04/27/10 – Let’s Try One More Time

I know you all were left hanging at the end of my last post, so now we have a new plan. I will begin the Clinical Trial on May the 11^th. End of Short Report.

I did have the lung biopsy on April 19^th and we were waiting for the results so we could figure out what to do. On Friday (the 23^rd) they called me and told me that the preliminary evaluation showed no lung cancer or identifiable infections. They also said that they could not determine what it was, and they would continue looking at the biopsy and the films. Today they called me and said that after they cultured the biopsy there were no infections found, and they have determined that it is scar tissue from some previous infection of unknown origin. This is good news because they don't have to do anything to get me ready for the Clinical Trial.

Because of the nature of this study, there was a fear on my part that I would have to redo all the tests that I have done in the past month (EKG, Echo, and CT Scan). Also of concern was the fact that my last bone marrow biopsy was done in January and I was afraid they were going to have to do that test again. But apparently the Clinical Trial coordinator from UCSD called Abbott and cleared me to NOT have any more tests except for one more physical exam and round of blood tests. That appointment will happen on May 4^th, and I will begin the Clinical Trial on May 11^th. The first round is for 8 consecutive days with drugs being given the first 5 and tests given the last 3. The second round is 28 days later and is only for 3 days. They monitor you pretty closely during this trial and I will have blood tests every week. This cycle continues for 5-7 months depending on how I respond. As of right now there are only 4 people in the entire U.S. that are on this particular trial so the results will be of great interest to everyone.

So now I am just waiting for all the confirmations on my appointment schedule and we will begin.

Let the show begin.

Terry

04/08/10 – The NEW Plan

If you remember from my last post, I was waiting to find out what is going to happen next. Well, I found out, and here is the new plan. They are still concerned about the 'shadow' on my lung. If I wasn't going into the clinical trial they might have ignored it, but because they have very strict entry requirements they want to make sure that I don't have anything else wrong that could skew the results of the trial.

So next Wednesday I go down to La Jolla for the 'consult' about the procedure. Then the next week on the 19^th I go down for the actual procedure. Now why in the world I can't do both on the same day is beyond me, but that is the plan. I guess because of the type of procedure they need to give you time to 'back out' if you want to. I told them I don't want to 'back out', but it didn't matter. So then we wait until all the experts figure out what is going on. Right now it could be one of about 5 things. A previous scarring from some past illness, a precursor to pneumonia (the one that Donna had, but I didn't get), a nodule of leukemic cells, a fungal infection, or something more serious. Right now they are 95% sure it is one of the first 4. If it is something simple I may begin the treatment in May, but if it is something else, then it may take a while to clear up.

What is hardest about this whole thing is the waiting and the uncertainty of it all. I already have enough of that going on and now this on top of it. I was very excited to begin this trial (and still am if it is to happen).

Terry

04/03/10- Poked, Prodded, Viewed, and now Waiting

April 1st, (no fooling), I went down to UCSD to get my Clinical Trial evaluation done. It was no big deal other than the 8 hours of being there (with 5 hours of that just waiting around. Hopefully I checked out OK because this is the last step before I am accepted for the trial. I had blood drawn (14 vials), a physical exam, an EKG, and echocardiogram, and a CT scan. All of this they pass on to the trial folks (at Abbott), who give their thumbs up or down (kind of like the Roman Gladiators). I didn't expect to get any answers so soon, but Dr. Kipps called at 4:30 on Friday and told me that they saw a 'shadow' on my lung in the CT scan. Right now they don't know what it is. It could be a pocket of leukemic cells (good), or a fungal infection, or something else. On Monday he will get the team of radiologists, pulmonary guys together and try to see what is going on. The possibilities are a lung biopsy, or a bronchoscopy, or a PET scan to get more definition. In any case, it looks like I will be going back to La Jolla next week to figure this out. It also means that I probably won't be able to start the Clinical Trial on April 13^th, unless they can clear up this thing up quickly. They have to get this out of the way before I begin treatment because they don't want to be treating two things at the same time.

Also yesterday we found out that Donna has 'walking pneumonia' and was put on antibiotics yesterday. Of course last night I started feeling bad, so I started my Z-pak to try to ward off anything that might come my way.

It is always something…

Terry