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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.

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

(Monarch: see my reply on the other gallbladder discussion thread as well.)
Hi: Yup, that is the problem - too little is known about gallbladder cancer but in my mind diagnosis of it is increasing (but not the research!). My gallbladder and its tumour (which extended on the right side through the gallbladder wall into the liver) and part of the liver were removed laparoscopically - not a good way to do it - April 2010. The incisions took 4 months to heal. Malignant nodules on the peritoneum were observed during the surgery. Monitoring before and during chemo which started Sept 2010 showed no spread of cancer other than on the nodules (which were not removed - only 6 of them). My first chemo regime was cisplatin-gemcitibine. I had 12 treatments two weeks on and one week off and didn't suffer any side effects - in fact I even drove myself to treatment. This treatment likely kept spread at bay but did not shrink the nodules on the peritoneum. For this, my oncologist is trying oxaliplatin + irenotecan + 5FU pump. I have had 12 treatments and there is stability and even some shrinkage of the little nodules. We will now look at other treatments - more chemo, surgery? for some reason he doesn't recommend radiation. I have had a lot of side effects from this chemo regime - fatigue, severe diarrhea, sweating, neuropathy that I control - but nothing that would make me stop it.
Cheryl

manisa99
Posts: 2
Joined: Dec 2012

hello... Im currently 21 and my mother 51... my mom has been dealing with gallbladder cancer for the past three years .. about a year and three months ago the doctor gave her 4 months to live but she had made until now... well.. after a long battle now shes on the edge to die in any second... I know you are looking for survivors which is the same exact thing I was doing at this time last year but Ive written a blog with all my feelings.... what has gone on and how Ive felt for the past 3 years..... In there you can see my emotions of roller coaster and being in denial to finally coming to an acceptance... even though is still the hardest experience of my life..I seriously spelt my heart out in the LONG blog and maybe someone can relate and learn from my mistakes of at times not being by mothers side and also the shock of having to her in the state that she is in now.. maybe and hopefully this blog can help someone relate and be able to deal with such a traumatic and painful experience... here is the page to my blog of my blog… http://www.randomfactspage.com/ …. It first started as a random website that I wanted to post weird stuff on my free tome but I felt the need to share my experience so it has become more of an emotional page.... hope it helps someone.. heres the link again. http://www.randomfactspage.com/ .... share your thoughts... TRUST ME im in NEED of some support as well..... also the blog december 2012 TRULY speaks my heart.

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

I am so sorry about your mom.  I have gallbladder cancer (diagnosed October 2009) and know that without the support of family (like you) and friends, I couldn't have continued

on this journey. 

Cheryl

saquib
Posts: 1
Joined: Apr 2013

hi 

my mother of 52 years old has also gall bladder cancer of stage 4.

plz tell me how you cure your cancer?

doctors tell me that her surgery and chemotherapy are  not beneficial.

 

 

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi,

Welcome to our boards.  I'm so sorry that this has happened to your mother and you.  She is young and my first suggestion to you is for her to find another doctor that has had experience will GBC.  Get second, third and even fourth opinions.  It is so rare and most doctors have never seen a case of it.  Most doctors’ suggest palliative care and go for quality of life instead of quantity.  It is an aggressive cancer that needs to be treated aggressively.  It is your mother's choice whether she wants to fight like hell to live or just give up. 

There are newer discussions on the Gallbladder Cancer - 2013 thread that you might want to read.  Post any questions that you might have there and we will try to help to the best of our abilities.  Many of us where told the same thing but yet we are still here and discussing our disease.

Hope and Faith will carry you through.

Take Care

Lily

 

 

FrancisClinton
Posts: 2
Joined: May 2013

My mother has been diagnosed with gallbladder cancer tumour stage 4 .I came to know about the cow urine therapy and ayurvedic medicines , and another treatment called as dendritic cell therapy may cure the disease , i want to know whether these therapy will be helpful in curing the cancer ? 
plz tell about the tretment details for curing my mother.

My email id : francisclinton93@gmail.com

Tanty
Posts: 1
Joined: May 2013

Hi

I feel like I've found a good place to share, send love and ask for help

My husband was diagnosed seven weeks ago with Stage 4, which has moved from his gallbladder to his liver, and has grown 50% again in size since the last CT a month ago.  The tumor is pressing down on a large group of blood vessels in the liver, causing difficulty with digestion and circulation.  He has lost around 16 kilos in seven weeks.  HIs jaundice was disappearing but in the last week his bilirubin level has started to climb again.  It's a frightening and upsetting time.  Surgery has been ruled out, and we go for a meeting later this week to find out if they will still offer chemo (entirely dependent, I think, on how his bilirubin is doing), or just give us a time limit on his life.  I wanted to ask if anyone else had a similar diagnosis and if so, what drugs or treatment combination proved effective.  I know that everyone responds differently to treatments, but I at least want to go into this meeting with questions to ask!

