gallbladder cancer stage 4

andersonsusank

I just signed up to this discussion board hoping to find more recent posts. Many are really old!

I was diagnosed May 8 with stage 4 gallbladder cancer and have been undergoing chemotherapy with gemcitabine and cisplatin which seem to be reducing the tumor although it is still really early. I too have been told that because it has spread, it can't be removed by surgery but in the back of my mind, I'm hoping if the tumor can be reduced enough, it might be operable.  Has anyone else had success with this?  Also, has anyone had the chemotherapy control the growth for any substantiable amount of time?

 

 

LiliTM

Dear andersonsusank, I'm so sorry you are going through this. 

My beloved, athletic, still-young father got a shocking stage 4 Gallbladder Cancer diagnosis in March. He began chemotherapy at the end of March with gemcitabine and cisplatin too. If your scan already showed reduction, that's wonderful. Depending on where the mets are, perhaps they will become operable if reduced enough or confined to one operable location. I have read about a few GBC cases in which chemotherapy (sometimes a different regimen, paired with Avastin) reduced tumors enough to render the patient operable, resulting in NED (no evidence of disease). It seems like it's so individual  - which makes it hard to tell if what works for one person will work the same for another. But it gives me hope that it is possible.

These discussion boards don't seem very active for GBC. I check in every so often to see if there's any new advice - and I want to support everyone else dealing with this, with whatever we have learned.  I'll share some of the recommendation we got in case they are of help: one was to go to one of the prominent centers where they see more cases of rare cancers like GBC, such as MD Anderson, Memorial Sloan Kettering, Dana Farber... 

We were also urged to send the tumor tissue for genetic sequencing. (At Memorial-Sloan they do the MSK-IMPACT test, the various centers probably each have their own - it can also be sent to Foundation One but insurance did not cover our test there.) If the genetic test comes back with targetable mutations, perhaps you will be able to do targeted therapy. If you have high microsatellite instability or tumor mutation burden, perhaps you will be a good candidate for checkpoint inhibitor immunotherapy. 

MSK has an integrative medicine center where they recommended probiotics, some supplements specific to my dad, and acupuncture/de-stressing. They also emphasized a vegetable-based diet and exercise, both of which seem to be helping my dad get through his chemo well. It might be helpful to ask wherever you go if they have an integrative doctor you can see. 

My heart goes to you and everyone here, with all my best wishes. 

andersonsusank

LiliTM said:

Dear andersonsusank, I'm so sorry you are going through this. 

My beloved, athletic, still-young father got a shocking stage 4 Gallbladder Cancer diagnosis in March. He began chemotherapy at the end of March with gemcitabine and cisplatin too. If your scan already showed reduction, that's wonderful. Depending on where the mets are, perhaps they will become operable if reduced enough or confined to one operable location. I have read about a few GBC cases in which chemotherapy (sometimes a different regimen, paired with Avastin) reduced tumors enough to render the patient operable, resulting in NED (no evidence of disease). It seems like it's so individual  - which makes it hard to tell if what works for one person will work the same for another. But it gives me hope that it is possible.

These discussion boards don't seem very active for GBC. I check in every so often to see if there's any new advice - and I want to support everyone else dealing with this, with whatever we have learned.  I'll share some of the recommendation we got in case they are of help: one was to go to one of the prominent centers where they see more cases of rare cancers like GBC, such as MD Anderson, Memorial Sloan Kettering, Dana Farber... 

We were also urged to send the tumor tissue for genetic sequencing. (At Memorial-Sloan they do the MSK-IMPACT test, the various centers probably each have their own - it can also be sent to Foundation One but insurance did not cover our test there.) If the genetic test comes back with targetable mutations, perhaps you will be able to do targeted therapy. If you have high microsatellite instability or tumor mutation burden, perhaps you will be a good candidate for checkpoint inhibitor immunotherapy. 

MSK has an integrative medicine center where they recommended probiotics, some supplements specific to my dad, and acupuncture/de-stressing. They also emphasized a vegetable-based diet and exercise, both of which seem to be helping my dad get through his chemo well. It might be helpful to ask wherever you go if they have an integrative doctor you can see. 

