Bile duct cancer

rowena32
rowena32 Member Posts: 18
edited March 2014 in Liver Cancer #1
I was diagnosed with bile duct cancer in July 2009. When I had the ERCP, a stent was put in one of the ducts. I was told that the outlook for this type of cancer is not good. I have had chemo (genzar) and radiation. After my last treatment, I had a CT scan and it showed that the cancer had not changed. My oncologist wants to do more chemo. I have been trying to find an oncologist that has dealt with bile duct cancer but am having a hard time getting a reference. I am wondering if I should go with more chemo or try an alternative treatment like diet and supplements. Also, if any of you know an oncologist in California that specializes in bile duct cancer. What kind of treatments have you had?

Comments

  • jas5
    jas5 Member Posts: 2
    #2
    Bile duct cancer
    Hi I also have Bile duct cancer that was diagnosed in june 2008 they removed 40% of my liver.They said they got it all but On my last scan it showed 5 little spots they are not sure what it is yet. Did you have surgery or did they say it was inoperable? were you staged? if so what stage. We have some very good cancer clinics in Texas did any doctors offer liver transplant my doctors said possible transplant if needed. We are still learning about this rare cancer.
  • rowena32
    rowena32 Member Posts: 18
    #3
    jas5 said:

    Bile duct cancer
    Hi I also have Bile duct cancer that was diagnosed in june 2008 they removed 40% of my liver.They said they got it all but On my last scan it showed 5 little spots they are not sure what it is yet. Did you have surgery or did they say it was inoperable? were you staged? if so what stage. We have some very good cancer clinics in Texas did any doctors offer liver transplant my doctors said possible transplant if needed. We are still learning about this rare cancer.

    bile duct cancer
    My cancer is inoperable. I have sent my reports to two surgeons - one to UC San Diego Medical Center and to UC San Francisco Medical Center and they said it was inoperable, same as the gastroentrologist had told me. I am not a candidate for a transplant either. No, I was not staged as the gastroentrologist said he didn't like staging nor did he want to give a time period as to how long that I have. I am to have another blood test in three weeks and start chemo, again. I read that Gemzar with a combination of Cisplatin results were better than Gemzar alone. I don't know why my doctor did not do this. That is why I would like to find another oncologist. One that is more up-to-date about bile duct cancer.
  • peter888
    peter888 Member Posts: 3
    #4
    rowena32 said:

    bile duct cancer
    My cancer is inoperable. I have sent my reports to two surgeons - one to UC San Diego Medical Center and to UC San Francisco Medical Center and they said it was inoperable, same as the gastroentrologist had told me. I am not a candidate for a transplant either. No, I was not staged as the gastroentrologist said he didn't like staging nor did he want to give a time period as to how long that I have. I am to have another blood test in three weeks and start chemo, again. I read that Gemzar with a combination of Cisplatin results were better than Gemzar alone. I don't know why my doctor did not do this. That is why I would like to find another oncologist. One that is more up-to-date about bile duct cancer.

    bile duct cancer
    my mum has bile duct cancer had a stent put in its blocked with gallstones shes very jaundice shes never had any cancer treatment been sent home from hospital now told there is nothing more they can do 4 her she is 68 years old i dont want to lose my mum is there anything else i can do 4 her shes been told the cancer has spread to her lungs now has well is there anybody out there that can help me
  • rowena32
    rowena32 Member Posts: 18
    #5
    peter888 said:

    bile duct cancer
    my mum has bile duct cancer had a stent put in its blocked with gallstones shes very jaundice shes never had any cancer treatment been sent home from hospital now told there is nothing more they can do 4 her she is 68 years old i dont want to lose my mum is there anything else i can do 4 her shes been told the cancer has spread to her lungs now has well is there anybody out there that can help me

