cholangiocarcinoma
Comments
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Hello all,dmeyer9 said:Hello Anne,
First I want to let you know how sorry I am that you are facing this. My thoughts/prayers are with you. My husband was just diagnosed on May 20th with stage IV cholangiocarcinoma. They found it because his gall bladder had become infected and they had to remove it. When they performed surgery, they found the cancer and said it was also inoperable. They are going to start him on Xeloda/capecitabine for two weeks with one week off and then for two weeks again. At the end of that time, they will then review the tumor to see if the capecitabine has had an effect on it. They also recommended gemcitabine, but can't use it yet because his bilirubin is at 4.6 and it has to be 1.5. They put in stents about a week and a half ago to try to reduce the bilirubin counts, and he is also taking actigal (ursodial) to make the bile less viscous. How is your treatment going?
Cherish and David
My name is Cherish, and last year my 42 husband was diagnosed with stage IV cholangiocarcinoma. He passed away 4 months later. I am writing you to let you know about the types of treatment/pallliative care that we undertook for David, because I believe that for those of you that find this disease early enough, some of this infomation may be of help. I am not a doctor. I am not a professional researcher. I am not recommending any of these options. I am just passing along my experience and my unprofessional opinion.
There is another posting in this site that I wrote that describes the chemo (Xeloda) and other drugs Actigal (ursodial) to make the bile less viscous) and Celebrex (it has been suggested that Celebrex helps with this type of cancer) that we used, so please look for that infomation if you are interested. We also had plastic stents placed two times to help with the drainage. The stents seemed to be a moderate help -- mostly for comfort. These were done at the University of Colorado Health Sciences.
The final method we undertook was Photodynamic Therapy (PDT) at the Mayo Clinic in Rochester. I read a finding by Dr. Maria Anna Ortner in Switzerland that discussed her success rates with PDT for late stage Cholangiocarcinoma and wrote to her for information. (Successful photodynamic therapy for nonresectable cholangiocarcinoma: a randomized prospective study. Ortner ME, Caca K, Berr F, Liebetruth J, Mansmann U, Huster D, Voderholzer W, Schachschal G, Mossner J, Lochs H.) Since it was not reasonable to go to Switzerland for the treatment, Dr. Ortner gave me the following contact information for physicians that are performing the treatment in the US. (Dr. Michell Depot from Axcan knows all doctors performing this treatment. mdepot@AXCAN.com).
When I contacted them, they suggested that the Mayo could perform the treatment, and we went to see Dr. Pete deGroen (hepatologist http://www.mayoclinic.org/gi-rst/10032835.html) and Dr. Wang (the doctor that would administer the PDT http://www.mayoclinic.org/gi-rst/10031251.html) for this procedure.
While the studies indicated it was a good choice for us, the procedure was very difficult. One of the requirements is that you must remain out of ALL natural light (sunlight and bright incandescent lights included) for 30 days. We had to seal our home windows with landscapers plastic to keep out the light. We also had to change all of our lightbulbs. And of course, he had to be totally covered when we flew back from the Mayo.
The hope was that the PDT would help stop the growth of the cancer and get it to shrink so that the chemo could work. I do believe that there are instances where, if found early enough, the PDT would help someone. Ultimately our goal was to get the cancer to go away so he could get on a donor list. We also found out that he had PSC (primary schlerosing cholangitis)so a liver transplant was the only solution -- but we were told we only get that was if the cancer was gone.
I hope that with more research there will be better ways to find this disease before it reaches terminal stage and that there will be better treatment/palliative options. I offer you all my solidarity through this and I hope that good care can be discovered.
I can be reached at cherish_meyer@hotmail.com and I am willing to share any information that I have found.0 -
Hi all,dmeyer9 said:Hello Tina and all,
My name is Cherish, and last year my 42 husband was diagnosed with stage IV cholangiocarcinoma. He passed away 4 months later. I am writing you to let you know about the types of treatment/pallliative care that we undertook for David, because I believe that for those of you that find this disease early enough, some of this infomation may be of help. I am not a doctor. I am not a professional researcher. I am not recommending any of these options. I am just passing along my experience and my unprofessional opinion.
There is another posting in this site that I wrote that describes the chemo (Xeloda) and other drugs Actigal (ursodial) to make the bile less viscous) and Celebrex (it has been suggested that Celebrex helps with this type of cancer) that we used, so please look for that infomation if you are interested. We also had plastic stents placed two times to help with the drainage. The stents seemed to be a moderate help -- mostly for comfort. These were done at the University of Colorado Health Sciences.
