Gallbladder Cancer - 2013 (Any Stage)

Ja59

Kristal Reis said:

Dad has stage 4 gall bladder cancer - PLEASE HELP need advice

My dad is stage 4 gall bladder / bile duct cancer.  He was diagnosed about 3 months about.  He did 9 weeks if Gemzar and Cisplain (once a week for two weeks and then third week off)  The cancer did shrink a little bit so they said it is working and will continue same regimen.  

Does anyone have success stories they can share with me?  Specifically, what kind of treatment or natural hollistic care worked or what doctors do they recommend?  We live in Massachusetts but are willing to travel anywhere in the world.  

Thank you for your advice.

Kristal

Dad has stage 4 gallbladder cancer

Hi Christal,

Sorry to learn about your father. For some reason nobody replied to you.....

Personally I only believe in Biotherapy or immunotherapy, but it is still experimental. So, no survivors as such... There are clinical trials in the US. I had this treatment in China. They are very advanced in cancer therapy in general, though some hospital's wards conditions are not the best. But it did not matter to me, as I wanted to live. It is 4 months since I finished the treatment, so early days. 

Cheers Ja

Draginlady

Lily......I am so happy that

Lily......I am so happy that you have been blessed with 7 more wonderful years of life.  I too am a gallbladder cancer survivor...one year this month.  Last April I ate a whole pizza by myself which kicked up my gallbladder which sent me to the ER two days later.  My gallbladder was full of cancer and I never would have discovered it if not for the pizza.  They removed my gallbladder April 17th and June 26th I had 1/3 of my liver removed and 8 lymph nodes.  Two of my lymph nodes had cancer in them making me stage 3b. I started chemotherapy in August last year....finishing in February and have had cat scans every 3 months since then.  I can now go 6 months without a scan.  Having stage 4 gallbladder cancer you are aware that our odds of making it 5 years are very very low.  We both beat the odds.  Reading your story has given me reassurance and I thank you for stopping in and posting it.  I wish you peace and happiness.

Draginlady

Kristal Reis said:

Dad has stage 4 gall bladder cancer - PLEASE HELP need advice

My dad is stage 4 gall bladder / bile duct cancer.  He was diagnosed about 3 months about.  He did 9 weeks if Gemzar and Cisplain (once a week for two weeks and then third week off)  The cancer did shrink a little bit so they said it is working and will continue same regimen.  

Does anyone have success stories they can share with me?  Specifically, what kind of treatment or natural hollistic care worked or what doctors do they recommend?  We live in Massachusetts but are willing to travel anywhere in the world.  

Thank you for your advice.

Kristal

Kristal....I was diagnosed

Kristal....I was diagnosed with stage 3b gallbladder cancer last April and had my gallbladder removed.  June I had 1/3 of my liver and 8 lymph nodes removed....2 of my lymph nodes had cancer in them but my liver was clear.  I had the same drugs and regiment that your Dad had starting in August 2012 finishing in February of this year. There is a United Kingdom gallbladder study programe you can google and they are also using the same two drugs.  I am now one year cancer free and my Doctors say breaking records every day.  Having no insurance I decided to remain in Ft. Myers, Florida for my treatment.  My surgery was done by Dr. Kowalski and my Oncologist is Dr. Rodrigues at the Florida Cancer Center right here in Ft. Myers.  I couldn't be happier with the care I have received this past year and owe my life to both of these Doctors.  Cancer Centers of America have some very advanced medicine for rare and advanced cancer.  I couldn't go there but perhaps your Dad's insurance would be accepted there.....check them out.  Good luck and tell him a posative attitude is the best medicine....think healthy and you will be healthy.  Statistics do not define us!

Jan

Jean160

Draginlady said:

Lily......I am so happy that

Lily......I am so happy that you have been blessed with 7 more wonderful years of life.  I too am a gallbladder cancer survivor...one year this month.  Last April I ate a whole pizza by myself which kicked up my gallbladder which sent me to the ER two days later.  My gallbladder was full of cancer and I never would have discovered it if not for the pizza.  They removed my gallbladder April 17th and June 26th I had 1/3 of my liver removed and 8 lymph nodes.  Two of my lymph nodes had cancer in them making me stage 3b. I started chemotherapy in August last year....finishing in February and have had cat scans every 3 months since then.  I can now go 6 months without a scan.  Having stage 4 gallbladder cancer you are aware that our odds of making it 5 years are very very low.  We both beat the odds.  Reading your story has given me reassurance and I thank you for stopping in and posting it.  I wish you peace and happiness.

Good scan results!

Just thought I would check in with everyone.  I am happy for the recent good news from several of you regarding your recent check ups and good results!

Just got my latest scan results for follow up from gb cancer:  which showed a stable MRI without evidence of recurrance.  Now I am 2 ½ years from original diagnosis and follow up surgery and 2 years after completion of chemotherapy (cisplat and gemcitebine).  Whoo Hoo.......  scanxiety  over for the time being.  Whew.  Now to get back to life again!

 Keep strong;  keep the faith...  Jean

preethiafc

Jean160 said:

Good scan results!

Just thought I would check in with everyone.  I am happy for the recent good news from several of you regarding your recent check ups and good results!

