Gallbladder Cancer Stage 4

kjp said:

What next
Hello,

Thank you again, Lily, for your response. I am a bit confused right now and hope that maybe you or someone else can assist in some way.

As I mentioned before, my mother was diagnosed with Stage IV gallbladder cancer. We were told at the time of the diagnosis that the cancer had spread to her liver and surrounding lymph nodes. When we first met with the doctor he informed us that there were several different chemo cocktails that could be used in attempts to treat the cancer. My mother was "assigned" a combination of Gemcitabine and Xeloda, which she took over two, two-week cycles. She was given one week "off" between each cycle and then at the end of the two cycles she had two weeks off. Next, she had a CT scan taken.

This week we met with the doctor to go over the CT scan. He informed us that additional cancerous spots were found on the liver and possible, but not significant activity, occurred in the lymph nodes. Obviously, this was not the news we wanted to hear. Since this combination didn't work, I expected to hear the doctor offer another combination, but he brought up palliative care right away. When I asked about trying another combo he said it would likely be a a combo of an FU-5 drug and cisplatin; he described this combo as highly toxic, hard on the body, and that there was only a 10-15% chance it would be effective...and if it was effective only minimally. Overall, the feeling I got from him was to not try anymore chemo and instead continue living the highest quality of life without treatment.

At the first appointment, he said there were options and sometimes there was trial and error involved. I know this is a difficult cancer to treat, but I feel like he's given up on my mom already. I'm wondering if this happened to anybody else, where one combo didn't work, but another did. Has anybody had to try different combinations before finding an effective one? If you anyone has been on cisplatin and a FU-5 combo, how did you feel? What were the side effects for you?

If anyone has any input or advice to share, I would greatly appreciate it. Thank you again!

newnewkb said:

First CT scan is good!!
Hi Lily,
My mom (and family) received great news that her chemo treatment is working after her first CT scan since her diagnosis! Before this news, she was ready to die but now she has turned a new leaf and ready to live again! Her determination to fight this disease can be seen as she’s eating and drinking and trying to gain the weight back! It’s amazing to see this change!
I want to share this news with you because you have been a great support system for me since my mom’s diagnosis when I thought there was no light at the end. You provided me the strength to be able to tell my mom that she has to have faith and hope! Thank you for starting this blog or all of us!!!
I’ll keep you posted as she continues with her treatments!!! Best Regards, Tina.

Miguel007 said:

Since spices are limited I'm
Since spices are limited I'm hoping maybe someone on here with a similar problem can shed some light on this. I'm a seventeen year old college student, and though my diet is very healthy with the exception of a few things I'm working to eliminate gallbladder Stay away from fatty foods. I did have mine out. Lucky for me, I had just had my first child and my OB figured out what the issue was. I was diagnosed and had surgery within 2 weeks. My mom suffered for 5 years before they figured out what was wrong with her.

Take care people

Lily50 said:

Best Friend's Mom
Hello Elizabeth,

You are such a good friend to try and help your friend thru such terrible circumstances.
Those books than Jan recommended are wonderful. Your friend is so young to have to deal with something like this. I lost my father at the age of 21 and it was very difficult. There had to be a reason why they transferred her to hospice, do you know what that is? Since she was receiving treatment with 12 different strains her body was being attacked very aggressively. There is such a thing as chemo poisioning where she was given too much. When they are doing aggressive treatment that is a possibility. I spent 5 days in the hospital when they did that to me. Oncologists sometimes won't admit it but it can happen. My oncologist admitted it to me and he stated that on numerous occasions that he took me to the edge and back.

I don't believe there is such a thing as false hope. Without hope and faith there is nothing. But Jan is right that you have to come to terms with the possibility of death, as this is what life is all about. No matter how hard it may be to even discuss it. I'm sure that since you stated that she was such a vibrant women to see her this way can be quite unbearable for her daughter. Counseling is always as good idea, as sometime therapy can give you clarification on certain issues. I'm sure that she is probably heavily medicated at this time and cannot convey to you or her daughter what she would like to do. It is just an awful situation and for you to be there for your friend means a lot.

