Gallbladder Cancer - 2013 (Any Stage)

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  • illfight
    illfight Member Posts: 6
    #142
    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 my mom was diagnosed with

    Hi my mom was diagnosed with ca gall bladder stage 4 on 30aug 2015.... before that she was totally asymptomatic .. on usg and ct scan cancer was diagnosed. .... now no surgeon is ready to operate and have very nihilistic approach .... she got first therapy of gemcitabine and oxiplatin..... can u tell me what drugs u were given..... 

  • CLTdoglover
    CLTdoglover Member Posts: 16
    #143
    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

    GBC surgeon

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

  • CLTdoglover
    CLTdoglover Member Posts: 16
    #144
    RickGBC said:

    New here - Stage 2

    I had my gallbladder removed 9-12-2012 in a laparoscopic cholecystectomy.  I recieved the cancer diagnosis 9-25-2012 at my after-surgery follow up appointment.  Incidental discovery of cancer.  (At first I thought my doctor must be lying to me, I found it hard to believe).  After a CT scan I was refered to UCLA for liver re-section surgery and lymphadenectomy.  That surgery was 11-9-2012.  I was staged T2N0M0.  Post-surgery UCLA recomended surveillance, but no further treatment.  I got some second opinions from oncologists.  I had it pointed out to me by doctors many times during this period, that "there is limited clinical trial data to support a standard regimine" (in other words, I found it very hard to get a straight answer out of anyone).  Basically what I got from them was- "it's your call".  After two months of recovery from surgery, I started adjuvant treatment, gemcitabine chemotherapy.  I decided to do adjuvant treatment to prevent recurrance, based on the NCCN Guidelines.  I'm one month into that treatment.

    I'm 51 years old.  I'm AKA RocknIraqVet on the other message board. I am an Iraq Veteran (OIF 2004), and a guitar player. 

    Thanks everyone for being here and reaching out.  Especially Milly, Murray, and Lourdes, who I have corresponded with.  Talking with y'all has been very encouraging to me.  -Rick

    GBC Surgeon

    Can you tell me who peformed your surgery?  Seeking help for stage IV GBC.

  • CLTdoglover
    CLTdoglover Member Posts: 16
    #145
    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 

    GBC Surgeon

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

  • Fabfoursmom
    Fabfoursmom Member Posts: 1
    edited October 2016 #146
    Stepmom Stage IIIB, just had resection and finished chemo and ra

    Those of you who've been 2+ years with no recurrence----what do you or your doctor say is responsible for this? My Stepmom just finished her chemo and radiation and is now recovering from her resection. We are praying for no recurrence, or for a really long time until then! Thanks, Becky

  • Fightformom1
    Fightformom1 Member Posts: 1
    edited December 2016 #147
    My mom was Diagnosed with GB cancer Stage 3

    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

     

  • Rnjsmoy
    Rnjsmoy Member Posts: 1
    edited December 2016 #148
    Hello,

    Hello,

    i am new to this board but I am looking for any current stories of survival.  

    In August of this year I was diagnosed with stage IV gallbladder cancer and was given a very poor prognosis.  To say that I was stunned would be an understatemen!!  I was the healthiest 53 year old around, exercising 5-7 time a week with Crossfit, boot camp style workouts, and intense spinning classes on a regular basis.  I felt like the first oncologist I saw took one look at my records and gave up on me without even getting to know me.  I'm determined to beat the odds!  I started chemotherapy with Cisplatin and Gemcitabine and I'm happy to say that I'm doing very well. I've continued to work full time and still managed to get an occasional Crossfit or spin class in. I recently had a PET scan which showed tumor reduction in all areas.  This was fantastic news as I thought the best I could hope for would be no further growth or spread.

    On the downsid, I struggle with the negativity of my health care providers. I feel like they have no faith that I can survive. They are quick to want to reduce to dosage of chemo I am receiving and this puzzles me greatly. I am experiencing ringing in my ears and I know this signifies hearing loss. I would much rather have some hearing loss and live longer but they keep saying I have to weigh the risks versus benefits. Isn't the benefit a longer life?  

    Is there anyone out there currently who has survived more than a year or two?  I know a few years ago there were some on this thread with over 5 years, but I'm not sure if they're still out there. I just want someone I can talk to who has gone through the same or similar experience!  

    Thank you for listening to my story!

    Laura

     

  • Rich24uk
    Rich24uk Member Posts: 17
    #149
    Hi Laura

    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.

  • Rich24uk
    Rich24uk Member Posts: 17
    #150
    Hi Laura

    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.

  • No elle
    No elle Member Posts: 1
    edited January 2017 #151
    Hi Laura & Bonnie ...

    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.

  • tlhsparrow
    tlhsparrow Member Posts: 1
    edited January 2017 #152
    gallbladder cancer

    I was diagnosed in 2011 with stage II and in 2012 it showed up in my colon and I was upped to stage IV gallbladder CA.  I've been very blessed and am currently back to work and they can't find any cancer anywhere.

