Gallbladder Cancer - 2013 (Any Stage)

Ja59 said:

Cancer immunotherapy

Hi All,

I am not a survivor yet, as I was diagnosed with GBC in December last year. I had a keyhole operation for gallbladder stones, where a malignant polyp was found. Surgeon also found a lesson in my liver, which happened to be a metastasis. I was offered a further Liver resection, though doctor said, that it will not cure me and I will die from liver failure anyway. I was very scared, but since I generally felt well, I decided to go to China  and test a new tumor cell targeting therapy, called AACTL. It is very new and still in trial stage, but you can get it for a fee. I sold my house to pay for the treatment and spent 3 months in China, where I was also getting traditional Chineese medicine treatment. I was very well looked after by the company, that offers this treatment and was consulted by some of the best surgeons. I do not know whether the treatment killed cancer completelly or not, but I feel much better physically. My CT scan showed some new changes in the liver, but they look different from usual metastasis. Doctors do not know how to interpret them. I will be having more scans later and will tell you about the findings.

The reason I am writing about my experience is that may be it does kill cancer??? I thought that if I wait a year for the result, some of the patients may miss out on possible cure. The information about this treatment is on this website http://www.cancertherapychina.com/index.php?option=com_content&view=article&id=287&Itemid=120

Please let me know what you think....

Love Ja

Hello, How are you? My name is Erik Peterson, I am doing research on new treatments for Gallbadder Treatments. Would i be able to contact you via telephone, because it is so much to go over in a email. Please let me know. My direct email is:  hegemonyinternational@yahoo.com

Thank you, 

Best Regards,

Erik

Lovingmymom said:

A Blessing….

Rich,

That truly is the best news you could have gotten!!  "No evidence of disese", "Stable tumors" or "Not Progressing" are the best words you can hear with this particular cancer. You're right, don't ever give up hope!!!  My mom has enjoyed years more than the initial prognosis would give her and her quality of life is excellent.  My mom enjoys her grandchildren, holidays and all the warm weather.  She doesn't accomplish as much as she would like to in any given day (long term effects of chemo) but she is LIVING, and we are grateful.  

Ask your questions, learn all you can and God Bless you all!

Be well,

Jessica

Mum had her second CT scan last week and the results were in yesterday. No sign of any cancer We are gathering the family on Saturday to celebrate. Mum has successfully completed her chemo treatment and is getting stronger day by day. We are taking her to the Highlands in Scotland in September as treat. Goodness knows she deserves it having been do brave in dealing with this.

She will have another scan in 3 months but until then we are on cloud 9!

shreyoni said:

GB stage4

my father has been diagnosed with GB cancer stage 4 in june2014. the cancer has spread to both the lobes of liver and surgery is not possible. he has been prescribed 6cycles of chemo -cisplatin & gemcitabine. he has already undergone 1 cycle and is about to start the next cycle. bt his blood reports are not permitting it..his liver function test is going worse day by day which if does not better, he wont be able to take chemo..doc says that cisplatin is becoming too much on him.perhaps have to change it.. he doesnt have a good apetite and is mentally very very low..he is getting really weak. really tough seeing him like this.

Recently I have learned about psorinum therapy. but not sure if it can help.

any help any information from anyone is welcome..it would really help. 

regards

I wrote on the 2014 section seeking advice and help for my husband who was diganosed in November 2013 with GB cancer with mets all over his liver. Unfortunately he died on the 26th June, none of his chemo treatments helpt, de tumors just kept growing.

I am happy however to read of so many of you doing good, I wish all of you goodluck and strenght to continue to fight this monster, 

Good luck. 