Just got my latest scan results for follow up from gb cancer:  which showed a stable MRI without evidence of recurrance.  Now I am 2 ½ years from original diagnosis and follow up surgery and 2 years after completion of chemotherapy (cisplat and gemcitebine).  Whoo Hoo.......  scanxiety  over for the time being.  Whew.  Now to get back to life again!

 Keep strong;  keep the faith...  Jean

Is fever a dangerous sign?

Hi All,

My mom was diagnosed with GBC on May 1st and she is undergoing immunotherapy and avastin for the past 2 months. But for last 3 days she is having fever. I am really worried about this and wanted to know what needs to be done next. Yesterday we went to meet our oncologist they have given her some antibiotic and multivitamins.Inspite of this she still has fever. Can anyone please guide me ?

Thanks,
preethi

Comsalee

preethiafc said:

Is fever a dangerous sign?

Hi All,

My mom was diagnosed with GBC on May 1st and she is undergoing immunotherapy and avastin for the past 2 months. But for last 3 days she is having fever. I am really worried about this and wanted to know what needs to be done next. Yesterday we went to meet our oncologist they have given her some antibiotic and multivitamins.Inspite of this she still has fever. Can anyone please guide me ?

Thanks,
preethi

Checking in with Everyone

Hello Everyone!

It has been 6 long months since I last posted here.  As you might recall, my cancer was an incidental discovery after my gallbladder was removed laproscopically in February.  On March 15th I underwent a liver resection at the Oregon Health Science University in Portland, Oregon, after which my cancer as diagnosed as T2N1, or Stage 3B -- my liver and bile duct were cancer-free, but it had gotten into 2 of the 8 lymph nodes removed.  My oncologist presecribed a treatment plan based on a clinical trial that ended in October 2012 (SO809), which called for 12 weeks of Gemcitibine/Gemzar (weekly IV infusion of 1800 mgs) and 2500 mgs daily of Capecitabine/Xeloda, with 2 weeks on, 1 week off.  This was to be followed by 4-6 weeks of 180cGy 5/days a week dose of IMRT (Intensity Modulated Radiation Therapy), with concurrent consumption of the Xeloda pills (with no breaks).  This treatment began in early May, after I had healed up sufficiently from the surgery. My body could not withstand 2500 mgs of Xeloda, and it was reduced to 2000, and then again to 1500, where I was able to finish up with my last chemo treatment on July 17th.  On July 31st I began the next phase, and underwent 28 treatments of radiation, along with the daily Xeloda pills,  finishing up on September 9th.  It was an aggressive treatment plan -- for an aggressive cancer -- and I feel like I have done everything I could do to deal with it head on.  Throughout this entire journey, I have been blessed to have the love, encouragement and support from every corner and era of my life -- which has helped me to maintain a positive attitude and fighting spirit!  Mynext appointment is on December 2nd, when I will be scanned to verify that my cancer has NOT COME BACK. 

Stay strong, all!  Please keep me in your prayers, each of you will certainly be in mine.   

Maureen

   

LucyDoodle

Comsalee said:

Checking in with Everyone

Hello Everyone!

It has been 6 long months since I last posted here.  As you might recall, my cancer was an incidental discovery after my gallbladder was removed laproscopically in February.  On March 15th I underwent a liver resection at the Oregon Health Science University in Portland, Oregon, after which my cancer as diagnosed as T2N1, or Stage 3B -- my liver and bile duct were cancer-free, but it had gotten into 2 of the 8 lymph nodes removed.  My oncologist presecribed a treatment plan based on a clinical trial that ended in October 2012 (SO809), which called for 12 weeks of Gemcitibine/Gemzar (weekly IV infusion of 1800 mgs) and 2500 mgs daily of Capecitabine/Xeloda, with 2 weeks on, 1 week off.  This was to be followed by 4-6 weeks of 180cGy 5/days a week dose of IMRT (Intensity Modulated Radiation Therapy), with concurrent consumption of the Xeloda pills (with no breaks).  This treatment began in early May, after I had healed up sufficiently from the surgery. My body could not withstand 2500 mgs of Xeloda, and it was reduced to 2000, and then again to 1500, where I was able to finish up with my last chemo treatment on July 17th.  On July 31st I began the next phase, and underwent 28 treatments of radiation, along with the daily Xeloda pills,  finishing up on September 9th.  It was an aggressive treatment plan -- for an aggressive cancer -- and I feel like I have done everything I could do to deal with it head on.  Throughout this entire journey, I have been blessed to have the love, encouragement and support from every corner and era of my life -- which has helped me to maintain a positive attitude and fighting spirit!  Mynext appointment is on December 2nd, when I will be scanned to verify that my cancer has NOT COME BACK. 

Stay strong, all!  Please keep me in your prayers, each of you will certainly be in mine.   

Maureen

   

Checking in

It's good to see so many positive posts. Maureen you are in my prayers! Jean and Draginlady Woo-Hoo, it's good to hear of good scan results

Steve (my husband ) has recovered well from his surgery and is pretty unstoppable really!!