The final method we undertook was Photodynamic Therapy (PDT) at the Mayo Clinic in Rochester. I read a finding by Dr. Maria Anna Ortner in Switzerland that discussed her success rates with PDT for late stage Cholangiocarcinoma and wrote to her for information. (Successful photodynamic therapy for nonresectable cholangiocarcinoma: a randomized prospective study. Ortner ME, Caca K, Berr F, Liebetruth J, Mansmann U, Huster D, Voderholzer W, Schachschal G, Mossner J, Lochs H.) Since it was not reasonable to go to Switzerland for the treatment, Dr. Ortner gave me the following contact information for physicians that are performing the treatment in the US. (Dr. Michell Depot from Axcan knows all doctors performing this treatment. mdepot@AXCAN.com).
When I contacted them, they suggested that the Mayo could perform the treatment, and we went to see Dr. Pete deGroen (hepatologist http://www.mayoclinic.org/gi-rst/10032835.html) and Dr. Wang (the doctor that would administer the PDT http://www.mayoclinic.org/gi-rst/10031251.html) for this procedure.
While the studies indicated it was a good choice for us, the procedure was very difficult. One of the requirements is that you must remain out of ALL natural light (sunlight and bright incandescent lights included) for 30 days. We had to seal our home windows with landscapers plastic to keep out the light. We also had to change all of our lightbulbs. And of course, he had to be totally covered when we flew back from the Mayo.
The hope was that the PDT would help stop the growth of the cancer and get it to shrink so that the chemo could work. I do believe that there are instances where, if found early enough, the PDT would help someone. Ultimately our goal was to get the cancer to go away so he could get on a donor list. We also found out that he had PSC (primary schlerosing cholangitis)so a liver transplant was the only solution -- but we were told we only get that was if the cancer was gone.
I hope that with more research there will be better ways to find this disease before it reaches terminal stage and that there will be better treatment/palliative options. I offer you all my solidarity through this and I hope that good care can be discovered.
I can be reached at cherish_meyer@hotmail.com and I am willing to share any information that I have found.
My prayers go out to all who have this serious cancer and to family members concerned about correct treatments.
Unfortunately, not all cases are the same, not all staging is the same, nor are all patients able to undergo similar treament regimens.
I don't pretend that my wife's case is typical. I am sure it's not, but I bring it up to show that all reasonable options should be explored, and to point out that even the most qualified physicians and hospitals are made up of only human beings with human weaknesses, regardless of their "state-of-the-art" technology and their best intentions. As cancer-patients or family members, we must assume responsibility for treatment options whenever we are able.
My wife was diagonised with cancer in the liver just over 4 years ago at Mayo's in Scottsdale, AZ.
Mayo's had difficulties determining whether her liver tumor was choangiocarcinoma or "cancer of unknown origin" Because she also presented with a small nodule on the lung and had been a heavy smoker, they could not decide whether it was a choangiocarcinoma which had spread to the lung or lung cancer which had spread to the liver. In fact, even though her tumor on the liver was confirmed as malignant, they were unable to safely biopsy the lung at all (due to location of the nodule), and they were only guessing that the nodule on the lung was more cancer.
After first rejecting our requests for a surgical solution and recommending only chemo, and after 8 days of tests and discussions they finally reluctantly brought in a surgical team that recommended surgery to determine if the lung nodule was cancer or not. If it wasn't they said they would operate on the liver.
By then we had made the decision to seek a second opinion from a liver surgeon at the University of Southern California (USC). We transferred my wife to USC in L.A. and USC did a PET Scan and since the lung nodule did not indicate that it was cancerous, they operated on my wife's liver tumor, removing 70% of her liver and a small portion of her diaphram. The only reason for removing a portion of her diaphram was that the tumor was pressing on it, and they wanted to remove that area in case some cells had attached to the diaphram. During surgery my wife also received a chemo treatment of mitomicin.
The tumor in the liver was positive for adenocarcinoma and the pathologist agreed it was probable choangiocarcinoma. We later had USC send a specimen to Sloan-Kettering and their pathologist agreed as to the probable diagonis of choangiocarcinoma.
My wife spent 20 days in USC and was discharged and returned to Arizona.
Nine months after the surgery, a metastatic moderate size tumor was discovered in her brain.
That was surgically removed at Barrow's Neurological Center in Phoenix and followed by a Gamma-knife radiation treatment one week later. Approxiately one month after this surgery, she began six months of chemo treatment with 5FU and lucivoran as a precaution to attack any unseen cancer cells that might be in her body.
It has been 39 months since her brain surgery and 48 months since her liver surgery, and due to the grace of God and many prayers He has heard, she remains cancer-free. Although the liver-surgery was very traumatic, she is healthy and active today.
