Jan 24 office visit

Office visit yesterday.
As expected we did not find out much on the office visit yesterday. They asked me about my pain situation to which I was able to respond positively that it had improved over the last 2 weeks.
They asked me how I had been sleeping, and that was another story. I have not been sleeping really at all between 10 pm and 5 am. Also my apatite is at a all time low. They suggested that I get back on the Remeron medicine which is an anti-depression medicine that helps with sleep. It also helps with apatite, which I did not know until yesterday.
So I will be going back on that.
They told me that the experimental drug trial would be starting in about 3 weeks, but that was not definite. Since we have been letting the tumors run their course for some time everyone was concerned about waiting that long, because we could get to that 3 week point and then it could be delayed another few weeks and so on.
So they want to do a CT scan in the next 15 days and see how things are developing. If the tumors are showing increased growth since December 4th (last scan) they may not wait to do the trial and put me right away on standard infusion chemo treatment.
That of course means all the standard famous chemo side effects that go along with it. Like vomiting, fatigue, and hair loss. Of course I want to steer clear of these treatments if possible. But the Dr. says that it does not have to get any worse for us to consider these, that it is bad enough as is. If the trial does not get worked out soon, I will have to go on these treatments.
That is all for the new news from the meeting.
Talk to you later,
Greg

Jan 10th 2006 appt.

Did not find out much new info on this visit.
I had been having a hell of a time from Friday the 5th up to the point of the appointment with increased pain in the evenings. To address this they suggested doing a procedure to kill or block the nerve tissue in the pancreas and lymph node. There are 2 ways of doing it, one is by GI surgeon with a scope down the throat and into the stomach then drill over to the pancreas, the other way is by radiology surgeon and is done through the back with a needle through to the pancreas.
My other option is to try a pain medication administered by patch like a nicotine patch.
Guess which one I chose to try first.
They were actually surprised by my response. Why would I want to stay off the operating table? I must be a big sissy. So I guess I am going to try the patch.

We did find out that MUSC is going to participate in the study of the new drug that targets pancreatic neuroendocrine tumors. It is called Radiant-001 at this point. Still do not know the details on how the drug is administered or the schedule or anything like that. But they did say that there should be no hair loss or effects like that. There are 2 other places already running the study so I am going to try to find out more about how it all works. Moffit or Mofitt is one place, but I don’t know yet where or what that is. I have been approved for it by the hospital, and they will handle all the paperwork and stuff like that for the study. I knew I would be published someday, just didn’t think it would be as "patient #4 reports genital itching, and uncontrollable flatulence".

One other thing to note is that my Dr. is retiring at the end of February. He did not tell me this; I had to find out by seeing the receptionist to make my next appointment. Kind of weird huh?
Anyway they do not know who the replacement will be at this time. There are 2 doctors they are looking at, one form MD Anderson in Houston, the other from Yale.
My next appointment is Jan 24th. they should know who the new Dr. is at that point.

I have not slept a full night since before last Thursday, so I am trying to stay home from work today and sleep or at least rest. I hope that they won’t have to call me too much today.

Guess that is all for this time. We will get further details in 2 weeks when I go back to report on how the patch is doing. Maybe I will start smoking so I can wear a patch on both shoulders to balance myself out. Would not want to develop a limp.