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Gavin,
I’m sorry, I missed this post too. It was such a lovely post and thanks so much for sharing.
I hope things get easier for you and your mum. I appreciate all you do for this board.
Best Wishes,
Susie
I just recently asked my oncologist about starting on actigall. She said it is optional but doesn’t feel it would do much good. She said it is more for symptom relief associated with biliary obstructions but doesn’t actually prevent one from occurring or slow it’s progression.
Best wishes!
SusieSally,
Your sister sure has been through so much. My thoughts on chemo are, you can always try it and see. Everyone is different. Maybe the side effects won’t be so bad. If they are you can always stop treatment. But I agree there is no need to suffer if there is no benefit. It’s a tough decision. Keep us posted on what the decision is. She is lucky to have you. I am 32, my sister is 34 and she is very supportive and involved in my treatment decisions. I don’t know what I would do without her.
Best wishes,
Susie
Shar, I agree you should ask them. You have a right to know the treatment plan and what options you have. I’m sure you must be so frustrated. Thoughts and prayers are with you.
Best wishes,
Susie
Kris,
How wonderful your tumor is shrinking enough to discuss surgery!! I’m sure it was not an easy decision but I think you made a wise one. I would think clean margins would be important. Don’t worry. When you get the surgery it will not be as bad as you think.
Just some friendly advice…when I had surgery I had very little pain and it was much easier than I thought it would be. I am 32, which I’m sure helped but I was also in excellent shape and had really strong abdominal muscles. I don’t know what you’re feeling like or what your activity restrictions are, but maybe it would be worth it to discuss exercise with your Dr?
I think Pilates helped me so much and made surgery so much easier. You need those stomach muscles to help you move around after surgery.
Just a thought.Best wishes and I look forward to hearing more good news from you!
Susie
Wow, Marion, this is a good one!!
What I would have done differently…
I wish I had a greater appreciation for life when I was healthy. I remember the things I used to worry/complain about and they are so miniscule that it pretty much makes me laugh out loud.
During radiation, I started to get some acid reflux and let it go for about a week before I said anything to my Dr. I was started on medication and it took another week or two to find the right medication and right dose. During this time I started vomiting three times a day and lost 10lbs in 3 wks. I think some of this could have been prevented if I spoke up sooner.
Why does that darn pride always get in the way??
Take care everyone!!
Susie
Michaeal,
Best of luck with your chemo treatments. I had a port placed and I’m glad I have it.
Best wishes and keep us posted!
Susie
Sue,
Sorry to hear of your husband’s tumor growth. It is way too easy to second guess every decision you make when dealing with this cancer. I will keep you in my prayers.
Best wishes!
Susie
Hi Richard, welcome to the site and sorry you had to join us. Best of luck with your treatment. It sounds like you have a wonderful family to support you.
I am 32 with intrahepatic CC. I had a resection 5-11 and received 3 rounds of chemo with Gem/Cis, 6 wks chemo radiation with Xeloda and now back to 3 more cycles of Gem/Cis.
I’m glad you’re doing better on the Xeloda/Gemzar.
Best wishes and please keep us posted!
Susie
Marion,
This website has been so helpful to me that if I write all the reasons it is helpful, it would easily take the entire time of the conference!
I feel it is so very important to have people who can relate to what you are going through. When I was diagnosed I was on a mission to find out if there were others my age with this cancer (I am 32). Without this website, I would have been lost. This is a place where you can be totally open and honest about anything you are experiencing. Through this website, I have received encouragement, advice, support and education, which I have found to be invaluable. I have also made some wonderful friends along the way and appreciate being able to share my experiences with them.
PS – My oncologist is going to be at this conference as well, Dr. Gina Vaccaro, from OHSU. If you see her, tell her she’s awesome!!
Thank you!
Susan Gaydosh
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