Gallbladder Cancer Stage 4

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  • Sidharthaa
    Sidharthaa Member Posts: 1
    edited May 2017 #282
    Gall bladder cancer stage 4-my father aged 56

    Hello Lily.  Thanks for being a only ray of hope. 

    My father aged 56 years old is suffering a gall bladder cancer stage 4 which has spread in lot of places including region near around neck, a bone in back,  liver, small intestine.  We have got to know about the staging and cancer within a week only. I really wanted to know that apart from regular chemo what other things you incorporated in your treatment, medicines,  exercises and how can we get this disease out of his body completely. Since timeframe given by doctor is no more than a year.  Kindly and please help me out with something potent and positive.  We are based out of India and treatment is going in Medanta medicity.  Kindly suggest something.  Please. It would be really great if you could mail me any helping advise on my below email ID or on my contact number or of I can get in touch with you personally. 

    Thanks for all your support to many of us. 

    Regards

    Sidhartha

    <content removed by CSN>

  • Rita Nassanga
    Rita Nassanga Member Posts: 11
    edited May 2017 #283
    Lily50 said:

    Gallbladder Cancer Stage 4
    Hi,
    I too was diagnosed with gallbladder cancer stage 4 in the fall of 2005. My husband later told me that I was given a short time frame also. Well they were wrong!

    I had aggressive chemotherpy for almost a year to shink my turmor so that they could operate on my gallbladder, liver, stomach and removal of lymph nodes. I have a great oncologist in Las Vegas, Nevada and had my surgery at UCLA in California. I completed my chemo in March 2007.

    I never lost my HOPE or FAITH and no doctor should ever be allowed to take away your HOPE.

    If I can help answer any questions just let me know. It is a hard road but it is worth it. Every day becomes a blessing.

    Advice on stage 4 Gall bladder cancer

    Hi Lily.

    How are you doing?

    Mom recently diagnosed with stage 4 gallbladder cancer; she is 57years.

    We are in India and yet to start chemotherapy.

    Please share how you managed to fight the cancer.

    Thank you.

     

    Dr. Rita

  • Rita Nassanga
    Rita Nassanga Member Posts: 11
    #284
    Immunotherapy

    Hello Ja59/Lilly

    Mom has GB ca stage 4.

    What's your advice on immunotherapy and homeopathy?

     

    Thanks for response in advance.

     

    Dr. Rita

    Radiologist

  • Rita Nassanga
    Rita Nassanga Member Posts: 11
    #285
    mohammad@medico said:

    My father Have GBC Stage 4

     

    Hi dear freand
    my name in mohammad from Iran. sorry my english not good, sorry
    You are my source of hope and life,
     my father have gall bladder cancer stage 4, we know almost 1 month
    ago, surgery not good because his dr told me the cancer metastas to
    lymph node (N2) but organs ( Liver and pancrase) is clear and no metastas to there  .(T2 N2 M0) the surgery consist of removal gall bladder without lobectomy of liver or resect of lymp nodes, Doctors told me prognosis is so bad nearly 6 month and I am in shock and upset.
    however we want start chemotheaphy but the dr told us this treatment
    dont better survival and I hesitate that start chemotheraphy or not.
    please help me for this subject 
    also My brother lives in Germany and We try to go to this country for
    treatment, in my country drug that use for this deasease is GEMZAR,
    please help and direct me to make a right decition

    thanks everyone try to help me

    Hi

    How is your dad doing now? I hope he survived!

     

  • vaishnavi12
    vaishnavi12 Member Posts: 1
    #286
    My uncle with Stage 4 Gallbladder Cancer.

    Hi,

    I am from Hyderabad, India. My uncle who is 58 years old was diagnosed with Gallbladder cancer Advance stage in February 2017 and was given chemo for 3 times and his treatment included

     

    Summary of Treatment:

    INJ ZOLDONAT 4MG IV

    TAB CAPECITABINE 500 MG 2-2X14DAYS

     

    Case Discussion: He is diagnosed as carcinoma gallbladder with bone mets. Already given palliative RT to bone and brain.

