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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.

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

Hello Mandy,

Welcome to our board, we are so glad you have found us. I'm sure that you and your mum were devastated when the long surgery that was scheduled was cut short. Sometimes that does happen and the doctors have decided that it would be too much risk for the patient.

After a time period many have had to have their chemo medications changed due to their tumor(s) no longer responding to the medication. What chemo medications has she had and what is the new medication? There are side effects with almost all chemo medications. Some people do very well and others have issues. It depends on the person. Your mum's body had gotten used to the chemo that she was receiving and now that it has been switched her body is letting her know that this isn't the same stuff that she was receiving before and it doesn't like it.

That is a true statement "Cure" isn't possible but there is alway "Remission". I was originally diagnosed in 2005 and here it is 2011. It is a long journey but with Hope and Faith anything is possible.

What this board does for others is give support, recomendations and Hope. Ask us any questions you want and we will try to answer your questions.

In August of 2005 I had CT Scans, ultrasounds, needle biopsies to determine my diagnosis of GBC Stage IV. I received chemo treatments from December 2005 thru September 2006. I went four days a week 6-8 hours daily for two weeks and then off for one week. I was receiving Cisiplatin and Gemzar. On the off week I was receiving White and Red Blood cell shots. My platlets tanked and I had to recieve a transfusion. During this timeframe I went twice to the surgeon to set up my surgery but he just kept sending me back for more chemo. In October I had an ERCP which stands for endoscopic retrograde to see if I would be able to have surgery. On October 13,2006 (Friday the 13th) I had an Extended (radical) cholecystectomy, it was a very long surgery (12 hours). My gallbladder was removed along with a wedge resection of my liver, 8 Lymph nodes, common bile duct, ligament between my liver and intestines, removal of the duodenum, and part of my stomach. 4 of my lymph nodes still had cancer cells in them so I would have to do an additional 3 months of chemo. I had a PET Scan in January of 2007. I continue to see my oncologist every 8 weeks and have blood taken for my markers and I have CT scans every 6 months. I have had no recurrance and for that I am truly blessed. Light exercise, healthy eating, meditation, and yoga have all been helpful.

Hope that answered your questions and if I left anything out let me know.

Take Care
Lily

MandyCHK
Posts: 5
Joined: Apr 2011

Hi Lily,

Mum’s case: in July 2010, Mum was diagnosed to have the gallbladder cancer Stage 4, the cholecystectomy operation was scheduled to take place on 14 July 2010 and we were advised that the doctor would also need to remove the duodenum, part of the pancreas, about 40% of the liver and part of the intestines and the operation theatre was then booked for 12-16 hours. However, once the doctor opened up mum’s body, he said the cancer cells had spread over to her abdomen wall and the tumors are attached too tightly to the nearby organs, which operation only took 2 1/2 hours. The doctor later told us that if he completed the whole process of removing the organs as scheduled, it would take a long period of time for mum to recover and, maybe at the same time, the cancer cells may build up very quickly, then mum might miss the chance to take the chemo medications to control the cancer cells. Therefore, all he did was only to connect the liver directly to her intestines ( a by-pass) as a precaution to reduce the side-effects (vomit) for mum when she take the chemo treatments.

I then visited a number of oncologists and they all came back with the same answer and agreed with what the operation doctor had said. Then, mum was then persauded to have chemo in August 2010 (which she originally refused). The medications then were used called Gemzar and Xeloda, which fortunately happily last until early March 2011. the side effects are minimal, mum only lost some hair and felt tired a bit during the medication weeks, during the off weeks, she was happy and comfortable. Sometime she has very good appetite too.

The CA A 19.9 index dropped from 1,669 to 125. During the last 7/8 months, mum only has about 3 white blood cell shots and about 3 times for blood transfusions. During these 7/8 months, mum also the one PEST scan and one MRI scan until early March 2011 when the index went up and then she took another MRI scan showing the tumor grows bigger to the original size.

On 28 March 2011, she started the new combination of medication called oxaliplatin. She had the injection at the clinic and carried a tube for another bag of medicine for injection for 48 hours (substitue of the edible tablets), she immediately lost all her apetite, felt pain in the area where the tumor is, very, very tired. Even the smell of the food makes her stomach extremely uncomfortable and stuffy, she said it’s like she is having the morning sick as a pregnant woman. She couldn’t even digest a few mouthful of water.

We went to see the doctor today and told him about mum’s situation and he suggeted we do blood and urine tests and go back this Friday.

Lily, I understand that there must be differences between your goodself and mum, but I just wonder why you can take the cholecystectomy but mum can’t!! For which I have raised a few times with our existing doctor but he still says "can't do".