She periodically receives scans to monitor her condition.
I tell her full history to demonstrate the importance of obtaining other opinions, and when possible, seeking aggressive treatment.0 -
It seems all of us have been touched by this horrible disease in one way or another. I am a liver donor. My brother, who would be 44 years old this year, was diagnosed with PSC at 21. He battled it for a long many years before an ERCP test revealed cancer cells in his liver in March of 2000 where the PSC had turned into Cholangio. This was the ugly turn that we all had been waiting for everyday since his diagnosis in 1982. He was seen at Northwestern Hospital in Chicago which one one of the cutting edge Liver Transplantation centers in the country. He wasn't sick enough for a Donor Liver and if he waited, the disease would kill him before a liver was available. Northwestern was in it's infancy of Living donor liver transplantaion at this time, but it was made available to us in June of 2000. We were the fifth Living donor liver case at the time and they are in the 100's now. I donated to my brother when he was 38 and I was 33. This was the ONLY option or let him die. We did the transplant and it was a success. I gave him 60% of my liver which was 100% regenerated in a little over a month's time. He survived another two wonderful years. Unfortunately, the cancer cells that were detected prior to surgery had laid dormant in his body and came back two years later right back to the liver. Living donor transplant is a way to go for alot of people that cannot be cured or get a cadavor liver. It is an extention of life and a real shot at making it and it was our only hope and option. His young children got to know him two years longer and chances are they would have not remebered him at all if the transplant wasn't possible. For those of you searching for way to beat this horrible disease, try Northwestern in Chicago. Since my brother's case, they now pre-treat PSC/Cholangio patients with chemo and radiation prior to surgery to try and kill these cells so there is no recurrent cholangiocarcinoma after transplant. With all of the immuno suppressive drugs that the recipient has to take post transplant, there is nothing to fight the cancer if it comes back so they are taking these measure to treat patients prior to transplant, with great success. I have had no complications as a living donor and would do it again if I had to. I hope this info is of some help to all who need it and god bless you all who are sick, I have a special place in my heart and prayers for all of you. Brian (Stevesbrother)thomast said:Hi all,
My prayers go out to all who have this serious cancer and to family members concerned about correct treatments.
Unfortunately, not all cases are the same, not all staging is the same, nor are all patients able to undergo similar treament regimens.
I don't pretend that my wife's case is typical. I am sure it's not, but I bring it up to show that all reasonable options should be explored, and to point out that even the most qualified physicians and hospitals are made up of only human beings with human weaknesses, regardless of their "state-of-the-art" technology and their best intentions. As cancer-patients or family members, we must assume responsibility for treatment options whenever we are able.
My wife was diagonised with cancer in the liver just over 4 years ago at Mayo's in Scottsdale, AZ.
Mayo's had difficulties determining whether her liver tumor was choangiocarcinoma or "cancer of unknown origin" Because she also presented with a small nodule on the lung and had been a heavy smoker, they could not decide whether it was a choangiocarcinoma which had spread to the lung or lung cancer which had spread to the liver. In fact, even though her tumor on the liver was confirmed as malignant, they were unable to safely biopsy the lung at all (due to location of the nodule), and they were only guessing that the nodule on the lung was more cancer.
After first rejecting our requests for a surgical solution and recommending only chemo, and after 8 days of tests and discussions they finally reluctantly brought in a surgical team that recommended surgery to determine if the lung nodule was cancer or not. If it wasn't they said they would operate on the liver.
By then we had made the decision to seek a second opinion from a liver surgeon at the University of Southern California (USC). We transferred my wife to USC in L.A. and USC did a PET Scan and since the lung nodule did not indicate that it was cancerous, they operated on my wife's liver tumor, removing 70% of her liver and a small portion of her diaphram. The only reason for removing a portion of her diaphram was that the tumor was pressing on it, and they wanted to remove that area in case some cells had attached to the diaphram. During surgery my wife also received a chemo treatment of mitomicin.
The tumor in the liver was positive for adenocarcinoma and the pathologist agreed it was probable choangiocarcinoma. We later had USC send a specimen to Sloan-Kettering and their pathologist agreed as to the probable diagonis of choangiocarcinoma.
My wife spent 20 days in USC and was discharged and returned to Arizona.
Nine months after the surgery, a metastatic moderate size tumor was discovered in her brain.
That was surgically removed at Barrow's Neurological Center in Phoenix and followed by a Gamma-knife radiation treatment one week later. Approxiately one month after this surgery, she began six months of chemo treatment with 5FU and lucivoran as a precaution to attack any unseen cancer cells that might be in her body.
