New here. Intro and questions
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Thank you Lainy!
I have been trying to read and I am encouraged by some of the posts. Unfortunately, my dad has had a return of too many symptoms for comfort, but we fight every day. I flew here with a carry on and it has now been over seven months!
Hello Stacey and welcome to our wonderful family. My husband, Teddy had an 8 hour Whipple 5 years ago and was doing great until the CC returned last Spring. He is 78 now and like your dad went through quite a bit while recovering from the Whipple. It is the largest surgery to the human body, not life threatening but huge! We have a few people on this Board who also go to Barnes.
To chemo or not to chemo is one of the biggest decisions one will ever make. One thing to consider is that he is going to be ok now once he regains his strength, he has been through a lot. It will take some time and his age is on his side. Glad to hear his attitude is so great as that always helps in the healing.
As Gavin said we don’t listen to statistics. Some of our family were given months and are here after years. Some took treatment some didn’t. Just know that what ever you decide is the right decision.
You have already learned that this CC is a roller coaster, nature of the beast.
Try to read up on some of our posts, just go to the search engine at the top of the page and type in a word and posts will pop up on that subject.
Good luck with everything and please keep us posted.Hi Stacey,
Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about your dad, but I am glad that you have joined us. Here you will get a ton of support from people who know exactly what you are going through right now and how you feel.
Thank you so much for sharing your dads exoeriences with us all. I’m afraid that I can’t help you with your question specifically about chemo as my dad never had that, but I know that others will be along soon who will share thier experinces of chemo with you. Also what may be of interest to you is the search function that we have at the top of the page here. Just type in chemo for example and I know that this will throw up a lot of previous discussions surrounding this. And we also have a chemo borad here that may be of interest to to you.
http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=16
I know that is hard to do sometimes, but please try not to focus too much on statistics and try and stay as positive as you can for your dad. Again, I know this is hard to do and I went through this with my dad so I do know where you are coming from here. We are all here for you and I do hope that you will keep coming back here.
My best wishes to you and your dad,
Gavin
One note to include…we tried to get approved for a transplant and because of the current cancer and a 80% resection of his colon, due to a precancerous tumor, (in March 2009), it is a no go…
Hi! My name is Stacey and my dad was diagnosed with CC on March 17. He turned 62 October 7th. He had stents in and then a eight hour Whipple, with complications, on March 30. He had three additional surgeries, April 1,2, and 6th and was left with an open abdomen, due to a hematoma in the area where they removed the head of his pancreas. He was in the hospital 44 days, nine on a ventilator. I took him home May 12th and we continued physical rehab. Due to the open abdomen, all chemo has been on hold. In July, he had a skin graft, in October he finally had his stomach closed. We returned to the hospital four days later with a raging case of MRSA. I brought him home eight days ago and he was doing ok, but they had to reopen his abdomen, so chemo is again delayed. In the meantime, his CA19-9 marker has doubled in the last month. I feel his team of specialists are some of the best (He receives all treatment at Barnes in St. Louis, Missouri) but I am so frustrated by the back and forth of the diagnosis.
We have been told by the same pathologist that the tumor was a C2 and/or a C3. The oncologist has said he wants to do “platinum” chemo…but I also see that the five year survival rate is 0. My dad’s emotional health has been, surprisingly, good throughout. His physical health is now ok, though he has no stamina or strength and cannot live alone.
My first concern is the chemo, if we ever get to it. Are people getting good results and regaining some health. I am really concerned about his quality of life going forth.
Thanks!
Stacey
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