Cholangiocarcinoma

med1943
med1943 Member Posts: 6
edited March 2014 in Liver Cancer #1
In August of 2007, I made an appointment with my doctor because my urine was bright almost neon yellow, my bowels were clay color and I would become very fatigued when I exercised. These were the first symtoms of the disease. Upon seeing my doctor, he told me my skin was very yellow, which I had not noticed and my tongue was covered with a yellowish coating, also gone unnoticed. I had no pain of any kind. He ordered a catscan which showed I had a tumor at the juntion of the bile duct going into the liver. Very little bile was getting through. After many ERCPs at Providence Hospital in Anchorage and a few at the Virgina Mason Clinic in Seattle, the doctors managed to insert two stents into my bile duct so bile could flow through. Every biospy of the tumor, about four, were benign. Through all of these tests, I started getting chest pain and the more they did tests, the more severe the pain became. After several trips to Virgina Mason, the surgeon decided to remove the bile duct with the tumor in it and my gall bladder. He also removed a few lymp nodes. The small intestine was attached to my liver, assuming a bile duct. As it turned out, the tumor was malignant but the lymp nodes were fine. I was diagnosed with cholangiocarcinoma. After 10 days in the hospital, I came back to Anchorage and recovered from the surgery and started radiation and chemo therapy. I've had three catscans and the same number of PET scans since July 2008 to January 2009. Everything looks good so far. But the chest pain still continues. I have since talked to a medical person and they said it could be nerve damage from all of the tests. The doctors cannot figure out what causes the chest pain. Does anyone have any idea what could be causing this chest pain? I am a female and 66 years old and sometimes I don't think the doctors really listen. Maria
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Comments

  • schrums4
    schrums4 Member Posts: 2
    my husband is just now
    my husband is 45 and just now recovering from the same surgery at UPMC in Pa. He had his surgery May 8th and is still in the hospital. He also ahs complained on and off of chest pains. They did do an ekg but it came back normal. /just wandering if you had any problems with bile leaks after your surgery? He has alot of drainage from his right side bag.
  • ranger44
    ranger44 Member Posts: 3
    schrums4 said:

    my husband is just now
    my husband is 45 and just now recovering from the same surgery at UPMC in Pa. He had his surgery May 8th and is still in the hospital. He also ahs complained on and off of chest pains. They did do an ekg but it came back normal. /just wandering if you had any problems with bile leaks after your surgery? He has alot of drainage from his right side bag.

    Cholangiocarcinoma
    I was just diagnosed with cholangiocarcinoma and am 35 years old and in good shape. I don't know what stage the cancer is in but am presenting jaundice which seems to indicate that it's in the latter stages but I'm not sure. I'm trying to do as much research as possible prior to the battery of tests coming to prepare myself for whatever may come.

    Does anyone have any information or suggestions?

    Thanks.
  • ranger44
    ranger44 Member Posts: 3

  • Lau
    Lau Member Posts: 1
    ranger44 said:

    Cholangiocarcinoma
    I was just diagnosed with cholangiocarcinoma and am 35 years old and in good shape. I don't know what stage the cancer is in but am presenting jaundice which seems to indicate that it's in the latter stages but I'm not sure. I'm trying to do as much research as possible prior to the battery of tests coming to prepare myself for whatever may come.

    Does anyone have any information or suggestions?

    Thanks.

    CC
    Hi

    My name is Laura, and I'm doing my MA in research. I've compiled some information, with reference to my dad's case. I've also checked up on the Wikipedia page, and it accurately represents the research!

    My father was diagnosed with a Klatskin's Cholangiocarcinoma about a month ago. He is 63, and until about 2 months ago, he looked 50. He was healthy, happy and active; he is now having temporary percutaneous brachytherapy at a high dose rate (they insert an irradiated iridium seed via the tubes sticking out of his sides to the cancer site for about an hour for a given number of sessions). This is done to keep the bile duct patent or open so that bile can flow through the duct into the small intestine. In my father's case, the obstruction of the duct was complete; his jaundice and generalised itching, the first symptoms, alerted us to the problem. With complete obstruction of the bile duct (it's called the Common Bile Duct where the doctors think my dad's tumour is), the bile builds up and moves into the blood stream. From the blood, it gets into cells of the body, giving the patient jaundice (the whites of the eyes yellow too). It also starts to poison the liver, hence the need for radiation and stenting to keep the bile duct patent.