Francis, you posted in August asking questions, Steve's chemo regime was gemzar (like your Mum) and also Cisplatin. His doses were based on his weight. We read Anti Cancer a new way of life by David Servan-Schreiber and incorporated some of his diet advice into all of our diets. It's not a cranky diet just good food, it's well worth a read! If nothing else I think the change in diet helped Steve stay healthy through 20 months of chemo!

Kristal, your Dad is on the same regime as Steve had. We saw only tiny improvements to start with but over time the chemo did such a great job Steve was able to have surgery which was not possible when he was first diagnosed (they tried but the cancer was too wide spread - gallbladder, bile ducts, liver and nodes on his diaphram). He stayed on that same regime for 20 months!

There are lots of recommendations for great hospitals on this thread. We went to Johns Hopkins in Baltimore. Steve has a fantastic team there both oncologist and surgeon. He had his chemo locally and our local oncologist worked with JHs.

Steve stayed active throughout, and he took up yoga which he found helpful to quieten his mind (as did I)

Like so many others we were told Steve's prognosis was horrible around 8 - 12 months. Two years later he is still here and doing well.

Eating well, staying active and most importantly staying positive will all help in the fight against this horrible cancer. That and finding Doctors you have faith in.

Debbie

 

cherleger

Stage 4 Gallbladder Cancer

Hi,

My name is Cheryl and this is my first time on this site.  I was diagnosed with gallbladder cancer on September 9, 2013.  Here is my story:

I live in Massachusetts.  I'm 38 years old and I've been married to my wonderful husband, Mark, for almost 8 1/2 years.  We have 2 beautiful boys.  They are 5 and 7 years old.  

About 10 years ago, I had an internal ultra sound because of kidney stones.  The tech told me that my gallbladder was full of stones.  Since they never bothered me, nothing was ever done.  In December 2011, I had gastric bypass surgery.  I lost about 120 lbs in less than a year.  Since rapid weight loss can cause gallbladder issues, I wasn't surprised when I had an attack on November 20, 2012.  I went to my local ER.  They did a CT with dye and sent me home with pain meds.  I met with my primary care doctor and was told it was my gallbladder.  The said there was a chance this was a one time issue and that if it recurred, we would discuss removal of the gallbladder then.  

On August 31, 2013, I woke up at 1am with that familiar pain.  I went to my local ER again and told them I was having a gallbladder attack.  They gave me pain meds and sent me home.  The pain meds did not help, so I went back to the ER at 4:30pm.  This time they did an ultra sound and determined that my gallbladder was infected and possibly rupturing.  They admitted me and I had emergency surgery the next morning.  

I had a follow up appointment on Septmeber 9, 2013, and this is when I was told about the tumor in my gallbladder.  There were also 2 lymph nodes that came out with the gallbladder and they were cancerous.  I was diagnosed with stage 3 gallbladder cancer and was referred to a medical and surgical oncologist at this time.  I met with both and was sent for a PET scan.  

They did not see anything on the PET so I was scheduled for surgery.  On September 23, 2013, I had surgery to remove lymph nodes and 10% of my liver.  They also ended up having to fix my bile duct and remove a small hernia that I didn't know I had.  When pathology came back, 2 of the 4 specimins had cancer.  There were more cancerous lymph nodes and they found cancerous nodules in my liver.  I was then referred to a medical oncologist at Dana Farber Cancer Institue in Boston.  

I met with a gastrointestinal medical oncologist October 16, 2013.  She explained that my cancer is stage 4 and is not considered curable.  They recommend chemo (Gemzar & Platinol).  They said I will go through a 3 week cycle (1x week one, 1xweek 2, and week 3 off).  They said I will most likely have 3 of these cycles.  Then a scan after the 9 weeks to see if its helping.  I was also told at this appointment that the tumor is visable on the CT with dye from November 2012.  I can't believe that I was never told about this and I am sooo angry!!!  I can't help but wonder if we could have caught this at stage 1 back then.  

That brings us to today (October 13, 2013).  I have not started chemo because they want me fully healed from my surgery.  They are thinking the beginning to middle of November.  So, right now I feel like I'm stuck in limbo.  I find myself crying A LOT!  Everything that happens with my husband or boys, I can't help but wonder if its the last time I'll experience that.  My family and friends have been so supportive, especially my husband.  He is my biggest supporter and he pulls me out of every melt down!  He doesn't care what the doctors say and he's convinced that chemo will kill this!  I wish I could be so sure!  I am trying to stay positive but I am so scared!  

I know that I have just started this long and hard journey...I guess I'm just looking to connect with other people like me.  I'm looking for HOPE that even against all odds, people are beating this disease.  I'm hoping that I can beat this disease too!!!!  

Thanks for listening!

Cheryl 

Ja59

cherleger said:

Stage 4 Gallbladder Cancer

Hi,

My name is Cheryl and this is my first time on this site.  I was diagnosed with gallbladder cancer on September 9, 2013.  Here is my story:

I live in Massachusetts.  I'm 38 years old and I've been married to my wonderful husband, Mark, for almost 8 1/2 years.  We have 2 beautiful boys.  They are 5 and 7 years old.  

