Gallbladder Cancer Stage 4

tigressdana said:

Hey Lily
Lily,

Do you mind me asking what age you were when diagnosed? If you don't want to say I completely understand.

Thanks and take care,

Dana

Age Request
Hi Dana,

I was 46 years old at time of my diagnosis. I will be turning 52 this year. Every year I celebrate my birthday as a milestone in my life. No matter what age you are most of us feel alot younger than our actual age. Thankfully I was in pretty good health at the time which helped me. This disease doesn't discrimate as far as age is concerned. The age range spectrum is huge.

Take Care
Lily

tigressdana said:

Hey Maudsie
Maudsie,

Thanks for your support! How are you doing/feeling?

The way the dr talked he doesn't think surgery will ever be an option because there are too many spots on her liver (I suppose there could always be a chance that the chemo might shrink them but I doubt it just the way he talked.)
He said the chemo wasnt going to be very aggresive just enough to attempt to slow the groth of the cancer to give her a year or so. As for telling her, she was there when he said that but she doesn't understand alot of medical things and has dementia which isn't horrible, but her short term memory isn't very good. The dr. made it clear that she would be on chemo for the rest of her life (or until it wasn't working or she couldn't handle it anymore) she after the appt she said he never said that and we must have heard him wrong. It's things like that. I'm actually surprised she agreed to the chemo...but she said tonight that she "didn't really have a choice." Although we, her family and the dr., did tell her that was one of her options. She didn't ask how long she would live without it and the dr. didn't bring that up.
She has her first treatment tomorrow so hopefully she handles it well and doesn't get sick. I'm sure she will be more tired and weak but hopefully that will be the extent of it.
Do you mind me asking what age you were when diagnosed? (I understand if you would rather not say.)
She is going to be 77 and up until the last couple of years noone could guess her age...but shes been showing it lately.

Thanks for everything!

Dana

To Dana
Hi Dana -- I am doing fine, and feeling fine, thanks for asking. You asked my age: when I was diagnosed (2 years ago), I was 62. Most people with GBC are on the old side, but more and more seem to be in their 40's and younger. Your grandmother is 76, I believe you said, and chemo can be tolerated at almost any age, although good underlying heath is helpful, as is a positive attitude. Your grandmother had her first chemo yesterday, and I hope you will report how she is doing and what chemo she is on and how often, if you know. You are a wonderful and supportive granddaughter!
Maudsie

maudsie said:

To Dana
Hi Dana -- I am doing fine, and feeling fine, thanks for asking. You asked my age: when I was diagnosed (2 years ago), I was 62. Most people with GBC are on the old side, but more and more seem to be in their 40's and younger. Your grandmother is 76, I believe you said, and chemo can be tolerated at almost any age, although good underlying heath is helpful, as is a positive attitude. Your grandmother had her first chemo yesterday, and I hope you will report how she is doing and what chemo she is on and how often, if you know. You are a wonderful and supportive granddaughter!
Maudsie

Hey Maudsie
Hey Maudsie!
I'm glad you are feeling and doing well. Both you and Lily were young for a diagnosis but as we all know most cancer doesn't discriminate by age. My grandma...up until about 2 years ago was in pretty good health. She had some smaller issues but who in their 70's doesn't? We started to notice signs of dementia but she wouldn't go to the doctor (she didn't go to a doctor for over 40 years against all of us asking and begging her to go.) She finally started going to a family doctor about 5 years ago but wouldn't go see any specialists and finally 2 years ago she went to a neurologist. She was diagnosed with dementia and lower body parkinson's. And it seems like in the last 2 years everything has gone downhill relatively fast.
She doesn't seem to understand or maybe remember a lot about her cancer. She remembers she has it but that's about it. Her short term memory seems to be going pretty quickly lately so I don't know what will happen.
Right now she has agreed to the chemo treatments. She goes every other week for about 4 hours. She is receiving a mixture of cisplatin and gemicitabine. She has only had one treatment (her next one is this Friday 2/25/11). She actually said she felt "GREAT" the day after her first treatment. They gave her steriods before the chemo so I'm assuming that helped her but on Sunday (2 days after her treatment) she was really tired and Sunday night- Tuesday her feet were really swollen. On Monday she wasn't able to put shoes on. Other than that she seemed to handle it well.
My aunt is taking her to her next treatment and then I will be taking her to her thrid treatment. They said we could drop her off and pick her up but I think one of us being there helps to keep her mind off things.