Ja59 said:

Immunotherapy update

It is 20 months since I was diagnosed with stage 4 GBC. I only had gallbladder removed. Refused liver resection, only byopcy, as this operation only helps to confirm the stage of the disease, but can spread cancer like wildfire. It is also very traumatic and has high death rate. I know, I am a surgeon myself. I had three months immunotherapy treatment in China, called ACTL. Also took propolis 8 Gr. a day for 2 months. Refused chemotherapy and morphine. For pain had acupuncture and massage- worked very well. My overall condition improved, but i noticed increasing symptoms of common bile blockage. Ultrasound looked like stone blockage, but surgeon was sure, that it was tumour growth And offered an operation. They can't think about anything, but cancer. Being a doctor myself, I did not believed him and performed liver cleansing, based on Apple juice. It worked, stone passed, though I had a terrible pain attack. I've got to the hospital and both ultrasound and CT scans showed nothing- no tumour, no metastasis. This was a year ago. I work full time now and exercise 5 days a week, I mean serious training- boxing, weights and yoga. I re-checked my hystology tests, the results were the same - cancer With liver metastasis. If doctors did not make a mistake, looks like ACTL is a cure.

Hi,

After having surgery in March, 2014, for removal of gallbladder, parts of my liver, and hysterectomy, tumors still remained in my liver. I've been back on chemo the past 4 months with my tumor markers going down, but scans showing tumor growth. My team is recommending a type of vascular radiation known as SIR-Spheres, which sends radiation directly to tumors in liver through an artery. It is considered far less invasive than surgery. I'm wondering if anyone else has had this procedure? I"m hoping for the best, but of course there are no promises as the doctors know of no one in my situation who has had it. It is more typically used for colon cancer.

Laurel

Ja59 said:

SIR spheres

Hi Laurel, 

I do not know about this treatment, sorry. Just wanted to ask, why did you have to wait that long for the removal of the gallbladder? I am a surgeon and do not believe in surgery for liver metastasis- it will make matter worse. My advice would be to have Crioablation, or freezing of the large metastasis. The procedure is done under ultrasound guide, so the tumour should be seen on the ultrasound scan. If there is one tumor, that is seen, there could be multiple, which you can't see and they will start growing when immune system is weakened. I suggest to have immunotherapy (CTL). It exists in the USA. I did it April 2012 in China. Did not even had any chemotherapy. Haven' been to the doctors for a year, so did not have any scans. But I feel good, so I guess everything is OK.

Hi Ja59,

I read your account of your treatment with optomism and I am so happy for you and glad you are still feeling good. Do you mind if I ask a few questions about your treatment? I was diagnosed with GBC in November 2013 while living in Florida, I did not want to know the stage or prognoses ( I know I am just a big coward!) but I found it easier to concentrate on feeling well than dwell on what I had. I came back to England and received gemcitabine and cisplatin which shrunk and stopped the tumour from growing .They refusedto take my gallbladder out and I beleive that the cancer has started to grow again, I have been researching Immunotherapy abroad before I see my consultant within a few days . I read your last blog that said it is available in the States, all I can find is it in India and China? I tried to look up the Hospital you said you had your treatment at but the web domain has expired.What made you chose this Hospital over all the others? was it recommended? What was the treatment and how long were you in China ( I only ask because I would be going on my own) I really want to make the right decision would you still recommend this Hospital, if so do you have an email address where I can contact them? I am so sorry for all the questions but would love the outcome to be the same as yours.

Ja59 said:

Immunotherapy

Hi Dianne,

I also did not find immunotherapy in the USA, but I know about its existence there, because it was invented there and celebrities get this treatment. i know only one hospital in Beijing, which does it http://www.puhuachina.com but I was in a military hospital. Immunotherapy is not part of conventional treatment in China and organised throug biomedical companies, which get contract with hospitals, depending on required treatment. That is why I was in hepatic hospital, but conditions of the ward, were not of our standards, though good. Not many nurses can speak English. This is another reference http://www.cancerbiomaster.com/index.php/news/80-treatment/87-ACTL

this is a direct contact to Stanley Niu niu.stanley@gmail.com he is a coordinator. My e- mail is stebakova.tatiana@gmail.com write to me! My treatment was 3 months.