I know how much energy and empathy it takes to invest in soneone else's situation when your own is so overwhelming but any input will be very gratefully received!

Thanks

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi,

I'm Lily and I'm a GBC Stage 4 Seven Year Survivor.   Yes, you have come to a good place to share your journey with us.  This is the original discussion thread that was started over 5 years ago.  Every year I create a new thread, because the bigger the thread gets the more difficult it is to respond and takes too long to load.  If you don't mind if you could post to the Gallbladder Cancer - 2013 - (Any Stage) just cut and paste and we will be happy to share everything to the best of our abilities.  This disease has gotten more attention these last couple of years and there are people who are going through what your husband is or have already completed treatment. 

This is a very aggressive disease and needs to be treated aggressively.  You are both in shock right now and everything that you read is outdated at best.  I too was told no to surgery in the beginning and eventually after 11 months of chemo I was able to have surgery.  No just means not now.  I couldn't have radiation as my liver was compromised.  I was given 2 weeks, 2 months and on the outside 2 years.  Boy, lots of doctor's were wrong with that prognosis.  Yes, we have all had the similar diagnosis and different people have responded differently to the chemo cocktails.  Gemzar seems to be a common thread, along with Cisplatin, Carboplatin, Oxiplatin, and/or 5 FU's. 

I know for most of us that post on these boards need to feel connected with others that are facing this disease.  The medical community tends to view the situation as hopeless but it doesn't have to be.  Talk to us and we will try to help you and your husband. 

Hope & Faith will carry you through.

Take Care

Lily

mohammad@medico
Posts: 2
Joined: Jun 2013

 

Hi dear freand
my name in mohammad from Iran. sorry my english not good, sorry
You are my source of hope and life,
 my father have gall bladder cancer stage 4, we know almost 1 month
ago, surgery not good because his dr told me the cancer metastas to
lymph node (N2) but organs ( Liver and pancrase) is clear and no metastas to there  .(T2 N2 M0) the surgery consist of removal gall bladder without lobectomy of liver or resect of lymp nodes, Doctors told me prognosis is so bad nearly 6 month and I am in shock and upset.
however we want start chemotheaphy but the dr told us this treatment
dont better survival and I hesitate that start chemotheraphy or not.
please help me for this subject 
also My brother lives in Germany and We try to go to this country for
treatment, in my country drug that use for this deasease is GEMZAR,
please help and direct me to make a right decition

thanks everyone try to help me

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Mohammad,

Just saw your posting here and even though we have talked via email, please cut and paste your father's story to the discussion thread Gallbladder Cancer - 2013 (Any Stage).  It is the most current thread and others would like to hear your story. 

Take Care

Lily

Rita Nassanga
Posts: 11
Joined: Apr 2017

How is your dad doing now? I hope he survived!

 

aleale
Posts: 1
Joined: Oct 2013

Hi,

 

I am from Italy and my mum was been diagnosed with a gallbladder cancer stage 4 with a carcinoma in the peritoneum. Here in Italy I wrote to the best Doctors, but all of them told me that it is impossible to save my mum, impossible to do surgery. I don't know if wherever in the world there is at least one possibility of saving her, that's why I am asking for your help. My mother did palliative chemio until now, with Gemzar, but now her liver is suffering and doctors don't think she will be able to continue with chemio.

I read here that it was possible to survive for you and I hope my mum will survive too.

Please, give me Doctors contact, at least I will try to contact them and ask for help.

 

Thank you everybody

monavaage
Posts: 2
Joined: Oct 2014

Hey i just signed up here, and im wondering about the same as you did. Did you get any information? How is your mom doing? 

 

Best Mona

stepinmishra
Posts: 3
Joined: Sep 2014

Hi I am stepin my mother is diagnosed gull bladder cancer stage IV two days back and doctor was telling surgery is not possible and therd is no treatment for this.pl help me out the CT scan report is limd this CHOLELITHIASIS WITH MASS IN GB FUNDUS REGION. 

IRREGULAR MODERATELY ENHANCING HYPODENSE SOL IN RIGHT LOBE OF LIVER CLOSE TO GB FUNDUS ( ?ADJACENT INFILTERATION OF GB FUNDUS MASS/?SATELLITE METASTASIS) pl share ur experience with this report I am waiting for ur suggestions for my mothers further treatment plan

stepinmishra
Posts: 3
Joined: Sep 2014

Hi I am stepin my mother is diagnosed gull bladder cancer stage IV two days back and doctor is telling surgery is not possible and there is no treatment for this.pl help me out the CT scan report is like this CHOLELITHIASIS WITH MASS IN GB FUNDUS REGION. 