From far away in Hong Kong, I would like to sincerely send to you my blessings and thank you again for sharing with me. I am still adjusting myself everyday. It seems that there isn’t a firm answer of whether I should hold on to the HOPE and FAITH and ask mum to continue bearing in mind that I really can’t do anything to comfort her uneasiness…. Sometime I would think sooner or later (you know) the "end" will come, so as long as there isn’t much pain, let her go…. But I don’t want to…. Mum said she can’t just go without seeing my 6 years old son to grow bigger and stronger….. (my heart is breaking to pieces…….)

Heaps of love from Hong Kong
Mandy

maudsie
Posts: 54
Joined: May 2010

Hello Mandy, I have been reading your recent posts and Lily's replies. You have done a great job outlining your mother's journey up to this point. It seems the docs are thinking your mum's best course is to try chemo, with the hope that the tumors and cancer spots can be brought enough under control and made a smaller size so that surgery can be an option. The surgery isn't an easy one, both for surgeons to do and for patients to tolerate, and if the tumors are too scattered to remove them all, then chemo is a good option. The doctor's opinion could change if/when your mother improves with the chemo she is on. She does need nutrition meanwhile, however, eat and drinking. Has she tried nutritional supplemental drinks like Boost or Ensure? You are a good and loving daughter, and that shines through in your words. I send prayers your way.

Maudsie

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

Hi: Lily and Maudsie gave you great information. One thing you might try re the oxaliplatin is make sure your mom doesn't get cold - no cold drinks, no ice in drinks, no really cold food like ice cream (which I love!), no opening the fridge without a face mask and gloves. I am going to be starting FOLFOX which includes oxaliplatin and 5FU and this is what I was told (and living in Canada hard to avoid the cold!). You only need to avoid cold for 3-5 days after chemo. The rest of the chemicals are often given as a take-home pack with constant infusion. As well, they should be giving her anti-nausea pills for after-chemo so she can tolerate food better. Hope this helps!
Cheryl

MandyCHK
Posts: 5
Joined: Apr 2011

Thank you so much for the supports from maudsie and westie66. your messages are well noted. Yes, mum has been (sometimes only) also taking Ensure as supplement when she lost her apetite and realising that she really needs to consume something otherwise her stomach would ache again and maintain her nutrition. so she would have Ensure and maybe half a slice of bread.

Yes westie66, the nurse from the clinc reminds us of the "cold" side effect. in Hong Kong, now is spring and the weather is around 22-28 degrees and she still feesl cold when she takes a shower and has 3 layers of clothes.

She told us last nite and she felt better since the injections on 1 April 2011, which is good and a great relief.

also, she couldn't sleep at nite and she is now on sleeping pills.

Lily, the more i think about your message last night the more inspiring it looks in relation to your successful operation, your successful story stayed in my mind all nite. I fully understand that it depends on different person's situation, however, I still think i should ask you. OK, I know we live in Hong Kong, however, with the not-so-easy-to-give-up spirit and with HOPE and FAITH, I wonder if you could in any way sending me your operation doctor information and details and I wonder if i can courier mum's medical report and history for his / her consideration to see if an operation is still feasible. my family and I are looking forward to hearing from you in relation thereto.

Lastly, one more piece of information, in July 2010 when mum was diagnoised the cancer, the doctor told us that if mum refused chemo, it will last 4-6 months and if she did, it will last for a further 4-6 months. I wonder if the stage IV still covers its various sub-stage thereunder? Since mum was 61 years last year and does it mean the age of the patient and the actual sub-stage of the cancer designate the length of her remaining life time by the doctor?

heaps of love and blessings to you all here.
mandy

alexinla
Posts: 2
Joined: Apr 2011

Hi to all of you (some of whom I have been luck enough to meet on other boards - Maudsie ;)

My mother has Stage 4 GBC, and starts Gemzar/Cisplatin next week for a recurrence in one lymph node. She's consulted with UCLA and UCSF, and is having her treatment in Monterey, CA. I'll be sharing as much information as I can as my family embarks on this journey. I really do believe the medical community is turning the corner on treating, and managing, this dreadful disease, and our loved ones are much better equipped to fight this disease than they were even 2 years ago.

Thanks to all of you for your inspiration.

My mothers brief history:

Jan 2010 diagnosed
Jan 2010 cholystectomy (UCLA)
May 2010 Whipple (UCLA, Dr, Reber - the best) after more cancer discover in her bile duct inside pancreas
Great path report postwhipple (clean margins, clean lymph nodes)
March 2011 confirmed recurrence in 1 lymph node (2cm well circumscribed)
April 19, 2011 Begins Gemzar Cisplatin

The shock is horrible, and the reaction from doctors is even worse... there's just no easy way for them to say 'stage 4'... but I'm convinced that even metastatic cancer is now a manageable chronic disease , not a death sentence (as Lily has proven!). Science is now on our side.

Looking forward to sharing great stories of successfull treatments!

Alex

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

Hi Alex,

Welcome!!!

