Gallbladder Cancer Stage 4

Yes my husband's was 2016 sorry long day-how they found his was he went in with shoulder pain and pain around the liver/gallbladder area thinking he was having another gallbladder attack and thinking this time they would take it out, but once he said about the shoulder pain they ordered the ultrasound and saw the liver mass and then they went right to a biopsy and it came back as Bile Duct cancer from there a PET Scan and it showed it had gone to the lungs too.

So far Mayo has been a great place for us to go they have treated many people with his type cancer which is rare, so it sounds like your in a great place who are on top of everything for you. I would ask them about sending a sample to Foundation One I didn't even know that they did it for my husband we didn't ask them to I guess it's part of their protocol so maybe they have already done it for you.

Good luck on Monday with your appt and the start of chemo, we will be up there on Friday, he's been going up once a week since the start of this trial and we are hoping they can now space it out farther because it's a 8 hour drive for us which means we have to get hotels rooms which is a added expensive and with him not working it's amazing how bills pile up!!

kelyb86 said:

Gallbladder cancer stage 4

Hi all,

I am also new to this, but 2 days ago I got the awful news that my 60 year old mother has gallbladder cancer which has spread to her liver and pancreas and I am just looking for some positive stories to give me some hope. What they had originally thought was a tumor in her bile duct turned out to be coming from her gall bladder when they operated on her and found the full extent of the tumor. We were told it was definitely a bile duct cancer and that it was slow growing and not to worry too much because it was a straightforward surgery. My mum had been asymptomatic the whole time and only realized something was wrong in January 2018 because of some blood work which showed elevated liver enzymes. She then started to turn jaundiced so they put a stent into her bile duct so as it could drain the bilirubin, but still no one picked up on the gbc. They then did a laparoscopy to ensure it hadnt spread and again we were told it was all clear, so it blows my mind that after multiple ultrasound, CT scans, MRI, ERCP, and scope that they never found this cancer until they opened her up. They were able to remove the gall bladder but little else because they said it had travelled into her liver and the top of her pancreas. We were told there is not much else they can do except palliative chemo but she has to wait until she recovers from surgery. I am extremely devastated at this news as the whole time we were told not to worry. I have been reading survivir stories on this website but there doesnt seem to be too many. I originally didnt think she should have the chemo because I though the more holistic approach would be better since they told her she had less than a year and would be lucky if she made it to September to my brothers wedding. However now I am reading these stories and it seems chemo is the only way anyone has been successful and was wondering if anyone had any experience with the holistic approach? Or if there was any other advice out there as the outlook is not looking too positive. I appreciate any help and I wish everyone to be cured of this dreadful disease.

I am so sorry to hear about your mother's diagnosis.    How did they find out about the tumor in her bile duct? The blood tests? I also had a stent put in a week ago tomorrow.     When they did the ERCP they did not find any cancer in the bile duct.   When I had the ERCP procedure done they indicated the procedure was not typically used to diagnose cancer but to treat a symptom.    But I am definately not a medical professional.   I highly recommend seeking a second opinion if at all possible.   Have them send her tests that have been completed as well.   I am proceding with Chemo Therapy starting on Tuesday (lab tests on Monday)  In addition, I am doing accupuncture as well.   I am in the process of reading materials on diet etc to mprove my chances.   Good Luck with your mother!  This is a terrible disease.    I went in to have my gallbladder removed because of gallstones. 

kelyb86 said:

