Bile Duct Cancer

jespinola
jespinola Member Posts: 3
edited March 2014 in Rare and Other Cancers #1
My Dad was diagnosed with Bile Duct Cancer in September. He underwent surgery Sept 21st and had the Whipple Proceedure. The tumor was removed but there are some "atypical cells" located in the branches of the bile duct that flow to the liver. In 10 days he will start chemo and radiation therapy for six weeks. If anyone has information on this type of cancer, please respond.

Are there any clinical trials available in the US

Comments

  • RayLogu
    RayLogu Member Posts: 19
    #2
    Bile duct cancer
    This is indeed one of the rare cancers. I had the whipple in May 2010 and my tumor was at the far end of the bile duct system located in the amupulla. I started the oral chemo (Xeloda) and radiation 8 weeks post op and did ok with the treatment. I am age 77 and the older folks have more difficulty clearing the chemo from their system so I did have some toxcicity from the oral chemo, but the good thing about it is that you take the pill twice a day and if you have side effects, you stop the pill immediately till the side effects subside. I was able to take 70% o the Xeloda. Is now 5 months post op (8 weeks since completing treatments) and I now can honestly say I feel 100% back to normal, still just a bit thinner, but gaining a pound a week and my appetite is very good again. It was suggested that I take Gemzar (infused chemo) after the oral chemo, but this was only for speculation that microscopic cancer cells may still remain. My lab reports and scans showed no evidence of cancer after the first treatments so I opted not to take the infused and enjoy feeling good again. I will see the oncologist every three months for blood work /to check umor markers and keep an eye on my health. The surgeon was encouraged that mine was caught very early and thought he got everything cancerous.
    my VERY best to you and your family!
    Regares, Ray / North Carolina
    email: topnotchplus@yahoo.com
  • maudsie
    maudsie Member Posts: 54
    #3
    RayLogu said:

    Bile duct cancer
    This is indeed one of the rare cancers. I had the whipple in May 2010 and my tumor was at the far end of the bile duct system located in the amupulla. I started the oral chemo (Xeloda) and radiation 8 weeks post op and did ok with the treatment. I am age 77 and the older folks have more difficulty clearing the chemo from their system so I did have some toxcicity from the oral chemo, but the good thing about it is that you take the pill twice a day and if you have side effects, you stop the pill immediately till the side effects subside. I was able to take 70% o the Xeloda. Is now 5 months post op (8 weeks since completing treatments) and I now can honestly say I feel 100% back to normal, still just a bit thinner, but gaining a pound a week and my appetite is very good again. It was suggested that I take Gemzar (infused chemo) after the oral chemo, but this was only for speculation that microscopic cancer cells may still remain. My lab reports and scans showed no evidence of cancer after the first treatments so I opted not to take the infused and enjoy feeling good again. I will see the oncologist every three months for blood work /to check umor markers and keep an eye on my health. The surgeon was encouraged that mine was caught very early and thought he got everything cancerous.
    my VERY best to you and your family!
    Regares, Ray / North Carolina
    email: topnotchplus@yahoo.com

    Hi Ray. I just wondered
    Hi Ray. I just wondered where you are in NC. I have gallbladder cancer, and I have had the same treatment as you (fairly common regimen). I go to Duke. How about you? And how are you doing? when is your next scan/bloodwork?
    Maudsie
  • RayLogu
    RayLogu Member Posts: 19
    #4
    maudsie said:

    Hi Ray. I just wondered
    Hi Ray. I just wondered where you are in NC. I have gallbladder cancer, and I have had the same treatment as you (fairly common regimen). I go to Duke. How about you? And how are you doing? when is your next scan/bloodwork?
    Maudsie