IRREGULAR MODERATELY ENHANCING HYPODENSE SOL IN RIGHT LOBE OF LIVER CLOSE TO GB FUNDUS ( ?ADJACENT INFILTERATION OF GB FUNDUS MASS/?SATELLITE METASTASIS) pl share ur experience with this report I am waiting for ur suggestions for my mothers further treatment plan

monavaage
Posts: 2
Joined: Oct 2014

Hello. Im not a Dr, and dont understand probably what the diagnose is.

However, what i found out. Get the right chemo who can shrink the tumors, also in addition get immunotherapy. With this the goal is that the tumor is small enough to operate or to do a transplantation.

 

Mona

stepinmishra
Posts: 3
Joined: Sep 2014

Hi I am stepin my mother is diagnosed gull bladder cancer stage IV two days back and doctor is telling surgery is not possible and there is no treatment for this.pl help me out the CT scan report is like this CHOLELITHIASIS WITH MASS IN GB FUNDUS REGION. 

IRREGULAR MODERATELY ENHANCING HYPODENSE SOL IN RIGHT LOBE OF LIVER CLOSE TO GB FUNDUS ( ?ADJACENT INFILTERATION OF GB FUNDUS MASS/?SATELLITE METASTASIS) pl share ur experience with this report I am waiting for ur suggestions for my mothers further treatment plan.pl suggest me a doctor in India who can treat my mother.

vic_prash
Posts: 5
Joined: Feb 2015

Hi Everyone

Greetings from India

Just like all on this forum I am also affected by this dreadful disease as my mother was diagnosed with metastatic GBC in sep 2012 . initially we were in denial and doubted the diagnosis as she was not having any trouble of any sort physically. It all started in May 2013 when she suffered from obstructive jaundice and lost hell lot of weight we then ran to the oncologist and it was confirmed that it has been caused by this disease only. We then submitted ourselves to the oncologist and followed whatever he adviced. Her ERCP and metal stenting was done in July 13 and soon she recovered from jaundice. Later in Oct we started off with First line of Chemo Gemcitabine+ Cisplatin ( 1st day then 7th day and 15 days gap after that). She underwend 6 cycles ( 12 seatings) over next 3 months. Results were beyond everyone's expectations as the oncologist had told me earlier that my mother had 3-4 months to live even after chemotherapy. The CT scan after chemo showed that the primary and metastatic lesion shrank as less as to 4cmx4cm from a massive 13cmx12cm and the best part was that she did not suffer from a single side effect whatsoever and had a good appetite and healthy and active routine. But as the fate must have it we again did a CT scan in Oct 14 to check the state and to our surprise the disease had bounced back and the lesion again increased up to their original size of 12x13 cm in 3 months. The symptoms started coming back as she lost weight again, the gastric problems and pain in stomach. We again resorted to the advice of the oncologist and opted for Second line of chemo ( Capcitabine( oral (2500 mg everyday ))+ Oxaliplatin( I V 1st day  and 7th day then a gap of 15 days) . We have undergone 4 seatings and the CT scan has again shown some good signs as the primary and metastatic lesions have again come down to 4cmx5cm but this time she suffered from Diarrhea as the side effect of the drugs which has further weakened her. She is still recovering from the same and preparing herself to undergo the next chemo cycle. She is a warrior at heart with no worries or regrets whatsoever which probably has helped her the most to fight the biggest battle of all ours life.

Now comes the part where I will request you people to provide your advice as the tumor has now come down to a level where probably it can be removed surgically but the oncologist has told us that the metastatic lesions can not be removed surgically hence the disease is inoperable. We are stuck

In a dead end where after 2 cycles I'll have no options left but to watch my mother suffer through the disease . I am also looking for any effective and proven Alternative treatments which I can opt for .

Will appreciate inputs from all

Thanks and regards..

 

Rich24uk
Posts: 17
Joined: Feb 2014

Hi Vic,

 

Sorry I cannot offer much specfic advice. My mother was diagnosed with gbc back in Jan 2014. We have completed the first line treatment and she is doing well so far. Have you asked for a 2nd opinion regarding an operation? Many sugeons will not operate as once the disease is metastatic there is a high probably that the cancer has spread to other area, hence the additional stress of an op will not be in the patient's interest.

 

Are there any trials in your country that she may be eligible for?

RavY
Posts: 2
Joined: Mar 2015

Hi All

can someone guide me for my mom-in law. SHe has got gallblader stage IV matastatic cancer. Problem is that she is getting unbreabale pain. is there some way she gets less pain?

 

illfight
Posts: 6
Joined: Sep 2015

Hi

Hope your mom is doing fine..... can you tell about latest updates.... and for resection have you met dr shrikhande in tata memorial bombay or dr adarsh chaudhary in medanta.... my mom is on chemo right now .... she also has ca gb with liver mets..... i have talked to both the surgeons in person they have positive attitide toward this.....

illfight
Posts: 6
Joined: Sep 2015

Hi

Hope your mom is doing fine..... can you tell about latest updates.... and for resection have you met dr shrikhande in tata memorial bombay or dr adarsh chaudhary in medanta.... my mom is on chemo right now .... she also has ca gb with liver mets..... i have talked to both the surgeons in person they have positive attitide toward this.....