My heart goes to you and everyone here, with all my best wishes. 

Gallbladder Cancer

Dear LiliTM, thanks for your comments. I'll ask about the genetic sequescing.

Yes - GCB is so uncommon that there aren't too many posts.

susan

LiliTM

andersonsusank said:

Gallbladder Cancer

Dear LiliTM, thanks for your comments. I'll ask about the genetic sequescing.

Yes - GCB is so uncommon that there aren't too many posts.

susan

Dear Susan, of course. I hope the genetic testing turns out to be helpful. If your oncologist has any answers to your questions, I'd be grateful to hear any info you'd like to pass along that I can share with my dad. Wishing you all the best, Lili

mommie2gurl

stage 4

well this is all new to me...

My dad was diagnosed with stage 4 gallbladder cancer with met in his back and stomache lining. From talking with his doctors and research it looks like at most they give him three years. Overall he is a healthy man, it has not spread to any other major organs. I guess I am just looking for ways to extend my dads life as long as possible so we are open for any suggestions..

 

thanks

LiliTM

mommie2gurl said:

stage 4

well this is all new to me...

My dad was diagnosed with stage 4 gallbladder cancer with met in his back and stomache lining. From talking with his doctors and research it looks like at most they give him three years. Overall he is a healthy man, it has not spread to any other major organs. I guess I am just looking for ways to extend my dads life as long as possible so we are open for any suggestions..

 

thanks

dear mommie2gurl,

dear mommie2gurl,

I am so sorry - I remember how I felt when it was all new to me in March too. Since then I have learned a lot, so feel free to ask me anything and I will try to help you find the answer. I recommend the steps above as first steps (genetic testing, seeing a specialist at one of the larger centers, etc). I also want to share that it's truly impossible at this point to know how long our beloved dads have. They may respond remarkably well to treatment. I am wishing for that every day. All my best wishes, Lili 

Gbc123

Gallbladder cancer stage 4 palliative chemo

hello, just had the news that my fit and healthy dad has stage 4 GBC that has spread to peritoneal, liver and nodes.   liver resection was abandoned due to discovery/extent of the spread. Surgeon has referred us for palliative chemo. I am looking for anyone with any similar stories of hope eg this palliative chemo extending life beyond expectations...  thank you 

LiliTM

Gbc123 said:

Gallbladder cancer stage 4 palliative chemo

hello, just had the news that my fit and healthy dad has stage 4 GBC that has spread to peritoneal, liver and nodes.   liver resection was abandoned due to discovery/extent of the spread. Surgeon has referred us for palliative chemo. I am looking for anyone with any similar stories of hope eg this palliative chemo extending life beyond expectations...  thank you 

Hi Gbc123,

I'm so deeply sorry. My fit and healthy dad also got a stage 4 GBC diagnosis out of nowhere, also with peritoneal and liver spread. Heartbroken beyond words. That was in March. They also referred him for chemo, Gemcitabine and Cisplatin. I didn't know if we'd have a month left together. But here we are almost a year later, he is holding strong with slight shrinkage so far, and we are hoping for much, much more.

No matter what anyone says, I am still hopeful. It is so individual and you never know how well anyone will respond. We are trying to leave no stone unturned and after much research, I think a multi-pronged approach is our best bet (so we're doing chemo, acupuncture, recommended/safe supplements, CBD oil, plant-based healthy diet, he goes to therapy to deal with emotions, exercises when he can... pretty much everything that might help and can't hurt. We try to take away his stress as much as we can, and help him focus on living as much as possible - simple things like a walk in nature, laughing at a comedy tv show...) 

I wrote all the recommendations we got at the beginning earlier in this chain of comments. Let me know if you can't find my comments to others, and I'll send you the recommendations again. Most importantly, get a biopsy if you can. If he has high microsatellite instability, DNA mismatch repair, high tumor mutation burden - he may be a candidate for immunotherapy. Or if he has targetable mutations, then maybe he can do a targeted therapy. 

Things that help my dad tolerate chemo, besides everything I wrote above: drinking tons of water. Ginger and CBD oil/medical marijuana. Going for a walk even if he's tired (it helps fight fatigue). I recently read from an NCI study that Wisconsin Ginseng helps with chemo-related fatigue. 