I'm so sorry to hear about your mom's recurrence. It is a true statement that this is quite a journey and you have to have patience. Gemzar and Cisplatin was my chemo cocktail also. I had chemo first then surgery, then additional chemo because 4 of my lymph nodes that they removed still had cancer cells in them. I think that is a very true statement, there seems to be more of an awareness for GBC.

I have to add that I had a radical cholystectomy at UCLA with a team of surgeons headed by Howard Reber - the best. He told me No the first two times that I saw him but then Yes the third time. He isn't the most compassionate doctor that I have ever met but he is the best in his field.

I think that there are many doctors whom have become so jaded with their experiences that they aren't willing to look outside of the box and can no longer be compassionate. That is so sad.

Let us know how it is going for your Mom and you.
Take Care
Lily

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

Hi Mandy,

Sorry it has taken me so long to respond, it was a very busy week. Thanks to Maudsie and and Cheryl for their great input.
I'll try and answer some of the questions you asked me in the two previous posts to the best of my ability.
I too had a major loss of appetite and felt like I had morning sickness that lasted all day long. I'm sure besides the chemo the pain pills and the Xanax added to the nausea. I just tried to snack all day long. Healthy snacks, lean meat and smoothies of course.
I really can't answer the question as to why I was able to have the surgery and your mum couldn't. I do know that I was young (46) and didn't really have any other health issues. There was a time that I heard numerous "No's" regarding the surgery. I don't know exactly what made the surgeon change his mind after refusing to do it twice before. I don't know if some of the factor's regarding my case were the catalyst or if the relationship between my oncologist and my surgeon was the catalyst. Or the combination of both. There is really no way for me to find out but for whatever reason everything finally came together for me, after quite a long time.
No one ever wants to lose their Hope and Faith but when your mum is called home then that is the way that it is and we have to accept that even though we may not like it. You can tell by your posts that you love your mum very much and only want the best for her. You are a continuous source of love and support for your mum. She knows that in her heart and as a mom myself I know that we never want to be a burden to our children.

My surgeon's name is:
Howard Reber, MD
Specialty Surgery
Hospital Affiliation Ronald Reagan UCLA Medical Center
State License Number C37087
Contact (310) 825-4976
Email Address hreber@surgery.medsch.ucla.edu

He is assoicated with The Jonsson Comprehensive Cancer Center.
http://www.cancer.ucla.edu
Check out this website first, it has lots of good information.

I think that alot of the statistics regarding timeframes take age and patients overall health into consideration.

Hope you and your mum are doing well and I'll talk to you soon.
Take Care
Lily

tdover
Posts: 1
Joined: Apr 2011

Hi,

After losing almost 40 pounds since the beginning of the year my mother-in-law (who just turned 66 two weeks ago) was finally convinced to go to our family doctor about 4 weeks age. Since then she has had multiple tests including several scans, an endoscopy, xray of lungs, mri, ct guided biopsy of adrenal gland and pet scan. Additionally, they did nuclear testing on biopsy.

After talking to the oncologist they were sure that the primary origin was either the lungs or pancreas. When she went back yesterday to discuss the final test results we were all shocked at the diagnosis, including the doctor, of stage iv gallbladder cancer that involves the bile duct and spots on her liver, lungs, adreanal gland and lymph nodes. Since her first doctors visit a month ago she has lost another 18 pounds.

She is supposed to start chemo this coming Monday that includes Gemzar and Carboplatin. The first week she go one time and receive both medication, the second week she will go one time and receive one medication and then will off on week three. They are planning on doing this treatment three times and then rerunning the tests to see if the cancer has shrunk at all.

After reading what everyone else's posts I am wondering if the recommended treatment is aggressive enough. We are still in shock and don't know anyone who has ever suffered from gallbladder cancer.

Does anyone have any recommendations for oncologists in the Atlanta area?

Thank you,
Tina

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

Hi Tina: I know it is a terrible shock and hard to bear. The Gemzar and Carboplatin regime seems to be one standard but most of us even in Canada have had the gemzar with cisplatin (a more aggressive chemical with more severe side effects for some) both together for 2 weeks then the 3rd week "off". Lily had even more aggressive treatment - chemo before surgery, surgery, then chemo again - but her last chemo regime was every day for 4 days for I think 3 months with cisplain and gemzar (in Canada it is called gemiticibine). I didn't have too many adverse effects from the cisplatin and I'm almost 68. A positive attitude is very important. I live in Canada and so can't comment on oncologists in the Atlanta area. One thing to check for is the presence of "seeds" - nodules on the peritoneum and omentum.
Cheryl

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

Hi Tina,

Welcome to our discussion board! I'm so sorry that this disease has come into your lives. It isn't a well known cancer but in the last 5 years there has been more and more discussions about it. I too lost 35 lbs before I went to the doctor in 2005. At the time for me I just thought I was doing so well on Weight Watchers (getting healthy), boy was I wrong. I was in Stage IV also and was inoperable at that time. After 10 months of chemo I had my surgery and an additional 3 months of chemo. It is over 5 years and I'm still here with plenty to say.