    Bile duct cancer
    Peter, so sorry to hear about your mom. First thing I would do is a lot of praying. I don't know where you live but I would take her to another doctor for a second opinion. I, also, called several large hospitals to see what kind of treatment they could offer me. Even though, they all gave me about the same option, chemo, and they agreed it was inoperatable. I am still looking for a doctor who can help me. I, too, was jaundice, but the stent helped with that. My ducts were closing because of the cancer and not the gallstones. It is very scary to know there is so little hope for this kind of cancer, but we must have hope. I try to keep my spirits up and I do a lot of talking to God. I have two sons and five grandchildren and I am not ready to give up. Don't let your mom give up, either.
  • peter888
    peter888 Member Posts: 3
    #6
    rowena32 said:

    Bile duct cancer
    Peter, so sorry to hear about your mom. First thing I would do is a lot of praying. I don't know where you live but I would take her to another doctor for a second opinion. I, also, called several large hospitals to see what kind of treatment they could offer me. Even though, they all gave me about the same option, chemo, and they agreed it was inoperatable. I am still looking for a doctor who can help me. I, too, was jaundice, but the stent helped with that. My ducts were closing because of the cancer and not the gallstones. It is very scary to know there is so little hope for this kind of cancer, but we must have hope. I try to keep my spirits up and I do a lot of talking to God. I have two sons and five grandchildren and I am not ready to give up. Don't let your mom give up, either.

    bile duct cancer
    hi rowena my mums very yellow she never any chemo or radition treatment they sais the stent blocked with stones in no there is treatment 4 it but they lead us to belive my mam is not strong enough maybe she is not but they gave up she did not we live in england and all the treatment is on the nhs we dont pay 4 it i think they just decided me mam was to old being 68 my mams orignal doc was on annual leve wen the other doctots decided they cud do no more im going to ring him next weeki if only they cud get this stent unblocked think she might feel better so sorry to only talk about my mam hope u go on ok my name is ann i onlys use my boyfreinds name thoy its my mum thats ill not petes thanks bye x
  • Joys Network
    Joys Network Member Posts: 6
    #7
    The Cholangiocarcinoma Foundation at cholangiocarcinoma.org may be a good resource for you. Best of luck to you.
  • Joys Network
    Joys Network Member Posts: 6
    #8
    peter888 said:

    bile duct cancer
    hi rowena my mums very yellow she never any chemo or radition treatment they sais the stent blocked with stones in no there is treatment 4 it but they lead us to belive my mam is not strong enough maybe she is not but they gave up she did not we live in england and all the treatment is on the nhs we dont pay 4 it i think they just decided me mam was to old being 68 my mams orignal doc was on annual leve wen the other doctots decided they cud do no more im going to ring him next weeki if only they cud get this stent unblocked think she might feel better so sorry to only talk about my mam hope u go on ok my name is ann i onlys use my boyfreinds name thoy its my mum thats ill not petes thanks bye x

    Hi Ann, I am so sorry to
    Hi Ann, I am so sorry to hear about your mom. I lost my mother to cholangiocarcinoma in August. She was diagnosed at stage IV, inoperable as a tumor had nearly covered her liver and tumors were found in her lungs as well. She was only 57 years old and the doctors told us there was nothing they could do but give her chemo treatments to hopefully slow the cancer's growth. The chemo did nothing but make my mother very sick. It did not slow the cancer's growth and she passed away 2.5 months after her initial diagnosis. Doctors are so unfamiliar with this type of cancer - they really do not know what to do as each treatment affects each patient differently. I hope you experience a happier outcome. Just try to make her as comfortable as possible and let her know how much you love her. Those are the most important things you can do.
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #9
    Joys Network said:

    The Cholangiocarcinoma Foundation at cholangiocarcinoma.org may be a good resource for you. Best of luck to you.