Thank you for your support. I will continue to update (although as you see I sometimes take awhile to respond. Working full time, going to grad school full time, and trying to help take care of my grandma and spend time with her is time consuming to please forgive me!)

I hope you are doing well!

Dana

tigressdana said:

Hey Maudsie
Hey Maudsie!
I'm glad you are feeling and doing well. Both you and Lily were young for a diagnosis but as we all know most cancer doesn't discriminate by age. My grandma...up until about 2 years ago was in pretty good health. She had some smaller issues but who in their 70's doesn't? We started to notice signs of dementia but she wouldn't go to the doctor (she didn't go to a doctor for over 40 years against all of us asking and begging her to go.) She finally started going to a family doctor about 5 years ago but wouldn't go see any specialists and finally 2 years ago she went to a neurologist. She was diagnosed with dementia and lower body parkinson's. And it seems like in the last 2 years everything has gone downhill relatively fast.
She doesn't seem to understand or maybe remember a lot about her cancer. She remembers she has it but that's about it. Her short term memory seems to be going pretty quickly lately so I don't know what will happen.
Right now she has agreed to the chemo treatments. She goes every other week for about 4 hours. She is receiving a mixture of cisplatin and gemicitabine. She has only had one treatment (her next one is this Friday 2/25/11). She actually said she felt "GREAT" the day after her first treatment. They gave her steriods before the chemo so I'm assuming that helped her but on Sunday (2 days after her treatment) she was really tired and Sunday night- Tuesday her feet were really swollen. On Monday she wasn't able to put shoes on. Other than that she seemed to handle it well.
My aunt is taking her to her next treatment and then I will be taking her to her thrid treatment. They said we could drop her off and pick her up but I think one of us being there helps to keep her mind off things.

Thank you for your support. I will continue to update (although as you see I sometimes take awhile to respond. Working full time, going to grad school full time, and trying to help take care of my grandma and spend time with her is time consuming to please forgive me!)

I hope you are doing well!

Dana

please help me help my Mom
Hi Lily 50, Thanks a lot for your prayer & support. My mother she finally arrived here in U.S. about a week ago. These past few weeks have been very stressful for us. We took her to University Hospital of Cincinnati & she was there for a week. Now she's home with us. They've told us there is nothing they can do for her except to put her on chemo for whatever time that she has left. They are giving us few months. I'm not letting them take away my hope & faith but at the same time, I'm terrified. I'm searching for survivors who've had the same case her like my mom.
This is her situation, her cancer happens to be Cholangiocarcinoma cancer. I don't know if anybody is familiar with that type of cancer. It's around & on her small intestine as well as on her liver blood vessel. Usually for this type of diagnose, a kind of surgery that is called Whipple surgery is recommended; however, they are saying they won't be able to do that procedure for her 'cause the cancer is showing on her blood vessel. Has anyone had this kind of problem when they were diagnose? What Chemo cocktail worked for you? & where you able to have the surgery after wards? Which surgeon helped you? My mom will start her chemo by the end of next week. she's having hard time eating so she's eating very little & I would like to know from survivors, What should be good to feed her? The doctors are not helping a lot. I guess it's 'cause they already believe there is no hope for her. she's also a type II diabetic. I'm keeping my faith & hope 'cause that's all I have right now, & I don't want any doctor to take that away from me. Please I need help so bad.

seli said:

please help me help my Mom
Hi Lily 50, Thanks a lot for your prayer & support. My mother she finally arrived here in U.S. about a week ago. These past few weeks have been very stressful for us. We took her to University Hospital of Cincinnati & she was there for a week. Now she's home with us. They've told us there is nothing they can do for her except to put her on chemo for whatever time that she has left. They are giving us few months. I'm not letting them take away my hope & faith but at the same time, I'm terrified. I'm searching for survivors who've had the same case her like my mom.
This is her situation, her cancer happens to be Cholangiocarcinoma cancer. I don't know if anybody is familiar with that type of cancer. It's around & on her small intestine as well as on her liver blood vessel. Usually for this type of diagnose, a kind of surgery that is called Whipple surgery is recommended; however, they are saying they won't be able to do that procedure for her 'cause the cancer is showing on her blood vessel. Has anyone had this kind of problem when they were diagnose? What Chemo cocktail worked for you? & where you able to have the surgery after wards? Which surgeon helped you? My mom will start her chemo by the end of next week. she's having hard time eating so she's eating very little & I would like to know from survivors, What should be good to feed her? The doctors are not helping a lot. I guess it's 'cause they already believe there is no hope for her. she's also a type II diabetic. I'm keeping my faith & hope 'cause that's all I have right now, & I don't want any doctor to take that away from me. Please I need help so bad.