At least you now have a diagnosis and can proceed with the recommended treatment plan. I too started out with Gemzar and Carboplatin. I didn't tolerate the Carboplatin well so I was switched to Cisiplatin. I was on an extremely aggressive treatment plan. I went 4 days a week for 4-6 hours for two weeks and then had a week off. The off weeks I received red and white blood cell shots so that I could receive chemo the following week. They will adjust her chemo treatments according to how well she does. The oncologists have protocols but every patient is different. A factor in my aggressive treatment might have been that I was 46 years old and had no underlying medical issues.
I don't know of anyone off the top of my head in Atlanta but I check my contact list for you. Stay positive and have Hope and Faith.

Take Care
Lily

bjs
Posts: 23
Joined: Apr 2011

Hello Tina,
i am am so sorry for your mother-in-law and your whole family's having to go through this. I was diagnosed in March with gallbladder cancer that had spread to my bile duct. i had my gallbladder removed and have been undergoing radiation and oral chemo with Xeloda for six weeks. Then i will have a month off before another chemo regimen for six months or so. I am relatively fortunate in that the cancer has not spread beyond the bile duct so it could be treated with radiation. We talked to two oncologists before choosing one. We chose largely on the basis of recommendations from my doctors. I live in Seattle so am not familiar with the Atlanta area but in such a big city you should have lots of choices I hope. I think one of the main factors in choosing an oncologist and a cancer center is to have someone familiar with this rare cancer and other digestive cancers. It seems that each type of cancer is different and requires a different treatment.
I will be thinking of your family.
Betty

MandyCHK
Posts: 5
Joined: Apr 2011

Hi Lily, sorry for the delay in reply.

Thank you so much for your support and your doctor's contact details. I will as soon as I can send off all my mum's doctor reports to him and wait for his comments.

I will update you in due course.

My best wishes to your goodself and everyone on this thread.

Take Care
Mandy

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

Hi Mandy,

Good to hear from you! You are very welcome, we are all here to support you!
Keep us updated as you can. We all know too well that this is a very difficult time for you and your Mum. When you need us just let us know.

Take Care
Lily

MandyCHK
Posts: 5
Joined: Apr 2011

Thanks so, so much Lily. With a big bow. Best Wishes. Mandy

maudsie
Posts: 54
Joined: May 2010

I am Maudsie, and I live in North Carolina. I received my GBC treatments at Duke in Durham NC......but Atlanta, as someone has pointed out, is chock full of good medical options, too. Most prominent I think is the Winship Cancer Institute, part of Emory University Hospital. It is important to get care at a major medical center, preferably an NCI Comprehensive Cancer Center, since gallbladder cancer is so rare. It is also true, however, that good oncologists from all over network with each other and are usually aware, or can find out, what the best and most up-to-date treatment options are for any given situation. But also important is to do what you are doing: research! ask questions! forums like this one! The internet has made such a difference for many of us -- given us a way to seek out some of this information for ourselves. And knowledge is power.
Best,
Maudsie

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

Hello everyone,

This morning our dear friend Don was taken home by our Lord. He fought a good fight with this terrible disease.

Our thoughts and prayers are with Jan and her family at this difficult time.

This was Don's mantra (Now by Dave Carroll), give it a listen if you have a few moments.
http://www.youtube.com/watch?v=uQ1wtftL3nA

Take Care Everyone!
Lily

SusanCH
Posts: 4
Joined: Jul 2011

Hi
My first time to this discussion board. My name is Susan and I was diagnosed with gallbladder cancer that has spread to the stomach lining. I too have been told that surgery is not an option because the cancer has spread and that I have a very short life expectancy. I am 55 years old and otherwise have no health problems. I have no pain. My original symptom was nausea which I still have but I can't tell if that is due to the cancer, chemo, dehydration, or?. I have been getting Gemcitabine and Cisplatin once a week for two weeks followed by a week off. I am being treated at the University of Wisconsin - Madison cancer center by an oncologist. He is using the CA-19-9 as a marker and it originally was 132 but has gone down to 92 since starting chemo treatments in February.

I wonder if I should question my doctor about possible surgery? Is there a certain point in treatment where surgery becomes an option? Also am curious why he seems to be using a different marker than what others are talking about. Really, any advice anyone can give me in terms of how to approach this would be helpful. I have been shy about asking for a second opinion because my oncologist has seemed happy with the results he has been getting. Perhaps I should be more assertive about that. Does anyone have any advice about the types of questions I should be asking?