About 10 years ago, I had an internal ultra sound because of kidney stones.  The tech told me that my gallbladder was full of stones.  Since they never bothered me, nothing was ever done.  In December 2011, I had gastric bypass surgery.  I lost about 120 lbs in less than a year.  Since rapid weight loss can cause gallbladder issues, I wasn't surprised when I had an attack on November 20, 2012.  I went to my local ER.  They did a CT with dye and sent me home with pain meds.  I met with my primary care doctor and was told it was my gallbladder.  The said there was a chance this was a one time issue and that if it recurred, we would discuss removal of the gallbladder then.  

On August 31, 2013, I woke up at 1am with that familiar pain.  I went to my local ER again and told them I was having a gallbladder attack.  They gave me pain meds and sent me home.  The pain meds did not help, so I went back to the ER at 4:30pm.  This time they did an ultra sound and determined that my gallbladder was infected and possibly rupturing.  They admitted me and I had emergency surgery the next morning.  

I had a follow up appointment on Septmeber 9, 2013, and this is when I was told about the tumor in my gallbladder.  There were also 2 lymph nodes that came out with the gallbladder and they were cancerous.  I was diagnosed with stage 3 gallbladder cancer and was referred to a medical and surgical oncologist at this time.  I met with both and was sent for a PET scan.  

They did not see anything on the PET so I was scheduled for surgery.  On September 23, 2013, I had surgery to remove lymph nodes and 10% of my liver.  They also ended up having to fix my bile duct and remove a small hernia that I didn't know I had.  When pathology came back, 2 of the 4 specimins had cancer.  There were more cancerous lymph nodes and they found cancerous nodules in my liver.  I was then referred to a medical oncologist at Dana Farber Cancer Institue in Boston.  

I met with a gastrointestinal medical oncologist October 16, 2013.  She explained that my cancer is stage 4 and is not considered curable.  They recommend chemo (Gemzar & Platinol).  They said I will go through a 3 week cycle (1x week one, 1xweek 2, and week 3 off).  They said I will most likely have 3 of these cycles.  Then a scan after the 9 weeks to see if its helping.  I was also told at this appointment that the tumor is visable on the CT with dye from November 2012.  I can't believe that I was never told about this and I am sooo angry!!!  I can't help but wonder if we could have caught this at stage 1 back then.  

That brings us to today (October 13, 2013).  I have not started chemo because they want me fully healed from my surgery.  They are thinking the beginning to middle of November.  So, right now I feel like I'm stuck in limbo.  I find myself crying A LOT!  Everything that happens with my husband or boys, I can't help but wonder if its the last time I'll experience that.  My family and friends have been so supportive, especially my husband.  He is my biggest supporter and he pulls me out of every melt down!  He doesn't care what the doctors say and he's convinced that chemo will kill this!  I wish I could be so sure!  I am trying to stay positive but I am so scared!  

I know that I have just started this long and hard journey...I guess I'm just looking to connect with other people like me.  I'm looking for HOPE that even against all odds, people are beating this disease.  I'm hoping that I can beat this disease too!!!!  

Thanks for listening!

Cheryl 

Hi Cheryl, please do not cry

I have a story similar to yours. Though I am 57 years old and my son is 34 now. I also was diagnosed with stage 4 GBC in December last year. I do not know if chemotherapy can cure the disease, though it does work. There is another treatment, which combines chemotherapy with immunotherapy. Chemotherapy works on large masses oF tumor, but does not work well on small seeds of it. While immunotherapy, namely CTL- cytotocsic T- lymphocytes, kills micrometastasis by stimulating patient's immune system. This is a very promising treatment and there are a few clinical trials in the US. I had to go to China to get it, as we do not have it in Australia. Treatment is easy, no side effects apart from heavy sweats-tumor lysis syndrom. In China they call it ACTL, as they use adenovirus to modify monocytes into killer cells. I had it in December-April this year and feel very good. I did not have chemotherapy, as I did not have big masses left in my body. I did not even have liver resection, only biopsy, which showed tumor cells in the liver. You can read about it on http://www.asiancancer.com/technology-equipment/2619.html or on many American websites. Do not give up, there is cure now. 

Love Ja

cherleger

Ja59 said:

Hi Cheryl, please do not cry

I have a story similar to yours. Though I am 57 years old and my son is 34 now. I also was diagnosed with stage 4 GBC in December last year. I do not know if chemotherapy can cure the disease, though it does work. There is another treatment, which combines chemotherapy with immunotherapy. Chemotherapy works on large masses oF tumor, but does not work well on small seeds of it. While immunotherapy, namely CTL- cytotocsic T- lymphocytes, kills micrometastasis by stimulating patient's immune system. This is a very promising treatment and there are a few clinical trials in the US. I had to go to China to get it, as we do not have it in Australia. Treatment is easy, no side effects apart from heavy sweats-tumor lysis syndrom. In China they call it ACTL, as they use adenovirus to modify monocytes into killer cells. I had it in December-April this year and feel very good. I did not have chemotherapy, as I did not have big masses left in my body. I did not even have liver resection, only biopsy, which showed tumor cells in the liver. You can read about it on http://www.asiancancer.com/technology-equipment/2619.html or on many American websites. Do not give up, there is cure now. 

