gallbladder cancer stage 4

bile duct cancer
My Mom who is 86 survived bile duct cancer surgery. It had spread to her liver and lymp nodes. She is undergoing chemo and radiation. Don't give up. Find another doctor if this one is sweeping it under the carpet.
You are in my prayers

maudsie said:

Evelyne
Evelyne, I am sorry for your news -- hopefully chemo can keep your cancer in check. The swollen stomach sounds like "ascites" to me, possibly the result of the cancer in your peritoneum. Your docs should be able to offer some remedy ( or relief) for this.
Best of luck! Maudsie

Evelyne
Hi Evelyne: I, too, am sorry that you have been diagnosed with Stage IV gallbladder cancer. That is what I was diagnosed with in Oct 2009 and here I am today. Doctors tend to be negative about gallbladder and peritoneum cancer but the stats they have are old. Things are improving, albeit slowly, as rare cancers don't get looked at as often as the more common ones. Anyways, I would definitely suggest another opinion. Do you mean London, England (I am in London, Ontario)? I had my gallbladder out with its tumour and part of my liver where the tumour had infiltrated in April 2010. I was told after the surgery that the tumour had seeded to the peritoneum where I had some cancerous nodules (6 it turns out). Little hope. Anyways, I had chemo (cisplatin + gemcitibine) for 12 treatments - no new cancer but the nodules didn't shrink. My oncologist put me on oxaliplatin + irenotecan + 5FU pump (latter for 42 hrs) for 12 treatments (finished last week) and my latest MRI shows no new cancer anywhere, no growth of nodules, and some even shrank. So I'm off chemo until January and he is looking at surgical options. I feel great. Luckily my tumour protuded out from the gallbladder at the opposite end from the bile duct so my bile duct seems OK.
Keep us posted! Several people on this discussion board have survivied Stage IV gallbladder cancer so you can too.
Cheryl

westie66 said:

Ascites
Hi Evelyne: If you check the Peritoneum Cancer discussion board, you'll see a lot of folks have ascites (liquid in the peritoneal cavity). It is more common with primary peritoneum cancer and ovarian cancer spread to the peritoneum. A standard treatment is drainage which relieves the problem a lot. My swollen abdomen is from an incisional hernia where the intestines have broken through at the incision site from my surgery April 2010.
Cheryl

searching for hope
my mom was diagnosed 3 d ago with gallbladder carcinoma... multiple liver mets and nodes...i refuse to be hopeless but i am a doctor and know the statistics i keep telling myself that my mom is a person and not a ratio in a hem/onc journal... i have appreciated the experiences of others that are shared here... thanks to all of you

sherrygj said:

searching for hope
my mom was diagnosed 3 d ago with gallbladder carcinoma... multiple liver mets and nodes...i refuse to be hopeless but i am a doctor and know the statistics i keep telling myself that my mom is a person and not a ratio in a hem/onc journal... i have appreciated the experiences of others that are shared here... thanks to all of you

Statistics for Gallbladder Cancer
Hi: That's how I felt when I was told about them but the stats can be old (from the 70's) and often gallbladder cancer isn't diagnosed until the tumour is too big to do anything about. Somehow we need to get better screening. My GP noted an unusually high liver enzyme level when I had my annual physical and that's how we were alerted that it may have been caused by the gallbladder tumour. Unfortunately gallbladder cancer is still rare (although the numbers are increasing or the diagnoses anyways) so there isn't a great deal of research on it. I had part of my liver resectioned but still have the peritoneum nodules (6 of them) which are stabilized and even shrinking a bit with the oxaliplatin + irenotecan + 5FU chemo treatment. Surgery may now be the next step.
Good luck to your mom.
Cheryl

sherrygj said:

searching for hope
my mom was diagnosed 3 d ago with gallbladder carcinoma... multiple liver mets and nodes...i refuse to be hopeless but i am a doctor and know the statistics i keep telling myself that my mom is a person and not a ratio in a hem/onc journal... i have appreciated the experiences of others that are shared here... thanks to all of you

Hope
Hi,

Sorry to read your post so late but I'm Lily and I am a 6 year survivor of Gallbladder Cancer Stage 4. The statistics are very outdated with regards to this disease. As a doctor yourself you know that having the best doctor in the field that has experience with this disease can really make a difference. You have resources available to you that many don't so find the right doctors to help your mom on this journey. What a great advocate your mom will have since you love her and are a doctor. What a great combination!
You can see other survivors on the thread Gallbladder Cancer - 2011.