    Ray's Whipple in NC
    I had my surgery at Presbyterian Hospital/Charlotte, NC. The process of finding the
    problem and referral for surgery went so quick that I really didn't give a 2nd thought to
    checking around for other docs. Dr. Peter Turk did my surgery, he is an oncology surgeon. I was very fortunate that my condition was diagnosed very early and was told after surgery that all other organs look normal, follow up post op treatment would be based on biopsy reports. I had one positive lymph node (regional node) and the ampulla mass was positive in the interior. Margins of nodes and mass were negative which is good. I tolerated the Xeloda with some side effects and declined the Gemzar. I feel so good at this point, after the recovery from surgery and struggling with the Xeloda and radiation side effects it is great to feel normal again. I feel sooo fortunate not to have had any pain or discomfort, as I read so many others are not so fortunate. I will have a scan on 1/2/11 and blood work for the tumor marker on 1/3/11. I had a full blood workup by my internist
    this week and everything was normal. The oncologist did a scan and tumor marker in Sept at the conclusion of the Xeloda and radiation and both were fine, he said he wants the one in Jan to have a baseline representing the radiated area after it has healed. After this scan I will have follow up lab and scans every 3 months in '11 and them every 6 months the next year.
    I hope you are doing well and continue to get good reports!
    Regards and my best to you, Ray
  • renatka
    renatka Member Posts: 7
    #5
    RayLogu said:

    Bile duct cancer
    This is indeed one of the rare cancers. I had the whipple in May 2010 and my tumor was at the far end of the bile duct system located in the amupulla. I started the oral chemo (Xeloda) and radiation 8 weeks post op and did ok with the treatment. I am age 77 and the older folks have more difficulty clearing the chemo from their system so I did have some toxcicity from the oral chemo, but the good thing about it is that you take the pill twice a day and if you have side effects, you stop the pill immediately till the side effects subside. I was able to take 70% o the Xeloda. Is now 5 months post op (8 weeks since completing treatments) and I now can honestly say I feel 100% back to normal, still just a bit thinner, but gaining a pound a week and my appetite is very good again. It was suggested that I take Gemzar (infused chemo) after the oral chemo, but this was only for speculation that microscopic cancer cells may still remain. My lab reports and scans showed no evidence of cancer after the first treatments so I opted not to take the infused and enjoy feeling good again. I will see the oncologist every three months for blood work /to check umor markers and keep an eye on my health. The surgeon was encouraged that mine was caught very early and thought he got everything cancerous.
    my VERY best to you and your family!
    Regares, Ray / North Carolina
    email: topnotchplus@yahoo.com

    RayLogu
    if I were you I would ask doc about chemo.I was taking Nexavar almost for 2 years.In july I found that I have small nodules in my liver and lungs.This cancer likes to come back.
  • RayLogu
    RayLogu Member Posts: 19
    #6
    renatka said:

    RayLogu
    if I were you I would ask doc about chemo.I was taking Nexavar almost for 2 years.In july I found that I have small nodules in my liver and lungs.This cancer likes to come back.

    chemo
    If I were younger I would possibly consider more chemo,(I'm 77) but having had some side effects with the xeloda (oral chemo) and radiation, once that was finished I wanted to gain weight and start feeling good again. Which is where I am now 6 months post op, feeling great, gaining weight and enjoying life. Also I had calcification of the aortic valve from the radiation and chemo and did not want to risk more organ damage. Sometimes the cure causes more problems than the disease.

    regards, ray
  • LeeandShirley
    LeeandShirley Member Posts: 122 Member
    #7
    RayLogu said:

    chemo
    If I were younger I would possibly consider more chemo,(I'm 77) but having had some side effects with the xeloda (oral chemo) and radiation, once that was finished I wanted to gain weight and start feeling good again. Which is where I am now 6 months post op, feeling great, gaining weight and enjoying life. Also I had calcification of the aortic valve from the radiation and chemo and did not want to risk more organ damage. Sometimes the cure causes more problems than the disease.

    regards, ray

    Chemo
    I was wondering how things were going for you? My husband had a resection with clean margins in Sept. of 2010 His surgeon said the size of the tumor was a little larger than he had expected from the scans, but the margins being clear of malignancy, told him he got it all. Scans in Sept. post surgery and December, showed no other signs of cancer. He even suggested we not need chemo at all. The oncologist agreed. In April 2011 he went for a 3 month check up and CAT scan. The cancer was all over his liver and into abdominal lymph nodes. He is now stage 4 unresectable liver cancer and the ONLY chance he has is the chemo. When we asked how could this show up when there seemed to be none, he said it was there but was too small to show up on the scans. Once he had the surgery, his immune system was compromised, and the cancer became opportunistic. I'm not a doctor and can't suggest treatment, but the other guy who said this cancer "likes to come back", was right. There are microscopic cells that will want to regrow. I'd just think about the further chemo, because I believe the drug you were offered has few side effects.
    Just the same, hope all is still well with you.
    Shirley

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