     

    and after that he was diagnosed with Jaundice with bilirubin count 8.5. Now bilirubin count increased to15. Metal stent was placed on may 25 2017. He is getting weak and has fever frequently. Now his bilirubin count is reduced to 3.4 after stent placement and at same time we have observed that his CBC is 6.5. When he was diagnosed with cancer Complete blood count showed 12 and now it is reduced to 6.5. He is very weak and is bed-ridden and was unable to walk. he can only take liquids. For one week he has loose stool atleast 5 times a day and it stopped now after taking some medicine.  Blood transfusion is done on 21 june 2017. We also tried some herbal medices. Our oncologist suggested that if we are ok he can continue with Chemo, but we are not sure whether my uncle will be able to take it. I wanted to know if there are any one who experienced the same and was able to survive. Are there any other alternative ways. We still have hope and wanted to try every possibility. Please help.

  • candicea
    candicea Member Posts: 5
    #287
    stage 4 gallbladder cancer

    hi my name is candice, my mom brandy 43 a mother of 7 we are all in are 20s and she has a 1 and 3 year old she was recently diagnosed with stage 4 gallbladder cancer this past 2016 Christmas. Probably the worst Christmas of are lives, but still happy where able to have are mother here. She was put on chemo witch seemed to be working but her lasted MRI results indicated that she had 11 new tumors on her liver and surgery wasn't a option. This is very hard on us but mostly for are little brother and sister they don't understand why my mom is in and out of the hospital this is devastating to all of us. The doctors are not giving us much hope. She is at kaisaer right now me and my siblings where able to get her better insurance so she can seek the best medical help we just don't know where to start if anyone can be help that would be wonderful thank you!

  • christ10
    christ10 Member Posts: 2
    #288
    Stage 4 GBC Diagnosis

    My dad was recently diagnosed with stage 4 gall bladder cancer that has spread to bones in his back and lymph nodes in his chest and lungs. We've been told by his oncologist that radiaton and surgery are not options, due to the cancer having spread. Chemotherapy is the only suggested treatment option with the use of Cisplatin and Gemcitabine for a life extension expectancy of 6-9 months. My dad is 78 years old and is in good health and exhibits no symptons to date. Are there any survivors with a similiar diagnosis that can offer some direction or insights on treatments?  

  • Ja59
    Ja59 Member Posts: 25
    edited July 2017 #289
    Stage 4 gallbladder cancer




    Dear All,

    Sorry for the late reply, but I work full timeand rarely go to this forum now.

    I was diagnosed with stage 4 in December 2012. I only had gallbladder removed. Refused liver resection and chemotherapy. Spent 3 months in China having Immunotherapy, called ACTL. You can check this website http://cellsbay.com/cancer-treatment/

    in 3 months all liver metastasis disappeared. I work full time for 15 months now. Strongly recommend this treatment, as it is easy to tolerate and it has no side effects.Gives good quality of life.

    Cheers Tatiana




  • Kuldeep
    Kuldeep Member Posts: 2
    #290
    My wife she is just 29 yrs old

    She got gallbladder cancer stage 4 . Both lobes of liver are effected.  She had  her 1st chemo ( cysplatin and gemcitabin) .  I just wanted to know how much time she have if chemo didnt help... And also if anyone tht have been cured please let me know what type of chemo has been used..  I feel too hopeless:( . Hoping for an good answer.  I m so scared 

  • LiliTM
    LiliTM Member Posts: 32
    #291
    Kuldeep said:

    My wife she is just 29 yrs old

    She got gallbladder cancer stage 4 . Both lobes of liver are effected.  She had  her 1st chemo ( cysplatin and gemcitabin) .  I just wanted to know how much time she have if chemo didnt help... And also if anyone tht have been cured please let me know what type of chemo has been used..  I feel too hopeless:( . Hoping for an good answer.  I m so scared 

    Dear Kuldeep,

    I'm so sorry about your wife, there are no words for this fear for our loved ones. I also came here looking for hope and information (for my dad). I've learned a lot since this all started for us in March. One thing I've learned is that every situation is so specific to the individual. Gem/Cis seems to be the standard chemo they start with now for this diagnosis. I'll share with you some of what I shared previously on this site in case it helps at all:

    My beloved, athletic, still-young father got a shocking stage 4 Gallbladder Cancer diagnosis in March. He began chemotherapy at the end of March with gemcitabine and cisplatin. Shrinkage is possible on this chemotherapy regimen. I have read about a few GBC cases in which chemotherapy (sometimes a different regimen) reduced tumors enough to render the patient operable, resulting in NED (no evidence of disease). The individuality makes it hard to tell if what works for one person will work the same for another. But it gives me hope that it is possible.