    To get to the diagnosis (bearing in mind we are in a third world country, South Africa, and specialists are available but overworked) we had three ERCPs, several X-rays, a sonograph (abdominal ultrasound) and exploratory surgery. My dad's KCC is inoperable (or nonresectable), so his prognosis is poor. We think the next step will be chemo; we are also looking into photodynamic therapy (an experimental therapy that has shown promising results but may only be available in specific hospitals in the USA) and liver transplant. I am not optimistic.

    In your case, I think the most important thing to find out is whether or not it is operable. The fact that you have jaundice does not necessarily mean you are far along. I would guess your treatment will be much like my father's (without the hiccups caused by lack of experience in the therapy types!): radiation (external beam or brachytherapy) and chemotherapy; these are used in conjunction with resection (surgical removal) as adjuvant therapy (post-op) or as palliative treatment (non-curative). The radiation is not too bad; with the Synap Forte our doctors prescribed, my father has managed the nausea and pain 90% of the time! Unfortunately, CC is a difficult cancer; our doctors in SA don't have much experience with it, so we're in a bad place to have cancer! But the USA has some of the best medical research and facilities and frankly, is the best place to get cancer!

    Hope this helps,
    Laura
  • mahipal
    mahipal Member Posts: 2
    your chest pain causes
    It is possible that the chest pain may be becuase of the nerve damage or alternativly there may be some kind of bile leak or sero sanginous discharge which might have been collected beneath the diaghphram and liver and later fibrosed which may some times cause pain in the chest more so on exertion and deep breathing or moovements . and this cannot be detected in usscan or mri or ct if the area is small . all the same you dont have to take it serious it is a small thing will settle down early. Dr Mahipal reddy
  • mahipal
    mahipal Member Posts: 2
    schrums4 said:

    my husband is just now
    my husband is 45 and just now recovering from the same surgery at UPMC in Pa. He had his surgery May 8th and is still in the hospital. He also ahs complained on and off of chest pains. They did do an ekg but it came back normal. /just wandering if you had any problems with bile leaks after your surgery? He has alot of drainage from his right side bag.

    chest pain post surgery
    Bile leak post liver resection or biliary surgery is very common and it settles down in 8 weeks of time. the chest pain here could be becuase of the sub diaphramatic fluid collecion or serous or bile colection in due course of time mostly setel by it self with good antibiotics and drainanges . iam wondering the bile might have stopped by now
    Dr Mahipal reddy
  • med1943
    med1943 Member Posts: 6
    mahipal said:

    your chest pain causes
    It is possible that the chest pain may be becuase of the nerve damage or alternativly there may be some kind of bile leak or sero sanginous discharge which might have been collected beneath the diaghphram and liver and later fibrosed which may some times cause pain in the chest more so on exertion and deep breathing or moovements . and this cannot be detected in usscan or mri or ct if the area is small . all the same you dont have to take it serious it is a small thing will settle down early. Dr Mahipal reddy

    Chest Pain
    Thank you for responding to my question. Again the chest pain started after the first ERCP. Several more ERCPs were done and the chest pain grew worse. The chest pain continued for nearly a year. It was more painful than the surgery itself. It has improved over the last six months and because of a recent high level on a CA19-9, I returned to Virgina Mason to have an ERCP done so they could view the bile ducts in my liver. No cancer, thank god.

    Upon waking from the ERCP, the pain was so severe in my chest, my blood pressure was 189 over 98 and climbing. I told the nurse I needed to stand to relieve the pain. Once standing, my blood pressure went down some. I had to take a pain pill and lorazpam and started to feel better.
  • med1943
    med1943 Member Posts: 6
    schrums4 said:

    my husband is just now
    my husband is 45 and just now recovering from the same surgery at UPMC in Pa. He had his surgery May 8th and is still in the hospital. He also ahs complained on and off of chest pains. They did do an ekg but it came back normal. /just wandering if you had any problems with bile leaks after your surgery? He has alot of drainage from his right side bag.

    bile duct cancer
    No, I didn't have bile leaks. My bile duct was removed with the tumor in it, as well as my gall bladder and a few lymp nodes. Small intestine was attached to bile duct in the liver. There doesn't seem to be an answer for my chest pain.
  • med1943
    med1943 Member Posts: 6
    ranger44 said:

    Cholangiocarcinoma
    I was just diagnosed with cholangiocarcinoma and am 35 years old and in good shape. I don't know what stage the cancer is in but am presenting jaundice which seems to indicate that it's in the latter stages but I'm not sure. I'm trying to do as much research as possible prior to the battery of tests coming to prepare myself for whatever may come.