Gallbladder cancer stage 4

Hi all,

I am also new to this, but 2 days ago I got the awful news that my 60 year old mother has gallbladder cancer which has spread to her liver and pancreas and I am just looking for some positive stories to give me some hope. What they had originally thought was a tumor in her bile duct turned out to be coming from her gall bladder when they operated on her and found the full extent of the tumor. We were told it was definitely a bile duct cancer and that it was slow growing and not to worry too much because it was a straightforward surgery. My mum had been asymptomatic the whole time and only realized something was wrong in January 2018 because of some blood work which showed elevated liver enzymes. She then started to turn jaundiced so they put a stent into her bile duct so as it could drain the bilirubin, but still no one picked up on the gbc. They then did a laparoscopy to ensure it hadnt spread and again we were told it was all clear, so it blows my mind that after multiple ultrasound, CT scans, MRI, ERCP, and scope that they never found this cancer until they opened her up. They were able to remove the gall bladder but little else because they said it had travelled into her liver and the top of her pancreas. We were told there is not much else they can do except palliative chemo but she has to wait until she recovers from surgery. I am extremely devastated at this news as the whole time we were told not to worry. I have been reading survivir stories on this website but there doesnt seem to be too many. I originally didnt think she should have the chemo because I though the more holistic approach would be better since they told her she had less than a year and would be lucky if she made it to September to my brothers wedding. However now I am reading these stories and it seems chemo is the only way anyone has been successful and was wondering if anyone had any experience with the holistic approach? Or if there was any other advice out there as the outlook is not looking too positive. I appreciate any help and I wish everyone to be cured of this dreadful disease.

Chemo is usually the first line of treatment and for some it's enough. I do know for sure if you want to try a clinical trial you first have to do chemo and have it fail before they will accept for one. Yes tumors in the bile duct do grow slow, they figure my husband's Bile Duct cancer has been growing for 5 to 6 years and not untill he thought he was having a gallbladder attack did he have any symptoms. All yearly check-ups and blood work had always been normal, actually his liver function blood tests still come back fine and he has a huge tumor over 75% of his liver.

As for holistic approach never took that path, I do know some people use marijuana for pain relief and nausea, some say that's what keeps their tumors from growing even killing them, it's not legal in our state but if it ever does we will look into getting the medical card for it because he needs it for pain control. Pain meds come with a double edge sword, you need them for pain and you get used to them so they increase the dose then you stuck with being constipated which can cause bowel obstructions and end up taking a whole lot of other drugs which cause more problems, it's a endless merry-go-around.

I wish your mom the best of luck, make sure you find a Dr who has treated many patients with this type of cancer and never be afraid to get a second or thrid opinion, usually when a Dr says no you can't have that it could mean "no I don't know how to do that"

richnkim said:

Chemo

Chemo is usually the first line of treatment and for some it's enough. I do know for sure if you want to try a clinical trial you first have to do chemo and have it fail before they will accept for one. Yes tumors in the bile duct do grow slow, they figure my husband's Bile Duct cancer has been growing for 5 to 6 years and not untill he thought he was having a gallbladder attack did he have any symptoms. All yearly check-ups and blood work had always been normal, actually his liver function blood tests still come back fine and he has a huge tumor over 75% of his liver.

As for holistic approach never took that path, I do know some people use marijuana for pain relief and nausea, some say that's what keeps their tumors from growing even killing them, it's not legal in our state but if it ever does we will look into getting the medical card for it because he needs it for pain control. Pain meds come with a double edge sword, you need them for pain and you get used to them so they increase the dose then you stuck with being constipated which can cause bowel obstructions and end up taking a whole lot of other drugs which cause more problems, it's a endless merry-go-around.

 

I wish your mom the best of luck, make sure you find a Dr who has treated many patients with this type of cancer and never be afraid to get a second or thrid opinion, usually when a Dr says no you can't have that it could mean "no I don't know how to do that"

I guess it’s just the shock of being told that “the cancer was more advanced than we thought” and that she doesn’t have long left frustrates me as if they had of found the origin of the cancer in the first place I keep wondering if things would of been different. Whether the treatment options would be different and if she could of started treatment straight away instead of wasting 4 months. I guess I will never know. my Mum actually lives in a country with free healthcare so I don’t really think there is the option for a second opinion as they don’t have that many Drs. I will hopefully get her home this week sometime and then we can try to decide what is best for her as she is worried the chemo will kill her first. I am looking into the holistic approach and have an appointment at a health clinic as we can’t see the oncologist yet, so we will hopefully come up with a plan. I wish you and your husband all the best and thank you for your advice. Kelly

LiliTM said:

Copying my reply in case you didn't see it on the other thread

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. 

