ladylinden

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 Surfer1,

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.

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

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.

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.

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.

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