Re: My Brother

Dear Geoff, Peter, Rick & Stacie-

Geoff, I haven't heard of anyone for whom Sorafenib has worked.  You might want to read the Martin family blog - she did it for a brief time.  It does work really well on renal (kidney) cancer.  I really wanted to stick with it despite the nasty side effects, and I don't think they really gave it a chance to work on me.  The trials have very set rules, so I got booted off when my tumors had grown beyond the limits set by the trial.  Another person with CC died earlier this year who was on Sorafenib.  And another young man from the west coast - can't remember his name - also had to go off it as well - it didn't seem to be working for him.  I have a picture of me with the rash it caused, and if I can find a way to post it on my blog, I will.  As for Co-Q-10, it is a coenzyme and I think it is an anti-oxidant, but I'm not sure.  Can anyone out there answer this?

Peter & Rick - Rick, I e-mailed you about copying my very long post to a new topic under the treatment forum called "Treatment Summaries".   I thought this might be a good place where patients could post a summary of their experiences, so we could see what different people have tried and what has worked.

Stacie - thank you for the info!

-Caroline

Re: My Brother

I there so we have been busy with life this summer and I have not been on here as of late, My Brother has started chemo and is on his 4th week so far. He feels good other than some back pain but no real sickness to speak of. He had done so well that the doctor added an extra pill. (Xeloda)
So here is the twist to my story...David is 36 he was told about this now 4 months ago, in the last few months my other Brother whom is 34 as been having the same symptoms....and on Thurs. we found out that he also has Pancratic Cancer that has gone to the liver. What a shock...I am not really sure that I can fully comprehend what has gone on the last week....It is almost surreal. I guess that this is the true test of ones ability to cope with life.
We are optimistic and are going to look into the genetic factor to all of this....anyone knows anything I would love to hear from you...
Also what can you tell me about the whipple procedure?? I am wondering about it and if anyone has done it???
Well I will leave things at this for now...Hope to Hear from someone!!!!!
thanks....Lisa

Re: My Brother

What a terrible shock for all your family. My thoughts and my prayers are with you all.
Patricia

Re: My Brother

Lisa,

Your latest post was shocking.  A couple of things.  On the general information page of the website, you will find the information for T-Gen, you may want to have both of your brothers have biopsies sent and tested there to see what they can tell you.  Mark's insurance covered this procedure.

The interesting thing which may be helpful to your family is that most of the chemo and procedures you will be looking at will be the same because cholangio borrows a lot of information from pancreatic cancer because they are both in the hepatobiliary area.  This will make your research a bit easier as it will serve both of your brothers. 

There is quite a bit of information on whipple procedures on the website, just use the search. 

Lisa, so sorry about the latest news.  Please keep us updated.  You and your family are certainly in our prayers.

Stacie