    These discussion boards don't seem very active for GBC. I check in every so often to see if there's any new advice - and I want to support everyone else dealing with this, with whatever we have learned.  I'll share some of the recommendation we got in case they are of help: one was to go to one of the prominent centers where they see more cases of rare cancers like GBC, such as MD Anderson, Memorial Sloan Kettering, Dana Farber... 

    We were also urged to send the tumor tissue for genetic sequencing. (At Memorial-Sloan they do the MSK-IMPACT test, the various centers probably each have their own - it can also be sent to Foundation One but insurance did not cover our test there.) If the genetic test comes back with targetable mutations, perhaps you will be able to do targeted therapy. If your wife has high microsatellite instability or tumor mutation burden, perhaps she will be a good candidate for checkpoint inhibitor immunotherapy. 

    MSK has an integrative medicine center where they recommended probiotics, some supplements specific to my dad, and acupuncture/de-stressing. They also emphasized a vegetable-based diet and exercise, both of which seem to be helping my dad get through his chemo well. It might be helpful to ask wherever you go if they have an integrative doctor you can see. 

    My heart goes to you and everyone here, with all my best wishes. 

  • MyJourneywithCancer
    MyJourneywithCancer Member Posts: 82
    #292
    Hello Kuldeep,
    I have to second LiliTM's suggestions about genetic profiling and immunotherapy.
    Given that many early-onset cancers are hereditary, and KRAS and EGFR are reported in high-incidence in a North Indian study, targeted therapies can be a logical second line of treatment for your wife. If her family and demographic information indicate, I would also talk to the oncologist about a genetic counseling.
    As for the relevant clinical trials, NCI-MATCH is a good place to start:
    https://clinicaltrials.gov/ct2/show/NCT02465060.
    MJC
  • SusanH53
    SusanH53 Member Posts: 1
    #293
    Stage 3B Gallbladder Cancer

    Hello,

    I am new to the board. I was getting tested to donate a kidney to my husband when the CT scan showed a gallbladder irregularilty of a stone they felt should be removed. Everyone was shocked at the pathology report showing stage3B gallbladder cancer. No symptoms prior to removal.

    I am doctoring at the University of Minnesota Masonic Cancer Unit. Just started a 21 day cycle of  gemcitabine and cisplatin in November which I tolerate- but I can't keep my white bllod cell count up and have had to miss 2 chemo treatments. 

    I am heartened at the stories of people living longer than expected, this is certainly not a cancer with good odds. So far I don't feel any effects I think are related to the cancer, so I don't really know what to think. I have a 3rd CT scan the end of January and meet again with my onocologist I should have been almost 1/2 way through the 6 month treatment by then but because of the WBC I am frustrated. 

    Susan

  • LiliTM
    LiliTM Member Posts: 32
    #294
    SusanH53 said:

    Stage 3B Gallbladder Cancer

    Hello,

    I am new to the board. I was getting tested to donate a kidney to my husband when the CT scan showed a gallbladder irregularilty of a stone they felt should be removed. Everyone was shocked at the pathology report showing stage3B gallbladder cancer. No symptoms prior to removal.

    I am doctoring at the University of Minnesota Masonic Cancer Unit. Just started a 21 day cycle of  gemcitabine and cisplatin in November which I tolerate- but I can't keep my white bllod cell count up and have had to miss 2 chemo treatments. 

    I am heartened at the stories of people living longer than expected, this is certainly not a cancer with good odds. So far I don't feel any effects I think are related to the cancer, so I don't really know what to think. I have a 3rd CT scan the end of January and meet again with my onocologist I should have been almost 1/2 way through the 6 month treatment by then but because of the WBC I am frustrated. 

    Susan

    Dear Susan, I am so sorry you are going through this too. And I hope your husband is doing ok as well with his health situation. 

