CSN Login
Members Online: 6

You are here

Gallbladder Cancer Stage 4

gwc345
Posts: 2
Joined: Apr 2009

Hi,

A week ago my mom was diagnosed with gallbladder cancer stage 4. I am looking for survivors. Anyone who knows a survivor. I know the statistics, the doctor has already given us a time frame, and the oncologist has told us to go for "quality of life".

If there are any survivors or if you are having successful treatments I would like to hear from you. What have/are you doing right? Where did/are you getting treatment?

Any information you could give me would be greatly appreciated.

Thank you.

richnkim
Posts: 32
Joined: May 2017

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
Posts: 6
Joined: May 2018

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.

KCFlash
Posts: 21
Joined: Apr 2018

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
Posts: 6
Joined: May 2018

So originally she had elevated liver enzymes in her blood work back in December so her GP told her to go straight to the emergency room. They noticed from the ultrasound that her gallbladder looked inflamed and what looked like a structure in her bile duct. they sent her home with antibiotics, she then went back again because she was extrememly jaundiced and then after an MRCP the Dr told her she had what looked like a malignant tumor in her bile duct so he said she needed a stent and then sent her to have a stent placed with an ercp where they took brushings of the area. This stent failed and her jaundice got worse so they sent her for another ercp where they placed a metal stent And sent her to a liver surgeon. He told her that due to her having chrons disease this is most likely a cholangiocarcinoma and not to worry because it doesn’t spread too fast. His plan was to cut out the bile duct and resection her liver. He also did a laparoscopy to see if it had spread but said everything looked good except her liver was on the small side and she needed the embolization procedure in order for the smaller side of her liver to grow to survive surgery. With this procedure she got an access on her liver and ended up in hospital for 4 weeks, losing weight and getting weaker. She then had the surgery on May 1st and this is when they realized it had actually started in her gallbladder and had spread to her liver and pancreas and were unable to do the resection as they said she would of needed that and a whipple but she probably wouldn’t of survived so they just removed the gallbladder and part of the bile duct. we got the news that the cancer was too far advanced and she would maybe make it a year with chemo but we have still to see the oncologist and they said she needs to recover from surgery first before this can happen. I really don’t know what to do, I feel like this whole time has been one complication after another and it has led to this which was the last thing we were expecting. I guess it’s hard to distinguish between the different types and we were going after the wrong one all along. It also doesn’t help that we are in the UK and have free health service so there are more delays in treatment. she is till in hospital now and I want to get her home so as we can try to plan a way to try and fight this, and find other people in a similar situation to us and find out what they are doing, so I am very grateful for all of your advice. I wish you well in your treatment and hope you will soon kick this cancers butt... it is a terrible thing, but I will remain hopeful and not give up.

richnkim
Posts: 32
Joined: May 2017

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"

kelyb86
Posts: 6
Joined: May 2018

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
Posts: 32
Joined: Mar 2017

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. 

kelyb86
Posts: 6
Joined: May 2018

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
Posts: 32
Joined: Mar 2017

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. 

kelyb86
Posts: 6
Joined: May 2018

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.

LiliTM
Posts: 32
Joined: Mar 2017

I'm so sorry that the options are so limited in the UK and especially in Northern Ireland, that sounds so difficult on top of everything. It turns out that one of the top biliary/gallbladder oncologists from Memorial Sloan Kettering just moved back to Ireland, Dr. Maeve Lowery (the reason I know is because I wanted my dad to see her, and they said she went back to Dublin!) This is her: https://www.tcd.ie/medicine/staff/mlowery/
Perhaps if you can't see Dr. Lowery in person, you can contact her individually and see if she can point you in the right direction, or ask the local oncologist to contact her? I hope the oncologist in Belfast will be positive and helpful regardless. 
Thanks so much for your love and good wishes for me and my dad - sending right back to you <3 Lili

KCFlash
Posts: 21
Joined: Apr 2018

Good Luck with your trips to Rochester Mayo! - I am very confident in the treatment I have received to date.   I am fortunate that I only live a little over an hour away.      My surgeon is Dr Nagourney (If I can have surgery again) and my oncologist is Dr Wen We Ma.   

Heena Sharma
Posts: 1
Joined: Jun 2018

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...

Pages

Subscribe to Comments for "Gallbladder Cancer Stage 4"