We left Rochester 4:00 am and arrived in Pittsburgh about 9:00 am. It’s a 5 hour trip if there are no detours along the way and you have a lead foot. I was very anxious to find out what my four options were so we had a cup of coffee and a croissant at their café and then proceeded to the doctor’s office. It was now about 9:30 am and my appointment was for 10:00 am. You know me, I like to be early. My wife says I am always too early. We proceeded to check in, and they gave me the normal treatment. They took my height, weight and vital signs. But this time they make a big deal about my weight. I had loss 4 lbs. So she calls over another nurse to retake my weight again (SOP) standard operating procedure. It was still short 4 lbs. I am thinking great, I am finally getting my weight under control. So, I turned to the nurses and said, “If you gave out cookies, you would not have these problems.” From their point of view, if you lose weight the cancer is active. Meanwhile, I’m thinking to myself, “Of course I lost weight. I’ve been so nervous. . . And, I just drove 291 miles without my breakfast. And we did make a couple of stops along the way.
Anyway, within 15 minutes we were called into the exam room. I am thinking this is great. The temperature in the room must have been 55 degrees. I was told to strip down to my underwear and put on one of those gowns with the slit up the back. I’m thinking, if this is anything like the last visit, I will freeze to death before anyone sees me. So, I told my wife, “If within 30 minutes, no one shows up, I’m going to put my clothes back on.” She said to me, that she was so cold that she had to go to the bathroom. So here we are, I’m shivering and my wife is crossing her legs to hold it in. So we are sitting and waiting, sitting and freezing for about 20 minutes. I did put my shoes back on to keep my feet warm.
Finally, the physician assistant steps into the room and greets us with a big “Hello!!!! ” She proceeds to tell us a little bit about the options, but then stops abruptly. She said: “the doctor should fill you in with all the details.” She then takes a look at my back, and with her hand, finds the lumps and starts counting them. She said “Good they are all there.” I am thinking, where the hell would they go, maybe on vacation? Nahhhhhhhhhhhh!
Anyway, no new lumps to report. She leaves the room to get the doctor and my wife follows her to find the bathroom. Dee returns relieved, just in time here hear a knock at the door.
In walks Dr. Kirkwood who greets us with a big smile and a hand shake. He asks us if Melissa, the physician assistant, has filled us in with the option details and could we go over the details with him to make sure we understood them. My wife and I turned to each other and our faces must have looked white to him. We tried to regurgitate what little information she had shared, although, it was VERY brief and we had not taken any notes. Melissa had told us that the doctor was going to go over the details. Well, my quick thinking wife said that Melissa gave us a very, very brief overview and that at our last meeting with him, we got all of 5 minutes of his time. I guess Dr. Kirkwood did not realize that the last time he had talked to us was before he had the PET/CT scans results and the options were different.
Anyway, he began to draw us a flowchart of the options on the exam table paper. He was really getting into it.
He started with the options at the top, and continued with the first line, second line and third line of defense therapy. It looked like an ISO document. I could draw it for you, but you’d probably fall asleep reading it. The worse part is, you have to have the therapies done in a certain sequence or you can not move to the next line of defense. Another problem, you can not mix and or match. To make things even worse, one of the better lines of defense had to be removed because I have the wrong blood type for the vaccine therapies. I was hoping to use this as my third line of defense.
My wife and I just sat there staring at the flowchart for what seemed like hours. We both started to run different scenarios in our head. We came up with the same conclusion. We needed a therapy that would allow us to “work outside the box” and not “cuff my hands”. We wanted to have the Ticilimumab/ Tremelimumab (from Pfizer …anti-CTLA-4 therapy as my second line of defense. CTLA-4 seems to slow down the immune response, so blocking it with an anti-CTLA-4 antibody may make the immune response more active.
Soooooooooooo! I signed my life away for the phase I study of Patrin in combination with dacarbazine under our protocol 03-091, which is currently not a nationally available trial.
I also signed up to allow Tumor Biopsies. Hey why not. It is FREEEEEEEE!!!! And I get two tumors removed for the price of one. And they say nothing is free in the world anymore. They will remove one and study it before treatment, and then take another one out and see what effect the chemo had on it during the first cycle of therapy. You know me I am always looking for a bargain--and, I am always doing some sort of research.
That is it from my end to yours. That sounds gross. Anyway take care, and keep those messages coming.
If you want to follow my journey you can read it here or at Carepages.com with comments.
http://www.carepages.com/carepages/jimmyBreitfeller
We needed a therapy that would allow us to “work outside the box” and not “cuff my hands”. We wanted to have the Ticilimumab/Tremelimumab (from Pfizer …anti-CTLA-4 therapy) as my second line of defense. CTLA-4 seems to slow down the immune response, so blocking it with an anti-CTLA-4 antibody may make the immune response more active.
That was then, This is Now, NED!!!
"Think Outside the Box"
“It is not the strongest of the species that survives, nor the most intelligent, but the one most responsive to change.”
~Charles Darwin~
Take Care,
Jimmy B
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