RavY
Posts: 2
Joined: Mar 2015

My mom-inlaw had quite similar case as above of VIC. is there way  someone can help? 

She has got multiple chemos but without much success. Now problem is that she is getting very much pain in the lump she has got.

Rebeccalindell
Posts: 1
Joined: May 2015

hey I'm from Sweden and last year we received stated that my mother has gallbladder cancer that is spread to the peritoneum. someone who has cancer that is spread to the peritoneum? which chemotherapy do you take? have you received side effekts like numbness and tingling in hands and feet?

 

best regards Rebecca 

Rich24uk
Posts: 17
Joined: Feb 2014

Hi Rebecca, This was also my mum's initial diagnosis but we later found out that there was no spread to the peritoneum. The chemo my mum was given was GemCis (Gemcitibine and Cisplatin) which is the standard 1st line treatment at the moment.

Mum did get have some side effects but nothing too severe and she was able to see out the course relatively OK. She had the following:

  • Hair loss (mild, thinning)
  • Mood changes/short term memory blips (mild, and this was probably the steroids)
  • Constipation (this was treated with laxative prescribed by the hospital)

She did not suffer from the tiredness much at all, she seemed to have fairly good energy levels throughout. The tingling, as I understand can be a sign of something more serious called peripheral neuropathy which needs to be checked by a doctor.

Sing4Him
Posts: 1
Joined: Jul 2015

Hello.  Sorry - didn't know how to start a new comment, so I am replying to your message since yours appears to be the most recent post.  I was diagnosed with stage 4 gallbladder cancer this week.  Oncologist said Gemzar and Cisplatin were 2 chemo drugs that might help.  Radiation is not

an option. He said I don't  have to decide right away about chemo.  I don't know whether that's good or not.  I'm 69 and in pretty good health.  Have had pelvic pain and back pain for several years.  Finally started trying to find some answers this year. Went to physical therapy not real helpful.  Dr. ordered an ultrasound and that showed gallstones so Dr thought maybe removing the gallbladder might help the pain.  A month ago they tried to take out the gallbladder and instead found a mass growing on it and closed me back up.  Had CT scan and it showed the mass so a surgeon had scheduled surgery this month.  I went to Mayo Clinic and they did another Ct scan and saw a node which they biopsied and it is cancerous. They said surgery is not an option.  So here I am not knowing whether I should try the chemo.  Any feedback would be appreciated. 

CLTdoglover
Posts: 16
Joined: Dec 2014

Yes, try the chemo.  It will buy you time and the Gemzar plus Cisplatin isn't that bad.  I'd also recommend genetic testing to see if you have amplified HER2, which they have newly discovered in many GDC cases.  If you do, Herceptin may be added.  My friend did this testing and indeed has the amplicication so went on Herceptim plus Abraxane after the Gemzar+Cisplatin quit working and has kept her alive.  She went through Perthera for the testing.  You'll need a biospy but that isn't a big deal.  Don't wait - GBC moves quickly. 

All the best.  GBC is a terrible disease and on the rise with no known cause.  

 

th65
Posts: 1
Joined: Mar 2016

Mum diagnosed with GBC Stage 4 in Dec 15. GB removed and stent put into bile duct. Initially told it had spread to liver, bile duct and lymph nodes. CT scan done last month and it's showing no visible cancer. Docs cannot given any answers re the initial diagnosis that it was on other organs and now none visible. Nearly 4 months later and maybe start mum on chemo next week. She is 75yrs old and also has high blood pressure, diabetes, and rhumy arthritis. She has coped with both the GB and insertion of stent well and is back to health prior diagnosis. Oncologist suggested Genzar + Cisplatin. They are definitely against giving mum chemo as they do not think she will be able to tolerate it, hence the delay in starting it. They are planning to use cycle of 1 influsion each week for 2 weeks and the 2 weeks off = 1 cycle. Total of 6 cycles. So she will be having this treatment for next 6 months. Oncologist is not very easy person to deal with and have become increasingly difficult because of our insistence on chemo. Want to keep them on side as mum needs chemo and any other potential treatments. Already tried going to PALS and this has resulted in some aggravation in their attitudes and silently labelling us as 'trouble makers' and mum getting worried if we continue to use PALS so asked me not to until treatment is complete. 

Any suggestions?

Ja59
Posts: 24
Joined: May 2013

Dear All,

 

I write on all forums about this treatment, but looks like doctors are talking everyone out of using it. If you want to save yourself or your relatives from this disease try it. Modern chemotherapy does not work for gallbladder cancer stage 4. It can be used in i itial stage for reduction of the sizeof thetumor to assist surgery, Though, I wouldn't use it at all. Remember, if only one cancer cell  is left alive in tbe body, weakened by chemotherpy, cancer will grow back very quickly. I am a doctor and a surgeon, who had this disease and used immunotherapy 3 years ago.

