Johnson Family

Thursday, February 23, 2006

Different Turn
Just as I thought - we are headed in an entirely different direction. We cannot get in the trial right not; apparently there is not an opening??? This is how our doctor appointment went today. Dr. Posey has had such good results with a patient that he is treating with Herceptin that he wants to run some tests on Sam's liver tumor for EGFR (epidermal growth factor). Sam's liver surgery was performed at UAB so they should have everything they need to perform these tests. Why are we just now doing this - I don't know. I guess it's because nothing else has worked for Sam. Right now it looks as if we are going to try Camptosar and add either Erbitux or Herceptin to the chemo cocktail depending upon staining results of the liver biopsy. All of Sam's blood work looked really good so that was a positive note. I understand that Dr. Posey and his patient were on a television program last night in Birmingham discussing her treatment. I do hate so much that we didn't know about it in time to tune in. I am trying to get touch with her so I can tell her about the cholangiocarcinoma.org web site; I am sure she can provide us with some valuable information. She has done extremely well with her treatment for over four years and gives all of the credit to Dr. Posey so I feel confident with his direction for us. Dr. Posey did advise Sam to start taking some pain medication - HOORAY!!!! I think his quality of life will be so much better and when Sam does good, I do too. He also advised Sam to start drinking ProSure so I ordered a case today. I asked Dr. Posey several questions about the different chemo regimens and bottom line is that I think it is a guessing game. There just hasn't been enough research done on this type cancer - what works on one person doesn't work on another. As he said before, there is nothing out there with a strong track record so we just have to keep trying and continue praying. Sam still hasn't missed any work so that is something to be thankful for. We actually got back from Bimingham about 1:30 this afternoon after getting up at 3:30 this morning. Guess where he is - back at work this afternoon - doesn't surprise me at all.

Wednesday, February 22, 2006

Birmingham Tomorrow
We have a 7:20 appointment in Birmingham tomorrow to discuss the trial - have to get up really early! Blood work is first on the agenda and then a meeting with Dr. Posey. They are not doing a CT scan this time; it has only been 4 weeks since the last one. I really don't know what to expect. Most of the time we think we are headed in one direction and then it takes an entirely different turn. I read a really good devotional today that I receive daily from John Fisher who is the writer for Purpose Driven Life Daily Devotionals. It was talking about two different time zones - MDT (My Desperate Time) and GOT (God's Own Time). Most of us run on MDT because it defines our reality -its what we see and feel. Bottom line of the devotional is that Faith is all about these times zones. When you pray, know that you were heard and move ahead, believing in GOT and just maybe, MDT won't be so desperate. Keep us in your prayers and I'll post the results of the visit on Friday.

Thursday, February 16, 2006

For your info -
The name of the trial that Sam will be participating in is UAB 0513 Phase I Study of RX-0201 in Patients with Advanced or Metastatic Solid Tumors. My understanding from the research that I did is that it is a drug by Rexahn that is a first-in-class signal inhibitor that directly blocks the production of Akt, a protein kinase that plays a key role in cancer progression. We haven't heard as to when we will start that trial but I hope it is soon. I did fax the valuable information that Valerie McCrea published yesterday on her web page to our oncologist. There might be something there that would change his mind as to the direction we will take. Thanks again Val for providing this info. Sam's situation is a little different in that the liver tumor has remained stable since the radio frequency ablation and also the soft tissue tumor in the chest has had some shrinkage since the radiation. The mets to the lungs are the ones that we cannot get under control.

Friday, February 10, 2006

We finally heard from Dr. Posey today as to the direction we will take concerning Sam's treatment. He said that since all of the other chemos that we have tried have not been effective, there were really not any drugs left that had a "strong track record". He named a couple more that we could try but did not seem to think that was the way to go. He informed us of a Phase I clinical trial that is starting in Birmingham. I haven't researched it yet but it is not a chemo drug but rather a DNA blocker of protein. I'll post more about it when I found out some more information. He said all of the facts about the trial sounded good. He also said that there was a Cancer Treatment Research Center in San Antonio, TX that had about 40 drugs in study and would be glad to refer us to them if we wanted to go. Sam wanted to think about it over the weekend and will inform him of his decision on Monday. I have a very strong feeling that he will choose the trial in Birmingham rather than going to TX. He likes to keep things simple - that is just the way he is. I think it comes from the engineering background. As soon as I find out the name/details of the trial, I'll post it on the site. Maybe this is the miracle that we have been praying for God to give us.

Monday, February 06, 2006

Johnson Family

Still no word from Dr. Posey. I know they are extremely busy but the waiting is so hard. Sam did have a pretty good weekend - crawled around under the house running cable and wire for his new big screen television; finished just in time for the Super Bowl. Hopefully we will hear something from the doctor soon.