barbara
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It is with sadness in her family’s hearts to let you know that Barbara Lowe passed away on July 31, 2010 due to complications from Cholangiocarcinoma and Crohn’s Disease. She loved her family and friends dearly.
Barbara worked as a teacher and principal for over 20 years. In her retirement, she worked hard to secure a bond to build a new high school in her grandchildren’s community. That goal had become just one of her many reasons to fight her disease with desire and dignity.
She diligently followed this discussion board to learn more about her disease and share her knowledge with others.
Barbara never let her disease stop her from living her life, but the pain and complications of Cc and Crohn’s finally got the best of her and she died peacefully in her own bed. All who knew her will miss her.
In the last 5 years I have visited China, Japan, and Vietnam. Did not eat fish. Have had cc since 10/08.
HI Damammama,
I have the same with mets to the peritineum. I went to two surgeons looking for surgery but both said there would be no surgery because of mets. I have had chemo for 18 mos and am on a one month break since I am so tired. I hope you get some good news and tell me about it.I, too, have mets from the liver that spread to the omentum. Gemzar and Xeloda decreased it all for 1 year and then I was put on Gemzar and Oxalyplatin when the mets started to grow rapidly. They now have decreased againover the last 6 months. What was your allergic reaction to Oxalyplatin? I have been here since diagnosis in Oct, 98 and they gave me 8-14 months to live so don’t believe what they say. There are many other drugs they can give you. I live in SD, CA andf am treated at UCSD Moores Cancer Center. Good luck and happy vacation.
I have Crohn’s Disease that PSCd to CC. Have been on chemo for 18 months, most recently Gemzar/Oxalyplatin. Doing well but as you know, no cure. Mets to the abdominal wall. Good luck.
I have had chemo for 15 months, first with gem/xeloda and now with gem/oxalyplatin. I have never been sick from the infusion and have outlived their prediction for me. I suggest trying the chemo. You can always stop it at anytime.
Mine has also spread to the lining of the stomach walls and I can’t have any surgery. Radiation took care of the liver tumor. I am on Gemzar and Oxalyplatin. I hope you find something new for both of us.
I have been told that it is not good to resect if you have it in more than one location since if you resect one area, the other area will still be there. I had the same dilemma and decided not to have surgery. Chemo and radiation have shrunk the liver tumor but I also have in my abdominal lining.
Zupton, I too have Crohn’s Disease and have been told it led to my cc through PSC. I am very hyper from the steroids given with my chemo dose of Gemzar and Zeloda. It has helped my Crohn’s symptoms, tho. I have had surgery and scarring from a bowel resection, too. They have considered resection twice for me but then changed their mind. I have had 8 months chemo, radiation to the liver, but also have mets to the abdominal wall. So I am no longer a candidate for surgery. CC and Crohn’s. Fun, huh?
I am 60 and have had chemo for 9 months. I have had a good response to chemo and no adverse reactions to chemo. I have had infusion with gemzar and take xeloda pills along with it. Currently I am having radiation to the tumor in my liver and then will return to chemo. I know I will need treatment for the rest of my life, but since chemo isn’t too bad, why not try to lengthen my time here?
I read in Devoncat’s post about the KRAS genetic testing. It seems to be a test of the tumor to see if it is mutated. It seems that if it is, your tumor is more aggressive and doesn’t respond as well to treatment. Also, there is a therapy that if you have a mutated gene then you will not respond well to the therapy and there was one case where the person died. I had the testing and mine is not mutated but I am not sure what that means other that what I wrote above.
GaryW,
I was turned down for SIRT by Blue Cross/Anthem in California. Now all UC medical campuses have stopped doing to procedure because of budget cuts and the fact that insurance companies won’t pay.The surgeon who wants to do the surgery turned me away 8 months ago before chemo shrunk my tumor. He is a liver surgical oncologist and was the first to tell me I have cc.