    Does anyone have any information or suggestions?

    Thanks.

    Cholangiocarcinoma
    My first suggestion is to get yourself to a Virginia Mason Clinic. At age 64, I was diagnosed with cholangiocarcinoma. My tumor was in the bile duct outside of the liver so they were able to do a resection (at Virginia Mason). I am doing well, it's been 19 months since the surgery. I live in Anchorage, AK and there is a big difference in medical care between here and Seattle. After my surgery in Seattle, I went through chemo and radiation. It was tough, but I made it. Good Luck to you.
  • sandysharer
    sandysharer Member Posts: 2
    Cholangiocarcinoma
    It's nice to know that you are doing so well. My husband was diagnosed with Cholangiocarcinoma on July 18, 2009. He was transferred to the Mayo Clinic from a hospital in St. Paul, MN. We were told by the doctors at Mayo that his tumor is inoperable because it is in the neck (junction) of the bile duct. A stint was successfully inserted in the bile duct to aid in the flow of bile. We were also told that this type of cancer is unresponsive to chemo. They gave him 6-12 months to enjoy life. My husband is 56 and very healthy. He wasn't feeling well for a couple of weeks and then the color of his urine and stools changed and he became jaundice. He's taking Oxycotin to help with pain. I wish you well in your journey.
  • med1943
    med1943 Member Posts: 6

    Cholangiocarcinoma
    It's nice to know that you are doing so well. My husband was diagnosed with Cholangiocarcinoma on July 18, 2009. He was transferred to the Mayo Clinic from a hospital in St. Paul, MN. We were told by the doctors at Mayo that his tumor is inoperable because it is in the neck (junction) of the bile duct. A stint was successfully inserted in the bile duct to aid in the flow of bile. We were also told that this type of cancer is unresponsive to chemo. They gave him 6-12 months to enjoy life. My husband is 56 and very healthy. He wasn't feeling well for a couple of weeks and then the color of his urine and stools changed and he became jaundice. He's taking Oxycotin to help with pain. I wish you well in your journey.

    Cholangiocarcinoma
    My tumor was at the at the juction and I was told it was inoperable by my doctor in Anchorage, and that I had a year to live. I went to Virginia Mason Clinic in Seattle and saw surgeon Dr. Biehl. After about three trips from Anchorage to Seattle, it was determined the bile duct with the tumor in it, could be completely removed and the small intestine could be attached to the liver so the bile could flow through. I came through the surgery well, and I did have chemo and radiation (hopefully it did some good) in Anchorage. Everything seems to be working well. The surgery was done on 12/4/2007 and so far I am doing very well. My doctor in Anchorage has a CAT scan done every three months. So far everything looks good. I wish you and your husband well. Prayers and a good attitude is the best advice I can give. Maria
  • clkempf
    clkempf Member Posts: 5

    Cholangiocarcinoma
    It's nice to know that you are doing so well. My husband was diagnosed with Cholangiocarcinoma on July 18, 2009. He was transferred to the Mayo Clinic from a hospital in St. Paul, MN. We were told by the doctors at Mayo that his tumor is inoperable because it is in the neck (junction) of the bile duct. A stint was successfully inserted in the bile duct to aid in the flow of bile. We were also told that this type of cancer is unresponsive to chemo. They gave him 6-12 months to enjoy life. My husband is 56 and very healthy. He wasn't feeling well for a couple of weeks and then the color of his urine and stools changed and he became jaundice. He's taking Oxycotin to help with pain. I wish you well in your journey.

    Is your husband still hanging in there?
    Reading your site.. this am.
    I am wondering if your husband is still with us or has he passed on? 2 days ago I was suppose to pass my 6 months are over...I am in this stage too. My urine and stool are still ok, no itching so far, and so far everything is a go. Had a Sir-Sphere and chemoembolization last december, just waiting until next visit to Mayo to see if it is working...so far I know the tumors are shrinking, but will it give me longer life? I have no clue. I can only give it to God and pray for a healthy life. I am only 53. Sending prayers to your family.
  • LauraCAC
    LauraCAC Member Posts: 2
    Lau said:

    CC
    Hi

    My name is Laura, and I'm doing my MA in research. I've compiled some information, with reference to my dad's case. I've also checked up on the Wikipedia page, and it accurately represents the research!