It has been 39 months since her brain surgery and 48 months since her liver surgery, and due to the grace of God and many prayers He has heard, she remains cancer-free. Although the liver-surgery was very traumatic, she is healthy and active today.
She periodically receives scans to monitor her condition.
I tell her full history to demonstrate the importance of obtaining other opinions, and when possible, seeking aggressive treatment.0 -
I was diagnoised last September with the same thing
I was given less then 6 months to live. But with Prayers, attitude and the Mayo Clinic I am still here and healthy! My advise to you is to start a prayer chain at your church,then smile and call the Mayo Clinic and get in asap! I have had several treatments at the Mayo and go for chemo locally. But I am here! I get to see my Grandchildren grown, and isn't that what life is all about?? I am only 53.0 -
Bless youthomast said:Hi all,
My prayers go out to all who have this serious cancer and to family members concerned about correct treatments.
Unfortunately, not all cases are the same, not all staging is the same, nor are all patients able to undergo similar treament regimens.
I don't pretend that my wife's case is typical. I am sure it's not, but I bring it up to show that all reasonable options should be explored, and to point out that even the most qualified physicians and hospitals are made up of only human beings with human weaknesses, regardless of their "state-of-the-art" technology and their best intentions. As cancer-patients or family members, we must assume responsibility for treatment options whenever we are able.
My wife was diagonised with cancer in the liver just over 4 years ago at Mayo's in Scottsdale, AZ.
Mayo's had difficulties determining whether her liver tumor was choangiocarcinoma or "cancer of unknown origin" Because she also presented with a small nodule on the lung and had been a heavy smoker, they could not decide whether it was a choangiocarcinoma which had spread to the lung or lung cancer which had spread to the liver. In fact, even though her tumor on the liver was confirmed as malignant, they were unable to safely biopsy the lung at all (due to location of the nodule), and they were only guessing that the nodule on the lung was more cancer.
After first rejecting our requests for a surgical solution and recommending only chemo, and after 8 days of tests and discussions they finally reluctantly brought in a surgical team that recommended surgery to determine if the lung nodule was cancer or not. If it wasn't they said they would operate on the liver.
By then we had made the decision to seek a second opinion from a liver surgeon at the University of Southern California (USC). We transferred my wife to USC in L.A. and USC did a PET Scan and since the lung nodule did not indicate that it was cancerous, they operated on my wife's liver tumor, removing 70% of her liver and a small portion of her diaphram. The only reason for removing a portion of her diaphram was that the tumor was pressing on it, and they wanted to remove that area in case some cells had attached to the diaphram. During surgery my wife also received a chemo treatment of mitomicin.
The tumor in the liver was positive for adenocarcinoma and the pathologist agreed it was probable choangiocarcinoma. We later had USC send a specimen to Sloan-Kettering and their pathologist agreed as to the probable diagonis of choangiocarcinoma.
My wife spent 20 days in USC and was discharged and returned to Arizona.
Nine months after the surgery, a metastatic moderate size tumor was discovered in her brain.
That was surgically removed at Barrow's Neurological Center in Phoenix and followed by a Gamma-knife radiation treatment one week later. Approxiately one month after this surgery, she began six months of chemo treatment with 5FU and lucivoran as a precaution to attack any unseen cancer cells that might be in her body.
It has been 39 months since her brain surgery and 48 months since her liver surgery, and due to the grace of God and many prayers He has heard, she remains cancer-free. Although the liver-surgery was very traumatic, she is healthy and active today.
She periodically receives scans to monitor her condition.
I tell her full history to demonstrate the importance of obtaining other opinions, and when possible, seeking aggressive treatment.
You give me hope!0 -
I feel your painclkempf said:I was diagnoised last September with the same thing
I was given less then 6 months to live. But with Prayers, attitude and the Mayo Clinic I am still here and healthy! My advise to you is to start a prayer chain at your church,then smile and call the Mayo Clinic and get in asap! I have had several treatments at the Mayo and go for chemo locally. But I am here! I get to see my Grandchildren grown, and isn't that what life is all about?? I am only 53.
I am so sorry about your cancer. My husband and I, our church, family, friends are all praying for us and that is all we know to do. My husband Doug was diagnoised with hepatacellular carcinoma in November 09. He is not eligible for liver transplant because he has to many tumors and size in liver. We are hurting so bad. The Dr's say 3-6 months. Because my husband also has Hep c and cirrhosis he doen't have enough healthy tissue left in the liver for any aggressive chemo other than the nexavar he is taking. He is 55 and my soulmate.
