type III cholangiocarcinoma unresectible
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Hi Kathy, My name is Rose. Please take courage from our story. My partner Bob was diagnoised with cc unrectable in Nov 2008. Prognosis was 3 – 6 months. He commenced 5fu on 7th Jan 09, went to Serbia to celebrate his sons wedding on 28th May 09, commenced gemzar in june 09, MARRIED ME! on the 5th Aug 09, celebrated his grandsons birth on the 7th Aug 09, built our decking in September 09! Believe me while everyone around us is talking about sombre things…… we are busy living! He has had NO hospitalisations, NO surgical intevention, plenty of medication and an abundance of love and support. Bob is now 49yrs old and the ‘key word’ is LIVING!
My very best wishes to you as you continue to live your life… just as you should.
God bless,
Rose & Bob Sevdelinovic, Ireland.
rose mccusker@yahoo.com
My oncologist called today to see what my decision was about staring chemo now. He looked into other options (like beads or maybe the photo thing) but said they would not do those because I have a greater risk for infection – because of only having one bile duct working (with stint). I have been hospitalized twice with bacterial blood infections – once during chemo and radiation. I’ve decided for now to wait for another 8-10 weeks to get the next MRI results. Any growth and I will promptly start chemo as I feel it was chemo and radiation that put this tumor on hold (even though it did not shrink). I told him it was just that I feel so well. If I did not have the cc diagnosis I would think I was very healthy. Then I asked him if the next MRI showed no growth and I was still stable, what would happen. He said we will have the same conversation we’re having now. I was sort of in shock at this. I thought he would say he would have another MRI in 3 months. I guess when to start chemo will always be hanging over my head. Is there a strong reason I should start chemo now when I’m feeling so good? I was so sick during chemo and radiation.
One of my doctors has told me he is very surprised at how well I am doing.
Welcome Kathy.
I am also one of those people whose feeling and looking good despite the charts and numbers. My doctor even hinted that they thought I wouldnt be here now. Love to prove those doctors wrong!
Chemo can shrink the tumors. It didnt for me, but it kept it stable. Others get really good results. You never know.
Hang in there. IF you have any specific questions, please ask.
kris
Hi Kathy,
Welcome to the site although, I am sorry that you have to be here and thank you so much for sharing your story with us all. And you most definitely are not a wimp!
My dad was diagnosed in 2008 with all the symptoms that you mention, jaundice, yellowing of the eyes and skin and the itching. His CC was deemed inoperable and his treatment was PDT. You have a good attitude and I am glad to hear that you are feeling good, feeling good is something to enjoy.
Please come back often as you will get a load of support from us all. And feel free to ask any and all questions that you might have as I know that you will get answers from someone.
Best wishes,
Gavin
Hello Kathy….I would also like to welcome you. By the way, never will I believe that you are a wimp. I think that “stable” is good with this disease and the fact that you are feeling well (including, the lower tumor markers) sure seems encouraging.
I am wishing you the best,
MarionHello Kathy and Welcome to our Family. You are a hero. I mean it. Your attitude will get you far and as you are finding out with CC we don’t buy in to statistics or such and you have already proved them wrong. You also listened to your gut, which is my type of practicing medicine, and got other opinions and therefore you have done everything so right that to me you are a hero. May I ask where you live? There is not much at this point I can say except to wish you well and stay strong and listen to your gut!!!
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