1 Reply by Amandajoe

(3 replies, posted in Introductions!)

Hi Kelly.  My name is Dianne.  My husband was diagnosed with CC in November 07.  He has had PSC for 13 years.  His CC was found during an ERCP to clear out a blockage in the bile duct.  He had two episodes of cholangitis so the doctors figured there must be a blockage.  While doing the ERCP, they also took biopsies which came back abnormal.  He had another ERCP in Oct. 07 and again the biopsy results were abnormal.  We then went to the Mayo in MN where they were able to make a clear diagnosis.  He's currently finishing up a round of chemo and radiation at the Mayo in MN.  He happened to develop another bout of cholangitis while out there.  He was hospitalized and they put a stent in and a drain as well.  The drain is temporary but needed to clear another area of the bile duct. 

We're hoping to get him home in time for Christmas.  My kids miss him terribly.  They are 8 and 5 years old.  This is a very tough time for everyone.  I wish you and your husband all the luck in the world!!! 

Dianne

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2 Reply by Amandajoe

(15 replies, posted in Introductions!)

Hi Kim.  My name is Dianne.  My husband also has PSC and cholangiocarcinoma.  He was diagnosed 13 years ago with PSC.  And like you, what we feared happened.  We just got our diagnosis 6 weeks ago and were also told that it's in an early stage.  He is currently at the Mayo in MN finishing up a round of chemo and radiation.  While there, he developed an infection in the bile duct which required a stent be put in.  He currently has a drain as well.  My husband has had 4 ERCP's in 4 months (not as many as your poor husband)

I do know your fear!!  I feel the same anxiety, sadness and pain and I can sense the panic you are in.  I'm there too and I have never been so overwhelmed in all my life.

I'm not sure how old your husband is, but mine is 43 years old.  We have two children (girl 8 yrs. and a boy 5 yrs.).  We live in MA so Rochester is quite a distance away.  I couldn't be with him during his treatments which was very difficult.  I've been juggling between being a good wife and a good Mommy and been struggling with the fact that I can't be in two places at the same time.   

Jim should be home in time for Christmas and then we head back out in Jan for another phase of treatment and hopefully, soon enough, we get a liver. 

I do pray for you and your husband.  I'm told that there is a very high rate of survival with these kinds of tumors if found early.  I'm holding on to that and hope that you can find some peace in knowing that.  I will keep my fingers crossed that your husband's has not spread.  I know this is scary for you.  I'm there too. 

Dianne

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