    You may have read from my earlier posts, I'm here for my father, who got his shocking diagnosis in March. He also started getting low white blood cell / neutrophil counts early on with Gemcitabine and Cisplatin, so at Memorial Sloan Kettering they gave him booster shots of Neupogen in between treatment 1 and 2 of a cycle. They started with a shot on 3 consecutive days (you can even administer the shots to yourself at home, that's what my dad does now) but they found one shot on just one day was sufficient to get his counts up. So if he starts a chemo cycle on Tuesday, he does a neupogen shot on Thurs or Fri, and is ready for chemo again on Tuesday. He does not take it during his "off week". 

    Perhaps you can ask your oncologist about neupogen so your counts will be high enough for treatment? 

    I'll share with you some of what I shared previously on this site in case it helps at all: 

    Are you able to get a second opinion at one of the prominent centers where they see more cases of rare cancers like GBC, such as MD Anderson, Memorial Sloan Kettering, Dana Farber, etc? 

    A consultation with an oncologist and a surgeon specializing in hepatobiliary cancers in one of those centers may be helpful,. 

    We were also urged to send the tumor tissue for genetic sequencing. (At Memorial-Sloan they do the MSK-IMPACT test, the various centers probably each have their own - it can also be sent to Foundation One but insurance did not cover our test there.) If the genetic test comes back with targetable mutations, perhaps you will be able to do targeted therapy. If you have high microsatellite instability or tumor mutation burden, perhaps you will be a good candidate for checkpoint inhibitor immunotherapy.

    MSK has an integrative medicine center where they recommended probiotics, some supplements specific to my dad, and acupuncture/de-stressing. They also emphasized a vegetable-based diet and exercise, both of which seem to be helping my dad get through his chemo well. It might be helpful to ask wherever you go if they have an integrative doctor you can see.

    My heart goes to you and everyone here, with all my best wishes. 

  • rkbarboza
    rkbarboza Member Posts: 1
    #295
    SusanH53 said:

    Stage 3B Gallbladder Cancer

    Hello,

    I am new to the board. I was getting tested to donate a kidney to my husband when the CT scan showed a gallbladder irregularilty of a stone they felt should be removed. Everyone was shocked at the pathology report showing stage3B gallbladder cancer. No symptoms prior to removal.

    I am doctoring at the University of Minnesota Masonic Cancer Unit. Just started a 21 day cycle of  gemcitabine and cisplatin in November which I tolerate- but I can't keep my white bllod cell count up and have had to miss 2 chemo treatments. 

    I am heartened at the stories of people living longer than expected, this is certainly not a cancer with good odds. So far I don't feel any effects I think are related to the cancer, so I don't really know what to think. I have a 3rd CT scan the end of January and meet again with my onocologist I should have been almost 1/2 way through the 6 month treatment by then but because of the WBC I am frustrated. 

    Susan

    Newly Diagnosed w/ Stage 4B GBC

    Susan,

    I know how you must be feeling since I was also diagnosed on a routine follow-up CT scan with a mass on my gallbladder in November.  Thankfully, I had a surgeon who was willing to take a risk, (given my age -53 and overall health) and did surgery in December removing all evidence of decease (tumors).  I had tumors from my gallbladder that reached into my liver and up into my diaphragm.  I'm now 4 weeks post op and will be looking at Chemo.  My oncologist is putting me on Capecitabine, a pill based chemo.  Six rounds, two weeks on one week off starting in Feb.  

    I to came to this board hoping to find anything hopeful from this rare cancer.  My oncologist told me there are just 4000 cases diagnosed each year, with more than half being women.  I share your frustration.  Are we the lucky ones who were able to have surgery to remove all the tumors?  I haven't seen much on this board about life after the tumors are removed?

    Kathy

     

     

     

     

  • Oscar Collin
    Oscar Collin Member Posts: 1
    edited January 2018 #296
    Lily50 said:

    89 Year Old Mother
    Hi,

    Welcome to our board. This thread is a little older than the Gallbladder Cancer 2011 thread. Many people have moved over to the smaller thread as it takes forever for this one to load and finding new posts can be difficult.

    I'm so sorry that this disease has touched your mother and your lives. This is a very sneaky disease and can sometimes appear with little or no symptoms. It is good that she started chemo and is already receiving results. That means that the Gemzar is doing its job to kill those nasty little critters.