I'm like a little child begging for help but no help comes. All we can do is be thankful for our faith in God and read our healing scriptures daily. God Bless you.
Diana0 -
I feel your painclkempf said:I was diagnoised last September with the same thing
I was given less then 6 months to live. But with Prayers, attitude and the Mayo Clinic I am still here and healthy! My advise to you is to start a prayer chain at your church,then smile and call the Mayo Clinic and get in asap! I have had several treatments at the Mayo and go for chemo locally. But I am here! I get to see my Grandchildren grown, and isn't that what life is all about?? I am only 53.
I am so sorry about your cancer. My husband and I, our church, family, friends are all praying for us and that is all we know to do. My husband Doug was diagnoised with hepatacellular carcinoma in November 09. He is not eligible for liver transplant because he has to many tumors and size in liver. We are hurting so bad. The Dr's say 3-6 months. Because my husband also has Hep c and cirrhosis he doen't have enough healthy tissue left in the liver for any aggressive chemo other than the nexavar he is taking. He is 55 and my soulmate.
I'm like a little child begging for help but no help comes. All we can do is be thankful for our faith in God and read our healing scriptures daily. God Bless you.
Diana0 -
cholangioarcinomazack1 said:I feel your pain
I am so sorry about your cancer. My husband and I, our church, family, friends are all praying for us and that is all we know to do. My husband Doug was diagnoised with hepatacellular carcinoma in November 09. He is not eligible for liver transplant because he has to many tumors and size in liver. We are hurting so bad. The Dr's say 3-6 months. Because my husband also has Hep c and cirrhosis he doen't have enough healthy tissue left in the liver for any aggressive chemo other than the nexavar he is taking. He is 55 and my soulmate.
I'm like a little child begging for help but no help comes. All we can do is be thankful for our faith in God and read our healing scriptures daily. God Bless you.
Diana
Zack l, and elkempf, we can not give up and prayer is very powerful. I was diagnosed last July, '09 and given 6mos. by a couple of doctors. A couple of other doctors told me that even though this cancer can not be cured, everyone is different, so they said there is no time period. So, I say, let's fight it and keep praying. I have friends praying for me and prayer groups (people I have never met) all praying for me. My cancer is in the bile duct along with a few small tumors and one large one that is blocking one side of my liver.
I have had chemo and radiation and that seemed to stop the growing for a couple of months but the last two months, my CA-19-9 tests have gone "sky-high". If it has not come down in two weeks, when I will have another blood test, I will start chemo, again. I am going to keep praying and fighting as I am sure you are doing, too. Are you on a special diet and are you taking supplements?
Rowena320 -
Cholangiocarcinomia SUPPORT!rowena32 said:cholangioarcinoma
Zack l, and elkempf, we can not give up and prayer is very powerful. I was diagnosed last July, '09 and given 6mos. by a couple of doctors. A couple of other doctors told me that even though this cancer can not be cured, everyone is different, so they said there is no time period. So, I say, let's fight it and keep praying. I have friends praying for me and prayer groups (people I have never met) all praying for me. My cancer is in the bile duct along with a few small tumors and one large one that is blocking one side of my liver.
I have had chemo and radiation and that seemed to stop the growing for a couple of months but the last two months, my CA-19-9 tests have gone "sky-high". If it has not come down in two weeks, when I will have another blood test, I will start chemo, again. I am going to keep praying and fighting as I am sure you are doing, too. Are you on a special diet and are you taking supplements?
Rowena32
Hi .. I am so happy to see any one posting on my questions etc....I feel so lost and alone with this cancer. I have been searching site after site to get some feedback of people who are going through the same things... I was diagnoised last September, given less then 6 months at that time. Have been going to Rochester Mayo for treatments. Had a Sir_Sphere, and 2 chemoembloizations, both with good results! I take chemo cispolatin and gemzar 4xs a month. Now, I have started injections of Neulasta to strengthen my WBC, so I can be around my Grandbabies. It has made me feel awful! But I go on, knowing the end result is good. I have not started any diets, etc, no one seems to tell me anything except take this pill, take this treatment..etc. I do ask questions, but I guess not the correct ones. I am on vitimins, plus like I said lots of pills.