OSU - The James
Sali,

We are taking my grandma to the James Cancer Center at Ohio State...I see that you are in Cincinnati? Its only about 75-90 minutes. She goes to Dr. Saab....we were lucky that we got in so quickly though because we knew someone who knew someone. Maybe try there? Just a suggestion. Good luck! Thoughts are with you and your family!

Dana

My brother was just diagnosed with GB cancer
Just found this site. We don't know what to do so I'm hoping that someone can help us.

My brother, 54 years old, was just diagnosed with gallbladder cancer. He went into the hospital initially for gall stones. I don't know what stage it is. It has attached itself to the liver and some in his lymph nodes. He is jaundice and his liver is not blocked, but his bilirubin count is high. They were going to put a stent in to drain the liver but found it is not blocked. For the past 2 weeks he's been in and out of the hospital, they did numerous tests, biopsies, they say his liver is fine, but they don't know why his liver isn't functioning 100%. There is no infection in the liver. They had scheduled surgery next week to remove the gallbladder and cancer and take part of the liver, and they wanted to start him on chemo or radiation to shrink the mass and while in surgery they were going to take sections off of the liver until they found healthy liver but have found that his liver is ok. Now they are saying that they won't do the chemo cuz the liver won't metabolize it and if they put him on anesthesia it might damage the liver or worse. They won't do any surgery until his bilirubin count comes down. Help! We don't know what to do. Are the doctors wrong in what they say about not doing the surgery and what they say about the liver not being able to metabolize the chemo or radiation and being compromised? They said that they will continue to run tests but he is not getting any treatment at all. We need a solution urgently.

Lily50 said:

Glendalough's Brother
Hi,

Welcome to this discussion board. We are glad that you found us!

Your brother is fairly young and I hope that he was in fairly good health before his diagnosis. Many people have been told that they need surgery for gall stones and then have heard the devasting news that they have Gallbladder Cancer. It would be helpful if you could find out what stage he is in. I am a 5 year Stage 4 Survivor. This is a disease that you have to have patience with. Many tests, biopsies, numerous doctor's opinions is the road that he is on right now. Everything that you have stated about the surgery to remove the gallbladder, taking part of the liver, removal of cancer cells and lymph nodes and chemo and/or radiation is the standard protocal. I have never heard of not receiving chemo because the liver won't metabolize it. I have heard of not having radiation if the liver is compromised. I didn't have radiation because of that very reason. I do know for a fact that if your bilirubin count isn't within the normal range you won't be able to have surgery. That was told to me before I had my surgery. Luckily for me my counts came down so that I was able to have surgery.
Where is your brother receiving treatment? Is he in the US, Canada or somewhere else?
The reason I am asking is because we have people scattered all over the world. Maybe someone can suggest doctor's in his area. I am a firm believer in getting second, third and even fourth opinions. Your brother has to be an advocate for his healthcare and if he is unable to do that he needs someone to be an advocate for him.
Let us know how he is progressing.
Take Care
Lily

Lily50
Hi,

I am from Hong Kong.

My mum (62 years old now) was diagnosised to have gallbladder cancer stage IV in July 2010 which had already attached to her pancreas, liver and intestines and after the unsuccessfuly and anticipated 16 hours surgery, it turned out that she was removed from the operation theatre after 2 and 1/2 hours. The doctor only connected the liver to the intestines and did not remove anything cancer cells from mum except he took some for medical test.

Since August 2010, mum has been under the chemo and 2 weeks ago, the CA 19.9 index started to increase again so that we had a MRI and it showed that the trauma got back to the original size. Accordingly to the doctor, it is time to change chemo medicines. Mum had her first injection of the new medicines last Friday, she immediately lost all her apetite and felt the pain in the area where the trauma is and she felt very tired.