    In the beginning of chemo sometimes they will add some type of medication to help you relax. You need to ask the chemo nurses exactly what she is being given in her cocktail. Sometimes doctors will add that component if they feel it is necessary. When you ask the nurses what she is being given, write it down and if you don't understand keep asking. You need to be an advocate for your mother.

    I was so happy to hear the joy in your voice when talking about your granddaughter. It is important for you not to let your mother’s illness become all consuming. You have to take care of yourself also.

    It is pretty common to lose weight when undergoing treatment. You can lose your appetite or you can become hungry all the time. I found that small meals worked the best every couple of hours. Also Ensure and/or Boost will make sure that she gets the nutrition that she needs. Fruits, vegetables, lean protein, and smoothies are all very good choices.
    It sounds to me like your mother has a strong support team. As people get older their support system can change from people that are their age to their children.

    At any time you can talk to us. There are people who have completed treatment, people who are in active treatment, and people who are the caregivers for their loved ones. We all have different perspectives on this disease. Becoming educated on this disease is a good thing. Knowledge is power and the more that you know the more comfortable you can become with this disease.
    Ask us any questions and we will try to help you and your mother during this journey.

    I'll add you mother to my prayer list.
    Take Care
    Lily

    GALL BLADDER CANCER

    Hi Lily

     

    Reading your post i strongly felt to write to you and get your feedback.

    My brother-in-law who is India in september 2016  had obstructional jaundice with bilirubin level remaining very high so the family GP ordered ultrasound to find the cause behind it. Upon further  investigation through others tests  led him to undergo radical cholecystectomy and found to have adenocarcinoma lesion at the neck of the gall bladder. 

     

     

    Post operation  4 cycles of chemos (Gemcitabine & Oxaliplatin) were taken with medications and routine checks (blood & CT) were done as ordered by the oncologist. During the 2nd routine checkup the CT scan report was not normal though blood test were normal. So biopsy was done ().

     

     

     

    Post biopsy again oncologist had asked to take six chemos and he said that he will change the chemos. However, we changed the Onco and they started with different Combo chemo regime of Oxaliplatin, Atopin,Irnotecan,Leucovorin, 5FU 600 MG, 5FU 500 ML over 11 hrs x 4 drips. After this regime of 4 cycles did Pet Scan, the diseases did not progress locally or regionally neither the tumors shrunk, now the dr has asked to continue with the same combo regime and 2 cycles are over remaining 2 are there they are taken after a gap of 10 days rest.

    He feels very negative and has pain in stomach, constitpation etc. Though we tell him to be positive and have faith in God. Appreciate your suggestions.

    Thanks

    Oscar

     

     

     

     

  • LiliTM
    LiliTM Member Posts: 32
    edited February 2018 #297
    Ask the NIH to research Gallbladder Cancer

    I just saw this opportunity to let the NIH know we need to see more resources put into Gallbladder Cancer research and trials: 

    The National Institute of Health (NIH) is the US government agency that sets priorities and provides funding for a large share of the biomedical research done in the United States. Right now, the NIH is asking the public – patients, healthcare professionals, and researchers – to submit ideas for how to allocate resources via an online initiative called All of Us: 

    Go to the link below and click the "submit new idea" button today. You have until 23 February to present your idea.

    You'll need to register with your email and zip code and then wait for an email so you can verify your account. Once you are in, look for the blue button top right. You only need to fill in the top of the form: your email, your zip code, your question, and then there is a 500 character block for you to write about what you think needs researching. Don't be intimidated by the form! You can leave everything else blank.

    KEYWORDS are really important: Gallbladder, cancer, metastatic, biliary, etc... Type a keyword, then hit return. You will see it appear in the blue box in the keyword field. Then add other terms. 

    Once registered, you can vote for other people's ideas – use the search function to find and vote for every idea or story related to Gallbladder cancer. 

