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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.

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

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: 15
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: 15
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: 14
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: 21
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: 14
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: 21
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

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