    Hi Rowena and Peter, My dad
    Hi Rowena and Peter, My dad has just survived esophageal cancer, has now just had a blocked bile duct, fixed with stent, and now has lesions on his liver. He has to make the decision about the chemo. It will be given through the vain, two treatments 3 weeks apart. The two chemos they will be using are called irinotecan and cisplatin. Has anyone here had this chemo before? And what were the side effects and results? We are new to this cancer. Any and all help is appreciated.
    Tina
  • rowena32
    rowena32 Member Posts: 18
    #10
    Tina Blondek said:

    Hi Rowena and Peter, My dad
    Hi Rowena and Peter, My dad has just survived esophageal cancer, has now just had a blocked bile duct, fixed with stent, and now has lesions on his liver. He has to make the decision about the chemo. It will be given through the vain, two treatments 3 weeks apart. The two chemos they will be using are called irinotecan and cisplatin. Has anyone here had this chemo before? And what were the side effects and results? We are new to this cancer. Any and all help is appreciated.
    Tina

    Hi, Tina
    So sorry to hear about your dad. I just finished a round of chemo the last of November. They gave me a small dose of Genzar, once a week for 6 weeks. I, also, had radiation at the same time for everyday for 6 weeks. It did not make any difference in the size of my cancer.
    Now he wants to start more chemo. I have read where genzar given with cisplatin gives better results. I am trying to find a doctor in California who has treated bile duct cancer and hope that he will have other options. I have been told there are no other options but chemo and radiation, since my cancer is inopertable. Since I had such low doses, I had very little side effects. I had some nausea and rather not eat, so I ate lots of fruits and soups. I did not have any pain besides them trying to find my veins, but did get tired sometimes in the evenings. I did not lose my hair.
    I'm afraid the second time around may not be as easy.
    I wish the best for your dad. Do let me know if the irinotecan and cisplatin helps your dad. I am looking for all the information I can get.
  • rowena32
    rowena32 Member Posts: 18
    #11
    Joys Network said:

    The Cholangiocarcinoma Foundation at cholangiocarcinoma.org may be a good resource for you. Best of luck to you.

    Joys Network
    Joy, sorry to hear about your mother. I just found out about cholangiocarcinoma.org and have found it to have some good information. I found the name of a doctor who treats bile duct cancer on that site, so I have sent him my records, hoping he will see me. All we can do is pray and try to find out as much as we can about this awful cancer. We can learn from each other.
    May God bless you.
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #12
    rowena32 said:

    Joys Network
    Joy, sorry to hear about your mother. I just found out about cholangiocarcinoma.org and have found it to have some good information. I found the name of a doctor who treats bile duct cancer on that site, so I have sent him my records, hoping he will see me. All we can do is pray and try to find out as much as we can about this awful cancer. We can learn from each other.
    May God bless you.

    Thanks!
    Hey Rowena,
    Thanks for your response. Good luck with your search. You have great ambition and determination. I will keep you updated on my dad. As far as today he is going through with the chemo treatments starting 1/19. Knowing my dad as well as I do, I know he will be changing his mind a few times. I do not blame him. I want us to go down fighting, not giving up. We do have an agreement, no giving up until the drs give up. Keep us posted too about your progress.
    Tina
  • rowena32
    rowena32 Member Posts: 18
    #13
    Tina Blondek said:

    Thanks!
    Hey Rowena,
    Thanks for your response. Good luck with your search. You have great ambition and determination. I will keep you updated on my dad. As far as today he is going through with the chemo treatments starting 1/19. Knowing my dad as well as I do, I know he will be changing his mind a few times. I do not blame him. I want us to go down fighting, not giving up. We do have an agreement, no giving up until the drs give up. Keep us posted too about your progress.
    Tina