Any help is much appreciated. Susan

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

Hi Susan: See other responses on the "other" discussion thread for gallbladder cancer - for some reason we ended up with two similar threads! I did respond there too but forgot about the cancer markers. My oncologist doesn't really believe in them but I had them done in blood work anyways. I had CA-19 and CA-125 and CEA done. The CA-125 is for ovarian cancer and its spread to the peritoneum, the CA-19 for liver and CEA for other cancers especially colon cancer. Their increases/decreases can tell the oncologist what is going on with the cancer growth and spread I guess. Mine tests were all normal. My gallbladder cancer was detected during a simple blood test during an annual physical exam which showed a rise in liver enzymes.
I don't know much about tumours in the bile duct but LIly50 can sure help you there as she is a 5+ year survivor of gallbladder cancer.
Cheryl

JennaB11
Posts: 6
Joined: Oct 2011

Hi Lily50. I have read a lot of what you wrote. Your story is much like my father in laws. He is having chemo right now, he is in his second round of it. The Drs were going to do a surgery to help him eat but they could not do it, or it would do more damage. That's when they found out that the cancer had spread and is now stage 4. He had a blood clot in his lungs but that is being treated by medication and is doing well. Would you please give me your doctors contact information also? I'd really appreciate it. Thank you.

Take care of yourself,
Jenna

JennaB11
Posts: 6
Joined: Oct 2011

Hi Lily50. I have read a lot of what you wrote. Your story is much like my father in laws. He is having chemo right now, he is in his second round of it. The Drs were going to do a surgery to help him eat but they could not do it, or it would do more damage. That's when they found out that the cancer had spread and is now stage 4. He had a blood clot in his lungs but that is being treated by medication and is doing well. Would you please give me your doctors contact information also? I'd really appreciate it. Thank you.

Take care of yourself,
Jenna

my_mom
Posts: 1
Joined: Jul 2011

Hi,

My mother in law residing in India aged 68 has been diagnosed with gall bladder cancer stage iv, 6 days back. Family doctor as well as specialist we have consulted have told us that it has been spread out side to adjoining part of liver & she won't be able to bear the chemo as she is sufering from other aiments like diabeties, hyper tension & her heart pump rate is about 35%.

For last six months she has been given blood due to low heamoglobine level cause of this may be loss of blood via digestive track.

Please can any body suggest the course of action should be taken as we can not sit & watch.

Binny

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

Hi Binny,

So sorry for my tardy response. This thread takes forever to load and finding new posts are quite difficult. There is a more current thread called Gallbladder Cancer 2011 that has current posting, please check it out. There are a few people who are dealing with this disease who are also in India.

First and foremost I'm glad you found us and I'm so sorry to hear that your mother-in-law is facing this terrible disease. This isn't an easy disease and I'm sorry that she has so many other health issues. To be told no chemo had to have broken your hearts.
I'm all for getting 2nd, 3rd, and even 4th opinions. Eastern and Western medicine both have options and the healing of the physical, spiritual and emotional components of the body is necessary.

What are her wishes with regards to facing this disease? Quality of life is sometimes the best decision that one can make. Once all options have been exhausted and you can find peace with this disease, it can become more bearable. It is not an easy road and there are many different directions one can travel. Your mother-in-law needs to choose the one that is best for her. She needs your support at this time.

I'm praying for her.
Take Care
Lily

Omy1
Posts: 1
Joined: Sep 2011

hi all
i have come to know about my mother cancer today
she is at stage 4 gallbladder cancer spread over to the liver
i dont know what to do
she is getting pale yellow every day her eyes and all
feels too much pain in urine and complete itching in the body

Dear all please tell me
i want to save her where to start from
i am from Pakistan but can go anywhere to cure her

please reply me the best surgeon and how much will it cost please

i am waiting and really very disturbed

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

Hello,

I'm so sorry that this disease has come into your mom and your lives. It is a very terrible disease. I too was diagnosed with GB Stage 4. I was inoperable. I completed 11 months of Gemzar/Cisiplatin, and then had surgery with an additional 3 months of chemo after. I had what is called am extended (or radical) cholecystectomy. Jaundice (yellowing of eyes and skin) is very common due to possible tumor blockage of the bile ducts. Itching is also one of the symptoms. I had my surgery at UCLA - CA - Dr. Howard Reber. Also Dr. David M Nagorney at the Mayo Clinic in Minnesota has successfully treated GBC patients. A surgeon that specializes in Hepatobiliary Surgery is the one you need to find. Also finding an oncologist that will walk on this journey with you both is essential. This is a very expensive disease. In order for you to have the best possible care you have to financially be able to withstand that burden. But no amount of money isn't enough in order to save your mothers life. This is a long journey that has many ups and downs but this disease can be beaten with Hope, Faith and Prayer. Hope this helps you.
I will be praying for your mom.
Take Care
Lily

Ginab1959
Posts: 5
Joined: Feb 2011

It's Gina I think you remember me. Hey I just want to say thank you for getting me through some pretty dark times. You are the best. Gina

