Gallbladder Cancer - 2013 (Any Stage)

The news that the cancer has spread to my lymph nodes and I have been staged as 3B has finally sunk in.  I've lost my center and can't find my courage.  If anyone has words of encouragement or lymph node survival stories, I could sure use them.  Thank you.

Maureen 

haugy said:

Hi Maureen,
 While no two

Hi Maureen,

 While no two cases are the same , I was diagnosed and had surgery june 2010 and was staged the same as you stage  3b    t3 n1 mo.  I was node positive and also  had liver involvement  .I also did 6 cycles of gemcitabine/ cisplatin chemo.   I have passd the 2.5 year mark and am going for 3 years .

Murray

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 

wandabill said:

gallbladder stage IV

Hi, I am Wanda 57 yo female diagnosed last week with this.  It is a blessing to know there are SURVIVORS!!  Have any of you heard of the Huntsman Inst. in Salt Lake?  My family is in the area so I would like to use them if they are the right place.

Thank you for any info.

Hi Wanda,

I'm sorry you had to find us but I'm glad you did when you had to! 

I am not familiar with the Huntsman Institute but I wanted to welcome you to the boards and let you know that you are amongst friends here.  We will support you and cheer you on in your journey.

Just remember that you are a person - not a statistic.  And, make sure your medical team understands that as well. 

What questions do you or your family have?  Ask away!  And know that my family and I will lift you in prayer tonight. 

Best to you - and to all on the board!

Charmi

Hey gang,

Mom is having her 2-year CT scan tomorrow.  Results on the 18th (week from Thrusday).  We know that things are good and have faith that the results will prove us right.  Scanxiety still manages to nip at me from time to time. 

Best to all! 

Charmi

Murray, Cheryl, Lily & Charmi:

Thank you so much for the support and encouragement -- it was the beautiful people found on this website that once again helped me pick myself up off the floor!  To be clear, my cancer is T2N1.  On April 3rd I returned to OHSU to have the surgical staples removed from the 3/15 resection.  My surgeon tells me I am healing up really well.  Later that day I met with an oncologist, who recommends a 3-month course of IV-Gemcitabine with a concurrent Capecitabine pill.  Afterwards I"ll under 5-6 weeks of radiation. Because I live 3.5 hours away from Portland, I have been researching oncologists in Eastern Oregon/Washington, and will be meeting with one within the next two weeks.  After this visit I felt really good, and here's why:  I am the kind of woman who needs INFORMATION, and above all else, a PLAN.  Got both, now!    If I can see it, and believe it, I will prevail.  I can, I do, I will.

Wanda, sorry to meet you under these circumstances, but you've got me in your corner now.  Charmi, I've been praying for your mama.

Maureen

(P.S.  I thought I already posted this message, but didn't see it anywhere -- sorry if it turns up again, or somewhere it shouldn't)

I just finished my 6th treatment out of a total of 8 for this cycle of Folfiri. My numbers are steady and the doc is happy. May have to hit this stubborn node with radiation after we finish the chemo. I am in great spirits. During the last month my daughter became engaged to be married on 10/1014. I am helping with lists, photogs, limos and music. I look forward to walking her down the aisle that day. Another great reason for me to continue to fight like hell. 

Welcome and good luck to you Maureen on your journey. There is alot of help and support here on this board. We have proved that never say never is a fallacy. People here are making great strides in this fight against a relatively unknown type of cancer. 

Good luck to all, prayers to all and keep up the fight. If you would like, I am on Facebook. Feel free to friend me and we can go through this together. I wish good health to all of us on this board and hope that one day it won't be needed. 

Rocky Sweeney

After doing a search on the internet I came across this forum and would like to share some information about my mom who was diagnosed with this disease and as well as find out any successful therapy done as there has been little information out there. My mom is relatively young 57 years old, been pretty asymptomatic.  In March 2012 she was diagnosed with gall bladder cancer and had a cholecystectomy done with parts of involved liver and lymph nodes removed. She then started on 6 cycles of gemcitabine/cisplatin. She had a CT scan that was all clear and rescanned 3 months later which showed a 6mm recurrence in the liver.

After discussion with her oncologist, surgeon and radiologist they decided to perform a radio frequency ablation on the spot seen on the CT scan (insert a needle through the liver and sort of burn it off using high frequency). 3 cycles of Xeloda / Irinotecan (CPT11) was then given. A repeat CT scan showed a growth in the spot up to 1.3cm. So a change in chemotherapy was decided upon by the oncologist - she received Xeloda / Oxaliplatin 3 cycles.

After this 3 cycles, the repeat scan showed a further growth in that spot up to 5cm and new lesions have been found in the liver as well as porta hepatis.

So now we are on a crossroad deciding what is next for her

Her oncologist has recommended to step up the therapy to Folfirinox  (5FU/ Folinic acid/oxaliplatin (85mg/m2) / Irinotecan (165mg/m2) as extrapolated from data from pancreatic cancer. We are a little hesitant as these drugs have yet to have shown effectiveness with my mom all used in the previous 6 cycles she had however this time is going to be a mix of it. I have notice in this forum that some people are actually on this regime.

We met another oncologist for a 2nd opinion who recommended either Taxol or Paxus (Both of which are paclitaxel, but the oncologist mentioned that Paxus is a stronger type, Paxus seems to only be marketed in South East Asia). Has anyone from here tried this drug? I have so far found an article on it if anyone is interested to read up on it.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3506779/

Surprisingly her markers so far are negative. My mother is currently being treated in Malaysia. Any input would be greatly appreciated. 