Love Ja

Ja,
Thank you so much for

Ja,

Thank you so much for sharing your story and this information with me...I truly appreciate it!!!  I will most definitely read up on this treatment and discuss with my doctors.  I still cry occasionally but have kind of moved on to anger now, kind of like the stages of grief.  I am ready to fight this and will do or try anything.  I'm not ready to leave my family.  As a parent, I'm sure you can relate.  

Its really nice to talk with someone that is going through the same thing.  My family and friends are always here for me and they have been AMAZING but sometimes I feel so alone, like no one understands me.  

I hope you are feeling well and continue to have success with your treatments.  

Love Cheryl

Jean160

cherleger said:

Ja,
Thank you so much for

Ja,

Thank you so much for sharing your story and this information with me...I truly appreciate it!!!  I will most definitely read up on this treatment and discuss with my doctors.  I still cry occasionally but have kind of moved on to anger now, kind of like the stages of grief.  I am ready to fight this and will do or try anything.  I'm not ready to leave my family.  As a parent, I'm sure you can relate.  

Its really nice to talk with someone that is going through the same thing.  My family and friends are always here for me and they have been AMAZING but sometimes I feel so alone, like no one understands me.  

I hope you are feeling well and continue to have success with your treatments.  

Love Cheryl

Gallbladder cancer; fighting the fight

Hi Cheryl

I am sorry to hear you have to go through this.  This little community of survivors on this site has been a big help to me when I was going through chemotherapy for gallbladder cancer.  I did not run into anyone else with this type of cancer at the infusion center.  The problem is that just reading statistics is not encouraging because there are no prospective studies on gallbladder cancer.  But through these stories you will see other survivors:  people who have had surgery, chemotherapy, immunotherapy and who are still going strong.  I’m sure this has been such a huge shock to you.  You are young and healthy and that will be in your favor.  You have supportive family and that too will be in your favor.  I know when I first read all that discouraging statistical stuff, I was just hoping to live a couple years.  But I now am going on 3 years and my latest scan shows no evidence of recurrence.   So who knows......  ?   I feel well and I went back to work, planning vacations with my family and enjoying life.   Hang in there,   none of this is fun, but you are a fighter and will come out strong.  Keep the faith.   I will keep you in my thoughts and prayers.

Jean

Erinp

My Dad

Hi Everyone,

i have monitored this thread to a while now and thought I'd share my dad's story.

He was diagnosed about 4 months ago. He was experiencing pain, vomiting etc and went off to the doctor.

A CT scan revealled a mass which was then biopsied and localised, advanced gall bladder cancer was the diagnosis. He contracted pancreatitis from the biospy, which really took a huge blow- extreme weightloss and illness.

The cancer was said to be incurable and he was referred to an oncologist. He started Gemzar/ Cisplatin regime and after 9 weeks the 8 by 5 cm tumor was immeasurable. 

This is lead him to be referred back to the surgeon whobas suggested continue chemo and perhaps discuss surgery after this next round. She said there is now a question as to whether this cancer is curable, which is exciting. 

She he also said how invasive the surgery (which would be gb and liver resection) is. What are others experiences with this surgery? 

Id love to hear any stories, particularly those in Australia, similar or of some help to Dad's? 

 

Erin

LucyDoodle

Erinp said:

My Dad

Hi Everyone,

i have monitored this thread to a while now and thought I'd share my dad's story.

He was diagnosed about 4 months ago. He was experiencing pain, vomiting etc and went off to the doctor.

A CT scan revealled a mass which was then biopsied and localised, advanced gall bladder cancer was the diagnosis. He contracted pancreatitis from the biospy, which really took a huge blow- extreme weightloss and illness.

The cancer was said to be incurable and he was referred to an oncologist. He started Gemzar/ Cisplatin regime and after 9 weeks the 8 by 5 cm tumor was immeasurable. 

This is lead him to be referred back to the surgeon whobas suggested continue chemo and perhaps discuss surgery after this next round. She said there is now a question as to whether this cancer is curable, which is exciting. 

She he also said how invasive the surgery (which would be gb and liver resection) is. What are others experiences with this surgery? 

Id love to hear any stories, particularly those in Australia, similar or of some help to Dad's? 

 

Erin

An update and a question

Hi All,

Steve had his 8 month post op scan yesterday which looked good. His Ca19-9 has gone up a bit (it was 36 and is now 59) so that is going to be repeated in 1-2 months. It felt like a mixed result, great because the scan was good but a little scary that the marker had climbed a bit.

My question is this, Steve had his surgery in March - the normal liver resection, gallbladder removal, bile ducts removed etc. He has done really well but in the last few weeks he has had a few episodes of stomach pains, with nausea and a feeling of lots of acid in his stomach, I think he is getting a bit of reflux too. It seems to come on in the evening and night. We mentioned it to the oncologist yesterday was going to talk to the surgeeon. We have an appointment with him in about 10 days anyway. Our lovely oncologist said in the mean time if it becomes more severe or more of a problem to call him.