Ginab1959
Posts: 5
Joined: Feb 2011

All My name is Gina and I was diagnosed in December 2011 quite by accident or as I say with God's guidence. I went over to Hershey Med Center to the ER as my lower pelvic area hurt and I was diagnosed with diverticulitus at the same time the doc in the ER asked to have a look at my gallbladder. The next day I received a call to come in for a consult. Several doctors looked at the pictures and after some discussion I agreed to surgery I woke up with a large incision down the length of my belly. The docs went back in again and took a third of my liver and 4 lymph nodes all of which came back negative it was stage II gallbladder cancer, it had one more layer to go before it would have been out. I was home for 3 days before I had to go back in for 17 days. The incision became inflamed causing my right lung to fill with fluid. At the same time the gallbladder drain had a staph infection in it and the pic line they installed in my left arm took on a blood clot then I acquired C-diff at the same time. After losing 24 lbs I went home. At that point I had read about microscopic residual cancer and opted for a chemo regiment for 6 mos gemzar and zeloda. The zeloda burned the soles of my feet really bad so bad they peeled in big sheets of skin. I finally had to have a port installed as the gemzar was to harsh on my veins causing big hot spots it really hurt my arm that it was going in believe me. What I'm saying here I hope I can be of help to any of you out there because this is really scary stuff and these are the times when you talk to God like you've never talked to him before to bad this is what it takes, oh well. Lean on me ask away I'll try and help anyway I can. YOU HAVE TO ADVOCATE FOR YOURSELVES SEARCH EVERY noOK AND CRANNY OF THE INTERNET AND EDUCATE YOURSELF IT'S THE SMARTEST THING YOU CAN DO, ASK QUESTIONS GET THAT SECOND OPINION I IMPLORE YOU. Thanks Gina

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

Of course I remember you! You are welcome! This disease has dark times and we all need to be there for each other. There is a light at the end of the tunnel; it is just that sometimes it doesn't shine too bright. Thanks for sharing with others what you have experienced. You are a fighter!

Hope you are doing well.

Take Care
Lily

luvmylily
Posts: 1
Joined: Sep 2011

A family member was to start the gem/cys chemo protocol, but her bile ducts are not viable. We did a CT and there are no dilated ducts to insert a stent. The doctor said she would consider another chemo protocol, but will likely recommend hospice. Does anyone know of another successful chemo protocol? I've also heard that you can have your scans sent to Sloan Kettering for another opinion for $300. Does anyone know about that.

Thank you and praying for your families.

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

Hello and welcome to our discussion board. I'm so sorry that a member of your family is facing this terrible disease. I'm lily and I'm a GBC Stage4 6 year survivor. There are options out there you just need to find them. Have you gotten a second, third or even fourth opinion? This is a disease that hasn't been given much attention and the statistics are dismal at best, but there are survivors out there that were also given very short time frames. We didn't accept what we were being told and kept searching for the doctor's and surgeons that would help us. You have to find the ones that are willing to stick their necks out for you if you want to fight this battle. Some of the chemo drugs that others have had include Xeloda, Capecitabine and Fluorouracil(5-FU). My chemo cocktail was Gemzar and Cisiplatin.

I know that some of the bigger cancer centers will do a consult for a set price. I know that the Mayo Clinic does that. Go on the Internet and research major cancer centers and start asking questions. I know that UCLA - CA and the Mayo Clinic - MN both have experience with gallbladder cancer. It is best to find doctors that have had prior experience with this disease. Many doctors have rarely seen it. Knowledge is power and you will have to invest the time to look for answers and keep asking questions. You have to be your own advocate or be someone’s advocate for this disease.

Hope and Faith will carry you through.
Take Care
Lily

JennaB11
Posts: 6
Joined: Oct 2011

Hi Lily50. I have read a lot of what you wrote. Your story is much like my father in laws. He is having chemo right now, he is in his second round of it. The Drs were going to do a surgery to help him eat but they could not do it, or it would do more damage. That's when they found out that the cancer had spread and is now stage 4. He had a blood clot in his lungs but that is being treated by medication and is doing well. Would you please give me your doctors contact information also? I'd really appreciate it. Thank you.