  • Purpletuzi
    Purpletuzi Member Posts: 1
    #153
    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. 

  • Rita Nassanga
    Rita Nassanga Member Posts: 11
    #154
    Mom with incidental GBC stage 2/3. Due for PET CT and surgery.
    My name is Rita. A medical Doctor and radiologist who is living and working in Uganda.
    This is mom's story.
    She is 57 years old and has no known chronic illnesses.
    She complained of low back pain 20 months ago in Aug 2015 and I asked her to come in for a general check up.

    We did a lumbar spine x-ray, mammography and a routine abdominal U/S check up; abdominal U/S revealed gallbladder stones and "balls" within the bile; the radiologist thought these were sludge balls.
    I asked mom to repeat the ultrasound later because of the equivocal gallbladder findings; she did repeat in a small clinic and the report only talked about gallbladder calculi; no mention of sludge or polyps.
    I remained skeptical...and encouraged her to come back for a gall bladder check during 2016; she did not come.
    Three weeks ago she called and complained of lower abdominal pain so I asked her to come in for a repeat ultrasound scan; this time the U/S revealed the gallbladder calculi, an area of gallbladder wall thickening and ???polypoid/sludge balls; the Radiologist wasnt sure whether these were sludge balls or polyps and advised Contrasted abdominal CT scan; this confirmed multiple polypoidal masses that were limited to the gallbladder. the rest of the organs were normal.
    MRCP and contrasted MRI were done and these reaffirmed the above findings; it showed multiple polypoidal gall bladder masses that were limited to the gallbladder without liver invasion. The diagnosis favoured neoplasm over tumefactive sludge. So histopathologic corelation was advised.
    The surgical team discussed the patient and though cholecystectomy was the best mode of tretamnet. Open cholecystectomy was done on 27th of Mar 2017...the appendix was also found to be inflammed; thus appendicectomy was done too; (remember her complaint was lower abdominal pain). There were no lymphnodes seen at surgery and surgeon says the mesentery surrounding the gallbladder was free.
    Histopathology results of the gallbaldder one week later revealed invasive well differentiated adenocarcinoma of the gallbladder arising in the tubulovillous adenoma with dysplasia. The tumour invade through the muscularis propria. No definte lymphovascular identified. The surgical resection margin at the cystic duct is involved by severe dysplasia. pathological stage:pT3NxMx.
    Another lab reported as Gall bladder adeno carcinoma. Grade 1. Stage 2. Surgical margins free.She is recovering well post operatively.
    Consultation with the oncology team reveals this plan of management.
    1. PET CT scan to look out for any metastases.
    2.Radical resection.
    3.Chemotherapy.

    She will be travelling to India for PET CT and surgery. We have neither pet CT nor hepatobiliary surgeons in Uganda.
    Mom is physically OK but she is very worried about the outcome. We are a close knit family and lots of friends.
    The news has hit us hard but we are open to advice and words of encouragement.
    Thank you.

    That is mom in summary.

  • Rita Nassanga
    Rita Nassanga Member Posts: 11
    edited May 2017 #155
    Mom with incidental GBC stage 2/3. Due for PET CT and surgery.

    Any one familiar with fortis hospital in Mumbai?

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

  • Rita Nassanga
    Rita Nassanga Member Posts: 11
    #156
    Mom with incidental GBC stage 2/3. Due for PET CT and surgery.

    My email is ritanassanga@gmail.com in case of any support.

    At the moment praying for PET CT to be negative.

  • stella359
    stella359 Member Posts: 4
    #157
    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?

    r u in the states?

  • stella359
    stella359 Member Posts: 4
    edited May 2017 #158
    tlhsparrow said:

    gallbladder cancer

    I was diagnosed in 2011 with stage II and in 2012 it showed up in my colon and I was upped to stage IV gallbladder CA.  I've been very blessed and am currently back to work and they can't find any cancer anywhere.

    how did u get cured?

    how did u get cured?

  • Rita Nassanga
    Rita Nassanga Member Posts: 11
    edited May 2017 #159
    Gallbladder cancer with lung metastase

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

     

  • Rita Nassanga
    Rita Nassanga Member Posts: 11
    #160
    illfight said:

    Hi my mom was diagnosed with

    Hi my mom was diagnosed with ca gall bladder stage 4 on 30aug 2015.... before that she was totally asymptomatic .. on usg and ct scan cancer was diagnosed. .... now no surgeon is ready to operate and have very nihilistic approach .... she got first therapy of gemcitabine and oxiplatin..... can u tell me what drugs u were given..... 

    Hi how is your mom doing?

    Hi how is your mom doing?

    Same here with asymptomatic mum with Gall bladder cancer stage 4...lung mets. Cholecystectomy was done. We await chemotherapies. How is your mom now?

  • Rita Nassanga
    Rita Nassanga Member Posts: 11
    #161
    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

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

     

     

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