Hi Ja59,

Your post on immunotherapy brings hope. My mom, aged 58 yrs, was diagnosed with GBC stage IV in August this year.It  had partially spread to liver, colon and lymph nodes. After 2 cycles of chemo(gemcitabine + oxaliplatin) there was marginal shrinkage in tumor, but after 4 th cycle it grew again. Our oncologist is not for 2nd line chemo and was suggesting immunotherapy(dendritic cell) as a safer option with less side effects though not great success rate.We are based in India and he has suggested Apacbiotech based in Gurgaon. Was your treatment in China also denditic cell therapy or some other type?could you give details about procedure, costs etc?

Any feedback about immunotherapy(dendritic cell therapy) from other survivors on the network would be very much appreciated.

15

Feb 20, 2015 - 2:59 am

My mother diagnosed with Metastatic GBC in Sep 2012

New

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..

Hello everyone and thank you for sharing your inspiring and informative stories.

My Dad Geoff has been diagnosed a week ago with GBC, he is 66 yrs young and very fit and healthy. He is married 42 years with 2 children and 6 grandkids. He was still working as a builder up until last week. This has rocked our world!! 

He thought he had indigestion and went in for scan which revealed tumour in gallblader and lymph nodes above pancreas and surrounding bile duct, they also mentioned it has trsavelled from portal vein....etc. We are very new to all the terminology and finding the diagnosis confusing because his doctor first told him it was contained to gall bladder after laproscopic surgery and could be removed. However after he opened him up Dr discovered it has spread too far to lymph nodes and is incurable/inoperable. My Dad lives on the Gold Coast Australia and we are finding out that this cancer is so rare that most surgeons even if they specialise in gallbladder issues may not see this cancer in patients very often maybe 2 a year.

We feel like the doctor has just wiped his hands free of my Dads case and just referred him to oncologist who has recommended Gemzar+Cisplastin but also said this is very asgressive and we can only hope to manage his illness not cure it and that he may live 12months if lucky!!! 

We are devasted by this news as he planned on retiring and travelling around this great country of ours this year. 

Does anyoone have any recommendations for Doctors in Australia?

After reading the stories from everyone on this forum I feel quite confident that we can do something to prolong his life, anyone had any luck with cimetidine? The oncologist also suggested immunotherapy.

Please offer any advice, we are very new to this world. Best wishes to everyone sufferring with this awlful disease. Kerrie

Kerrie7 said:

Gallbladder cancer advanced to lymph nodes and portal vein

Hello everyone and thank you for sharing your inspiring and informative stories.

My Dad Geoff has been diagnosed a week ago with GBC, he is 66 yrs young and very fit and healthy. He is married 42 years with 2 children and 6 grandkids. He was still working as a builder up until last week. This has rocked our world!! 

He thought he had indigestion and went in for scan which revealed tumour in gallblader and lymph nodes above pancreas and surrounding bile duct, they also mentioned it has trsavelled from portal vein....etc. We are very new to all the terminology and finding the diagnosis confusing because his doctor first told him it was contained to gall bladder after laproscopic surgery and could be removed. However after he opened him up Dr discovered it has spread too far to lymph nodes and is incurable/inoperable. My Dad lives on the Gold Coast Australia and we are finding out that this cancer is so rare that most surgeons even if they specialise in gallbladder issues may not see this cancer in patients very often maybe 2 a year.

 

We feel like the doctor has just wiped his hands free of my Dads case and just referred him to oncologist who has recommended Gemzar+Cisplastin but also said this is very asgressive and we can only hope to manage his illness not cure it and that he may live 12months if lucky!!! 

We are devasted by this news as he planned on retiring and travelling around this great country of ours this year. 

Does anyoone have any recommendations for Doctors in Australia?

After reading the stories from everyone on this forum I feel quite confident that we can do something to prolong his life, anyone had any luck with cimetidine? The oncologist also suggested immunotherapy.

Please offer any advice, we are very new to this world. Best wishes to everyone sufferring with this awlful disease. Kerrie

So sorry to hear of the diagnosis. GBC is pretty rare and trying to find up to date information and advice can be tricky. I can't comment on the exact treatment options and do not know about Australia specifically but let me give you a summary of my experience and some basic advice to get you moving in the right direction.