My husband is my rock, and my grown children are all there for me, but I still need to talk to someome who can help get me through this. Someone who has it or a loved one who had it...someone with experience in this horrible life robbing cancer. I am only 53....and I have no symptoms of this cancer, never have had, was found by accident. My skin is not yellow, I doi not itch, I just have cancer....my hair is really thin, but still with me. I have not dropped weight. So I guess so far so good. I just know I am dying. It is a horrible feeling to wake up to each day. I know we can not guess when it will happen and God takes us when it is our time. And doctors don't know everything etc.. I hear it all. I do have hope. But it is a hope of longer life not cure. Because there is none. Can I be the first? I have so many questions floating in my head each day it about drives me crazy. I want to not have this. I want to go back to where I was 1.5 years ago, when I went with my husband on the Harley just for fun, or ran in the yard with my Grandson to play baseball. Or planned on a trip with husband just for the heck of it without wondering if I will feel good enough to go. UGGHHH! I am sorry ...just venting!0 -
Liver Cancer with nodes near heart (right now unknown)thomast said:Hi all,
My prayers go out to all who have this serious cancer and to family members concerned about correct treatments.
Unfortunately, not all cases are the same, not all staging is the same, nor are all patients able to undergo similar treament regimens.
I don't pretend that my wife's case is typical. I am sure it's not, but I bring it up to show that all reasonable options should be explored, and to point out that even the most qualified physicians and hospitals are made up of only human beings with human weaknesses, regardless of their "state-of-the-art" technology and their best intentions. As cancer-patients or family members, we must assume responsibility for treatment options whenever we are able.
My wife was diagonised with cancer in the liver just over 4 years ago at Mayo's in Scottsdale, AZ.
Mayo's had difficulties determining whether her liver tumor was choangiocarcinoma or "cancer of unknown origin" Because she also presented with a small nodule on the lung and had been a heavy smoker, they could not decide whether it was a choangiocarcinoma which had spread to the lung or lung cancer which had spread to the liver. In fact, even though her tumor on the liver was confirmed as malignant, they were unable to safely biopsy the lung at all (due to location of the nodule), and they were only guessing that the nodule on the lung was more cancer.
After first rejecting our requests for a surgical solution and recommending only chemo, and after 8 days of tests and discussions they finally reluctantly brought in a surgical team that recommended surgery to determine if the lung nodule was cancer or not. If it wasn't they said they would operate on the liver.
By then we had made the decision to seek a second opinion from a liver surgeon at the University of Southern California (USC). We transferred my wife to USC in L.A. and USC did a PET Scan and since the lung nodule did not indicate that it was cancerous, they operated on my wife's liver tumor, removing 70% of her liver and a small portion of her diaphram. The only reason for removing a portion of her diaphram was that the tumor was pressing on it, and they wanted to remove that area in case some cells had attached to the diaphram. During surgery my wife also received a chemo treatment of mitomicin.
The tumor in the liver was positive for adenocarcinoma and the pathologist agreed it was probable choangiocarcinoma. We later had USC send a specimen to Sloan-Kettering and their pathologist agreed as to the probable diagonis of choangiocarcinoma.
My wife spent 20 days in USC and was discharged and returned to Arizona.
Nine months after the surgery, a metastatic moderate size tumor was discovered in her brain.
That was surgically removed at Barrow's Neurological Center in Phoenix and followed by a Gamma-knife radiation treatment one week later. Approxiately one month after this surgery, she began six months of chemo treatment with 5FU and lucivoran as a precaution to attack any unseen cancer cells that might be in her body.
It has been 39 months since her brain surgery and 48 months since her liver surgery, and due to the grace of God and many prayers He has heard, she remains cancer-free. Although the liver-surgery was very traumatic, she is healthy and active today.
She periodically receives scans to monitor her condition.
I tell her full history to demonstrate the importance of obtaining other opinions, and when possible, seeking aggressive treatment.
It's 2010 and I don't know how things are with you and yours. I do hope well.
I'm just starting to observe, worry and pray for my son diognosed with Liver Cancer and what all else. We will know the rest on Thurs. I'm seeking hope and as a Mother I need others with a similar situation to talk to. Can you help?
Hanabanana0 -
I'm so sorry to hear aboutclkempf said:Cholangiocarcinomia SUPPORT!
Hi .. I am so happy to see any one posting on my questions etc....I feel so lost and alone with this cancer. I have been searching site after site to get some feedback of people who are going through the same things... I was diagnoised last September, given less then 6 months at that time. Have been going to Rochester Mayo for treatments. Had a Sir_Sphere, and 2 chemoembloizations, both with good results! I take chemo cispolatin and gemzar 4xs a month. Now, I have started injections of Neulasta to strengthen my WBC, so I can be around my Grandbabies. It has made me feel awful! But I go on, knowing the end result is good. I have not started any diets, etc, no one seems to tell me anything except take this pill, take this treatment..etc. I do ask questions, but I guess not the correct ones. I am on vitimins, plus like I said lots of pills.
