't do anything at all. That is just wrong. It sounds like the second hospital tried everything in their power to help your mother but unhappily for you and your family it wasn't soon enough. Your mother is in a better place, no longer in pain and she will always be with you. You are a wonderful son and she is really proud of you.

Take Care
Lily

maudsie

Dulce said:

I don't know what they did to my mom at that hospital. But I leave one night, and the next morning she is having trouble breathing, high blood sugar, rapid heart beat. The dr's refused to do anything, they wanted us to put her on hospice. My mom was so strong, and she made it clear if she was not out of that hospital that day they were going to kill her there. I begged the Dr to drain her ascites fluid, he claimed it was all tumor because her belly seemed hard, and no sign of fluid. There were never any tests done I read that when ascites fluid accumulates it has to be drained with a needle or complications come. He refused. We took mom home last Monday, we found her a new Dr that would drain her ascites. My mom died a day before her appt, at home, in my brother's arms. I am so angry, that her oncologist, her primary dr, they scratched her, and did nothing to help her. At the ER when they were trying to revive her they kept yelling how much ascites fluid she had. When the primary Dr said she had none. My mom suffered a lot, i took her to the hospital and all she had was constipation, was still very active,and now she is gone She starting vomiting, and a heart attack. The hospital (not the one where they did her harm, another one) tried for an hr to bring her back. But they couldn't. I buried my mom on Tuesday.

Oh, Dulce, I just read your post and I am so shocked and saddened by this tragic turn of events. I honestly can't imagine how this situation happened or that that doctor steadfastly refused to do what does seems medically indicated -- even if he thought long-term survival was not a possibility, it is still important to do what one can for comfort and to delay suffering. I am so sorry and I would pursue this matter if you have the spirit and energy to do so. I hope you have documented everything as best you can. Right now you must be in a terrible stage of sorrow, frustration, and anger combined. Please feel comforted in knowing that you were a great support to your mother and she knew that. May you find peace. If you have any further outcome, I know I would love to hear form you further.
Great sympathy sent,

Maudsie