I understand that each combination of chemo medicine lasts around 6 months so that I checked with the doctor apart from the second combination how many more combinations we would get, the doctor's reply was that this second combination should be the last as there have not been a lot of chemo medicines specifically for gallbladder cancer. Even if he uses them, the side effect would be a bit unbearable.

of course, once we found out mum had the cancer last July, I had consulted about 5 specialist doctors and any possible cure. All of them said "No".

I read from your message immediately above that you are 5 years Stage 4 survivor, I just thought that I really have the need to write to you although I know there is not much you or I can do for my mum...

By any chance, I would be grateful if you could please advise what kinds of treatment you were or have been taking. Do you mind sharing a bit?

Thanks and with heaps of love and best wishes to you
Mandy

Lily50 said:

Mandy's Mum
Hello Mandy,

Welcome to our board, we are so glad you have found us. I'm sure that you and your mum were devastated when the long surgery that was scheduled was cut short. Sometimes that does happen and the doctors have decided that it would be too much risk for the patient.

After a time period many have had to have their chemo medications changed due to their tumor(s) no longer responding to the medication. What chemo medications has she had and what is the new medication? There are side effects with almost all chemo medications. Some people do very well and others have issues. It depends on the person. Your mum's body had gotten used to the chemo that she was receiving and now that it has been switched her body is letting her know that this isn't the same stuff that she was receiving before and it doesn't like it.

That is a true statement "Cure" isn't possible but there is alway "Remission". I was originally diagnosed in 2005 and here it is 2011. It is a long journey but with Hope and Faith anything is possible.

What this board does for others is give support, recomendations and Hope. Ask us any questions you want and we will try to answer your questions.

In August of 2005 I had CT Scans, ultrasounds, needle biopsies to determine my diagnosis of GBC Stage IV. I received chemo treatments from December 2005 thru September 2006. I went four days a week 6-8 hours daily for two weeks and then off for one week. I was receiving Cisiplatin and Gemzar. On the off week I was receiving White and Red Blood cell shots. My platlets tanked and I had to recieve a transfusion. During this timeframe I went twice to the surgeon to set up my surgery but he just kept sending me back for more chemo. In October I had an ERCP which stands for endoscopic retrograde to see if I would be able to have surgery. On October 13,2006 (Friday the 13th) I had an Extended (radical) cholecystectomy, it was a very long surgery (12 hours). My gallbladder was removed along with a wedge resection of my liver, 8 Lymph nodes, common bile duct, ligament between my liver and intestines, removal of the duodenum, and part of my stomach. 4 of my lymph nodes still had cancer cells in them so I would have to do an additional 3 months of chemo. I had a PET Scan in January of 2007. I continue to see my oncologist every 8 weeks and have blood taken for my markers and I have CT scans every 6 months. I have had no recurrance and for that I am truly blessed. Light exercise, healthy eating, meditation, and yoga have all been helpful.

Hope that answered your questions and if I left anything out let me know.

Take Care
Lily

Hi Lily,
Mum’s case: in
Hi Lily,

Mum’s case: in July 2010, Mum was diagnosed to have the gallbladder cancer Stage 4, the cholecystectomy operation was scheduled to take place on 14 July 2010 and we were advised that the doctor would also need to remove the duodenum, part of the pancreas, about 40% of the liver and part of the intestines and the operation theatre was then booked for 12-16 hours. However, once the doctor opened up mum’s body, he said the cancer cells had spread over to her abdomen wall and the tumors are attached too tightly to the nearby organs, which operation only took 2 1/2 hours. The doctor later told us that if he completed the whole process of removing the organs as scheduled, it would take a long period of time for mum to recover and, maybe at the same time, the cancer cells may build up very quickly, then mum might miss the chance to take the chemo medications to control the cancer cells. Therefore, all he did was only to connect the liver directly to her intestines ( a by-pass) as a precaution to reduce the side-effects (vomit) for mum when she take the chemo treatments.