    My father was diagnosed with a Klatskin's Cholangiocarcinoma about a month ago. He is 63, and until about 2 months ago, he looked 50. He was healthy, happy and active; he is now having temporary percutaneous brachytherapy at a high dose rate (they insert an irradiated iridium seed via the tubes sticking out of his sides to the cancer site for about an hour for a given number of sessions). This is done to keep the bile duct patent or open so that bile can flow through the duct into the small intestine. In my father's case, the obstruction of the duct was complete; his jaundice and generalised itching, the first symptoms, alerted us to the problem. With complete obstruction of the bile duct (it's called the Common Bile Duct where the doctors think my dad's tumour is), the bile builds up and moves into the blood stream. From the blood, it gets into cells of the body, giving the patient jaundice (the whites of the eyes yellow too). It also starts to poison the liver, hence the need for radiation and stenting to keep the bile duct patent.

    To get to the diagnosis (bearing in mind we are in a third world country, South Africa, and specialists are available but overworked) we had three ERCPs, several X-rays, a sonograph (abdominal ultrasound) and exploratory surgery. My dad's KCC is inoperable (or nonresectable), so his prognosis is poor. We think the next step will be chemo; we are also looking into photodynamic therapy (an experimental therapy that has shown promising results but may only be available in specific hospitals in the USA) and liver transplant. I am not optimistic.

    In your case, I think the most important thing to find out is whether or not it is operable. The fact that you have jaundice does not necessarily mean you are far along. I would guess your treatment will be much like my father's (without the hiccups caused by lack of experience in the therapy types!): radiation (external beam or brachytherapy) and chemotherapy; these are used in conjunction with resection (surgical removal) as adjuvant therapy (post-op) or as palliative treatment (non-curative). The radiation is not too bad; with the Synap Forte our doctors prescribed, my father has managed the nausea and pain 90% of the time! Unfortunately, CC is a difficult cancer; our doctors in SA don't have much experience with it, so we're in a bad place to have cancer! But the USA has some of the best medical research and facilities and frankly, is the best place to get cancer!

    Hope this helps,
    Laura

    Your Dad?
    Hi Laura,
    I just joined as my 63 year old Mother in Law was diagnosed with Stage 4 bile duct cancer. Just looking for information and answers. I hope that this finds your Dad doing well.

    Thanks,
    Laura
  • nanonano88
    nanonano88 Member Posts: 4

    Cholangiocarcinoma
    It's nice to know that you are doing so well. My husband was diagnosed with Cholangiocarcinoma on July 18, 2009. He was transferred to the Mayo Clinic from a hospital in St. Paul, MN. We were told by the doctors at Mayo that his tumor is inoperable because it is in the neck (junction) of the bile duct. A stint was successfully inserted in the bile duct to aid in the flow of bile. We were also told that this type of cancer is unresponsive to chemo. They gave him 6-12 months to enjoy life. My husband is 56 and very healthy. He wasn't feeling well for a couple of weeks and then the color of his urine and stools changed and he became jaundice. He's taking Oxycotin to help with pain. I wish you well in your journey.

    I am so sorry to read about
    I am so sorry to read about your husband. My husband passed away in January of Cholangiocarcinoma. He too was told his was inoperable and that our only hope was chemo and that was to just prolong his life. It didn't prolong his life, it only made him very ill. I pray that your husband will enjoy his life whatever time he has left. My husband was 57. The only sign that he had was that his stomache felt as though there was a brick in it everytime he would eat. Upon having a ultrasound they discovered spots on his liver.
    Should your husbands stomache start to swell and he has increased pain insist on the doctor draining the fluids from his stomache. It does help the pain. I will keep you and your family in my prayers.
  • seli
    seli Member Posts: 5

    I am so sorry to read about
    I am so sorry to read about your husband. My husband passed away in January of Cholangiocarcinoma. He too was told his was inoperable and that our only hope was chemo and that was to just prolong his life. It didn't prolong his life, it only made him very ill. I pray that your husband will enjoy his life whatever time he has left. My husband was 57. The only sign that he had was that his stomache felt as though there was a brick in it everytime he would eat. Upon having a ultrasound they discovered spots on his liver.
    Should your husbands stomache start to swell and he has increased pain insist on the doctor draining the fluids from his stomache. It does help the pain. I will keep you and your family in my prayers.