Finally the question......Has anyone else experienced anything like this post surgery?

i also have to share one little story with you, When Steve was diagnosed in May 2011 we were given the awful 8 month prognosis. Last week our son who is now a senior in High School crept up behind me, gave me a hug and said in a whisper "Dad is going to see me graduate isn't he, I never thought he'd be there".  I keep reminding myself how blessed we have been even if the fight is not yet over!

cherleger

Jean160 said:

Gallbladder cancer; fighting the fight

Hi Cheryl

I am sorry to hear you have to go through this.  This little community of survivors on this site has been a big help to me when I was going through chemotherapy for gallbladder cancer.  I did not run into anyone else with this type of cancer at the infusion center.  The problem is that just reading statistics is not encouraging because there are no prospective studies on gallbladder cancer.  But through these stories you will see other survivors:  people who have had surgery, chemotherapy, immunotherapy and who are still going strong.  I’m sure this has been such a huge shock to you.  You are young and healthy and that will be in your favor.  You have supportive family and that too will be in your favor.  I know when I first read all that discouraging statistical stuff, I was just hoping to live a couple years.  But I now am going on 3 years and my latest scan shows no evidence of recurrence.   So who knows......  ?   I feel well and I went back to work, planning vacations with my family and enjoying life.   Hang in there,   none of this is fun, but you are a fighter and will come out strong.  Keep the faith.   I will keep you in my thoughts and prayers.

Jean

Thank you so much for sharing

Thank you so much for sharing Jean!  I had my first chemo treatment on 11/6/13.  I was very queasy the next day but other than that, I had very little side affects.  We went back for my second treatment on 11/13 but my white blood cell count was too low.  They decided to give me another week off and then we'll try again with a lower dose.  This actually worked in my favor because now I don't have chemo the day before Thanksgiving...yay, I get to eat turkey!    

You are right, this has been a HUGE shock and the statistics online are horrible.  My oncologist gave me a few months to maybe 2-3 years.  My husband and I have decided that we don't care about those statistics.  We are just going to fight, fight fight!!  

I am so happy to hear that you are feeling well and your scans have been good...that is amazing!!  I hope that I will be able to say that sometime soon!!!  You are also in my thoughts and prayers!!  

Love

Cheryl 

LucyDoodle

LucyDoodle said:

An update and a question

Hi All,

Steve had his 8 month post op scan yesterday which looked good. His Ca19-9 has gone up a bit (it was 36 and is now 59) so that is going to be repeated in 1-2 months. It felt like a mixed result, great because the scan was good but a little scary that the marker had climbed a bit.

My question is this, Steve had his surgery in March - the normal liver resection, gallbladder removal, bile ducts removed etc. He has done really well but in the last few weeks he has had a few episodes of stomach pains, with nausea and a feeling of lots of acid in his stomach, I think he is getting a bit of reflux too. It seems to come on in the evening and night. We mentioned it to the oncologist yesterday was going to talk to the surgeeon. We have an appointment with him in about 10 days anyway. Our lovely oncologist said in the mean time if it becomes more severe or more of a problem to call him.

Finally the question......Has anyone else experienced anything like this post surgery?

i also have to share one little story with you, When Steve was diagnosed in May 2011 we were given the awful 8 month prognosis. Last week our son who is now a senior in High School crept up behind me, gave me a hug and said in a whisper "Dad is going to see me graduate isn't he, I never thought he'd be there".  I keep reminding myself how blessed we have been even if the fight is not yet over!

Erin's Dad

Hi Erin,

That is exciting news about your Dad! My husband had surgery after 20 months of chemo, the surgeon took a bit of persuading given that he had already tried to remove the cancer when Steve was first diagnosed but the spread was too much. Between us and oncologist we wore him down  though it took about three months and a PET scan before he agreed to have another look.

Steve had a roux-en-y hepaticojejunostomy (they took part of his liver, biles ducts and gallbladder and then fashioned new bile ducts) they also remove the lymp nodes in the area   The surgery takes a while to recover from and they may well want to do more chemo afterwards.

So keep badgering the surgeon, if you read Lilly's story you will hear much the same!

Debbie

 

 

LucyDoodle

LucyDoodle said:

An update and a question

Hi All,

Steve had his 8 month post op scan yesterday which looked good. His Ca19-9 has gone up a bit (it was 36 and is now 59) so that is going to be repeated in 1-2 months. It felt like a mixed result, great because the scan was good but a little scary that the marker had climbed a bit.

My question is this, Steve had his surgery in March - the normal liver resection, gallbladder removal, bile ducts removed etc. He has done really well but in the last few weeks he has had a few episodes of stomach pains, with nausea and a feeling of lots of acid in his stomach, I think he is getting a bit of reflux too. It seems to come on in the evening and night. We mentioned it to the oncologist yesterday was going to talk to the surgeeon. We have an appointment with him in about 10 days anyway. Our lovely oncologist said in the mean time if it becomes more severe or more of a problem to call him.

Finally the question......Has anyone else experienced anything like this post surgery?

i also have to share one little story with you, When Steve was diagnosed in May 2011 we were given the awful 8 month prognosis. Last week our son who is now a senior in High School crept up behind me, gave me a hug and said in a whisper "Dad is going to see me graduate isn't he, I never thought he'd be there".  I keep reminding myself how blessed we have been even if the fight is not yet over!