    As a rare cancer, it's rare that research and trials get devoted to Gallbladder Cancer. This is our chance to have them hear our voices. Thank you! 

    https://allofusresearchpriorities.ideascale.com/a/ideas/recent?blm_aid=0

  • KCFlash
    KCFlash Member Posts: 23
    #298
    Gallbladder Diagnosis February 2018

    Hello, 

     

    I was diagnosed with GBC in February 2018 after routine removal of Gallbladder and the biopsy of my GB showed adenocarcinoma.   I then had a CT and MRI that showed no evidence of disease spread so they prepared for the liver resection surgery on 3/13/2018.   Unfortunately during that surgery they found a lesion on my liver which upon Frozen section appeared to be cancer.   However, the final pathology is that the lesion is Beign - NO Cancer.    Since I have had 2 surgeries I cannot have another surgery because they need my body to heal.    I did seek a second opinion at Mayo in Rochester and they confirmed.   Of course they did their own round of tests CT and PET scan.    PET scan did not show definitive signs of metatisis - they are some areas of watch and concern but the report indicates the the areas are more consistent with post operative changes.   The CT did show a 12mm x 14mm residual tumor in the cystic duct stump.    Unfortunately last week I developed a blockage of my bile duct - due to enlarged lymph nodes (again these can be post operative changes from the 2 surgeries - this is what my oncologist at Mayo is leaning towards.      As far as a stage they say they don't have a "stage" yet because of nothing definitive showing up on scans and my CA-19 is 7.    Last Friday 4/27/2018 I had 2 stents placed that will need to be replaced in 3 months.   I have been having pain in my back between my shoulder blades (this makes me nervous) which maybe it shouldn't because my scans are within a month.     I am also having some digestion problems since the stents.   So.... I have a couple of questions. 

    1 - What can I expect with the Chemo Gemzar and Cisplatin - Planning on 4 rounds - week1 both second week just Gemzar then week off.    They want to hit it "hard".     Any helpful tips diet/exercise etc..

    2 - Anyone have experience with Stents? - How long did it take to feel better? 

    3 - Am I just being overly anxious nervous about the back pain?   I swear anytime I feel something different I am sure it's the cancer.    I just haven't been myself since my first surgery February 22 and it feels like it's taking forever to recover from the surgery on 3/13 - The open "exploratory".    Now the Stent on 4/27

    4 - I am also a bit anxious that I haven't started chemo yet.   I know it's only been about 9 weeks since my first surgery and just a little bit over 6 weeks since the 3/13 surgery and I guess my body has gone through a lot.   

    Thanks

  • richnkim
    richnkim Member Posts: 31
    #299
    KCFlash said:

    Gallbladder Diagnosis February 2018

    Hello, 

     

    I was diagnosed with GBC in February 2018 after routine removal of Gallbladder and the biopsy of my GB showed adenocarcinoma.   I then had a CT and MRI that showed no evidence of disease spread so they prepared for the liver resection surgery on 3/13/2018.   Unfortunately during that surgery they found a lesion on my liver which upon Frozen section appeared to be cancer.   However, the final pathology is that the lesion is Beign - NO Cancer.    Since I have had 2 surgeries I cannot have another surgery because they need my body to heal.    I did seek a second opinion at Mayo in Rochester and they confirmed.   Of course they did their own round of tests CT and PET scan.    PET scan did not show definitive signs of metatisis - they are some areas of watch and concern but the report indicates the the areas are more consistent with post operative changes.   The CT did show a 12mm x 14mm residual tumor in the cystic duct stump.    Unfortunately last week I developed a blockage of my bile duct - due to enlarged lymph nodes (again these can be post operative changes from the 2 surgeries - this is what my oncologist at Mayo is leaning towards.      As far as a stage they say they don't have a "stage" yet because of nothing definitive showing up on scans and my CA-19 is 7.    Last Friday 4/27/2018 I had 2 stents placed that will need to be replaced in 3 months.   I have been having pain in my back between my shoulder blades (this makes me nervous) which maybe it shouldn't because my scans are within a month.     I am also having some digestion problems since the stents.   So.... I have a couple of questions. 

    1 - What can I expect with the Chemo Gemzar and Cisplatin - Planning on 4 rounds - week1 both second week just Gemzar then week off.    They want to hit it "hard".     Any helpful tips diet/exercise etc..

    2 - Anyone have experience with Stents? - How long did it take to feel better? 

    3 - Am I just being overly anxious nervous about the back pain?   I swear anytime I feel something different I am sure it's the cancer.    I just haven't been myself since my first surgery February 22 and it feels like it's taking forever to recover from the surgery on 3/13 - The open "exploratory".    Now the Stent on 4/27

    4 - I am also a bit anxious that I haven't started chemo yet.   I know it's only been about 9 weeks since my first surgery and just a little bit over 6 weeks since the 3/13 surgery and I guess my body has gone through a lot.   