It is called CTL, or ACTL . Cytotocsic lymphocytes. It is available in the USA, China and now in Thailand.Search on internet yourself for ACTL cancer. I am from Australia. Our surgeons in Sydney know about me, ask them.

illfight
Posts: 6
Joined: Sep 2015

Hi

My mom diagnosed with ca gall  bladder with mets in liver both lobes and rt cervical lymph nodes . I m in delhi ... my mom is on gem ox has completed her first cycle of chemo ..... i am a doctor myself .... ppl in india have nihilistic approach .... can u plz guide me towards the immune therapy in detail..... my mom is just 55 years old.... and was completely asymptomatic till 15 th o Aug 2015 after which she developed rt upper abdomen uneasiness  for which we had an usg and ct done and it came out to b unresectable ca Gb..... then on sep 4 she developed jaundice for which PTBD was done at aiims new delhi.... now took 1a 1b and 1c cycle of gem ox.... plz guide me for the therapy u mentioned

Thanks

Dr pallavi chaudhary

CLTdoglover
Posts: 16
Joined: Dec 2014

Have her do genetic testing to see is she has HER2 expression, which is common in breast cancer and recently discovered in GBC.  If she has it, they have 3 decent chemos to extend her life. 

I cannot find  CTL, or ACTL Cytotocsic lymphocytes (referenced by Ja59) being used for GBC in the US but we'll keep looking.

Ja59
Posts: 24
Joined: May 2013

ACTL, DC-CIK (DENDRIC CELLS)  AND THEIR MODIFICATIONS are available in China, India and Thailand. India has only DC treatment. Check this hospital for example http://www.asiancancer.com/technology-equipment/2619.html.

I am not promoting any provider, you can chose yourself. There are few of them.

illfight
Posts: 6
Joined: Sep 2015

Life is difficult and directionless ..... dont knw y this happened..... my mom was so active , loving and caring.... life was truly blessed till 30 aug 2015 ....day when my mom was first diagnosed. ...... things are difficult now. .... i don't feel like walking this journey without my mom.... but i have a younger sister who is 22 years old , father 56 year and my son 2 year old..... dont know where life will take nxt..... i have left my job in delhi .... have shifted to a small village so that idea of me being a doctor and inability to save maa doesn't haunt me . Sometimes god also makes a mostake and this time he did

S

Sidharthaa
Posts: 1
Joined: May 2017

Hello Lily.  Thanks for being a only ray of hope. 

My father aged 56 years old is suffering a gall bladder cancer stage 4 which has spread in lot of places including region near around neck, a bone in back,  liver, small intestine.  We have got to know about the staging and cancer within a week only. I really wanted to know that apart from regular chemo what other things you incorporated in your treatment, medicines,  exercises and how can we get this disease out of his body completely. Since timeframe given by doctor is no more than a year.  Kindly and please help me out with something potent and positive.  We are based out of India and treatment is going in Medanta medicity.  Kindly suggest something.  Please. It would be really great if you could mail me any helping advise on my below email ID or on my contact number or of I can get in touch with you personally. 

Thanks for all your support to many of us. 

Regards

Sidhartha

<content removed by CSN>

Rita Nassanga
Posts: 11
Joined: Apr 2017

Hello Ja59/Lilly

Mom has GB ca stage 4.

What's your advice on immunotherapy and homeopathy?

 

Thanks for response in advance.

 

Dr. Rita

Radiologist

vaishnavi12
Posts: 1
Joined: Jun 2017

Hi,

I am from Hyderabad, India. My uncle who is 58 years old was diagnosed with Gallbladder cancer Advance stage in February 2017 and was given chemo for 3 times and his treatment included

 

Summary of Treatment:

INJ ZOLDONAT 4MG IV

TAB CAPECITABINE 500 MG 2-2X14DAYS

 

Case Discussion: He is diagnosed as carcinoma gallbladder with bone mets. Already given palliative RT to bone and brain.

 

and after that he was diagnosed with Jaundice with bilirubin count 8.5. Now bilirubin count increased to15. Metal stent was placed on may 25 2017. He is getting weak and has fever frequently. Now his bilirubin count is reduced to 3.4 after stent placement and at same time we have observed that his CBC is 6.5. When he was diagnosed with cancer Complete blood count showed 12 and now it is reduced to 6.5. He is very weak and is bed-ridden and was unable to walk. he can only take liquids. For one week he has loose stool atleast 5 times a day and it stopped now after taking some medicine.  Blood transfusion is done on 21 june 2017. We also tried some herbal medices. Our oncologist suggested that if we are ok he can continue with Chemo, but we are not sure whether my uncle will be able to take it. I wanted to know if there are any one who experienced the same and was able to survive. Are there any other alternative ways. We still have hope and wanted to try every possibility. Please help.