My husband is my rock, and my grown children are all there for me, but I still need to talk to someome who can help get me through this. Someone who has it or a loved one who had it...someone with experience in this horrible life robbing cancer. I am only 53....and I have no symptoms of this cancer, never have had, was found by accident. My skin is not yellow, I doi not itch, I just have cancer....my hair is really thin, but still with me. I have not dropped weight. So I guess so far so good. I just know I am dying. It is a horrible feeling to wake up to each day. I know we can not guess when it will happen and God takes us when it is our time. And doctors don't know everything etc.. I hear it all. I do have hope. But it is a hope of longer life not cure. Because there is none. Can I be the first? I have so many questions floating in my head each day it about drives me crazy. I want to not have this. I want to go back to where I was 1.5 years ago, when I went with my husband on the Harley just for fun, or ran in the yard with my Grandson to play baseball. Or planned on a trip with husband just for the heck of it without wondering if I will feel good enough to go. UGGHHH! I am sorry ...just venting!
I'm so sorry to hear about your cancer. It's hard.. very hard on everyone!! I was diagnosed just 6 weeks ago with stage 4 HCC, been through 3 hospitals, and cant even count how many tests, scans, and blood work. I underwent a resection of a 13.5cm tumor on my liver 4 weeks ago but they found a bunch more that couldnt be resected. Was told about a year to go! I'm 41 had no symptoms until one night of pain in my side that kicked off the nightmare. I also don’t fit the top 3 reason for HCC. I have a great wife and 9 yr old, family and friends that have been awesome throughout all this so far. I know its only the beginning on the cancer journey but I also know I’m not alone. To go back 6 weeks and not have cancer running though my mind would be awesome but not a reality. I also know beating liver cancer is pretty tough and rare!
What struck me and compelled me to respond was you comment on how horrible it is to wake up each day and I might have misinterpreted… If you're in pain I'm sorry. How do you process someone telling "you have about a year to live??" I searched google “beat liver cancer, cure liver cancer, HCC, everything and read all the doom and gloom about this disease which most of what I found already has a death date stamped on my forehead. I've cried my eyes out saying I dont want to die..not now!! So here’s where I’ve put my mindset in addition to all the praying … first off started by saying F**k Cancer!! It has literally consumed every inch of me physically and emotionally for about 3 weeks until I told myself I wasnt going to let it run my life. I’m back to work full time now too. Secondly I took all the info I found online and formulated my own hybrid diet I can live with as all the the docs say is eat a balanced diet. I’ve gone mostly; fruit, veggie, whole grains, good fish, low salt, low sugar, low dairy and very little chicken and beef. Now keep in mind I was a meat and potatoes guy prior. I started drinking Essiac tea 2x a day, taking milk thistle and also a multivitamin. Thirdly I found new doctors that didn’t date stamp me so transferred my care to Sloan in NY, I live in Wisconsin. I don’t know if anything is working yet but can tell you I wake up feeling pretty damn good (once I look in the mirror to make sure I don’t look like Bart Simpson) have a more positive outlook and I really try not to think about the dying aspect of it, we all know the bad of cancer. Rather I try to keep in my mind I'm still ALIVE NOW and try to appreciate each day for what it is (something I havent dont in years as my life was going by so fast I didnt take the time to slow down)....another day alive to see my little girl, spend time with family and friends, go places or even just lounge out at home. Someone recently told me this….remember no one is guarantied tomorrow cancer or not.
Best wishes and good vibes your way!0 -
Am so happy to hear aboutthomast said:Hi all,
My prayers go out to all who have this serious cancer and to family members concerned about correct treatments.
Unfortunately, not all cases are the same, not all staging is the same, nor are all patients able to undergo similar treament regimens.
I don't pretend that my wife's case is typical. I am sure it's not, but I bring it up to show that all reasonable options should be explored, and to point out that even the most qualified physicians and hospitals are made up of only human beings with human weaknesses, regardless of their "state-of-the-art" technology and their best intentions. As cancer-patients or family members, we must assume responsibility for treatment options whenever we are able.
My wife was diagonised with cancer in the liver just over 4 years ago at Mayo's in Scottsdale, AZ.
Mayo's had difficulties determining whether her liver tumor was choangiocarcinoma or "cancer of unknown origin" Because she also presented with a small nodule on the lung and had been a heavy smoker, they could not decide whether it was a choangiocarcinoma which had spread to the lung or lung cancer which had spread to the liver. In fact, even though her tumor on the liver was confirmed as malignant, they were unable to safely biopsy the lung at all (due to location of the nodule), and they were only guessing that the nodule on the lung was more cancer.