If you have any other questions, don't hesitate to ask. I send my warmest wishes for your dad, and all my compassion, to you and everyone here. 

kelyb86

Gallbladder cancer stage 4

Hi Everyone,

 

I am also on here trying to catch any ray of hope for my mum who just found out she has incurable stage 4 gallbladder cancer that has spread to her liver and pancreas. It is such a shock to hear such bad news and I am looking for any advice on any possible treatments. The doctors originally thought this was a bile duct cancer despite having numerous ultrasounds, MRI, CT scan, ERCP and a laparoscopy. They thought it was a straightforward surgery in which they would open her up and remove the bile duct and that would be it. Unfortunately, they found out the truth and realized the extent of her cancer and said she would be lucky if she survived a year. That was 2 days ago and she is still in hospital recovering from the surgery but I am desperately trying to figure out what to do next. She cant see the oncologist until she has healed they said and then maybe we can start palliative chemo. Im not even sure how I feel about this as I dont want her to suffer if she only has a few months left, but I also dont want to give up hope and I want to try and keep her positive. I was also looking into alternative therapies and holistic tretmants and was wondering if anyone had any experience with these. I will never give up hope but I apprecaite any advice I can get. God bless you all and I wish you all recovery from this awful, dreadful disease.

LiliTM

kelyb86 said:

Gallbladder cancer stage 4

Hi Everyone,

 

I am also on here trying to catch any ray of hope for my mum who just found out she has incurable stage 4 gallbladder cancer that has spread to her liver and pancreas. It is such a shock to hear such bad news and I am looking for any advice on any possible treatments. The doctors originally thought this was a bile duct cancer despite having numerous ultrasounds, MRI, CT scan, ERCP and a laparoscopy. They thought it was a straightforward surgery in which they would open her up and remove the bile duct and that would be it. Unfortunately, they found out the truth and realized the extent of her cancer and said she would be lucky if she survived a year. That was 2 days ago and she is still in hospital recovering from the surgery but I am desperately trying to figure out what to do next. She cant see the oncologist until she has healed they said and then maybe we can start palliative chemo. Im not even sure how I feel about this as I dont want her to suffer if she only has a few months left, but I also dont want to give up hope and I want to try and keep her positive. I was also looking into alternative therapies and holistic tretmants and was wondering if anyone had any experience with these. I will never give up hope but I apprecaite any advice I can get. God bless you all and I wish you all recovery from this awful, dreadful disease.

Dear Kelyb86,

I'm so deeply sorry about what your Mum is going through, and you with her. I know how heartbreaking and shocking all this is. I hope it gives you hope that my dad is responding better than expected, and I hope so much that your Mum does too.  

You might have read my earlier posts on this site but they're hard to find, so I'll share what we've learned here in case it might be helpful.

It's easier to search this other site, seems to be a bit more active: https://cancercompass.com/message-board/cancers/gallbladder-cancer/1,0,119,21.htm 

My beloved, still-young, athletic dad also got a stage 4 GBC diagnosis out of nowhere. They also removed his gallbladder but it had already spread to the liver and peritoneal carcinomatosis. Heartbroken beyond words. That was in early March 2017. They also referred him for "palliative chemo" (the standard first-line chemo is Gemcitabine and Cisplatin). I didn't know if we'd have a month left together. But here we are 14 months later, and we are hoping for much, much more.

I always prepare questions before seeing the doctors, and with a rare cancer like this, it's important to go to a large reputable center where they see more cases and have specialists in biliary cancers (in the US: MD Anderson, Memorial Sloan Kettering, Mass General, etc...) 

Most importantly, ask them right away to send the biopsy from your Mum's gallbladder removal for genomic testing, like at Foundation One. If she has a targetable mutation, it can drive her treatment decision towards targeted therapy. Ask them to check for the immunotherapy indicators as well: if she has high microsatellite instability, DNA mismatch repair, high tumor mutation burden, PD-1/PD-L1 - she may be a candidate for immunotherapy. 