    My mom has been diagnose with cholangiocarcinoma cancer
    I'm searching for survivors, please help me help my mom. These past few weeks have been very stressful for us. About a month & half ago, my mom was feeling ill while she was visiting in Ethiopia. Them she had to remove her gallbladder, it then they noticed the cancer. They said it was stage 3 gallbladder cancer. After a very stressful weeks, she finally made it here, We took her to University Hospital of Cincinnati & she was there for a week. Now she's home with us. They've told us there is nothing they can do for her except to put her on chemo for whatever time that she has left. They are giving us few months. I'm not letting them take away my hope & faith but at the same time, I'm terrified. I'm searching for survivors who've had the same case like my mom's.

    This is her situation, her cancer happens to be Cholangiocarcinoma cancer. I was happy to find all of you who is familiar with this type of cancer. She had catscan & the doctors are saying that it's not operable. It's around & on her small intestine as well as on her liver blood vessel. Usually for this type of diagnose, a kind of surgery that is called Whipple surgery is recommended if I'm not mistaken; however, they are saying they won't be able to do that procedure for her 'cause the cancer is showing on her blood vessel. Has anyone had this kind of problem when they were diagnose? What Chemo cocktail worked for you? Where did you go? & where you able to have the surgery after wards or even before the chemo? Which surgeon did the procedure? I see that few survivors went to Virginia Mason clinic in Seattle, Is that the best place? If anyone has an idea where we can take my mom in Cincinnati, OH or Atlanta, GA from your experience, I would really appreciate it if you could let me know please. My mom will start her chemo by the end of next week. she's having hard time eating so she's eating very little & I would like to know from survivors, What should be good to feed her? The doctors are not helping a lot. I guess it's 'cause they already believe there is no hope for her. she's also a type II diabetic. I'm keeping my faith & hope 'cause that's all I have right now, & I don't want any doctor to take that away from me. Please I need help so bad. if it's easier, anyone with helpful information can email me at selibinu@gmail.com & put CNS-Info on the subject line.

    Thanks
  • clkempf
    clkempf Member Posts: 5
    mystery pain
    I too have had procedures done, and have mystery pain...mine is in my right side. Was also told "probably" nerve damage or aheasions....(do not know how to spell it but you get the jest), I am very thankful for the gift of surgery , but like you it hurts....I am 54, diag. 2009, Stage 4 w/mets in liver. Thank you Jesus I am still up and running.
  • Angel322
    Angel322 Member Posts: 26 Member
    seli said:

    My mom has been diagnose with cholangiocarcinoma cancer
    I'm searching for survivors, please help me help my mom. These past few weeks have been very stressful for us. About a month & half ago, my mom was feeling ill while she was visiting in Ethiopia. Them she had to remove her gallbladder, it then they noticed the cancer. They said it was stage 3 gallbladder cancer. After a very stressful weeks, she finally made it here, We took her to University Hospital of Cincinnati & she was there for a week. Now she's home with us. They've told us there is nothing they can do for her except to put her on chemo for whatever time that she has left. They are giving us few months. I'm not letting them take away my hope & faith but at the same time, I'm terrified. I'm searching for survivors who've had the same case like my mom's.

    This is her situation, her cancer happens to be Cholangiocarcinoma cancer. I was happy to find all of you who is familiar with this type of cancer. She had catscan & the doctors are saying that it's not operable. It's around & on her small intestine as well as on her liver blood vessel. Usually for this type of diagnose, a kind of surgery that is called Whipple surgery is recommended if I'm not mistaken; however, they are saying they won't be able to do that procedure for her 'cause the cancer is showing on her blood vessel. Has anyone had this kind of problem when they were diagnose? What Chemo cocktail worked for you? Where did you go? & where you able to have the surgery after wards or even before the chemo? Which surgeon did the procedure? I see that few survivors went to Virginia Mason clinic in Seattle, Is that the best place? If anyone has an idea where we can take my mom in Cincinnati, OH or Atlanta, GA from your experience, I would really appreciate it if you could let me know please. My mom will start her chemo by the end of next week. she's having hard time eating so she's eating very little & I would like to know from survivors, What should be good to feed her? The doctors are not helping a lot. I guess it's 'cause they already believe there is no hope for her. she's also a type II diabetic. I'm keeping my faith & hope 'cause that's all I have right now, & I don't want any doctor to take that away from me. Please I need help so bad. if it's easier, anyone with helpful information can email me at selibinu@gmail.com & put CNS-Info on the subject line.