Cheryl

Hi Cheryl 

I am sorry you have to be here but wanted to say hello and reinforce what Jean said. The online stuff is horrid. The best thing I found was this forum!

We were told Steve might have 8 months at our local hospital where the cancer was found ( he was 44). I got mad at that point and we went and got some second opinions. We settled on Johns Hopkins because the surgeon there was prepared to have a go at surgery and we liked him and equally importantly the oncologist we saw was wonderful. He didn't view Steve as a stasitic but as an individual.

That was in May 2011 and Steve is still here. The first attempt at surgery was not possible as the cancer was too invasive but a lot of chemo later the surgeon had another go and this time was successful in removing the tumor. We are not out of the woods yet but Steve is still here two and a half years later!

Has any one talked to you about having assays done ( it's through a blood test). It can help identify which chemo therapy might best target your tumor. Steve had it done and as it happened the combination he was on was the one which showed up as most effective. It's not a 100% correct but as our oncologist said it helps point them in a direction they not have considered. You hear the term personalized treatment and this is often what they mean.

Enjoy your turkey

Debbie

 

 

 

 

lamuse

Erinp said:

My Dad

Hi Everyone,

i have monitored this thread to a while now and thought I'd share my dad's story.

He was diagnosed about 4 months ago. He was experiencing pain, vomiting etc and went off to the doctor.

A CT scan revealled a mass which was then biopsied and localised, advanced gall bladder cancer was the diagnosis. He contracted pancreatitis from the biospy, which really took a huge blow- extreme weightloss and illness.

The cancer was said to be incurable and he was referred to an oncologist. He started Gemzar/ Cisplatin regime and after 9 weeks the 8 by 5 cm tumor was immeasurable. 

This is lead him to be referred back to the surgeon whobas suggested continue chemo and perhaps discuss surgery after this next round. She said there is now a question as to whether this cancer is curable, which is exciting. 

She he also said how invasive the surgery (which would be gb and liver resection) is. What are others experiences with this surgery? 

Id love to hear any stories, particularly those in Australia, similar or of some help to Dad's? 

 

Erin

From gallbladder to cervix

Hi,

I'm new on here--glad to find a forum on gallbladder cancer! I was diagnosed with 4th stage gallbladder cancer April 2013. I've never experienced any pain from the cancer, never had any problems with my gall bladder.  The cancer was originally found due to vaginal spotting, which led to an ultra sound and the discovery of a 5cm tumor in my cervix (and an orignial miss-diagnosis of cervical cancer). A CT scan would later reveal a 3cm tumor in my gallbladder and a 1.5 cm in my liver and a 9mm one in my back lymphnodes. Once this was all discovered I was told to stop working (I'm a teacher) and immediately began 9 3-week cycles of Gemzar/Cisplatin. I am 55 and quite healthy, not over weight, exercise regulary, and eat fairly healthy. The side affects from the chemo were minimal for me. (I continued to hike 6-10 miles a week, yoga twice weekly, etc.) After 6 cycles my PET scan came back clean, no sign of cancer--tumors gone--or less than a cm as was explained to me. My tumor markers are still slightly high: CA-19=142 and CEA=6.0 after finishing the 9 cycles. 

My oncologist is not suggesting surgery. As we've discussed--what do you start removing? When do you stop? Since it is already 4th stage, my understanding is a new tumor could show up anywhere, right? My gynacological oncologist wants to do a hysterectomy, and will be doing another biopsy before we discuss this further. 

From reading all the posts on here there seems to be a push for surgery. When I talk to a surgeon, they want to do surgery--but then that's their job. As the chemo is working for me, I'm wondering why I would opt to have surgery. I'm quite confused about this. It seems that your dad, Erin, is having a similar experience. 

I'm also curious to know if anyone else has had it spread to their cervix? (no, not your dad, Erin!)

I have also been diagnosed as pre-cancerous in my colon. My next colonoscopy in February will determine if the chemo has affected this. My gastroenterologist doesn't seem to think so, but then none of my doctors thought I'd have a clean scan after only 3 months of chemo. We'll see......

I'll be having my next scan soon and will be starting on a maintanence chemo program. 

Laurel

Ja59

lamuse said:

From gallbladder to cervix

Hi,

I'm new on here--glad to find a forum on gallbladder cancer! I was diagnosed with 4th stage gallbladder cancer April 2013. I've never experienced any pain from the cancer, never had any problems with my gall bladder.  The cancer was originally found due to vaginal spotting, which led to an ultra sound and the discovery of a 5cm tumor in my cervix (and an orignial miss-diagnosis of cervical cancer). A CT scan would later reveal a 3cm tumor in my gallbladder and a 1.5 cm in my liver and a 9mm one in my back lymphnodes. Once this was all discovered I was told to stop working (I'm a teacher) and immediately began 9 3-week cycles of Gemzar/Cisplatin. I am 55 and quite healthy, not over weight, exercise regulary, and eat fairly healthy. The side affects from the chemo were minimal for me. (I continued to hike 6-10 miles a week, yoga twice weekly, etc.) After 6 cycles my PET scan came back clean, no sign of cancer--tumors gone--or less than a cm as was explained to me. My tumor markers are still slightly high: CA-19=142 and CEA=6.0 after finishing the 9 cycles. 