    Thanks

    Diagnosis?

    Hello KCFlash-first sorry to hear about all the surgies and the pain. Something you wrote caught my eye- you talk about back pain-that is what my husband went to the Dr for was upper back/shoulder pain thinking it was a gallbladder attack but it turned out to be Stage 4 Interaheptic Cholangiocarinoma (bile duct cancer) He has a huge tumor on his liver and it has metastasized to his lungs his bile ducts so far have remained open no need for stents,he has never been jaundice. This all happened 2 days before Christmas of 2017 and was told he had 3 months to live. He did the chemo cocktail of the Gem/Cis for 7 months when they stopped because of tumor growth,thru out that 7 months he was weak,low platelets needing blood transfusions and alot of aches and pain kinda like flu like symptoms. From there he went to a clinical trial for one of his mutations FGFR2 up to UW Carbone Cancer Center in Madison WI. This mutation was found by sending a sample of the biopsy to Foundation One lab. He was on that trial for 8 months and again tumor growth. Had to do a 1 month "wash out" period and we now are up at Mayo in Rochester too for another clinical trial for the FGFR2 mutation.

     Has a tumor sample been done to for sure say it is gallbladder cancer and has it ever been sent out for tumor mutation findings in case chemo doesn't do the trick then you could try some clinical trials?Gallbladder and Bile Duct cancer are very similar. With the bile duct been blocked just concerning is it really from a past surgery or something else. Of course I don't know all of your history it's just from what you had said it sounds so much like my husband's case and at first they were thinking gallbladder to and from what I have read alot of the time the two get mixed up in diagnoising.

    As for the chemo side of it like I said expect fatigue and aches and pain. My husband never threw up he has some nausea which they gave him very good medicine to stop that. Stay away from sick people-good thing summer is on it's way you'll be out of flu seasons but summer colds can be hell to-get as much sleep as you can get,naps were an everyday thing. Eating at some points may get to eat whatever you to what eat if your appettie goes away but did he did stay away from sugar and ate alot of fruits and vegs just make sure to wash all of these well before eating to get off any chemicals that may be on them also he couldn't eat meat and from what the Drs told us that had to do with the liver and it trying to process it so he ate alot of fish and of course the good ole standby peanut butter sandwich it has a good source of protein. Some people may get mouth sores my husband didn't but our dentist said she had a rinse called "magic mouthwash" that would work wonders. He also liked popsicles but for some cold things made them sick and others hot things made them sick each person is different,but most that I talked to did say food tasted different either too sweet or too salty.

    Sorry for such a long post but alot of what you've said rang true as the same as my husband's type of cancer. I wish you the best and pray for a complete recovery.

  • KCFlash
    KCFlash Member Posts: 23
    #300
    richnkim said:

    Diagnosis?

    Hello KCFlash-first sorry to hear about all the surgies and the pain. Something you wrote caught my eye- you talk about back pain-that is what my husband went to the Dr for was upper back/shoulder pain thinking it was a gallbladder attack but it turned out to be Stage 4 Interaheptic Cholangiocarinoma (bile duct cancer) He has a huge tumor on his liver and it has metastasized to his lungs his bile ducts so far have remained open no need for stents,he has never been jaundice. This all happened 2 days before Christmas of 2017 and was told he had 3 months to live. He did the chemo cocktail of the Gem/Cis for 7 months when they stopped because of tumor growth,thru out that 7 months he was weak,low platelets needing blood transfusions and alot of aches and pain kinda like flu like symptoms. From there he went to a clinical trial for one of his mutations FGFR2 up to UW Carbone Cancer Center in Madison WI. This mutation was found by sending a sample of the biopsy to Foundation One lab. He was on that trial for 8 months and again tumor growth. Had to do a 1 month "wash out" period and we now are up at Mayo in Rochester too for another clinical trial for the FGFR2 mutation.

     Has a tumor sample been done to for sure say it is gallbladder cancer and has it ever been sent out for tumor mutation findings in case chemo doesn't do the trick then you could try some clinical trials?Gallbladder and Bile Duct cancer are very similar. With the bile duct been blocked just concerning is it really from a past surgery or something else. Of course I don't know all of your history it's just from what you had said it sounds so much like my husband's case and at first they were thinking gallbladder to and from what I have read alot of the time the two get mixed up in diagnoising.