    bile duct cancer
    Tina, don't give up even if you think the doctors giving up. My CT scan came back six weeks ago after my treatments, not looking good. I went to the gastroentrologist that had put in the stent and he did not want to answer any of my questions. He answered them by telling me to ask the oncologist. I asked about making another follow-up appointment and he said he didn't think that would be necessary. What a blow that was! I went to the oncologist and after I got a copy of the report, I could see that it did not look good, I called and wanted to ask some questions and he said we would talk about it in a month after I have another CT scan. Another blow! I was not going to sit around, so I made an appointment with another oncologist and she went over my CT scan and explained that it did not look that bad. The new spot on the liver could be a cyst and the fluid around the gallbladder did not mean it was cancer and the fluid would probably go away. I did have another CT scan just before Christmas and the new spot was gone and so was the fluid around the gallbladder. I am far from being home-free, but I felt like the first doctors were giving up. So, we can not give up. God has the last decision, not the doctors, so keep the faith and keep fighting.
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #14
    rowena32 said:

    bile duct cancer
    Tina, don't give up even if you think the doctors giving up. My CT scan came back six weeks ago after my treatments, not looking good. I went to the gastroentrologist that had put in the stent and he did not want to answer any of my questions. He answered them by telling me to ask the oncologist. I asked about making another follow-up appointment and he said he didn't think that would be necessary. What a blow that was! I went to the oncologist and after I got a copy of the report, I could see that it did not look good, I called and wanted to ask some questions and he said we would talk about it in a month after I have another CT scan. Another blow! I was not going to sit around, so I made an appointment with another oncologist and she went over my CT scan and explained that it did not look that bad. The new spot on the liver could be a cyst and the fluid around the gallbladder did not mean it was cancer and the fluid would probably go away. I did have another CT scan just before Christmas and the new spot was gone and so was the fluid around the gallbladder. I am far from being home-free, but I felt like the first doctors were giving up. So, we can not give up. God has the last decision, not the doctors, so keep the faith and keep fighting.

    Rowena,
    Thanks for some more
    Rowena,
    Thanks for some more useful info! Wow...you have been through a whole lot. Smart of you to keep getting more opinions. My dad has decided to wait on starting his chemo. He is still recovering from the esophagus stent and bile duct stent. He is tired and weak. I spoke with his ongologist this morning, he agreed that we are making a smart decision. We will wait another 3 weeks and see how dad feels then. It is true that when some drs give up, others do not. Best of luck to you! Keep us posted.
    Tina
  • LauraCAC
    LauraCAC Member Posts: 2
    #15
    rowena32 said:

    Bile duct cancer
    Peter, so sorry to hear about your mom. First thing I would do is a lot of praying. I don't know where you live but I would take her to another doctor for a second opinion. I, also, called several large hospitals to see what kind of treatment they could offer me. Even though, they all gave me about the same option, chemo, and they agreed it was inoperatable. I am still looking for a doctor who can help me. I, too, was jaundice, but the stent helped with that. My ducts were closing because of the cancer and not the gallstones. It is very scary to know there is so little hope for this kind of cancer, but we must have hope. I try to keep my spirits up and I do a lot of talking to God. I have two sons and five grandchildren and I am not ready to give up. Don't let your mom give up, either.

    how are you?
    I hope that this email finds you well. I just joined the group as my Mother in Law was diagnosed with stage 4 inoperable bile duct cancer in April of 2010. We are helping her fight and find more information.

    Thinking and praying,
    Laura
  • c schmancer
    c schmancer Member Posts: 1
    #16
    Bile duct: friend in hospice; any1 know most advanced therapy?

    My friend and his wife are determined it's all over. I don't know the kind of chemo he's done, but I doubt it's the most advanced. My friend and I just had a big "discussion" b/c she maintains that if I were going to say anything re options for treatment I should've done so earlier; that's true, and I agree, but I was in the midst of my own crisis, and less than a week ago they had a big celebration b/c his markers were good! Now he's in hospice with an infetion, liver failure, and an inoperable (supposedly) cancer that I think would be operable w/the light treatment.

    Which doctors are doing the new treatment? The link I found that referenced this, here:

    http://www.medicalhealthtests.com/diseases-and-tests/cancer/bile-duct-cancer.html

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