Take care of yourself,
Jenna

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

Hi Jenna,

Nice to meet you! Welcome to our discussion board. I'm so sorry this disease has come into your lives. Sounds like your father-in-law is just beginning treatment and this can be a very long journey. How old is he? Where is he located at? What is his chemo cocktail? There are other survivors out there beside myself. We are a small but strong group. We will help you in any way that we can.
Here is my doctor's information:
Oncologist
Cancer and Blood Specialists of Nevada
Russell Gollard, MD
58 N. Pecos Road
Henderson, Nevada 89074
702-822-2000
Green Valley Location

Surgeon
Howard Reber, MD
Specialty Surgery
Hospital Affiliation Ronald Reagan UCLA Medical Center
Contact (310) 825-4976
Email Address hreber@surgery.medsch.ucla.edu
He is assoicated with The Jonsson Comprehensive Cancer Center.
http://www.cancer.ucla.edu
Check out this website, it has lots of good information

Hope this helps you. Hope & Faith will carry you through.
Take Care
Lily

JennaB11
Posts: 6
Joined: Oct 2011

Hi Lily,
Thank you for the Dr information! He was diagnosed about 3 years ago. He had his gallbladder removed due to pain after eatting and then they found cancer on it. He did chemo and radiation together after that for a while. Then for a long time the Drs. could not find any cancer anywhere! It was amazing!!! It was all the prayers! For six weeks (beginning in July 2011) he was on and off going to the ER every few days for vomiting and having trouble eating. After tests and when they were about to do surgery, they found it was stage 4, causing a blockage in the intestines. They said its in the omen-tum tissue as well and 'everywhere'. So that's where we are at now. He is doing chemo the gemzar and cisplatin. Once a week he goes for the majority of the day. He is 65. I will share your Dr information with him. Maybe he can have his records sent to them instead of traveling since he's doing chemo now. We are in IL, Chicago. Thanks for responding so quickly!
take care,
Jenna

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

Hi Jenna,

You are welcome. He is a fighter that is for sure! I too believe in the power of prayer. I have heard of others that have had that issue. Westie66 is in the process of treatment for secondary peritoneum and omentum cancer, she was originally diagnosed with GBC Stage 4. There is another thread for omentum cancer that talks about different treatments, just type it in the search box and you will go right to it. You might want to look at that one also. Gemzar and Cisiplatin was my chemo cocktail also. The gemzar is really toxic. I'll also give you the name of a doctor in Minnesota that another GB Cancer Stage 4 patient used who was very good. He was located in Canada and received his treatment there but had his surgery done in MN.

David M Nagorney M.D.
Gastroenterologic and General Surgery
http://www.mayoclinic.org/bio/10263314.html
Mayo Clinic
200 1st Street South West
Rochester, MN 55905
800-533-1564
There is a clinical trial going on there currently. Maybe that could also be another option.
Let me know how things are going. I will add him to my prayer list.
Take Care
Lily

JennaB11
Posts: 6
Joined: Oct 2011

Thank you Lily for that Drs information. I'll look into that thread about the ometum, thank you. He had his first dose of this chemo cocktail on Monday and he feels fine from it he says. Thank goodness! He said it could be harder as time progresses, but I'm just focusing on the fact that he feels good right now. We cant worry about tomorrow. Thank you for adding him to your prayers, you are in mine as well for your continued recovery!
Have a great weekend,
Jenna

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

Hi Jenna: I am the westie 66 Lily mentioned. I just want to correct something - it is the peritoneum that gets "attacked" and the omentum is the fatty part of the peritoneum. I had my gallbladder removed with its tumour and part of the liver in April 2010. I had a 12 treatment regime of cisplatin/gemcitibine and didn't have any problems at all with it (I drove to and from the treatment centre) but everyone is different. That regime maybe stabilized the tumour growth on the peritoneum (I don't have any other cancers) - I have 6 nodules on the peritoneum and omentum. I have now completed treatment 11 of a new regime my oncologist is trying: oxaliplatin-irenotecan-5FU on pump for 42 hrs - treatment is every 2 weeks with 1 week off. The oncologist is very happy with my last scan as it isi showing no new growths and shrinkage in 1 or 2 nodules. My tumour in the gallbladder was at the liver end, not the bile duct end and that may have helped me a lot. My oncologist also wants me to have the peritoneum stripping procedure followed by HIPEC but there is only one place in Canada that does this - in Calgary and I'm in Ontario.
My gallbladder friend in western Canada is doing very well after his surgery at the Mayo and further chemo treatments in Canada. There is no evidence of cancer spread on him.
Good luck!
Cheryl

JennaB11
Posts: 6
Joined: Oct 2011

Hi everyone,
Has anyone know any information about the Chemo bath? We heard about it and thought maybe its an option for my father in law. Also we were looking into HIPEC treatment to. I don't know if it would be possible for him to have it. His cancer has now spread to the lungs a little bit, and he has the blockage in his intestines. The drs think it is scar tissue or cancer, but there is cancer over the intestines. Its in the omentum and in the prefenial lining. His primary cancer is the gallbladder though. Lily do you know anything about these treatments? He is doing chemo now,the gemzar and cisplatin combo.
Does anyone have any tips on gaining weight? He's losing so quickly from vomiting and diarrhea. He has an appetite but has to eat very small meals. He wants all types of foods, from ribs to hotdogs to milkshakes!! I think he eats some nutritional as well. Please let me know if you know anything about those treatments. Thank you!
Jenna