Thank you for your reply, im sorry but I did not see your response on the other thread. I wish this site would give us a notification or something as I can never remember which thread I was looking at. Most of the posts are old so it gives me hope to find others who are in the same situation and have positive stories. I tried to click on the cancer compass link but it didnt work so I joined that webite also so I will try and find your information on there. The worst thing my mum is up against is that we are in the UK and they are not as advanced in treating cancer as the USA is. I actually live in NJ and I only wish my mum lived with me there as we may have had a better chance at beating this. We dont have genomic testing or immunotherapy in the UK because they cant afford it on the NHS. There is never any clinical trials either so chemo is really all we have. I am going to start her on a bunch of supplements like paw paw, artesiminin, black seed oil, CBD oil and change her to a plant based diet. We still havent seen the oncologist yet, so not even sure what his plan for palliative chemo will consist of, but i will find out and let you know. Thanks again for all of your help and I am so happy to hear your dad is doing so well, it really is giving me hope.

LiliTM said:

Dear Kelyb86, of course - I

Dear Kelyb86, of course - I wish anything we've learned could help someone. I am so sorry that you are dealing with frustrations with the NHS in the UK, on top of everything. The healthcare system in the US has so many problems too... I wish they were all better.

As for genomic testing in the UK, it looks like Foundation One does do testing for UK patients: http://www.foundationmedicine.co.uk/#
If your Mum has a targetable mutation or one of the immunotherapy indicators, she could have more treatment options. I just read about something called the Cancer Drugs Fund, which was set up to allow NHS patients in England access to cancer drugs which are not routinely available on the NHS. They have approved pembrolizumab (one of the checkpoint inhibitor immunotherapy drugs) under this fund so if she has the immunotherapy indicators, that seems like it could be an option. 
As for clinical trials, it looks like you can search UK trials here: https://www.ukctg.nihr.ac.uk/clinical-trials/search-for-a-clinical-trial/

It helps instead of just searching for gallbladder cancer, also try "biliary cancer" or biliary tract cancer, and "solid tumors" (which includes trials open to multiple cancer types. Often immunotherapy trials will be open to solid tumor varieties.) 

I hope you have a trusted integrative doctor to guide the use of any supplements (especially if she will start chemo soon), and I hope that she feels better and has a remarkable response. All my very best wishes, with love. 

Thank you so much for all of the info! I really appreciate you looking into it for me I had looked on that particular clinical trial wesite before and all the trials relating to my mum were out of date.... like 2005, so Im guessing they dont update it too often. She also lives in Northern Ireland so as of right now she is not strong enough to travel to mainland England if we were to have found one. As soon as I see her oncologist I am going to mention the genomic testing as this looks promising. I was originally looking up bile duct cancer as this is what they told her she had but they soon realised in came from her gallbladder during the surgery but not sure if they treat them the same way or not. I have never met the oncologist before...im guessing he is the only one oncologist that serves all of Belfast as there is only one cancer center here so that is why we dont have a referral yet, but I am keen to meet him as I have a million questions for him. I dont want to believe the surgeons and their prognosis as they were very negative so I am hoping this guy will be a bit more positive.  Again thank you so much for all of your kind words and advice, I really hope we will have some positive news soon, I will let you know how it goes. Love to you and your dad, Kelly.

Hi,

My mother had a gallbladder surgery and stones were out of gallbladder... Operation was done gallbladder was removed but when it was tested it was moved to liver...today we went to doctor he ask us for few test and said the condition is bad.. I am so disappointed in by end of next week he will start chemo... I am afraid how will things work... Is this situation is alarming when it spread to liver... She feel so much pain so we are giving her medicines prescribed by doctor.. please tell stage 4 survival period...

Please share your email ID mine is aarjee5290@gmail.com my mom is going through this please help.

Hello Tracy,

Not sure if you’re even still on this thread, but I would love to hear the outcome of your story since my mom has a similar story we are going through now.