My email address is LGregg6293@Aol.Com if you would prefer to talk that way. Just put ACS-CSN in the subject line so it doesn't end up in my spam folder.

Take Care
Lily

Lily50 said:

Welcome
Hi Evelyne,

Sorry to read your post so late but I'm Lily and I am a 6 year survivor of Gallbladder Cancer Stage 4. I too was given a short timeframe to live but they were wrong!

My chemo cocktail was gemzar and cisiplatin. I had very aggressive treatment and there were many twists and turns on the road but I'm still here to talk about it. It took me 11 months of chemo and time to find the right surgeon to help me. You have to find a team that will become vested in your success. You might have to talk to many doctors until you find the right ones.

Ascites is very common and can be treated.

Don't let any doctor take away your Hope and don't let them treat you like a statistic. You are a person that is fighting for your life and they should respect that.

Take Care
Lily

Your post
Hi Lily-

I am a 46 yr old female. On 12/2/11 I was diagnosed with Stage IV Gallbladder cancer. I was in the hospital for 5 weeks before they determined what was causing a myriad of digestive issues. Unfortunately it took an open surgery to find the cancer, as the surgeons believed I had large stones in my bile duct, which of course turned out to be tumors. I did have my gallbladder removed on 2/14/11, and the Onc believes that the surgery released the cancer cells into my body.

I have been given a a grim prognosis, but as long as I have breath in my body I am going to fight, even though I have been told that success isn't possible. I am currently undergoing chemo with gemcitabine and cisplatin and have a cat scan scheduled for later this month. So, I still have hope, even though I am told I'm kidding myself. Which makes any type of hope even more significant.

You posted: Don't let any doctor take away your Hope and don't let them treat you like a statistic. You are a person that is fighting for your life and they should respect that.

Thank you, Thank you, Thank you for reading my mind. I couldn't agree more.

Genna819 said:

Your post
Hi Lily-

I am a 46 yr old female. On 12/2/11 I was diagnosed with Stage IV Gallbladder cancer. I was in the hospital for 5 weeks before they determined what was causing a myriad of digestive issues. Unfortunately it took an open surgery to find the cancer, as the surgeons believed I had large stones in my bile duct, which of course turned out to be tumors. I did have my gallbladder removed on 2/14/11, and the Onc believes that the surgery released the cancer cells into my body.

I have been given a a grim prognosis, but as long as I have breath in my body I am going to fight, even though I have been told that success isn't possible. I am currently undergoing chemo with gemcitabine and cisplatin and have a cat scan scheduled for later this month. So, I still have hope, even though I am told I'm kidding myself. Which makes any type of hope even more significant.

You posted: Don't let any doctor take away your Hope and don't let them treat you like a statistic. You are a person that is fighting for your life and they should respect that.

Thank you, Thank you, Thank you for reading my mind. I couldn't agree more.

Hi Genna
I'm so sorry that this disease has come into your life at such a young age. Your age can be very useful in the treatment that you will be receiving. I too was 46 years old when diagnosed with inoperable Stage 4 GBC. It came out of left field for me. I am happy to say I will be celebrating my 53rd bday this year. Many doctors gave me a very short-time frame to live and they were all wrong!

Was your surgery done laparoscopically? When that type of surgery is done seeding can occur.

I'm so glad to hear that you are going to fight this terrible beast. Attitude can be very helpful in successful treatment. It makes me so sad to hear that doctors are no longer compassionate and I understand that they don't want to give a patient false hope but they could say what my oncologist said to me. That was that "he was willing to try and help me in any way that he could as long as I was willing to go the distance". What other answer would there be except Hell Yes! He would take me to Hell and back many times but without him I would have never made it.

You are on the same chemo cocktail that I was on. It can be difficult but the side effects can become manageable.

You aren't kidding yourself and anyone who says that to you is a negative person and you don't need them in your life right now. Surround yourself with helpful, supportive, loving people who can go hand and hand with you on this journey.

You haven't told us any information about where you are from or what family support structure you have. Let us know and maybe there is someone in your local area that you could become connected to. Or you can talk to all of us. We all love to talk. Ask us anything you want and we will try to help you.