    Thanks

    I am so sorry
    To read that your Mother has the horrible disease my Mother had. I remember when we first found out that she had Bile Duct Cancer (Cholangiocarcinoma) and no one had ever seemed to hear about this type of cancer. It was so hard and so frightening for me and my family. Her Primary care doctor thought it was her gallbladder. We went from it being her gallbladder to this terrible cancer. It was devastating. We had to wait 4weeks to see if they could operate on her at Johns Hopkins Hospital. I lost 20lbs due to all the stress. My Mother was my life, my best friend, confident, the one always in my corner, who loved me more than life itself. I quit my job to help her, to fight this disease with her and she made it 2years. Please hold onto hope, Seli. NEVER GIVE UP!! Fight with your Mother til the end! Let your Mother eat whatever she has a taste for. Keep her favorite foods on hand and encourage her kindly. Try different things but nothing spicy or hard to digest. Have her drink green tea and keep plenty of bananas on hand because her potassium will most likely drop while doing chemo. Potassium is an electrolyte and its very important that it doesn't drop too low. I used to make my Mother tiny pastina pasta in chicken broth and highly recommend it because its very soothing and easy to eat. Also, be sure to have her drink ensure or carnation instant breakfast to help keep her strength up as best as possible. My prayers are with you and your Mother. Angel
  • ericamyers31
    ericamyers31 Member Posts: 11
    Angel322 said:

    I am so sorry
    To read that your Mother has the horrible disease my Mother had. I remember when we first found out that she had Bile Duct Cancer (Cholangiocarcinoma) and no one had ever seemed to hear about this type of cancer. It was so hard and so frightening for me and my family. Her Primary care doctor thought it was her gallbladder. We went from it being her gallbladder to this terrible cancer. It was devastating. We had to wait 4weeks to see if they could operate on her at Johns Hopkins Hospital. I lost 20lbs due to all the stress. My Mother was my life, my best friend, confident, the one always in my corner, who loved me more than life itself. I quit my job to help her, to fight this disease with her and she made it 2years. Please hold onto hope, Seli. NEVER GIVE UP!! Fight with your Mother til the end! Let your Mother eat whatever she has a taste for. Keep her favorite foods on hand and encourage her kindly. Try different things but nothing spicy or hard to digest. Have her drink green tea and keep plenty of bananas on hand because her potassium will most likely drop while doing chemo. Potassium is an electrolyte and its very important that it doesn't drop too low. I used to make my Mother tiny pastina pasta in chicken broth and highly recommend it because its very soothing and easy to eat. Also, be sure to have her drink ensure or carnation instant breakfast to help keep her strength up as best as possible. My prayers are with you and your Mother. Angel

    I am so sorry
    OMG! !!! Ur story sounds just like mine... And u must be from somewhere near me cause my mom is getting her treatment at the University of Maryland. I want her to go to Hopkins & get a second opinion. I am begging you please get in contact with me; I want to communicate and share with you... My mom & I are best friends just as you said you and Ur mom are she is my entire life and my hero. Just as I told my Mom, she & I are in this fight 2 gather I am there for her every step of the way. I am just having sooo many felling one minute I am mad, hurt, angry and do not understand why? I have never felt so helplessness in my life...I want to fix my mom but I am at the mercy of Cancer that has invaded my mom body... Please inbox me and we can maybe exchange numbers something. I look forward to hearing from you, I believe in this battle we need all the support & resources’ we can have. I will keep Ur mom in my prayers & please do the same for me.
  • seli said:

    My mom has been diagnose with cholangiocarcinoma cancer
    I'm searching for survivors, please help me help my mom. These past few weeks have been very stressful for us. About a month & half ago, my mom was feeling ill while she was visiting in Ethiopia. Them she had to remove her gallbladder, it then they noticed the cancer. They said it was stage 3 gallbladder cancer. After a very stressful weeks, she finally made it here, We took her to University Hospital of Cincinnati & she was there for a week. Now she's home with us. They've told us there is nothing they can do for her except to put her on chemo for whatever time that she has left. They are giving us few months. I'm not letting them take away my hope & faith but at the same time, I'm terrified. I'm searching for survivors who've had the same case like my mom's.

