April 4, 2012 at 2:51 am #59576marionsModerator
Amy… I am happy that you have joined the club no one wants to belong to (but is glad to have found.)
Is your husband on week 4 with chemoradiation, xeloda and radiation? If so then he is being treated very aggressively. How is he feeling?
MarionApril 4, 2012 at 1:47 am #59575pamelaParticipant
God bless you, your husband, and family. My gosh you have been through a lot. One thing you said struck a chord with me. You said that you hang on to hope. That is what I always say. My daughter is the one with CC and I always say I will never give up hope. It’s the only thing we have. Hope to hear from you in the future. Oh, and by the way, welcome to this site!
-PamApril 4, 2012 at 12:22 am #59574lainyParticipant
Dear Amy, your husband is a real hero! He has truly been through the mill and I am sure it has played total havoc with you. We all understand and you have come to the right place. You are very wise not to show him you are scared. I just couldn’t show my husband that either as I realized his strength came from my being strong too because he was more worried about me. I used to get in the car, turn the radio up loud, drive around and cry and let out a few yells as well. Worked pretty good, came home ready to face what ever the CC wanted to dish out. I kind of figure that any couple who has 5 kids has to be pretty strong!! I can picture Dad’s little cheer leading group! You are not alone, we are all here for you and please keep us posted as we truly care.April 3, 2012 at 11:45 pm #59573amyParticipant
Thank you so much Gavin and Cathy. Knowing there are folks who care mean alot, especially when you feel like you can’t do enough to make everything better. People who complain about their normal boring lives just don’t get it. Normal is good!
~AmyApril 2, 2012 at 8:36 pm #59572gavinModerator
Welcome to the site, and thanks for sharing you and your husbands story with us all. I too am sorry that you had to find us all here, but glad that you’ve joined in with us all as you will get so much support and help from everyone. I first came here back in 2008 after my dads diagnosis and to be honest, it was the best thing that I could have done then. Everyone helped me so much and I know that you will get the same help and support as well.
The itching and the jaundice, grrrr……so many of us and our loved ones can relate to that unfortunately. And in my dads case, it was the first symptoms that he showed. From what you have said, you so did the right thing in reacting as quickly as you did for your husband in getting him seen and tested by his medical team. And yes, he has indeed been through so much in a very short peroid of time.
I so hope that you will keep coming back here. If you feel like venting then go ahead, we’ve all been there and understand what you are going through and how you feel. We are here for you and we care.
My best wishes to you and your husband,
GavinApril 2, 2012 at 7:17 pm #59571jathy1125Participant
Amy-Welcome and sorry you had to find us. Thank you for sharing your story, your strength and calm will be an inspiration to all in our CC family.
Lots of prayers-CathyApril 2, 2012 at 6:07 pm #6604amyParticipant
Hello to all,
I am sorry and glad to have found an outlet for this very insidious cancer that has struck our family as it has so many others. My husband started just itching like crazy December 12, 2011 and what a trip it has been to this point. I did not leave a moment to waste as he had a left radical nephrectomy in 2004 from a renal cell carcinoma that was found quite by fluke. Yearly CT scans and chest xrays have always been clear. He was due for flow up of that again in January. Two days after the itching started I noticed he was getting jaundice. We were on it immediately. Numerous tests, CTs, MRIs, MRCP, Lab work with a total bili of 18.6 right before surgery, an ERCP 3 times with the placement and replacement of a L duct stent, PTC, and finally a hard right lobe resection leaving only one third of his liver done January 25. We lost no time!! He has been through alot in a very short period of time, and I have to say we had a great surgeon who took the risk to go in after it. The diagnosis was finally intrahepatic cc, stage IV. During surgery, frozen section margins were clear, however on final pathology there was a postitve margin as originally there was only a 1mm margin from tumor to clear liver cells. They also found a positive lymph node imbedded in the liver. It was a mass forming type that was extensive. It had totally blocked the bile duct on the right side of his liver and almost occulded the left. This is the second primary in just 7 years. He is currently on chemoradiation, xeloda and radiation for 5 1/2 weeks. He starting week 4. He will have a few weeks off then 4 months of gemzar IV 3 weeks on and one off.
He has been very strong. We have 5 children, 25, 22, 17, 14, and 12. I have read many posts that have been left here and we are not alone. There is much courage and strength from all that have been effected. The medical oncolgist says the likelyhood of this returning is quite high. I thank God for everyday I have with my husband, and will never show him how scared I really am. I am a nurse and understand the severity of all this and also the hope that I hang on to.
Thanks for the introduction, and the opportunity to share our story, along with the rest. Any thoughts are appreciated…..
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