Gallbladder Cancer - 2013 (Any Stage)

lourdes726 said:

Hello and happy New Year!

Hello,

It is nice to see so many of you post your stories. I visit the forums often, but don't often post. I thought I would share a little of my cancer journey, so that those searching the boards looking for support can find answers and hope. One of the hardest things I have found with this cancer is that there are so few people that can relate or have shared their stories of survival. I was diagnosed in April of 2010 after a routine gallbladder surgery due to gallstones. Never in a million years did I think the follow- up pathology would discover cancer. I was 47 at the time and very healthy and enjoying life. After my diagnosis I had a liver resection at UCLA. My surgeon and UCLA were very top notch and really looked after my care while I was there. I was lucky to not have any spread and was given a diagnosis of T2M0N0 and was told my tumor was small, close to 1cm. I chose to have follow up chemo and radiation because of the high risk of recurrance and because of the low survival rates of this cancer. I had 6 weeks of 5fu though a pump and 5 days a week of radiation. I was given a month off after radiation to recover and I started xeloda( which I did not tolerate well at all). I started gemzar for 4 more months and did well with this chemo. treatment. I had an extremely rare reaction to xeloda and was put in the hospital for type 1 diabetes and now I am on insulin. I have scans every 6 months and I have been cancer free. The stress before each scan is overwhelming. I am due for a scan next month and I am starting to really stress out. I am going on 3 years cancer free and I am grateful each new day. Cancer has really changed my life, I am not sure that those that have not experienced this type of rare disease can understand how scarey, lonely, and life changing this illness can be. My life is pretty much back to normal now. I work, travel, and enjoy my family, but I do suffer from fatigue. I do not have the energy or stamina to do the things I used to do. I wonder if others who have had chemo. or radiaton still have fatigue a few years later. I hope that 2013 is a great year for all of us and that more gallbladder survivors will share there stories on this board and inspire us all. I pray that this cancer gets better research and studies in order to find better treatments for those affected.

Lourdes

HI, can you tell me who performed your surgery?  Trying to find an experienced surgeon for Stage IV GBC after 9 months of chemo.  

westie66 said:

Maureen

Hi Maureen:  I am classified as Stage IV (there is no Stage V unfortunately) and 4 years ago was given only 2-3 months yet here I am.  Keep up your positive attitude.  What I find helps is not thinking about it - just going about my life and doing things I want to do. Awhile back when I was filling in the usual forms in the doctor's office I completely forgot to put down cancer as something I have! I also talk about my cancer with whomever is interested and if no one wants to talk about it, I go "into" nature and talk to the trees (sounds stupid but I'm a firm believer in the healing power of nature).  Be open to new procedures.  For example, they put me on folfirinox which is a new pancreatic cancer/colon cancer chemo and my cancers responded fairly well to it (although a perforated bowel and 5 months in hospital ended the treatments after 14 rounds). 

Keep in touch and keep positive.  The prognosis may not be good but living sure is.

 

Cheryl 

Hi, Cheryl.  Do you have names of surgeons you recommend for Stage IV GBC?

Hello everyone... First like many other I want to first say thank you for sharing your stories here... they are so encouraging and more important offer hope...

On November 21 my mom had a simple procedure done to remove her gallbladder... what it was suppose to be a 45 minute procedure ended up being a 2 hour procedure and when the doctor came back out he told me that there were complications... her gallbladder had ruptured and that he saw something he did not like while he was there and there for the first time I heard the word that I never thought I would hear... he said that he said what he thought was cancer... I was stunned and felt so scarred... I thought how can this be... my mom is 63 year old very active... She had just completed a colonoscopy and endonoscopy with all results coming back clean.... The doctor told me that he took a biopsy and sure enough three days later it was confirmed that she had gallbladder cancer.  He referred us to a cancer treatment center here in Des Moines Iowa.  The board of surgeans and doctors met and decided that she should be operated... two weeks later she had her operation to remove the part of the liver that was affected and any lymph nodes as well. Once the surgean was done he informed us that he was unable to do the procedure because the cancer was too advanced and the prognosis was not good.  He told us my mom had only a year left to live.... How could this be three weeks ealier she was healthy and fine and now this... to me it just did not make sense... He told us that he placed a port to start chemo therapy to try to prolong her life (pallative treatment) something I had read about but did not want hear that day... 

I refuse to think that all I have left with her is a year... I am going for a second opinion.... to Mayo in Minnesota... I am praying they can give us more options than pallative treatment...

Are there any questions I should be asking?? Does anyone know if Mayo is a good place to be referred to?  Should I be looking for other cancer centers that have more experiance?  What clinic trial treatments should I be asking about?

All I have is now is HOPE... and ofcourse GOD.... We are in for a fight of our lives but I refuse to loose my mom so soon... She has 8 grandchildren that she still need to enjoy...

Thank you in adcance for any information you can give us....

Bonnie

Hi Laura. My mum was diagnosed back in 2014. We've gone through gem cis and recently gemcitibine + capecitibine which unfortunately didn't work. Now on to a phase 1 trial. Never give up hope, we've found pretty much every oncologist wants to tell you how terrible the situation  is and this is partly their job. Feel free to ask any questions you may have. This is a quiet place with GBC but there are a few active.

Bonnie - my mother's path with this disease started almost identical to your mother's story. She was diagnosed in the same manor and told the same information after attmepted surgery to remove the tumor. This was back in the spring of 2014 and she is still here with us although her battle continues. We have no answers, I believe that mom has traveled the same trials of chemo treatment as most everyone here.  She did extremely well for a very long time, showing much improvement and even being able to reduce chemo treatments to every 3-4 weeks instead of every 1-2 which was giving her a bit of a break.  I truly believe she would have continued to do well and remain stable but she desparately needed a hip replacement which required a pause in her treatment and then there was a snafu with her insurance coverage so by the time everything was said and done she had gone almost 4 months without chemo which allowed the tumor to progress and create blockages in her small intestine and bile duct.  We are now dealing with an external catheter to drain the bile and getting her well enough to start her next round of chemo in hopes that we can reduce the tumor enough to allow internal stenets to clear the blockages.  

Laura - My mom has made it almost 3 years now in stage 3-4 .  it is a coninual battle that you may have to face for the rest of your life but there is life left to be had if you keep your chin up and go at it with everything you've got.  There is always the hope that if you can battle long enough, maybe the next new treatment that science and technology provides will be the one that makes this form of cancer curable and not just something to treat as pallative.

Hi everyone,

I am new here. I am happy to tead everyone's stories. My mom has recently been diagnosed stage 4 gallbladder cancer.  She will start chemo on Tueday and I was looking to hear from survivors so I can encourage her. 

Any one familiar with fortis hospital in Mumbai?

That's where we'll be going for further evaluation ant treatment.

Purpletuzi said:

New

Hi everyone,

I am new here. I am happy to tead everyone's stories. My mom has recently been diagnosed stage 4 gallbladder cancer.  She will start chemo on Tueday and I was looking to hear from survivors so I can encourage her. 

r u in the states?

Mom DX with gallbladder cancer and Lund Mets. Starting chemotherapy soon. Any advice pls? 

LucyDoodle said:

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

 

 

 

 

Wow...great news. Mom with Gall bladder cancer too and lung mets. Starting chemo too. Did yo combination contain gemcitabine?