At this time are you aware of everything medically that has happened to her? Do not be afraid to ask questions and research information. Someone needs to be her advocate! If she doesn't have a spouse, who knows what her wishes are? These are things that people don't want to discuss or until they have to because they are in a life threating situation do they discuss it. We all like to think that we will be around forever.

Let us know how it is going.
I'll be praying for her and her family.
Take Care
Lily

Lily50 said:

Dana's Grandmother
Hi Dana,

Welcome to this forum. I'm so glad you found us. I'm Lily and I am a gallbladder cancer survivor. I was diagnosed in 2005 and I too was given a short time frame to live. I had gallbladder cancer with tumors in my liver, stomach,intestinal track and lymph nodes. I had what is called a Extended (radical) cholecystectomy. They removed my gallbladder and a wedge shape section of my liver along lots of other stuff. It wasn't an easy surgery but I made it. I did chemo before and after my surgery. Since the liver is one organ that can regenerate itself unless the whole liver is very compromised they won't usually do a transplant. But I could be wrong. My surgeon was Dr. Howard Reber at UCLA in California. He is part of the Jonnson Cancer Center and the Pfleger Liver Institute.

Don't be discourged about the timeframes as these stastics are old and outdated. Anything is possible. You should always get a second, third even fourth opinion if necessary. Don't give up to quickly. Has she had a PET Scan, CT Scan, MRI and what were the results?

Being stubborn is part of whom your grandma is and it could work to her advantage. The fact that she is willing to go see what the the Internal Medicine doctor has to say means that she isn't really willing to give up yet. Even though she says she doesn't want treatment in her heart she wants to fight. I think that honesty is the best policy so that she can have a clear picture of what she is going up against. Sometimes other doctors may let something slip unintentionally when they think the patient is already aware of the situation. You really don't want her feel that she has been blindsided. She has to be her own advocate for her healthcare and if she is unable to do that then someone needs to be her advocate.

Make sure that you ask any questions that you feel could be important. Write them down before going to the doctor. It helps you to remember to ask. Such as if she was to try chemo and/or radiation how many cycles would it entail? What chemo medication would she be receiving? From the blood tests what are the tumor markers? Make sure you get copies of any tests that she had had and start building a medical profile for her if you continue to go see other doctors. Not only does she need to find a doctor that she is happy with but also someone who has experience with this type of cancer.

Good luck to her tomorrow and let us know how it goes. Ask us anything and we will try to help.

Take Care
Lily

Lily50 said:

Dana's grandma
Hi Dana,

I'm doing quite well. I am going for my 6 month CT Scan tomorrow and it will be a good one. It is a neccessary evil for me and even though I would prefer not to go I have to.
My oncologist is a little overprotective and he just wants to make sure that if anything is going on that we catch it right away. Better safe than sorry I always say.

I wasn't in much pain prior to my diagnosis. My symptoms in the beginning were just bothersome. I had a tendency to ignore things as I was so busy. When I received my diagnosis I felt like it was coming out of left field. But I tackled it head on and just kept going.

I'm glad that I could help with your questions.
Good Luck
Take Care
Lily

maudsie said:

Hi Dana
Hi Dana, I just want to add to Lily's comments. I was diagnosed with GBC 2-1/2 years ago, after I had my gallbladder removed for some vague gassy pains and some vomiting. Surgery is the first and best option for dealing with GBC when it is possible. So usually the next step in a case like your grandmother's is, if she is in good shape physically otherwise, to have a surgery to remove her gallbladder, some surrounding lymph, and a large wedge of liver that sits near or touches the gallbladder. (I did this and had the cancer seen on my liver removed....we hope that is all). If tests such as CT and PET scans show that the liver is more involved than what can be surgically removed, as seems to be the case with your grandmother, that does not mean that this type of surgery would not be an option down the road. Often chemo can shrink tumors enough to make surgery once again an option. All cases are different and everyone is different. (by the way, liver transplantation is probably NOT an option). A good conference with an experienced oncologist would be in line. And I agree with Lily, it would be good if your grandmother were aware of her situation so she can make informed decisions and choices, what to do, and what not to do. Good luck! Prayers your way.....