    As for the chemo side of it like I said expect fatigue and aches and pain. My husband never threw up he has some nausea which they gave him very good medicine to stop that. Stay away from sick people-good thing summer is on it's way you'll be out of flu seasons but summer colds can be hell to-get as much sleep as you can get,naps were an everyday thing. Eating at some points may get to eat whatever you to what eat if your appettie goes away but did he did stay away from sugar and ate alot of fruits and vegs just make sure to wash all of these well before eating to get off any chemicals that may be on them also he couldn't eat meat and from what the Drs told us that had to do with the liver and it trying to process it so he ate alot of fish and of course the good ole standby peanut butter sandwich it has a good source of protein. Some people may get mouth sores my husband didn't but our dentist said she had a rinse called "magic mouthwash" that would work wonders. He also liked popsicles but for some cold things made them sick and others hot things made them sick each person is different,but most that I talked to did say food tasted different either too sweet or too salty.

    Sorry for such a long post but alot of what you've said rang true as the same as my husband's type of cancer. I wish you the best and pray for a complete recovery.

    Diagnosis?

    Thank you for your comment.   I have been worried about my back pain.    My original surgery was on 2/22 - My gallbladder was removed and cancer was found near the neck of the gallbladder in to the cystic duct.   Not sure how your husbands cancer was found (I am assuming this was in 2016 not 2017).    Since then I have had multiple multiple scans - CT and MRI - End of February which showed no Metasisis - hence the attempted resection on 3/13/2018.    Then I went to Mayo in Rochester for my second opinion - they have looked at all of my pathology as well as the original slides and confirm gallbladder cancer.     Mayo in Rochester required a CT scan with in 4 weeks prior to my appointment so I had that completed on 4/12 and saw the onlcology department on 4/13 - That is the test that showed the residual tumor 12mm x 14mm tumor.     Mayo then proceded to order a PET scan which again did not show metatisis.   Some watch areas - but most likely represent post surgical changes.    I needed the stents placed because the lymph nodes around the main duct were enlarged causing a blockage.    (they feel this is due to post surgical changes as well).    They did not find any cancer in the duct at all it was clear and clean.   The surgery spot from the original gallbladder removal was healed completely.   So I guess that is good news.   

     

    Thanks for the heads up on what to expect with Chemo - Does your huband take pain medicine? what medicine was prescribed.    

    To my knowledge there hasn't been anything done with the Tumor sample - I have my upcoming appointment on Monday starting Chemo on Tuesday I will ask.    

     

  • KCFlash
    KCFlash Member Posts: 23
    #301
    LiliTM said:

    Ask the NIH to research Gallbladder Cancer

    I just saw this opportunity to let the NIH know we need to see more resources put into Gallbladder Cancer research and trials: 

    The National Institute of Health (NIH) is the US government agency that sets priorities and provides funding for a large share of the biomedical research done in the United States. Right now, the NIH is asking the public – patients, healthcare professionals, and researchers – to submit ideas for how to allocate resources via an online initiative called All of Us: 

    Go to the link below and click the "submit new idea" button today. You have until 23 February to present your idea.

    You'll need to register with your email and zip code and then wait for an email so you can verify your account. Once you are in, look for the blue button top right. You only need to fill in the top of the form: your email, your zip code, your question, and then there is a 500 character block for you to write about what you think needs researching. Don't be intimidated by the form! You can leave everything else blank.

    KEYWORDS are really important: Gallbladder, cancer, metastatic, biliary, etc... Type a keyword, then hit return. You will see it appear in the blue box in the keyword field. Then add other terms. 

    Once registered, you can vote for other people's ideas – use the search function to find and vote for every idea or story related to Gallbladder cancer. 

    As a rare cancer, it's rare that research and trials get devoted to Gallbladder Cancer. This is our chance to have them hear our voices. Thank you! 

    https://allofusresearchpriorities.ideascale.com/a/ideas/recent?blm_aid=0

    Ask the NIH to research Gallbladder Cancer

    LilTM - Thanks for all of the support and work you do for those of us battling this disease! -    God Bless you.  

     

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