candicea's picture
candicea
Posts: 5
Joined: Jun 2017

hi my name is candice, my mom brandy 43 a mother of 7 we are all in are 20s and she has a 1 and 3 year old she was recently diagnosed with stage 4 gallbladder cancer this past 2016 Christmas. Probably the worst Christmas of are lives, but still happy where able to have are mother here. She was put on chemo witch seemed to be working but her lasted MRI results indicated that she had 11 new tumors on her liver and surgery wasn't a option. This is very hard on us but mostly for are little brother and sister they don't understand why my mom is in and out of the hospital this is devastating to all of us. The doctors are not giving us much hope. She is at kaisaer right now me and my siblings where able to get her better insurance so she can seek the best medical help we just don't know where to start if anyone can be help that would be wonderful thank you!

christ10
Posts: 2
Joined: Jul 2017

My dad was recently diagnosed with stage 4 gall bladder cancer that has spread to bones in his back and lymph nodes in his chest and lungs. We've been told by his oncologist that radiaton and surgery are not options, due to the cancer having spread. Chemotherapy is the only suggested treatment option with the use of Cisplatin and Gemcitabine for a life extension expectancy of 6-9 months. My dad is 78 years old and is in good health and exhibits no symptons to date. Are there any survivors with a similiar diagnosis that can offer some direction or insights on treatments?  

Ja59
Posts: 24
Joined: May 2013

Dear All,

Sorry for the late reply, but I work full timeand rarely go to this forum now.

I was diagnosed with stage 4 in December 2012. I only had gallbladder removed. Refused liver resection and chemotherapy. Spent 3 months in China having Immunotherapy, called ACTL. You can check this website http://cellsbay.com/cancer-treatment/

in 3 months all liver metastasis disappeared. I work full time for 15 months now. Strongly recommend this treatment, as it is easy to tolerate and it has no side effects.Gives good quality of life.

Cheers Tatiana

Kuldeep
Posts: 2
Joined: Oct 2017

She got gallbladder cancer stage 4 . Both lobes of liver are effected.  She had  her 1st chemo ( cysplatin and gemcitabin) .  I just wanted to know how much time she have if chemo didnt help... And also if anyone tht have been cured please let me know what type of chemo has been used..  I feel too hopeless:( . Hoping for an good answer.  I m so scared 

LiliTM
Posts: 31
Joined: Mar 2017

Dear Kuldeep,

I'm so sorry about your wife, there are no words for this fear for our loved ones. I also came here looking for hope and information (for my dad). I've learned a lot since this all started for us in March. One thing I've learned is that every situation is so specific to the individual. Gem/Cis seems to be the standard chemo they start with now for this diagnosis. I'll share with you some of what I shared previously on this site in case it helps at all:

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. Shrinkage is possible on this chemotherapy regimen. I have read about a few GBC cases in which chemotherapy (sometimes a different regimen) reduced tumors enough to render the patient operable, resulting in NED (no evidence of disease). The individuality 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 your wife has high microsatellite instability or tumor mutation burden, perhaps she 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. 

MyJourneywithCancer
Posts: 83
Joined: May 2017

I have to second LiliTM's suggestions about genetic profiling and immunotherapy.
Given that many early-onset cancers are hereditary, and KRAS and EGFR are reported in high-incidence in a North Indian study, targeted therapies can be a logical second line of treatment for your wife. If her family and demographic information indicate, I would also talk to the oncologist about a genetic counseling.
As for the relevant clinical trials, NCI-MATCH is a good place to start:
https://clinicaltrials.gov/ct2/show/NCT02465060.
MJC

SusanH53
Posts: 1
Joined: Dec 2017

Hello,

I am new to the board. I was getting tested to donate a kidney to my husband when the CT scan showed a gallbladder irregularilty of a stone they felt should be removed. Everyone was shocked at the pathology report showing stage3B gallbladder cancer. No symptoms prior to removal.

I am doctoring at the University of Minnesota Masonic Cancer Unit. Just started a 21 day cycle of  gemcitabine and cisplatin in November which I tolerate- but I can't keep my white bllod cell count up and have had to miss 2 chemo treatments. 

I am heartened at the stories of people living longer than expected, this is certainly not a cancer with good odds. So far I don't feel any effects I think are related to the cancer, so I don't really know what to think. I have a 3rd CT scan the end of January and meet again with my onocologist I should have been almost 1/2 way through the 6 month treatment by then but because of the WBC I am frustrated. 

Susan

LiliTM
Posts: 31
Joined: Mar 2017

Dear Susan, I am so sorry you are going through this too. And I hope your husband is doing ok as well with his health situation. 