Maudsie

seli said:

My mother has been diagnose with stage lV GBC
Hi

I'm clueless & I'm so happy to find this web with all these wonderful survivor's stories. My mother is 59yrs old & has been been diagnosed with gallbladder cancer few weeks ago. She was feeling pain & when she went to the hospital, the doctor told her, "they have to remove her gallbladder ASAP & they did. That's when they discover the cancer. Her cancer stage is lV and Thanks to God, it hasn't spread to anyone of her organs yet. She'll be back to U.S. on Feb 7th, 2011 and she will either be in Cincinnati OH or Atlanta GA, & I'm looking for any survivors who had recieved the treatment either in Cincinnati or Atlanta area. We would like to find her the right place & find the right doctor,'cause Once she arrives, We don't want to waist any time. We want her to start with the treatment ASAP. If it's possible it'll be great if she can get the threatment in either one of those 2 cities(cincinnati or Atlanta); However, as long as it's anywhere in U.S.,I'm up for all help I can get. Please let me know, anyone. My faith is stronger than ever & I'm not ready to loose it. I just hope my mother has as much faith & hope I have or even more, 'cause she needs it more than me to fight & win this scary disease.

Thanks
Seli

seli said:

Hi Lily50 & Maudsie
Thank you so much for all the hopefull, positive comfort & ideas you are giving me. It means a lot. It's so great to connect with such amazing survivors like you too. It's giving me so much hope. As I was waiting for my mother arrival I've been login in to this website to keep my hopes with me. I believe in God more than anything 'cause he's the only one who can do anything that's impossible to human. He can do it all. I also believe in miracle & I'm praying everyday that my mom is going to have her second miracle in life. She already had her first miracle when she survivor from 3rd degree burn in 2003 & I'm hoping her second miracle will be to beat this scary disease.
Lilly50 I was checking my email this evening & while I was responding for your email, I got an expected call from Rome saying My mother's surgery opened while she was in the plane & the flight had to leave her in Rome to get that fixed. I Thank you kindly for your email. They say she's in good hand. She was very weak 'cause of not being able to eat anything & she was getting iv to give her a strength for the 18hrs that she had to be in the plane. I always say things happen for a good reason. May God wanted her to get more iv before she gets here, may be that's why this happened so For now I have no idea when exactly my mom is going to be here in U.S. but I'm hoping in the next day or so. I'll know tomorrow for sure. Please keep her in your prayers. & I'll let you & Maudsie her situation once I know something & all the status once she arrives here. Thanks a lot for all the support & hope.

I'm so proud of all of you.
Seli

maudsie said:

Hi Dana
Hi Dana, I just want to add to Lily's comments. I was diagnosed with GBC 2-1/2 years ago, after I had my gallbladder removed for some vague gassy pains and some vomiting. Surgery is the first and best option for dealing with GBC when it is possible. So usually the next step in a case like your grandmother's is, if she is in good shape physically otherwise, to have a surgery to remove her gallbladder, some surrounding lymph, and a large wedge of liver that sits near or touches the gallbladder. (I did this and had the cancer seen on my liver removed....we hope that is all). If tests such as CT and PET scans show that the liver is more involved than what can be surgically removed, as seems to be the case with your grandmother, that does not mean that this type of surgery would not be an option down the road. Often chemo can shrink tumors enough to make surgery once again an option. All cases are different and everyone is different. (by the way, liver transplantation is probably NOT an option). A good conference with an experienced oncologist would be in line. And I agree with Lily, it would be good if your grandmother were aware of her situation so she can make informed decisions and choices, what to do, and what not to do. Good luck! Prayers your way.....

Maudsie