Cholangiocarcinoma
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- This topic has 8 replies, 5 voices, and was last updated 14 years, 2 months ago by medgci-net.
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October 1, 2010 at 3:15 am #41549medgci-netSpectator
Hi Susan,
I was also told that I had a year to live and this was after the surgery. It’s going on three years and I don’t plan on giving into it. Tell your Mom to hang in there and not to give up.
Maria
September 26, 2010 at 9:50 pm #41548ronidinkesMemberthank you so much for your story, mom mother was recently told she has < than 1 year to live and she and i are in a DEEP depression with whole ordeal. she is 65 they removed the whole tumor with the whipple, but 2 out of 27 lymph noted returned positive making it a stage 4 chaos. my mother’s name is susan, maybe if she heard from someone given the same diagnosis who is still alive and positive it might help her. susan dinkes 516-764-1647 or sbd50@aol.com
or you can find me on faceook roni dinkesthank you so very much for your story, it give me hope!!!!!!
September 26, 2010 at 3:24 pm #41547lisaSpectatorHi Maria, I am a survivor. I was diagnosed in 8/07 so I am also a three year survivor. They attempted to remove the tumor in 3/08, but it was unsuccessful, but I’m still around despite all projections and prognostications.
September 25, 2010 at 4:23 pm #41546medgci-netSpectatorThank you for responding. It seems someone from Alaska had taken their father to a medical center in North Carolina. I was hoping to talk to her. Are you a caregiver or the survivor? Thank you.
Maria
September 13, 2010 at 5:31 pm #41545lisaSpectatorI think I have seen some Alaskans post here. I live near Seattle.
September 13, 2010 at 3:09 pm #41544medgci-netSpectatorAre there any members from Anchorage, AK with cholangiocarcinoma?
September 12, 2010 at 10:46 am #41543gavinModeratorHi Maria,
Welcome to the site. And thank you so much for sharing your story with us all and yes, you are right in that there is hope. That is quite some story that you have to tell and from what you say, there have been many up’s and down’s along the way. I do hope that you will keep coming back here and sharing with us all. Good luck for the scan later in the month and please let us know how it goes.
My best wishes to you,
Gavin
September 12, 2010 at 4:58 am #41542lainySpectatorWelcome, Maria to our wonderful family. Congratulations on your being a 3 year survivor already. Sure is some kind of roller coaster ride, yes? Good luck with your scan at the end of the month and please keep us posted.
September 12, 2010 at 3:19 am #4000medgci-netSpectatorHi, I was diagnosed with CC 9/2007 at age 63. The tumor was at the junction of the bile duct outside the liver. After many months of traveling from Anchorage, AK to Virginia Mason, Seattle, they finally did the surgery 12/4/2007. The bile duct with the tumor in it was removed along with the gall bladder. My small intestine is now attached to the liver to receive the bile. Had chemo and radiation and many ups and downs but made it through. I went for catscans and blood work every three months. Sometime in 2009, some spots appeared on my liver, I already had one spot that was caused by portal vien thrombosis. But there were three or four new ones. A biopsy was done and it came back negative. Three months later, the scan showed some of the spots had disappeared. However, my tumor marker blood test started to rise. In March 2010, it was about 386 and Sept. 9, 2010 it’s 1500. Other than that, I have no other symtoms. I have hope that the test is just a fluke. I am scheduled for a scan later this month. Originally, I was given a year but it’s going on three now. So there is always hope.
Maria
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