Gallbladder Cancer Stage 4

mamaji's said:

You inspire me Lily!!!

Hi,

Im very moved after reading your story, you helped me to log in and register myself in CNS.

 

My mother is detected with stage IV GB cancer and doctors says its not operable now, they have done stenting to reduce her jaundice, as due to sever gastric obstruction she got jaundice. However now the doc is not very open, neither he is answering all my questions.. he just says that sine she is non operable, she would be stented so that her jaundice comes down and then they would give her 4 cycles of chemo and then do a CT and in case there is reduction remove the cancer.

 

Im so depressed...Im presently in Mumbai, India...can you suggest me in case I should speak with any doctor in america and in case he can help me..also how much would be the cost to all this...

 

Im sorry to be asking so many questions..but is there a way out for me..is all I want to know and if yes then how!

 

Always be happy!!!

 

hi mamaji,

can you please share your mail id. Need some info

Regards.

Rebeccalindell said:

Gallbladder cancer spread to peritoneum

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 

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.

rande106 said:

gallbladder cancer specialist

My wife has stage 4 gallbladder cancer. She is being treated by Dr. Eileen O'Reily at Sloan Kettering in NYC who is one of the best in the field. Her whole team is excellant. 

Hi,

Hope your wife's treatment is progressing well. Please accept my best wishes for her healthy and quick recovery. My father was diagnosed with inoperable Stage IV Cholangiocarcinoma in May 2015. He was brought to the hospital in a severely jaundiced condition and ever since the doctors have placed 2 stents to relive the biliary obstruction. His bilirubin levels are at 5 now, but had reached 24 at one point of time. His oncologist have told us that they can't start chemotherapy until the bilirubin level falls below 2.5 atleast. His general condition has become very weak, as he has lost around 12 kgs of weight in the last 7 weeks itself. We are based out of Delhi, India. I'm looking for further guidance. 

Sing4Him said:

Newly Diagnosed

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. 

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.  

Ja59 said:

Immunotherapy

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.

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

vic_prash said:

My mother diagnosed with Metastatic GBC in Sep 2012

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..

 

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.....

CLTdoglover said:

Genetic Testing for GBC

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.

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.

CLTdoglover said:

Stage IV Gallbladder Cancer GBC

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.  

 

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?

Lily50 said:

Dee's Brother
Hello and welcome to this forum. I'm so sorry to hear about your brother and this terrible diagnosis. I am a gall bladder stage IV cancer survivor. Ask me anything you want and I'll try to answer.
Quite a number of us also had lesions on the liver. Sounds like he is receiving the standard protocol for this disease. Gemzar is a very good chmo drug and has shrunk many turmors for others. He has already experienced many hills and valleys and is fighting a tough fight. I wish him well and with everyday that passes he will get stronger for his chemo battle.
It amazes me that many doctor's miss the signs of this disease. It takes a caring and compassionate doctor to find these issues and it is usually in a very short time frame. There are some bad doctor's, some good doctor's and then there are some great doctor's. If we are lucky enough to find them they can ultimately save our lives. Dr. Hegopian sounds like a great one!
Hope & Faith will carry you through on this journey.

Take Care
Lily

hi

my mom was diagnosed GBC

how did you beat it?

she has liver mets, and her ca19-9 is 1200.

fortunately she has big operation tomorrow, cause we found the doctor willing to try

he is probably no 1. european abdominal surgeon, with over 1000 liver transplatations up to date.

if you have any tip, write back

thanks

Lily50 said:

Gallbladder Cancer Stage 4
Hi,
I too was diagnosed with gallbladder cancer stage 4 in the fall of 2005. My husband later told me that I was given a short time frame also. Well they were wrong!

I had aggressive chemotherpy for almost a year to shink my turmor so that they could operate on my gallbladder, liver, stomach and removal of lymph nodes. I have a great oncologist in Las Vegas, Nevada and had my surgery at UCLA in California. I completed my chemo in March 2007.

I never lost my HOPE or FAITH and no doctor should ever be allowed to take away your HOPE.

If I can help answer any questions just let me know. It is a hard road but it is worth it. Every day becomes a blessing.

Hi Lily50! Are you still in this chat? Just read this and was inspired! Would love to learn more about your experiences as my mother 67 has the same diagnosis. Thanks!