27 and advanced inoperable spread to liver lungs :s
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Dear Christine,
I am so very sorry that you have CC and sorry about the loss of your sister. My daughter, Lauren who is 25 has CC too. She is on chemo which consists of gem/cis and 5-FU. She has had 5 treatments. She had to miss one because her platelets were too low. She gets the gem/cis in the hospital and goes home with a pump that she wears for 48 hrs. for the 5-FU. I know it is so hard to deal with since you are so young and have your whole life ahead of you. She actually is feeling better with the chemo. She has an appetite and can eat now, where as before she was diagnosed she couldn’t eat much. Her largest tumor has shrunk 2cm. each way. It started out 12cm.x14cm. So chemo is working. We wish you the best of luck and if you ever need to talk, I am here to listen. Take care.Love, -Pam (and Lauren)
I’m rather new to all of this as well, but I couldn’t read and not reply. I’m also 27, but it is my father who has CC. Please don’t blame yourself. You’ll be in my thoughts.
Dear Lost Soul….but not anymore, you are here and we are happy you found us. Wow, you have really had your share and I am so sorry about your Sister. The reason that there is not much about CC is that due to it’s rarity we know not much so we do the best we can. Please remember that no 2 people are alike with this and we were not born with expiration dates stamped on our feet. You are at a good Hospital and Gem/Cis is the cocktail of choice. NOTHING you have done gave you CC. The most important thing is you have a game plan and I am sending good wishes and hugs for the very best. Please keep us psoted on your progress as we truly care.
thank you for responding. Yes i did ultrasound ercp endoscopy brushings and a liver biopsy i was in hte hosptial for 18 days! They found multiple pulmonary nodules scatterd throughout both lungs the largest being 8mm in the right middle lobe.
My gallbladder is contracted.
Multiple calcfied foci in the pancreas not sure what that is?
14mm lymph node in my infeerior vena cava and abdominal. an several more enlarged lymph nodes.
multiple lesions in my liver at least 7 largest 2cm in segment 4 anterior and superior to my duct.
my uterus is anterverted cervix slightly prominent
isoechoiclesion in my spleen not sure wha that is either
confirmed klatskin tumor from mymid common bile duct to my bifurcation or the confluenceof the ight and left bile duct and dilated biliary treeyou should see the picture he drew! im not sure what half my results mean but the picture showed everything i needed to know
my oncologist and princess margert is a bile duct specialist for anyone in Toronto her name is Jennifer Knox. She seems very knowledgeable. She put me on chemo right away im on cisplatain and gemitabine which seems to be going okay i can put up with some sickness as long as it reduces all that! I hope its enough because i hear that this combination is mild and i wil not lose my hair or anything like that but they found so much stuff im wondering if it is enough? I know its not gonna shrink the tumor in the bile down alot because it is rather large but i guess the first step is shrinking down the spreading tumors. I know this is the standard treatment and im happy to be getting any treatment at all. Apparently statistics show that it has been sucsessfull in stopping the tumor from spreading.
lostsoul…a warm welcome from the members of the club no one wants to belong to. Please do not blame yourself for having this cancer because, there is nothing you have done to cause it. Sometimes our body just does what it wants to do and in your case as in so many other people it caused cells to mutate and become cancerous.
Early detection of Cholangiocarcinoma rarely happens therefore, similar to you the majority of people are diagnosed at a later disease stage.
The physicians at Princess Margaret Hospital are quite familiar with this cancer therefore; I believe you are in the right place for treatments.
You must know that the rate of disease progressions varies greatly from person to person. Yes, statistics present us with average predictions however, you are not average rather, you are young of age and you have a good team of physicians working with you.
I am wondering: have all tumors been biopsied and confirmed to be Cholangiocarcinoma?
Please, continue to stay on our site as the members will share with you everything they know and everything they have experienced. You have come to the right place for support, caring, and information sharing. I am sure for others to join us real soon in this conversation. Stay strong and donMy name is Christine i recently lost my sister in June to gastric cancer she was 38 and diagnosed in Feburary she was given 12 months to live and died that quick since it was too late when they found it.
I was diagnosed with Celiac disease a year ago after going down to 91 lbs and being 5’5 5’6. i have had stomach promblems all my life and went to the point of mallabsorbtion since i was told it was just stress and anxitey to stop complaining and i was making myself sick. After going gluten free i was still gettin stomach problems diahreaha pain gas bloating. I went dairy caesin nut soy fructose egg free. Allergy tests ruled out other allergies but can’t show sensitivites. I was told nutritionists and dieticians were only free for diabetics and did not have the 100 dollas a visit to see them.
About a month ago i noticed the jaundice more tiredness than usual and orange urine. after doing tests i was admitted to the hospital tests and told i had hepetitis but not a b or c. They did mre test and found a huge bloackage in my bile duct spots all over my liver and lungs, swollen lymph nodeds and slightley inflammed pancreas. a stent was put in to reduce the inflammation which worked. After and a half weeks of being in the hospital i was finally diagnosed with advanced bile duct cancer the main tumor above my liver and the spots on my liver and lungs were also tumors. He said if someone sprinkled seeds all over my liver thats what it would look like and there were about 7 on my lungs and that it does not look good for me because of its advanced stage this being a rare untreatable cancer and my case was inoppearble.
I was sent to Princess Margeret hospital thank God got an appointment right away and started Chemo which i was told would not cure my cancer but only prelong it and hopefully put it into remission but it would eventally keep coming back. I read that once this cancer is advanced it is quite agressive as it seems in my case. That once it is found early there is a 5 year survival rate whcih goes down with each stage. I believe i am in Stage 4.
I quit my job in the hair salon i had went to school and was constantly working in hair salons which i was told also put me at risk along with my genetics social drinking and tattoos. How was i supposed to know that i had cancer growing inside me at this age i was just living my life the way most people my age do. Especially after having tests done a year ago for Celiac but i guess it was small then nd not spread so they could not detect it.
I want to go back to school and get my masters in kineseology but im scared at how advnced this cancer is i was told cis/gemb combo was suscsfull for shrinking and putting these tumors inremission buy my main tumor is so large i am afraid at how fast it will come back after being put into remission my sister was given 12 months so i keep asking how long i have but they wont say i have a feeing every few years i will have to keep coming back for chemo or less tham every few years as now im reading the survival rate at this stage is about 9 months in the late stage. I am not scared of chemo i have had stomach pains all my life so it cant be worse than hat i have already been going though i just want to know what imdealing with here. I am on a 6 cycle chemo every two Wednesedays and one week rest for 6 months. After 3 months they will do a cat scan and after 6 months another one which then it would hopefully be put into remission. But being this advanced how long does it take to come back usually does anyone know? Just looking for answers. Everything i read sems quite general i guess it is hard to know what will happen and itis a rare cancer. Sorry for the spelling mistakes trying to edit it i am bad at typing lol.
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