I then visited a number of oncologists and they all came back with the same answer and agreed with what the operation doctor had said. Then, mum was then persauded to have chemo in August 2010 (which she originally refused). The medications then were used called Gemzar and Xeloda, which fortunately happily last until early March 2011. the side effects are minimal, mum only lost some hair and felt tired a bit during the medication weeks, during the off weeks, she was happy and comfortable. Sometime she has very good appetite too.

The CA A 19.9 index dropped from 1,669 to 125. During the last 7/8 months, mum only has about 3 white blood cell shots and about 3 times for blood transfusions. During these 7/8 months, mum also the one PEST scan and one MRI scan until early March 2011 when the index went up and then she took another MRI scan showing the tumor grows bigger to the original size.

On 28 March 2011, she started the new combination of medication called oxaliplatin. She had the injection at the clinic and carried a tube for another bag of medicine for injection for 48 hours (substitue of the edible tablets), she immediately lost all her apetite, felt pain in the area where the tumor is, very, very tired. Even the smell of the food makes her stomach extremely uncomfortable and stuffy, she said it’s like she is having the morning sick as a pregnant woman. She couldn’t even digest a few mouthful of water.

We went to see the doctor today and told him about mum’s situation and he suggeted we do blood and urine tests and go back this Friday.

Lily, I understand that there must be differences between your goodself and mum, but I just wonder why you can take the cholecystectomy but mum can’t!! For which I have raised a few times with our existing doctor but he still says "can't do".

From far away in Hong Kong, I would like to sincerely send to you my blessings and thank you again for sharing with me. I am still adjusting myself everyday. It seems that there isn’t a firm answer of whether I should hold on to the HOPE and FAITH and ask mum to continue bearing in mind that I really can’t do anything to comfort her uneasiness…. Sometime I would think sooner or later (you know) the "end" will come, so as long as there isn’t much pain, let her go…. But I don’t want to…. Mum said she can’t just go without seeing my 6 years old son to grow bigger and stronger….. (my heart is breaking to pieces…….)

Heaps of love from Hong Kong
Mandy

MandyCHK said:

Hi Lily,
Mum’s case: in
Hi Lily,

Mum’s case: in July 2010, Mum was diagnosed to have the gallbladder cancer Stage 4, the cholecystectomy operation was scheduled to take place on 14 July 2010 and we were advised that the doctor would also need to remove the duodenum, part of the pancreas, about 40% of the liver and part of the intestines and the operation theatre was then booked for 12-16 hours. However, once the doctor opened up mum’s body, he said the cancer cells had spread over to her abdomen wall and the tumors are attached too tightly to the nearby organs, which operation only took 2 1/2 hours. The doctor later told us that if he completed the whole process of removing the organs as scheduled, it would take a long period of time for mum to recover and, maybe at the same time, the cancer cells may build up very quickly, then mum might miss the chance to take the chemo medications to control the cancer cells. Therefore, all he did was only to connect the liver directly to her intestines ( a by-pass) as a precaution to reduce the side-effects (vomit) for mum when she take the chemo treatments.

I then visited a number of oncologists and they all came back with the same answer and agreed with what the operation doctor had said. Then, mum was then persauded to have chemo in August 2010 (which she originally refused). The medications then were used called Gemzar and Xeloda, which fortunately happily last until early March 2011. the side effects are minimal, mum only lost some hair and felt tired a bit during the medication weeks, during the off weeks, she was happy and comfortable. Sometime she has very good appetite too.

The CA A 19.9 index dropped from 1,669 to 125. During the last 7/8 months, mum only has about 3 white blood cell shots and about 3 times for blood transfusions. During these 7/8 months, mum also the one PEST scan and one MRI scan until early March 2011 when the index went up and then she took another MRI scan showing the tumor grows bigger to the original size.

On 28 March 2011, she started the new combination of medication called oxaliplatin. She had the injection at the clinic and carried a tube for another bag of medicine for injection for 48 hours (substitue of the edible tablets), she immediately lost all her apetite, felt pain in the area where the tumor is, very, very tired. Even the smell of the food makes her stomach extremely uncomfortable and stuffy, she said it’s like she is having the morning sick as a pregnant woman. She couldn’t even digest a few mouthful of water.

We went to see the doctor today and told him about mum’s situation and he suggeted we do blood and urine tests and go back this Friday.

Lily, I understand that there must be differences between your goodself and mum, but I just wonder why you can take the cholecystectomy but mum can’t!! For which I have raised a few times with our existing doctor but he still says "can't do".