Take Care
Lily

Lily50 said:

Hi Genna
I'm so sorry that this disease has come into your life at such a young age. Your age can be very useful in the treatment that you will be receiving. I too was 46 years old when diagnosed with inoperable Stage 4 GBC. It came out of left field for me. I am happy to say I will be celebrating my 53rd bday this year. Many doctors gave me a very short-time frame to live and they were all wrong!

Was your surgery done laparoscopically? When that type of surgery is done seeding can occur.

I'm so glad to hear that you are going to fight this terrible beast. Attitude can be very helpful in successful treatment. It makes me so sad to hear that doctors are no longer compassionate and I understand that they don't want to give a patient false hope but they could say what my oncologist said to me. That was that "he was willing to try and help me in any way that he could as long as I was willing to go the distance". What other answer would there be except Hell Yes! He would take me to Hell and back many times but without him I would have never made it.

You are on the same chemo cocktail that I was on. It can be difficult but the side effects can become manageable.

You aren't kidding yourself and anyone who says that to you is a negative person and you don't need them in your life right now. Surround yourself with helpful, supportive, loving people who can go hand and hand with you on this journey.

You haven't told us any information about where you are from or what family support structure you have. Let us know and maybe there is someone in your local area that you could become connected to. Or you can talk to all of us. We all love to talk. Ask us anything you want and we will try to help you.

Take Care
Lily

Good news!
I got the results of my scan, and in short- my Onc with zero personality said the results are Excellent! And she smiled. And I did a cartwheel with a circus dismount in my mind. There was a significant decrease in the size of the tumors, and in the markers in my blood. I am, apparently, responding well to the treatment. So we are going to stay the course, and in 6 to 8 weeks, we'll do another scan. Prayers, Crystal Light, holy water massages, and some chemo are carrying me through. It's going to be a good weekend.

Genna819 said:

Good news!
I got the results of my scan, and in short- my Onc with zero personality said the results are Excellent! And she smiled. And I did a cartwheel with a circus dismount in my mind. There was a significant decrease in the size of the tumors, and in the markers in my blood. I am, apparently, responding well to the treatment. So we are going to stay the course, and in 6 to 8 weeks, we'll do another scan. Prayers, Crystal Light, holy water massages, and some chemo are carrying me through. It's going to be a good weekend.

How long did you receive chemo?
I know it's an odd question- but really, with Stage 4 GB Cancer, how long does each chemo series last? I had an appointment on Wed. with my Onc, and the way she explained it was that I would continue to receive chemo until my body couldn't tolerate it anymore. Now, I hate to say this to her, but what if I improve enough where I don't need the chemo- but I don't say it, because she will label it as denial. I'm still curious, just the same. How long have you been receiving chemo? Or better yet- how long have you gone without it.

westie66 said:

Chemo Regimes
Hi: On my first go around I started chemo August 2010 on gemcitibine + cisplatin and had 12 treatments (2 wks on, 1 wk off). Because of a mistaken reading on the MRI scan which seemed to show no more peritoneal mets (form the gallbladder cancer which had been removed in surgery April 2010), I was taken off chemo. A new scan done for my surgeon who was going to fix my incisional hernia showed, nope, they were still there, so I started back on chemo in June 2011 - this time on something called folfirinox (oxaliplatin + irenotecan + 5FU pump) administerd every 2 wks (pump 42 hrs). I had 12 treatments of that (which I had to pay for). I had a chemo break starting Nov 4 and am back on it now (first treatment was Friday). I was awaiting news of possible surgery (peritoneal stripping/HIPEC) but that is a no go. Now I am awaiting an MRI to see if there was progression from my break. The folfirinox had stabilized the progression and even shrunk 1 or 2 of the peritoneum mets. There is always the fear that without chemo things will start to grow! It sucks you in that way! I'll find out in a few weeks. Others have gone on for quite some time on chemo with breaks but there apparently does become a point where nothing we have works. That's the problem with gallbladder cancer - not much research on it because it is rare.
Cheryl

Prognosis
Hi Cheryl-

How are you feeling overall? You were originally diagnosed in 2009, so you've been fighting it and keeping the devil down for quite awhile. But really- the question is this- How are you feeling? Are you able to do the things you enjoy doing? Also, which meds do you take daily? Do you take a painkiller or something else?

Thank you!
Genna