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Hi Peggy, I’ve read your posts about your brother and stent placement. I have Stage IV, inoperable cholangiocarcinoma with lymph node metastasis. I entered the emergency room after 9 days of jaundice and severe unbearable itching. I was admitted to Henry Ford Hospital, West Bloomfield, MI and CT scan showed 6 cm mass in liver with major vein involvement. They could not do a stent until the third day of my visit. A stent was placed and I went home two days later. I had soreness in the abdomen from the time the stent was placed and 10 days later I felt a sharp pain in the liver and knew the stent had shifted. I had the chills and started to yellow. I went to the hospital again and Dr. Faisal Khan (he was not the doctor who put in the first stent) placed two stents in the liver. It went absolutely perfect. Since June, 2013 I have had FOUR ERCPs. Tomorrow I will have mine replaced. My doctor said that it should be replaced every EIGHT weeks due to clogging and infection. I FEEL WONDERFUL. My question to you is: Why is your brother’s doctor having so much difficulty placing the stents? Also, do you want me to ask my doctor tomorrow any questions? I have received NO chemo, although they recommended Gem/Cis. I am thinking about starting it in November but for 6 months I have been feeling better than ok for which I am thankful. Please let me know how you and your brother are doing. The first doctor who did my stent did not know how to get the job done. Dr. Khan stepped in and I have had NO problems. Sincerely, Pat
Dear Lisa, If there is an after life and I hope there is, I want to tell you that I would have loved to have corresponded with you. I have read many of your posts and will continue until all are read. What an inspirational and brave person you have been throughout this terrible ordeal. Although you were very sick, you continued to care about others. I am sure you are missed, but please know your spirit is with me and your postings are motivating me to stay strong and brave, just like you. Thank you for all your posts and being a great example of what bravery is all about. I would have loved to have known you. Sincerely, Patricia
Your husband’s doctor must be brilliant. I had blood work done many times, but my doctor suspected nothing. On 5/29/13, I was diagnosed with cholangiocarcinoma, inoperable, Stage IV. Doctors told me that blood work would not show a problem with the liver unless the tumor was pressing against another part of the body. The tumor eventually blocked bile ducts and caused jaundice and severe itching. They did blood work and my liver enzymes were bad Through a cat scan it was discovered I had a 6cm mass on the liver with vein involvement and metastisis. I AM SO HAPPY your doctor discovered your husband’s cancer in Stage I and he is tolerating chemo. That is great news. I needed time to think about chemo, Cis/Gem, and have decided to proceed with the treatment although chances of it helping me are very small because I am in Stage IV. Please let the board know how you and your husband are doing. I wish you the very best and hope your husband has a full recovery.
I am so happy to hear some good news! I plan on taking gem/cis for three months, too. It’s good to hear that you have had a positive result. Very encouraging news!
Dear Jason, I saw your posts late last night and read each one. I want to thank you for all the time you have spent doing research! You have provided me with valuable information. You sound like you are a devoted husband and probably a great friend! Lucky wife and friends they are! I hope your wife and family will stay strong throughout this difficult time. You both are so young to go through so much trauma. I am 62 and have enjoyed good health my entire life. I note you mentioned your wife was healthy, too. I was in shock because I’ve always been physically active. I have sought no treatment because I’ve been tired and depressed so much that I didn’t have the mental strength to look into my options. Your wife’s condition appears to be similar to mine. I was diagnosed in May 2013 and I am in Stage IV, lymph node involvement, inoperable. My only option is chemo (cis/gem) and I am afraid to start chemo because I am feeling quite well. I have sought two opinions and both doctors agree that I am not a candidate for anything except chemo. Would you please keep us updated on how you and your wife are doing. Thank you for the amazing information and for sharing it with us. Some of us are too weak physically and mentally to do the work you have done. Sincerely Pat a/k/a LadyLinden
Dear Natalie, Happy Birthday To You! I am so glad your health has improved. My Mother use to tell me “Health is Wealth.” I didn’t fully appreciate that saying until I was more mature. Mother knew. I wish you many more birthdays filled with happiness and good health. Patricia LadyLinden
Pattimelt, Hi, May I ask was stage you are in and where did the primary cancer start. They didn’t know my primary site. I had blood work done on Friday. All bloodwork was normal. Probably because I have two stents placed in the liver. Do you have stents? Before I start chemo I would like to know should I leave well enough alone or proceed with chemo.