My mum was diagnosed with gbc and mets to the peritoneum back in Jan 2014. The first oncologist gave her a year and at most maybe 2. We were offered that first line treatment for this cancer which was the GemCis chemo with a 2nd line treatment of 5fu (cannot remember full name) if this did not work. Mum managed to tolerate the GemCis very well with just some minor constipation, hair loss and the occasional mood swing due to steroids!

We, like you were rocked by the diagnosis and sought a 2nd opinion from a billary tree specialist at the Christie hospital in the UK which is a leader in treating all forms of cancer. The 2nd opinion was slightly different and did give us some hope. We were told that if indeed the scan had shown mets then the original prognosis stood. However he said that he presented my mum's scans to a panel of experts and they were undecided as to whether the shadow was in fact cancer or not!?!? No doubt, she did have cancer in the gallbladder but this has been removed in an earlier op.

We are now over 1 year of scans showing mum as free of signs for cancer Based on our experience I would recommend the following:

• Get a 2nd opinion ASAP from a top oncologist in your country that deals with gbc, if there isn't anyone look at other leaders in the field. This is not an exact art, different oncologists have different opinions and can make a mistake.
• Fight for your dad and learn as much as possible about the status of his illness. Mum did not want to hear her prognosis and used to moan at me for questioning the doctors so much but it means you can be prepared as the journey unfolds.
• Your onc mentioned immunotherapy. My understanding is that this area is still very new but looks to be very exciting. If there are trials happening in your area read about them and get your dad prepared should this be your last line of defence.
• Never give up hope, this path is just as, if not more painful for the family than it is for the patient. Your dad will know that this is cutting you up but show him strength so that he can focus on his own health and not worry about you. My mum was able to cope because the whole family pulled together and managed to carry on with life without breaking down.

This is a twisty turny road. The past week will have been such a low point for you, but there is always hope. The stats online are old and heavily biased towards very elderly patients. Do not let them be your guide. Keep us up to date with your dad's progress.

You could also take a look at the cholangiocarinoma foundation website and forum here: http://cholangiocarcinoma.org/ Most of the people there have bile duct cancers but a lot of the information is still useful since many treatment options align with gallbladder cancer.

All the best!

Rich

Kerrie7 said:

GBC Rich24uk

Dear Rich,

 

Thank you soooo much for your reply and your advice, we have sought a leading surgeon in Oz who has experience with this area, we have appointmemt Monday next week and are hoping the first doctor has made an error. Dad has been told by his first surgeon that his gall bladder cannot be removed and the cancer has spread too far but we are seeking a second opinion because there have been discrepenciesfrom first consultaion from scan results. My Dad  was opened up last week and we are very angry that this happened. The doctor initially said that the scans looked good and the cancer was contained to GB, he ent in for exploratory surgery and again told only in the gall bladder. He was booked into surgery again following week, opened up and told it has spread too far nothing they can do!

We are hoping the new surgeon can either give us a straight answer or will be prepared to operate after chemo.

We will always fight alongside our Dad because he wants to fight this illness and have a few more years to enjoy his retirement.

 

Thanks again, I will keep you posted.

All the best to you and your mum.

Kerrie

Hk Kerrie, I live in Melbourne now. I was diagnosed GBC stage 4 with liver metastases. Was given 4 months to live. it was in December 2012. I was the first Australian, who received immunotherapy in China. You can read about it there http://www.asiancancer.com/technology-equipment/2619.html

I am completely cancer free and working full time. Gallbladder was removed, but I refused chemotherapy. Prof Samra was my dr. He can't beleive the outcome. Call me on skype, as webmaster blokes any contact details. It is tatiana.stebakova1.   You can find me on facebook. I tried to promote immunotherapy here, but feel like there is conspiracy against anything, rather then treatments provided by pharmaceutical companies. Immunotherapy trials are everywhere, but mostly on dendric cells,  which is also available  in China and India, but not that effective as ACTL. Dendric cells treatment needs to be repeated as this cells do not keep memory of which cells to attack. Gallbladder will have to be removed later on, when it becomes resectable. Hope I am not too late.