You may have read from my earlier posts, I'm here for my father, who got his shocking diagnosis in March. He also started getting low white blood cell / neutrophil counts early on with Gemcitabine and Cisplatin, so at Memorial Sloan Kettering they gave him booster shots of Neupogen in between treatment 1 and 2 of a cycle. They started with a shot on 3 consecutive days (you can even administer the shots to yourself at home, that's what my dad does now) but they found one shot on just one day was sufficient to get his counts up. So if he starts a chemo cycle on Tuesday, he does a neupogen shot on Thurs or Fri, and is ready for chemo again on Tuesday. He does not take it during his "off week". 

Perhaps you can ask your oncologist about neupogen so your counts will be high enough for treatment? 

I'll share with you some of what I shared previously on this site in case it helps at all: 

Are you able to get a second opinion at one of the prominent centers where they see more cases of rare cancers like GBC, such as MD Anderson, Memorial Sloan Kettering, Dana Farber, etc? 

A consultation with an oncologist and a surgeon specializing in hepatobiliary cancers in one of those centers may be helpful,. 

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. 

rkbarboza
Posts: 1
Joined: Jan 2018

Susan,

I know how you must be feeling since I was also diagnosed on a routine follow-up CT scan with a mass on my gallbladder in November.  Thankfully, I had a surgeon who was willing to take a risk, (given my age -53 and overall health) and did surgery in December removing all evidence of decease (tumors).  I had tumors from my gallbladder that reached into my liver and up into my diaphragm.  I'm now 4 weeks post op and will be looking at Chemo.  My oncologist is putting me on Capecitabine, a pill based chemo.  Six rounds, two weeks on one week off starting in Feb.  

I to came to this board hoping to find anything hopeful from this rare cancer.  My oncologist told me there are just 4000 cases diagnosed each year, with more than half being women.  I share your frustration.  Are we the lucky ones who were able to have surgery to remove all the tumors?  I haven't seen much on this board about life after the tumors are removed?

Kathy

 

 

 

 

LiliTM
Posts: 31
Joined: Mar 2017

I just saw this opportunity to let the NIH know we need to see more resources put into Gallbladder Cancer research and trials: 

The National Institute of Health (NIH) is the US government agency that sets priorities and provides funding for a large share of the biomedical research done in the United States. Right now, the NIH is asking the public – patients, healthcare professionals, and researchers – to submit ideas for how to allocate resources via an online initiative called All of Us: 

Go to the link below and click the "submit new idea" button today. You have until 23 February to present your idea.

You'll need to register with your email and zip code and then wait for an email so you can verify your account. Once you are in, look for the blue button top right. You only need to fill in the top of the form: your email, your zip code, your question, and then there is a 500 character block for you to write about what you think needs researching. Don't be intimidated by the form! You can leave everything else blank.

KEYWORDS are really important: Gallbladder, cancer, metastatic, biliary, etc... Type a keyword, then hit return. You will see it appear in the blue box in the keyword field. Then add other terms. 

Once registered, you can vote for other people's ideas – use the search function to find and vote for every idea or story related to Gallbladder cancer. 

As a rare cancer, it's rare that research and trials get devoted to Gallbladder Cancer. This is our chance to have them hear our voices. Thank you! 

https://allofusresearchpriorities.ideascale.com/a/ideas/recent?blm_aid=0

KCFlash
Posts: 19
Joined: Apr 2018

LilTM - Thanks for all of the support and work you do for those of us battling this disease! -    God Bless you.  

 

KCFlash
Posts: 19
Joined: Apr 2018

Hello, 

 

I was diagnosed with GBC in February 2018 after routine removal of Gallbladder and the biopsy of my GB showed adenocarcinoma.   I then had a CT and MRI that showed no evidence of disease spread so they prepared for the liver resection surgery on 3/13/2018.   Unfortunately during that surgery they found a lesion on my liver which upon Frozen section appeared to be cancer.   However, the final pathology is that the lesion is Beign - NO Cancer.    Since I have had 2 surgeries I cannot have another surgery because they need my body to heal.    I did seek a second opinion at Mayo in Rochester and they confirmed.   Of course they did their own round of tests CT and PET scan.    PET scan did not show definitive signs of metatisis - they are some areas of watch and concern but the report indicates the the areas are more consistent with post operative changes.   The CT did show a 12mm x 14mm residual tumor in the cystic duct stump.    Unfortunately last week I developed a blockage of my bile duct - due to enlarged lymph nodes (again these can be post operative changes from the 2 surgeries - this is what my oncologist at Mayo is leaning towards.      As far as a stage they say they don't have a "stage" yet because of nothing definitive showing up on scans and my CA-19 is 7.    Last Friday 4/27/2018 I had 2 stents placed that will need to be replaced in 3 months.   I have been having pain in my back between my shoulder blades (this makes me nervous) which maybe it shouldn't because my scans are within a month.     I am also having some digestion problems since the stents.   So.... I have a couple of questions. 