If you were going to have another surgery at some point, I'd inquire about the drug sensitivity testing that Dr. Nagourney (Rational Therapeutics) or dr. Wiesenthal do. I'm not sure yet if these are helpful but if you're already getting a procedure anyway, might as well look into this beforehand because they require the fresh biopsy to be overnighted to them. 

No matter what anyone says, I am still hopeful. It is so individual and you never know how well anyone will respond. I also reas the book "Radical Remissions" and it gave me hope to hear what's possible for people who have had completely unexpected recoveries. We are trying to leave no stone unturned and after much research, I think a multi-pronged approach is our best bet (so we're doing chemo, acupuncture, recommended supplements, CBD oil and medical marijuana, plant-based healthy diet, he goes to therapy to deal with emotions, exercises when he can... pretty much everything that might help and can't hurt. We try to take away his stress as much as we can, and help him focus on living as much as possible - simple things like a walk in nature, laughing at a comedy tv show...)  

Things that help my dad tolerate chemo, besides everything I wrote above: drinking tons of water. Ginger and CBD oil/medical marijuana. Going for a walk even if he's tired (it helps fight fatigue). I recently read from an NCI study that Wisconsin Ginseng helps with chemo-related fatigue. 

My dad is still active and if you saw him on the street, you wouldn't know what he is battling. He did Gem/Cis for 11 months, and during that period the scans showed slight shrinkage. Then a scan showed slight growth so now he has been on Folfiri for 2 months. His latest scan was stable. Hopefully we'll ride the Folfiri for a long time. If we have to change, other things on my list to look into are liver-directed therapies, ablations, IRE/nanoknife, drug sensitivity testing (which we'd need a laparoscopic biopsy for), any promising clinical trials that open up (as far as I can tell, there's nothing super promising for my dad right now because he doesn't have any immunotherapy indicators), and as much of the holistic treatments that might help and don't hurt as possible.

If you have any other questions, don't hesitate to ask. (It's easier to message me on the other site because it notifies me of replies, but I'll check back in here too.) I send my warmest wishes for your Mum, and all my compassion, to you and everyone here. 

esoria8380

Hello Everyone,

Hello Everyone,

On April 10th my mother had a chole and pathology results showed T3N1. MRI is negative and PET scan (2wks after surger)showed 3 small lesions in the liver. She has been seen by a liver surgeon who recommended to see an oncologist who recommended chemo for 3 months then possibly surgery. The surgeon and oncologlist think PET scan is showing inflammation, since the surgery was so recent. 

 

We just had a second opinion from another surgeon at UCSF who recommended Chemotherapy and then possibly surgery. The liver surgeon consulted with the oncologist At Kaiser.

Any recommendations ? We just want to make the best decision possible? 

Thank you all in advance and thank you all for sharing God bless.

Elizabwth (daughter)

 

LiliTM

esoria8380 said:

Hello Everyone,

Hello Everyone,

On April 10th my mother had a chole and pathology results showed T3N1. MRI is negative and PET scan (2wks after surger)showed 3 small lesions in the liver. She has been seen by a liver surgeon who recommended to see an oncologist who recommended chemo for 3 months then possibly surgery. The surgeon and oncologlist think PET scan is showing inflammation, since the surgery was so recent. 

 

We just had a second opinion from another surgeon at UCSF who recommended Chemotherapy and then possibly surgery. The liver surgeon consulted with the oncologist At Kaiser.

Any recommendations ? We just want to make the best decision possible? 

Thank you all in advance and thank you all for sharing God bless.

Elizabwth (daughter)

 

Dear Elizabeth, I'm so very

Dear Elizabeth, I'm so very sorry for your mother's diagnosis. I have heard if there's even a chance that surgery is possible, then it's crucial to get more opinions with the best oncology surgeons to see what they think. Any chance you can go to one of the top places? If you're in California, then Stanford or UCLA? Even if they think she should do chemo first, the top places will hopefully have the best guidance about which chemo regimen is best for her, and the timing of it with surgery. Or whether radiation is indicated. Also right away if you can ask your current oncologist to send a biopsy of the tumor from the recent cholecystectomy for genomic testing like at Foundation One, then perhaps she has targetable mutations or immunotherapy indicators. Sending all my best wishes and hopes!