After first rejecting our requests for a surgical solution and recommending only chemo, and after 8 days of tests and discussions they finally reluctantly brought in a surgical team that recommended surgery to determine if the lung nodule was cancer or not. If it wasn't they said they would operate on the liver.
By then we had made the decision to seek a second opinion from a liver surgeon at the University of Southern California (USC). We transferred my wife to USC in L.A. and USC did a PET Scan and since the lung nodule did not indicate that it was cancerous, they operated on my wife's liver tumor, removing 70% of her liver and a small portion of her diaphram. The only reason for removing a portion of her diaphram was that the tumor was pressing on it, and they wanted to remove that area in case some cells had attached to the diaphram. During surgery my wife also received a chemo treatment of mitomicin.
The tumor in the liver was positive for adenocarcinoma and the pathologist agreed it was probable choangiocarcinoma. We later had USC send a specimen to Sloan-Kettering and their pathologist agreed as to the probable diagonis of choangiocarcinoma.
My wife spent 20 days in USC and was discharged and returned to Arizona.
Nine months after the surgery, a metastatic moderate size tumor was discovered in her brain.
That was surgically removed at Barrow's Neurological Center in Phoenix and followed by a Gamma-knife radiation treatment one week later. Approxiately one month after this surgery, she began six months of chemo treatment with 5FU and lucivoran as a precaution to attack any unseen cancer cells that might be in her body.
It has been 39 months since her brain surgery and 48 months since her liver surgery, and due to the grace of God and many prayers He has heard, she remains cancer-free. Although the liver-surgery was very traumatic, she is healthy and active today.
She periodically receives scans to monitor her condition.
I tell her full history to demonstrate the importance of obtaining other opinions, and when possible, seeking aggressive treatment.
Am so happy to hear about successful treatment/outcome!!! FANTASTIC!0 -
Cholangiocarcinoma - and NED - but Arthritis is much worse
I am a 65-year-old female and I was diagnosed with inoperable Cholangiocarcinoma about a year and two months ago. After stents were put in to deal with the bile blockage, I underwent Proton radiation for six weeks (5 sessions a week), along with supplementary chemo (in pill form). It was rough, but doable. Currently (after MRI scans every few months), the doctor team tells me I am NED (no evidence of disease); although my gall bladder is collecting stones. My biggest complaint is that I am finding osteoarthritis pains in all sorts of new places. Makes me wonder does radiation make arthritis worse?0 -
Father was just diagnosed
Father was just diagnosed after having his Gall Bladder taken out. Had one round of Chemo. Then broke his hip when the cancer moved there. Had to have hip replaced and that set him back on Chemo 3 weeks. So started over Tuesday on Chemo. Hoping for the best with it. He has major issues eating and staying hydrated.
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Hi,
Thanks for the comments and information on your condition (or your loved ones). I have a diagnosis of 'atypical epithelial cells, highly suspicious for adenocarcinoma'. I have a consult with a surgeon next week, and a 2nd opinion scheduled at Ohio State University the following week. I am waiting on a lymph node biopsy result.
I lost my husband to Melanoma in 2016. He lived two months following his diagnosis. I am feeling really alone without him, especially now.
I will know more specifics by the end of this month (February 2022), but am feeling very anxious and have a lot of fear.
Thanks for listening.
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I was just a few weeks ago diagnosed with stage 4 cholangiocarcinoma (bile duct cancer). I had my first chemotherapy October 30, 2023. I’m scared and worried every day. 66 years old and was in perfect health a month ago until a routine ct scan for my yearly physical showed some spots on my lung and liver. Now I’m devastated and feeling sick. I hope the chemotherapy helps me live better and longer.
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Tmalinow,
I am so sorry for your diagnosis. I was 53 when I received that surprise diagnosis though they did not tell me a stage, just what it was. I know all cases are different but I went to the Mayo Clinic in Minnesota (I was lucky and had great insurance). I got a lot of chemo, radiation and then became eligible for a liver transplant. I got double listed at Mayo and BJC in St. Louis and got a new liver at BJC. That was almost 5 years ago. I have made it longer than most doctors thought I would. I admit I was lucky. I think it is a roll of the dice what cancers respond to what. I don't claim to be anyone special or super strong, I just did what the doctors told me to do. I think the three most important things are 1) to not give up if there is still hope, 2) always get second opinions, and 3) ask your insurance for things. They are not going to volunteer information about covering things but if you ask them they will tell you. I am sure if I did not do those three things I would not be here today no matter how lucky I was.
Stay strong and fight and good luck!
-Phil
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