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

Hi Jenna: I was under the impression that chemo baths and the HIPEC procedure were the same thing but maybe not. In the latter, heated (or sometimes not) high dose chemicals (usually same ones he's getting already) are injected into the abdominal cavity through ports in the abdomen, swished around, and presumably drained out. This is repeated over several days and weeks. It is the actual contact of the chemicals directly onto the tumours that is the goal as the tumours on the peritoneum and omentum are not well connected to the body's blood system and hence to a regular IV type of chemotherapy. However, I am getting a different treatment through a regular IV - oxaliplatin + irenotecan + 5FU pump which is stabilizing and even shrinking some of the cancerous nodules on the peritoneum. My gallbladder and its tumour was cut out last April 2010.
I have the same problem gaining weight because of diarrhea on the folfoxfiri chemotherapy treatment (didn't have it on the cisplatin + gemcitibine treatment). I too crave things I shouldn't have like pizza and hamburgers and milkshakes so I eat them. But I also drink a lot of liquid meal replacement drinks too because to me they taste like milkshakes and have a lot of good things in them nutritionally. I go to the BRAT diet when the diarrhea is severe (white rice + apple sauce + white bread + bananas, i.e. NO FIBRE). I take lomotil for the diarrhea right at the beginning to control it. Imodium doesn't work for me. I take a lot of pills for nausea - they give me 4 before I start chemo, an injection during chemo, and pills for 3 days after chemo. So I don't get much nausea.
Not sure if this helps!
Cheryl

Monarch
Posts: 36
Joined: Oct 2011

Jenna,

I am sorry to hear about your father-in-law. Best wishes and prayers to all of you.

What stage was he originally classified as? Do you know what kind of chemo he had the first time around? Did he have any other surgery (liver resection, lymph nodes removed etc) after they found the gallbladder cancer? Did he have laproscopic surgery on the gallbladder?

Sorry for so many questions. We are just trying to make some decisions on my Mom's treatment and read your family's situation with interest

Again, my family's thoughts and prayers are with you. (And everyone on this board!)

Monarch

lourdes726's picture
lourdes726
Posts: 15
Joined: Apr 2010

Hi Monarch,

Sorry to hear about your mom's cancer, but so glad to hear she is well. I also was diagnosed with a T2 GB tumor 19 months ago. I too had a liver reection and was staged at T2 M0 N0 R0 stage 1b, however the staging has since changed in the newest edition of the manuals used to stage GB cancer and it is now called stage 2. I had 5fu and radiation for 6 weeks followed by xeloda. I couldn't tolerate the xeloda and I was changed to Gemzar for 4 months. I had a total of 6 months of chemo. This disease is so rare that it seems that doctors all give a different opionion. My surgeon and some others on the tumor board at UCLA recommended no chemo., but my oncologist a home and the doctors she consulted with recommended xeloda and then gemzar. I went to Dana Farber for a second opionion and they recommended gemzar/cisplatin. I chose to do xeloda and then gemzar only because my oncologist at home didn't feel that at my stage I needed to add the cisplatin. She consulted with several other doctors as well. I know of another women diagnosed with a t2 tumor and she did have gemzar/cisplatin and did well. I also know another lady that ony had 6 weeks of radiation and xeloda, and that is all doctors recommended. It is a hard call to make as there is little research to prove what works best on GB cancer that is used for an extra measure of insurance. My doctor explained that gemzar/cisplatin has shown some good results on advanced GB cancer, but that does not mean that it works the same on someone that does not have active disease. This cancer needs more research and more people that have survived posting what treatment they have. Good luck to your mom.
Lourdes

Monarch
Posts: 36
Joined: Oct 2011

Thank you so much for your reply, Lourdes. My thoughts and prayers are with you.

What side effects did you experience from the gemzar? Did you have it one day every other week? How long did the infusion take? (I know that this info can vary by patient but am just trying to get some sort of level set for mom. We have not discussed the specific details with the doc as Mom is opting to wait until January for the next course of chemo.)

The oncologist actually recommended gem/ox...but would also be happy if she would agree to gem/cis. He has not mention gem alone. It seems that ox has been doing wonders for colon cancer patients but there seem to be some extreme side effects from it - and precautions needed during treatment with it.

We are not sure that Mom will be able to tolerate either of the protocols as she developed afib while on the 5FU and a blood clot in her leg shortly after treatment ended. But, she is willing to give it a go and do all that she can.

You are so right when you say that more research is needed. And, they need to start documenting the cases where it is used for an extra measure of insurance. I've heard "they just don't have current statistics and there's no ongoing reporting database for GB cancer" so many times that I just want to jump up and down and scream until someone does start following it.

Again, my family is sending you positive thoughts and prayers. We wish you continued success and health in your journey.

Monarch

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

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