1 - What can I expect with the Chemo Gemzar and Cisplatin - Planning on 4 rounds - week1 both second week just Gemzar then week off.    They want to hit it "hard".     Any helpful tips diet/exercise etc..

2 - Anyone have experience with Stents? - How long did it take to feel better? 

3 - Am I just being overly anxious nervous about the back pain?   I swear anytime I feel something different I am sure it's the cancer.    I just haven't been myself since my first surgery February 22 and it feels like it's taking forever to recover from the surgery on 3/13 - The open "exploratory".    Now the Stent on 4/27

4 - I am also a bit anxious that I haven't started chemo yet.   I know it's only been about 9 weeks since my first surgery and just a little bit over 6 weeks since the 3/13 surgery and I guess my body has gone through a lot.   

Thanks

richnkim
Posts: 27
Joined: May 2017

Hello KCFlash-first sorry to hear about all the surgies and the pain. Something you wrote caught my eye- you talk about back pain-that is what my husband went to the Dr for was upper back/shoulder pain thinking it was a gallbladder attack but it turned out to be Stage 4 Interaheptic Cholangiocarinoma (bile duct cancer) He has a huge tumor on his liver and it has metastasized to his lungs his bile ducts so far have remained open no need for stents,he has never been jaundice. This all happened 2 days before Christmas of 2017 and was told he had 3 months to live. He did the chemo cocktail of the Gem/Cis for 7 months when they stopped because of tumor growth,thru out that 7 months he was weak,low platelets needing blood transfusions and alot of aches and pain kinda like flu like symptoms. From there he went to a clinical trial for one of his mutations FGFR2 up to UW Carbone Cancer Center in Madison WI. This mutation was found by sending a sample of the biopsy to Foundation One lab. He was on that trial for 8 months and again tumor growth. Had to do a 1 month "wash out" period and we now are up at Mayo in Rochester too for another clinical trial for the FGFR2 mutation.

 Has a tumor sample been done to for sure say it is gallbladder cancer and has it ever been sent out for tumor mutation findings in case chemo doesn't do the trick then you could try some clinical trials?Gallbladder and Bile Duct cancer are very similar. With the bile duct been blocked just concerning is it really from a past surgery or something else. Of course I don't know all of your history it's just from what you had said it sounds so much like my husband's case and at first they were thinking gallbladder to and from what I have read alot of the time the two get mixed up in diagnoising.

As for the chemo side of it like I said expect fatigue and aches and pain. My husband never threw up he has some nausea which they gave him very good medicine to stop that. Stay away from sick people-good thing summer is on it's way you'll be out of flu seasons but summer colds can be hell to-get as much sleep as you can get,naps were an everyday thing. Eating at some points may get to eat whatever you to what eat if your appettie goes away but did he did stay away from sugar and ate alot of fruits and vegs just make sure to wash all of these well before eating to get off any chemicals that may be on them also he couldn't eat meat and from what the Drs told us that had to do with the liver and it trying to process it so he ate alot of fish and of course the good ole standby peanut butter sandwich it has a good source of protein. Some people may get mouth sores my husband didn't but our dentist said she had a rinse called "magic mouthwash" that would work wonders. He also liked popsicles but for some cold things made them sick and others hot things made them sick each person is different,but most that I talked to did say food tasted different either too sweet or too salty.

Sorry for such a long post but alot of what you've said rang true as the same as my husband's type of cancer. I wish you the best and pray for a complete recovery.

KCFlash
Posts: 19
Joined: Apr 2018

Thank you for your comment.   I have been worried about my back pain.    My original surgery was on 2/22 - My gallbladder was removed and cancer was found near the neck of the gallbladder in to the cystic duct.   Not sure how your husbands cancer was found (I am assuming this was in 2016 not 2017).    Since then I have had multiple multiple scans - CT and MRI - End of February which showed no Metasisis - hence the attempted resection on 3/13/2018.    Then I went to Mayo in Rochester for my second opinion - they have looked at all of my pathology as well as the original slides and confirm gallbladder cancer.     Mayo in Rochester required a CT scan with in 4 weeks prior to my appointment so I had that completed on 4/12 and saw the onlcology department on 4/13 - That is the test that showed the residual tumor 12mm x 14mm tumor.     Mayo then proceded to order a PET scan which again did not show metatisis.   Some watch areas - but most likely represent post surgical changes.    I needed the stents placed because the lymph nodes around the main duct were enlarged causing a blockage.    (they feel this is due to post surgical changes as well).    They did not find any cancer in the duct at all it was clear and clean.   The surgery spot from the original gallbladder removal was healed completely.   So I guess that is good news.   

 

Thanks for the heads up on what to expect with Chemo - Does your huband take pain medicine? what medicine was prescribed.    

To my knowledge there hasn't been anything done with the Tumor sample - I have my upcoming appointment on Monday starting Chemo on Tuesday I will ask.    

 

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