lainy

Welcome to our world and so glad you found us. You are perfectly normal in your response to your sister’s DX. As time goes by and you begin to educate yourself about CC you will become stronger and will be your sister’s best advocate. It’s so true that the fight in one begins to come out and takes over the fear. Please let us know how she is doing and what form of treatment they are going to proceed with. You have found the best place on earth that is populated with the most caring and loving people one could hope for. Feel free to visit us often.

I am sorry to keep saying this but by reading up on this you will know what questions to ask. Everyone is so different. I still do not understand why they cannot do surgery. Again you need to ask them if they have dealt with CC often or is this unusual for them. Still would love to see your mom sent to Mayo or MD Anderson.

Hi Lisa, girl!! Pretty good news. I would expect that with your attitude you will see one heck of a graduation!

Thank you for the update, Rick and I am sure you know by now that you could not be in any better facility then where you are. The rest will all fall in to place.
I don’t think we could classify you as normal if you didn’t have the feelings you are experiencing. Please come around often and keep us posted. We all care and are sending out lots of prayers to you and your family.

Teddy’s doctors have NEVER held back information. Honestly you need to read up as much as you can from our board and the web. Then you will know what questions to ask. To be for armed is to be for warned. The mystery about CC is that the only thing we know for sure is that we know not much. You want to find out if your doctors in fact have treated many with this CC. I would want an aggressive doctor to combat this aggressive disease. The more you learn, the better advocate you can become for your mother. I would opt to go to MD Anderson or Mayo Clinic in MN immediately. Your mom is still young and has a better chance of fighting this but this monster attacks with not much mercy. Yes, stints get infected or blocked. My husband was lucky that way as he never had problems with his stints. Can you tell me where her tumor is located. Teddy’s was in the bile duct valve. Please do some quick reading, then go with what you really feel. If you don’t feel that trust of all trusts with the doctors its time to change. We are all here for you and believe me you will learn fast and become the best advocate your mom could have.

Hi Amy. You indeed have our prayers. I remember when Teddy had radiation last summer. He did quite well then all of a sudden he felt so tired. Didn’t eat much, no energy. Slept so much. Took about a month then he slowly started feeling better. Hope the hospital can do the job for her!!!

Ditto to what Kris said!!!

Welcome, daughter. My goodness but you have had your share! I think what I would want to know is why the doctor does not believe in being aggressive. Sometimes doctors with that attitude have not had enough experience with CC. When they say it’s advanced? Anything can be advanced. I would ask what stage? When you go back to Florida 2 weeks should be enough time to find out the course of treatment and to make sure you are satisfied with the doctors. Can he not go to any other hospital on Medicare? Sorry, can’t advise on chemo as Teddy never had it, won’t work on his CC. I just remembered that when we went to Teddy’s Oncologist the first time he said, “I have no problem with trials and if it ever comes to that I know where to send you”. That won us over. You have come to the right place here and please keep us posted.