Hi Pattimelt, Thank you for the post! It’s difficult to believe I have cholangiocarcinoma because the only symptom I have is pressure when I eat more than I should. You mention you didn’t have any symptoms from it either! Did your doctor tell you why no symptoms? I was diagnosed late May 2013. Last night I danced to the top 40 and two weeks ago I was on the Dragster (Amusement Park Cedar Point), which was 420 feet into the air with a speed of 120. I spent the entire day walking and riding. I will find the definition of “radioembolization.” My oncologist says chemo will be
cis/gem. How are you doing now? If you could go back in time, would you have taken the chemo of cis/gem? I would greatly appreciate your opinion.
Has anyone on this site refused chemo for cholangiocarcinoma/bile duct cancer. I would appreciate hearing from you and how things are going for you. THANK YOU.
Hi Snowbird, I notice you are a new member. Welcome to the website. It is very helpful. May I ask what stage of cancer does your husband have. I have not received chemo but Gem/Cis were the recommended drugs. I was diagnosed late May 2013. I have an oncology appointment today to discuss pain management. I am strong except for some mild back pain. May I occasionally contact you regarding your husband’s treatment and how he is doing. I just may go with Gem/Cis if I heard more favorable results. I welcome any comments from members who have experience with this cancer chemo treatment. My dilemma is I FEEL GREAT NOW, it’s difficult to believe I have cancer. I am afraid of chemo and the affect it will have on me.
I’m in Stage IV, inoperable, with metastasis in lymph nodes and have not lost an oz. I am not getting the Cis/Gem that was suggested. I am glad that I refused treatment. There is no substantial evidence that Cis/Gem prolong QUALITY of life. I would not be happy with a weight gain. I am already going through enough emotional battles! Hair loss is also a possible side effect. Some times we just have to let go.
Hi Lainy, Yes, to chemo or not to chemo is definitely a tough decision! I am not a candidate for surgery. I’ve second the opinion at University of Chicago’s Hospital, Dr. Daniel Catenacci, who agrees with my diagnosis and treatment. So your husband lived for five years without chemo? That is wonderful to hear! I’ve had to make a lot of tough decisions in my life, but I trust my judgment and chemo is not right for me. I’ve had no chemo treatment and my goal is to ease my pain as much as possible. I’ve contacted Hospice. I will keep you in the loop. Again, so glad to hear about your husband surviving five years. He was a strong man, no doubt. Pat
Hi, I have Stage IV Cholangiocarcinoma, diagnosed 5/24/13. I am thankful for the 62 years of my life where I enjoyed good health. Today I was suppose to again make the appointment for installation of the port for the chemo therapy. I made a personal decision not to put Cis+Gem in my body. I feel these drugs will only add more problems to my heath issues. I will keep the board posted as to how things are going. The hospital tells me everyone is different. This may be true but I believe if they have treated Cholangiocarcinoma and the outcome is good, they would share this information with other patients. Without statistics and talking with people in a similar situation as mine, I cannot put my body through the side effects. It’s just not worth it to me. I quit smoking in 1988, cancer was the farthest thing from my mind, being diagnosed 5/24/2013 was an absolute shock! Putting chemo drugs in my body is even more terrifying than the disease itself. I wish you all the best in your personal choice regarding treatment. Pat/LadyLinden
Dear Kristina916, Thank you for taking time to write to me. It is difficult to lose a parent. You sound as though you are a loving daughter. Each time we think about the passing of someone, they never die. I believe in cherished memories. I don’t know if I have the courage of your Mom. I’m sure you gave her strength to be strong and carry on. I wish you peace and lasting loving memories of your Mother. Sincerely, Pat
Dear Pam, Thank you for taking the time to write to me. Truthfully, I can’t imagine losing a child. My deepest condolences. I am 62 and when I hear about someone so much younger dealing with serious health issues, I realize how fortunate I am to have lived a healthy life until recently. I hope you have someone to lean on. You asked me why I didn’t go to UofM. Well, I have been a patient of Henry Ford Hospital for many years. Also, my husband was at University of Michigan and unfortunately, his breathing tube came apart and, as you can imagine, he freaked out (like anyone would). I will tell you the details if you request. Also, my nephew Stephen died at University of Michigan due to kidney failure. Please let me know how you are doing. Sincerely, Pat