    This is her situation, her cancer happens to be Cholangiocarcinoma cancer. I was happy to find all of you who is familiar with this type of cancer. She had catscan & the doctors are saying that it's not operable. It's around & on her small intestine as well as on her liver blood vessel. Usually for this type of diagnose, a kind of surgery that is called Whipple surgery is recommended if I'm not mistaken; however, they are saying they won't be able to do that procedure for her 'cause the cancer is showing on her blood vessel. Has anyone had this kind of problem when they were diagnose? What Chemo cocktail worked for you? Where did you go? & where you able to have the surgery after wards or even before the chemo? Which surgeon did the procedure? I see that few survivors went to Virginia Mason clinic in Seattle, Is that the best place? If anyone has an idea where we can take my mom in Cincinnati, OH or Atlanta, GA from your experience, I would really appreciate it if you could let me know please. My mom will start her chemo by the end of next week. she's having hard time eating so she's eating very little & I would like to know from survivors, What should be good to feed her? The doctors are not helping a lot. I guess it's 'cause they already believe there is no hope for her. she's also a type II diabetic. I'm keeping my faith & hope 'cause that's all I have right now, & I don't want any doctor to take that away from me. Please I need help so bad. if it's easier, anyone with helpful information can email me at selibinu@gmail.com & put CNS-Info on the subject line.

    Thanks

    CC survivor/thriver age 39
    Hello there,
    I was diagnosed out of the blue with stage IV, inoperable, incurable, cholangiocarcinoma on March 24, 2010. All statistics said I would be dead now. Im obviously not :)

    I get chemotherapy now every other week and my cocktail is Gemzar/Cisplatin which has been studied to be the best combination of drugs to fight cholangiocarcinoma by the New England Journal of Medicine (study was concluded about a year ago). I also get a nutritional IV from a naturopath once a week. However, now the bank account is very low and I cannot afford to go that often to the naturopath as insurance does not cover it. I can honestly tell you that the naturopath is vitally important to me because it counters all the negative effects of the chemo, well not all of them but I fell incredibly better when I get the IV' than when I don't (the IV's have vitamins, minerals and glutathione in them) I also take many supplements (you can find the list on my blog at thecancerassassin.blogspot.com if you are interested). My blog tells my whole story and also has a ton of links to resources I have been collecting in the past year. My facebook page at The Cancer Assassin also has a ton of resources to share (more so than the blog at this point).

    I too have an extremely hard time eating or even being hungry, I would recommend edible marijuana products for that. They really help with the pain of liver cancer (mine is often extreme) and they really help me to have an appetite and to want to eat. Eating is absolutely vital when you have cancer. Your body cannot fight if it is malnourished and most cancer patients actually die from malnourishment than from their cancer, so you can imagine how important it is to get her to eat. Avoid sugars (sugar feeds cancer) and dairy. For me dairy completely makes everything worse. My bile duct goes crazy and I wake up vomiting and with immense liver pain and very phlegmy and congested and coughing up nasties. all from dairy. There is a great cook book called The Cancer Fighting Kitchen that contains a bunch of recipes and even sorts them by symptom (nausea, fatigue, chemo week/day, after chemo, what to eat if you have no appetite, etc) and it is priceless to me.

    Whenever you can, cook for her and make her food. Often I do not want to eat cause I feel so crappy and fatigued but if someone were to put food in front of me (make sure it is healthy and not full of chemicals, whole organic food) I would most likely eat at least some of it. Often on days when I have little energy and little appetite I will make a smoothie out of strawberries, blueberries, pineapple, yogurt, protein powder (I use diaryless whey and it tastes very good) coconut water (natures own gatorade and oh so good for you), almond mild (my milk substitute, no soy!) and whatever else sounds good. It is like a meal in a mug, so I know I get all my vital nutrients even though I don't feel like eating.