From far away in Hong Kong, I would like to sincerely send to you my blessings and thank you again for sharing with me. I am still adjusting myself everyday. It seems that there isn’t a firm answer of whether I should hold on to the HOPE and FAITH and ask mum to continue bearing in mind that I really can’t do anything to comfort her uneasiness…. Sometime I would think sooner or later (you know) the "end" will come, so as long as there isn’t much pain, let her go…. But I don’t want to…. Mum said she can’t just go without seeing my 6 years old son to grow bigger and stronger….. (my heart is breaking to pieces…….)

Heaps of love from Hong Kong
Mandy

Mandy's Mom
Hi: Lily and Maudsie gave you great information. One thing you might try re the oxaliplatin is make sure your mom doesn't get cold - no cold drinks, no ice in drinks, no really cold food like ice cream (which I love!), no opening the fridge without a face mask and gloves. I am going to be starting FOLFOX which includes oxaliplatin and 5FU and this is what I was told (and living in Canada hard to avoid the cold!). You only need to avoid cold for 3-5 days after chemo. The rest of the chemicals are often given as a take-home pack with constant infusion. As well, they should be giving her anti-nausea pills for after-chemo so she can tolerate food better. Hope this helps!
Cheryl

MandyCHK said:

To: Lily, maudsie and westie66
Thank you so much for the supports from maudsie and westie66. your messages are well noted. Yes, mum has been (sometimes only) also taking Ensure as supplement when she lost her apetite and realising that she really needs to consume something otherwise her stomach would ache again and maintain her nutrition. so she would have Ensure and maybe half a slice of bread.

Yes westie66, the nurse from the clinc reminds us of the "cold" side effect. in Hong Kong, now is spring and the weather is around 22-28 degrees and she still feesl cold when she takes a shower and has 3 layers of clothes.

She told us last nite and she felt better since the injections on 1 April 2011, which is good and a great relief.

also, she couldn't sleep at nite and she is now on sleeping pills.

Lily, the more i think about your message last night the more inspiring it looks in relation to your successful operation, your successful story stayed in my mind all nite. I fully understand that it depends on different person's situation, however, I still think i should ask you. OK, I know we live in Hong Kong, however, with the not-so-easy-to-give-up spirit and with HOPE and FAITH, I wonder if you could in any way sending me your operation doctor information and details and I wonder if i can courier mum's medical report and history for his / her consideration to see if an operation is still feasible. my family and I are looking forward to hearing from you in relation thereto.

Lastly, one more piece of information, in July 2010 when mum was diagnoised the cancer, the doctor told us that if mum refused chemo, it will last 4-6 months and if she did, it will last for a further 4-6 months. I wonder if the stage IV still covers its various sub-stage thereunder? Since mum was 61 years last year and does it mean the age of the patient and the actual sub-stage of the cancer designate the length of her remaining life time by the doctor?

heaps of love and blessings to you all here.
mandy

Mother with Stage 4
Hi to all of you (some of whom I have been luck enough to meet on other boards - Maudsie

My mother has Stage 4 GBC, and starts Gemzar/Cisplatin next week for a recurrence in one lymph node. She's consulted with UCLA and UCSF, and is having her treatment in Monterey, CA. I'll be sharing as much information as I can as my family embarks on this journey. I really do believe the medical community is turning the corner on treating, and managing, this dreadful disease, and our loved ones are much better equipped to fight this disease than they were even 2 years ago.

Thanks to all of you for your inspiration.

My mothers brief history:

Jan 2010 diagnosed
Jan 2010 cholystectomy (UCLA)
May 2010 Whipple (UCLA, Dr, Reber - the best) after more cancer discover in her bile duct inside pancreas
Great path report postwhipple (clean margins, clean lymph nodes)
March 2011 confirmed recurrence in 1 lymph node (2cm well circumscribed)
April 19, 2011 Begins Gemzar Cisplatin

The shock is horrible, and the reaction from doctors is even worse... there's just no easy way for them to say 'stage 4'... but I'm convinced that even metastatic cancer is now a manageable chronic disease , not a death sentence (as Lily has proven!). Science is now on our side.

Looking forward to sharing great stories of successfull treatments!

Alex