Keeping positive and a little good news does help!!!
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Great news Amy! I hope this news perked your dad up! A family vacation sounds like great therapy for all! Have fun! Hugs. Nancy
Hi Amy,
Yes this is indeed very exciting news about your dad and he sounds like he is doing real well apart from some of the side effects of his treatments. Grrrr to side effects…..
I don’t know if you know or not, but we have some boards here on the site that may be of help to you and your dad. All of the posts on the boards are from the members here sharing their experiences or news about stuff.
Chemo board is here –
http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=16
And there is a Reactions and side effects board as well here –
http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=45
Just thought i would put up the links here in case that you didn’t know about these boards.
Family vacation next week for you, great!!! Have a blast and for sure, enjoy every moment of it, great stuff!!! And please, let us know how it goes! Have fun and enjoy!!
Best wishes,
Gavin
Thanks all, yes very exciting news. He feels ok for the most part. Goes for treatments every other Thursday, because of the steroids he usually feels great until about Sunday afternoon, then he crashes. No energy and doesn’t do much of anything until about Wednesday but he does have an appetite. Then he feels fine for about a week before he goes to his next treatment. Also, one of the drugs causes him to have a weird tingling feeling if he has anything cold for the first 5 days or so after treatment. He has to drink everything at room temp for those days, and even stepping on a cold tile floor feels like pins and needles, which is strange but he is now getting used to. And the last side effect of the clinical trial drug is a rash. We were told that it can get really bad and usually on the face. He has been lucky, he did get it but it’s not too bad, also has it on his back, but they gave him a cream for it and that helps him feel a lot better.
We are going on a family vacation this week, and I am going to be greatful and enjoy every moment
Amy:
Great news about your dad. I always ask for a printout of my CT scan results after I meet with my onc. I can’t get them until she talks to me first. But I read all the measurements and if I find something she didn’t cover that I don’t understand, her office gets a phone call so someone will explain it to me. I try not to bother them too much, but this is my life so I want to know.
I’m glad to hear the trials are working for your dad. Please thank him for me. These trials help all of us!!!
I didn’t realize it, but I guess I could consider myself part of a trial, too, as I was on oxaliplatin and it is still in Phase III if I read the posts correctly. So hopefully my journey with oxy will help someone else, too.
Hugs,
KrisHi Amy,
This is excellent news about your dad! Thanks a ton for sharing it with us! My fingers are crossed that the trial drugs continue to work as well as this for your dad and that the good news continues to roll for him! Please let us know how things continue to go for him as well.
Best wishes,
Gavin
Great news, Amy!! Sometimes I think Lauren’s doctor is exhausted after we put him through the wringer with a ton of questions. Oh well, that is why he makes the big bucks!! No, seriously don’t ever be afraid to ask any question you like. I am happy for all of you.
Love, -Pam
Amy, that is wonderful news! I am wishing for your Dad to have continued success!
Like Marion said, ask, ask ask as knowlege is powerful when fighting CC. Stay positive as attitude is very important and be strong. Looking forward to hearing more good news.Amy….great news. Your Dad is responding wonderfully to the trial. How is he feeling? What are the side effects?
Amy, I also wanted to mention that you are entitled to know the specifics of your Dad’s response to the clinical trial. Don’t hesitate – ask the questions you would like to have answered.
Again, congratulations and please stay in touch.
Hugs,
MarionMy father went for his CT scan, after 6 rounds of chemo (3 drug clinical trial mixture). The doctor called the day after the scan to tell him that the treatment is helping and his tumors are shrinking. We didn’t get the actual measurement but just that news alone was a push in the right direction. He was feeling so down and i think it was because he didn’t know if he was doing this for nothing.
When we went to his appointment in Boston on Thursday, they said that the smaller tumors on the right side of his liver were shrinking along with the ones in his lymph nodes on the bottom of his liver. They didn’t really say much about the big one on the left side. His chemo nurse also told him later that his tumor marker had gone from 392 to 83, she said that’s fantastic. This was the first time we had ever heard the word tumor marker. So still praying and keeping positive.
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