Topic: BACK FROM MD ANDERSON VISIT

Hi everyone,

My husband and I traveled from Ohio to MD Anderson last week and met with Dr. Steven Curley.  (anyone heard of him or seen him??) We were really impressed with him.

Anyway, he decided Jack's tumor was inoperable at this point.  (that's what Ohio State told us too after first saying they would operate......)  Anyway, he said  two of the ducts have tumor in and around them and the third duct doesn't have tumor in it, but it is right up against the outside of it.  Therefore, doing surgery would have no benefit because he feels he couldn't get the whole thing right now.

We told him that Ohio State had told Jack to start Gemzar and IMRT therapy for 5-6 weeks.  Dr. Curley agreed so he will start that on the 19th.  We will then go back to Houston the end of April to see if the tumor "responded" - Not only do we need the tumor to shrink, be we need it to shrink in a very specific place, up against this one duct so it can be operable.  I know this doesn't sound good seeing as only 10-20% of bile duct cancers respond to chemo and radiation and like I said, we need it to work in a a very specific place. 

It's still hard to believe Jack is only 41 years old and has this horrible cancer.  It's also hard to believe since he has no pain and is acting normal.  I know this may change once Gemzar and IMRT start but I heard they are well tolerated?? 

Anyone have experience with that combination??

Hope everyone is doing as well as they can be doing. This really sucks and I feel for everyone going through this.

Any info on Gemzar and IMRT would be appreciated.
Thanks!
Kris

Re: BACK FROM MD ANDERSON VISIT

Kris,
  I'm so sorry to hear your news. I really was hoping they could operate at MD.I believe OSU is one of the few places that perform IMRT on this type of cancer. We went to Pitts. and they do not. Most of the people on this site get chemo only as far as I can tell. My husband took Xeloda with his IMRT.As I have said he had very good results. We met with Dr. Bloomston and Saab yesterday and they don't even want to do chemo at this point. They will do an MRI in 6 weeks and keep an eye on things.He is at the James right now having his stents changed. I am picking him up tomorrow. 
  My husband tolerated the treatments fairly well. He did have some gastritis caused by some damage from the radiation which healed and went away after about 6 weeks.HE had brachytherapy after his IMRT treatments. I don't know if that is an option for you if surgery still is not possible after his treatments are finished. Our radiation oncologist was Dr. Mayr. She did a great job. Tom has been told by every Dr. we meet with that he is going to die from this cancer, eventually. I don't know how he keeps it together but he has a great attitude and that helps him a lot. He says he just doesn't think about it- he leaves that up to me!! Just like you I spend my time reading and trying to keep on top of things and that is very important. Every patient needs an advocate to speak up for them and make sure everything is being done that can be- that is our role. Just try to stay strong and positive and I guess pray a lot. I don't know what else to say, but if you need anyone to talk to you can e-mail me directly and I'll give you my phone #. At least we have been through the same experiences you will be going through at OSU. Best wishes and you're right- it does suck!! Take care. Mary