My oncologist is not suggesting surgery. As we've discussed--what do you start removing? When do you stop? Since it is already 4th stage, my understanding is a new tumor could show up anywhere, right? My gynacological oncologist wants to do a hysterectomy, and will be doing another biopsy before we discuss this further. 

From reading all the posts on here there seems to be a push for surgery. When I talk to a surgeon, they want to do surgery--but then that's their job. As the chemo is working for me, I'm wondering why I would opt to have surgery. I'm quite confused about this. It seems that your dad, Erin, is having a similar experience. 

I'm also curious to know if anyone else has had it spread to their cervix? (no, not your dad, Erin!)

I have also been diagnosed as pre-cancerous in my colon. My next colonoscopy in February will determine if the chemo has affected this. My gastroenterologist doesn't seem to think so, but then none of my doctors thought I'd have a clean scan after only 3 months of chemo. We'll see......

I'll be having my next scan soon and will be starting on a maintanence chemo program. 

Laurel

Hi Laurel,

Sorry to hear your news. What doctors saw in your liver may not be cancer at all. You may not have Gallbladder cancer at all. Even histology is sometimes wrong. Please go for the surgery. Cut out all suspecious areas and have biopsies. Do not trust chemotherapy only. It can't kill all Cancer cells and if the mother cancer is present, it will spread other metastasises and will help to survive the existing metastasises. It will also will not allow your immune system to see and fight them. So, please remove gallbladder and uterus, if possible. If you have appetite and strength, you will win the fight. Since you have a very good response from chemotherapy, it will prevent the spread of disease during the operation. Your cancer markers will go down immediately. Do not trust your oncologist. I also was diagnosed with liver metastasis and was given 3 months to live. A year later there was nothing in my liver. I did not even have chemotherapy or liver resection. Only gallbladder removed and immunotherapy. I also had traditional Chinese medicine treatment and took high doses of propolis 3 g a day for 2 months. Exercise 5 times a week, walk at least 5 km a day and do everything to stimulate my immune system.

Ja59

Ja59 said:

Hi Laurel,

Sorry to hear your news. What doctors saw in your liver may not be cancer at all. You may not have Gallbladder cancer at all. Even histology is sometimes wrong. Please go for the surgery. Cut out all suspecious areas and have biopsies. Do not trust chemotherapy only. It can't kill all Cancer cells and if the mother cancer is present, it will spread other metastasises and will help to survive the existing metastasises. It will also will not allow your immune system to see and fight them. So, please remove gallbladder and uterus, if possible. If you have appetite and strength, you will win the fight. Since you have a very good response from chemotherapy, it will prevent the spread of disease during the operation. Your cancer markers will go down immediately. Do not trust your oncologist. I also was diagnosed with liver metastasis and was given 3 months to live. A year later there was nothing in my liver. I did not even have chemotherapy or liver resection. Only gallbladder removed and immunotherapy. I also had traditional Chinese medicine treatment and took high doses of propolis 3 g a day for 2 months. Exercise 5 times a week, walk at least 5 km a day and do everything to stimulate my immune system.

Update on immunotherapy

Merry Christmas everyone!

I just wanted to let you know the outcomes of my ACTL treatment in China. I had a three months therapy in January-April this year in Beijing this year for GBC stage 4 with liver metastasis 2.5 x3.0 centimeters. I had gallbladder removed a month before the treatment. I refused liver resection and chemotherapy and went to China instead.  I had a CT scan 8 months later. It showed that liver metastasis had dissapered. The leading professor in hepatobilary cancer could not believe his eyes.He requested the review of my original pathology, suspecting that there was a mistake and there was no cancer at all. Yesterday the results came back. The leading Sydney pathologist confirmed, that both speciments from liver and gallbladder contained cancer cells. Doctors do not know what to think, but I believe in immunotherapy as I was feeling better and better over the course of treatment.

You can read about this treatment at this website asiancancer.com.  I was treated by the other company - cancertherapychina.com. You can just google CTL cancer or ACTL cancer. CTL means cytotoxic lymphocytes. This is an old treatment. ACTL is just one of its modifications. Trials on CTL are going all over the world, mostly on mice. Only China does it for people with good results. The treatment is only 2 years old and there is no much statistics yet. I'll keep you updated.

Merry Christmas and Happy New Year to you all!

Diane_60

Hi

I am so glad I found this site, Thank you to everyone who posts their stories, it helps.

It has been such an inspiration reading these stories, I am a 60 year old widow ,I lived in Florida but came home to England for treatment at Guys Hospital in London.

I have just been diagnosed with gallbladder cancer, didn't want to ask the stage, guess I am just too scared. The doctors told me it's not operable, but reading some of the battles you guys have gone through and won, has given me hope. I am trying to be positive, just in the night when I am alone its hard.

My question is,has anyone used a particular diet ? I am trying a vegan, immunne boosting diet and have started walking as much as I can, even though my Chemo doent start until Jan 13th, I am trying to get fitter.

Has anyone any advice to help in this early days?

Also I have heard about Immunotherapy, it is supposed to be very good, does anyone know where it is offered close to the UK? or USA?

Thanks

Diane