Mother recently diagnosed, stage IV intra CC
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Hello Stephanie….I don’t have much to add to what has been said already I did however, also want to welcome you to our site. It is good to hear that your Mom has been made comfortable with the drainage tubing and that you have become a fantastic advocate and caretaker to her. You might also want to make sure to have copies of all records including, blood test, MRI’s, scans, physician
Hi Stephanie. Thanks for the response. The question you should put to your ONC is not how many he has treated in the last few months as it is a rare cancer, but has he treated more than that in the last few years? I learned early on to listen to my gut. If it doesn’t make sense to you or you have any question at all, seek another opinion. Not happy when doctors say it is not treatable right off the bat. I know we have some family here from Cincinnatti and Indianapolis and I bet you will be hearing more from them. In fact if you go to our search engine at the top of the page and type in either city you will get some posts pop up that may be helpful until you hear from them. Watch for some more posts they will be coming along.
Thank you all for your support through
this forum. To answer a few of the questions posed, two docorrs told
us this was not treatable. The other two recommended addressing the
major issues with the liver and bile drainage first through stenting
and then treating with gemzar and zeloda. Because of the number
of large tumors in the liver the hope
is that shrinking them may open
up some other ducts.The oncologist treating this has only had two patients in eight
months with this diagnosis. The closest major
cities are Indianapolis and Cincinnati.Complicating some of the procedures has been a clotting factor which also has to be monitored.
I just want to do what is best for
my mother, insure she is comfortable and has the best quality
of life possible.Any input is much appreciated.
StephanieHi there,
Welcome to the site. Sorry that you had to find us all and I’m sorry to hear about your mum, but glad that you have joined us all as you will get a load of support here from us all. Like you, I had never heard of this cancer until we were told that my dad had it and it was inoperable so I know what you are going through and how you are feeling right now. I still remember what I felt like when we got the news and it was not a good feeling to say the least.
Can you tell us some more about the opinions that you have gotten and what treatment options have been reccomended to your mum. And please feel free to ask any questions here and we will do what we can to try and help. We do understand what you are going through right now as we have all been there. I hope that you will keep coming back and please let us know how your mum is doing.
My best wishes to you and your mum,
Gavin
Dear ssrork, welcome to our wonderful family. I am so sorry to hear about your Mother and the prognosis. Yes, when first diagnosed of CC we are shocked and stunned and overwhelmed. We do get a form of relief once a game plan is set in to place. May I ask where you live and if anything has been suggested for her care? I am glad you have already sought out 4 opinions. Have any of these doctors treated CC before? Not funny, but many doctors have not. You will find that coming to this site will help in many ways. USe us for questions, read up on our posts, use our search button, vent or advise, we are all here for you. Please keep us posted and let us know how Mom is doing, we all care.
Dear SSRork – Welcome to our cc family. You will find so much information here and so much caring support. Many of us become overwhelmed and shocked. It is definitely a roller coaster ride. Please come here often, post thoughts or feelings, ask questions, use the search box at the top of the page to search for specific information and treatment specialists in your area. We welcome you and will do whatever we can to answer questions or give insight into our own experiences. Just so you know, my husband has cc. He is 58, also a non-drinker, non-smoker who was never sick more than 24 hours before getting cc. He was diagnosed in late July 2010 and unfortunately, he has the type of cc that is faster growing. Our thoughts and prayers are with you and your family. Blessings, Susan
Welcome to our little corner of the world. Are they offering your mom any treatment at all? Where are you located?
Patty
Two weeks ago my mother, 61 was diagnosed with stage IV intra CC with mulitple liver tumors in 60% of the organ, pancreatic lesions, gallbladder, stomach, and lymph involvement. Until then she was a healthy, active non-smoker, non-drinker with no health issues. We had never even heard of this type of cancer.
Since her diagnosis and tube was inserted to drain the gallbladder externally, and later another through the liver PTHC. We been given 4 opinions, none with a good prognosis. I’ve become her primary caretaker and am totally overwhelmed and shocked.
I am thankful for any information I can gather from others affected by this and to sharing information so that we can help each other.
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