    I could tell you so much, but I don't want to ramble....Please let me know if I can help in any way.
    Many many healing vibes and prayers to your mother. And you are right! most doctors aren't extremely helpful mostly because they cannot recommend something that is not "scientifically proven" like the naturopath and pretty much anything "natural" at all. They usually stick to what they know and that is synthetic drugs.

    I hope this helps.

    Laura
  • NaplesRI
    NaplesRI Member Posts: 2

    CC survivor/thriver age 39
    Hello there,
    I was diagnosed out of the blue with stage IV, inoperable, incurable, cholangiocarcinoma on March 24, 2010. All statistics said I would be dead now. Im obviously not :)

    I get chemotherapy now every other week and my cocktail is Gemzar/Cisplatin which has been studied to be the best combination of drugs to fight cholangiocarcinoma by the New England Journal of Medicine (study was concluded about a year ago). I also get a nutritional IV from a naturopath once a week. However, now the bank account is very low and I cannot afford to go that often to the naturopath as insurance does not cover it. I can honestly tell you that the naturopath is vitally important to me because it counters all the negative effects of the chemo, well not all of them but I fell incredibly better when I get the IV' than when I don't (the IV's have vitamins, minerals and glutathione in them) I also take many supplements (you can find the list on my blog at thecancerassassin.blogspot.com if you are interested). My blog tells my whole story and also has a ton of links to resources I have been collecting in the past year. My facebook page at The Cancer Assassin also has a ton of resources to share (more so than the blog at this point).

    I too have an extremely hard time eating or even being hungry, I would recommend edible marijuana products for that. They really help with the pain of liver cancer (mine is often extreme) and they really help me to have an appetite and to want to eat. Eating is absolutely vital when you have cancer. Your body cannot fight if it is malnourished and most cancer patients actually die from malnourishment than from their cancer, so you can imagine how important it is to get her to eat. Avoid sugars (sugar feeds cancer) and dairy. For me dairy completely makes everything worse. My bile duct goes crazy and I wake up vomiting and with immense liver pain and very phlegmy and congested and coughing up nasties. all from dairy. There is a great cook book called The Cancer Fighting Kitchen that contains a bunch of recipes and even sorts them by symptom (nausea, fatigue, chemo week/day, after chemo, what to eat if you have no appetite, etc) and it is priceless to me.

    Whenever you can, cook for her and make her food. Often I do not want to eat cause I feel so crappy and fatigued but if someone were to put food in front of me (make sure it is healthy and not full of chemicals, whole organic food) I would most likely eat at least some of it. Often on days when I have little energy and little appetite I will make a smoothie out of strawberries, blueberries, pineapple, yogurt, protein powder (I use diaryless whey and it tastes very good) coconut water (natures own gatorade and oh so good for you), almond mild (my milk substitute, no soy!) and whatever else sounds good. It is like a meal in a mug, so I know I get all my vital nutrients even though I don't feel like eating.

    I could tell you so much, but I don't want to ramble....Please let me know if I can help in any way.
    Many many healing vibes and prayers to your mother. And you are right! most doctors aren't extremely helpful mostly because they cannot recommend something that is not "scientifically proven" like the naturopath and pretty much anything "natural" at all. They usually stick to what they know and that is synthetic drugs.

    I hope this helps.

    Laura

    Cholangiocarcinoma
    Laura,
    I was so happy to read of someone receiving the same Chemo I am now getting- Gemzar/Cisplatin. (I was on oral chemo pills last fall)
    I just finished my 4th of 6 cycles (2 weeks of chemo once a week, 1 week off)
    I am fortunate that I have had no nausea with the chemo and eat better now than I have in quite a while. I also have not lost my hair which makes me feel good.
    I was diagnosed last summer and had my gallbladder removed. I was told no further surgery can help and that I have 6- 12 months to live, maybe longer. The cancer did spread from my bile ducts to liver.
    My question to you is how long have you been receiving chemo? My Dr said that when I finish my 6 cycles I get a "chemo holiday" and she will watch what happens via cat scan results. It sounds like it's possible that she would put me back on this chemo in the future.
    My pain comes from a cyst in my liver which I am considering whether to have it drained. Not sure what I will do there.
    I just found this site today- it is so good to know others share my cancer- though I hate it for everyone as it is one of the nastiest cancers!
    I look forward to hearing from you.
    Linda