Regards,

Sue

sueteen said:

Gallbladder cancer stage V

After doing a search on the internet I came across this forum and would like to share some information about my mom who was diagnosed with this disease and as well as find out any successful therapy done as there has been little information out there. My mom is relatively young 57 years old, been pretty asymptomatic.  In March 2012 she was diagnosed with gall bladder cancer and had a cholecystectomy done with parts of involved liver and lymph nodes removed. She then started on 6 cycles of gemcitabine/cisplatin. She had a CT scan that was all clear and rescanned 3 months later which showed a 6mm recurrence in the liver.

After discussion with her oncologist, surgeon and radiologist they decided to perform a radio frequency ablation on the spot seen on the CT scan (insert a needle through the liver and sort of burn it off using high frequency). 3 cycles of Xeloda / Irinotecan (CPT11) was then given. A repeat CT scan showed a growth in the spot up to 1.3cm. So a change in chemotherapy was decided upon by the oncologist - she received Xeloda / Oxaliplatin 3 cycles.

After this 3 cycles, the repeat scan showed a further growth in that spot up to 5cm and new lesions have been found in the liver as well as porta hepatis.

So now we are on a crossroad deciding what is next for her

Her oncologist has recommended to step up the therapy to Folfirinox  (5FU/ Folinic acid/oxaliplatin (85mg/m2) / Irinotecan (165mg/m2) as extrapolated from data from pancreatic cancer. We are a little hesitant as these drugs have yet to have shown effectiveness with my mom all used in the previous 6 cycles she had however this time is going to be a mix of it. I have notice in this forum that some people are actually on this regime.

We met another oncologist for a 2nd opinion who recommended either Taxol or Paxus (Both of which are paclitaxel, but the oncologist mentioned that Paxus is a stronger type, Paxus seems to only be marketed in South East Asia). Has anyone from here tried this drug? I have so far found an article on it if anyone is interested to read up on it.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3506779/

Surprisingly her markers so far are negative. My mother is currently being treated in Malaysia. Any input would be greatly appreciated. 

 

Regards,

Sue

Hi:  I have gallbladder cancer with mets to the peritoneum and liver.  I was diagnosed in Oct 2009.  I had no symptoms.  I had surgery in April 2010 to remove the gallbladder, its tumour, and part of the liver. I had one series of 12 treatments with cisplatin/gemcitibine which didn't do much to control the mets.  I then had two series (14 treatments) of folfirinox (oxaliplatin + irenotecan + 5FU pump) which did stabilize the tumours.  I have not heard of anyone else having this treatment for gallbladder cancer mets until your post! Unfortunately, the oxaliplatin almost destroyed the lining of my colon and I had a perforated bowel last May - was on life support for 3 weeks and in hospital 5 months.  I don't know how one checks if there is damage to the colon from folfirinox (colonoscopy?) but this treatment does seem to work on the mets to the peritoneum. 

As far as I know, the Taxol treatment is for mets to the peritoneum that have spread from the ovaries and for primary peritoneal cancer. 

Keep us posted.

Cheryl

MrsCDV said:

StageIV GBC

Hi Cheryl,

My brother, 40, was diagnosed about a month ago with StageIV GB cancer. Its mets in liver, lung, bones, low spine. He starts chemo on Monday. I was so scared because of all the stats I read until I came across this blog. He has 3 young children and wife plus a parents and siblings that are supporting him with love and faith. thank you for sharing your story

Hi All,

i haven't posted for ages but wanted to give you an update on my husband.

In May 2011 (he was 44) Steve was diagnosed with stage 4 gallbladder cancer which had grown into the liver and bile ducts. Surgery was attempted at Johns Hopkins but the tumor was much larger than imagined involving a lot of the liver and so was deemed not possible. Steve started his chemo (gemzar and cisplatin) in the June and tolerated it well. For a while nothing much happened, his CA 19 -9 dropped a little (it was in the 200's) and scans showed no really shrinkage but no growth or spread either.

In May 2012 nearly 10 months into chemo the tumor showed a marked decrease in size and the CA19 - 9 had dropped significantly. The chemo contined!

In November 2012 with cancer markers in the normal range the CT scan seemed to suggest that the tumor might be even smaller. Our wonderful oncologist at Johns Hopkins decided it was time to talk to the surgeon again after a PET scan showed no uptake in the abdomen. Still the chemo continued!! 

In February 2013 after another encouraging CT scan the surgeon agreed that exploratory surgery was in order which took place 8 weeks ago. The surgeon was amazed at what he found, the tumor had indeed shrunk by an incredible degree and this time he was able to operate successfully removing the gallbladder, resecting the liver, bile ducts and lymph nodes. The first scan 6 weeks later looked good and the margins were clear!

In addition to nearly 20 months of chemo we did change our diet after reading Anticancer (by David Servan Schreiber). Nothing cranky just good healthy food. Steve has also continued to exercise, running and biking up to his surgery as well as working. Who knows how much the diet and exercise helped but it is likely that at the very least it made it possible to cope with so much chemo.

It's early days I know but I wanted to share a bit of good news. Steve was told by our local hospital (who found his cancer) that he had maybe 8 months to live, this was a man who two weeks prior had run a 10 mile race!  Our Oncologist at Johns Hopkins whilst never giving us false hope has always been positive and ready to help us fight. He is my hero (well one of them any way, my husband is another and then there is the surgeon).

Sorry for the long post, its just that I know how much hope I got from reading this thread in the past two years so I wanted to share.

Debbie