More Disappointments

Okay, so last week we finally had my appointment at UPMC's Hillman Cancer Center in Shadyside, a suburb of downtown Pittsburgh. After the usual new patient registration process, we met with the Physicians Assistant, Trevor Fieldstein, who reviewed with us the records that UPMC had received from the Mayo Clinic in Arizona, basically covering everything from the start of my journey back in July 0f 2007. After that we then met with Athanassios Argiris, the Oncologist who would be overseeing my treatment at the Hillman. Dr. Argiris advised us that there were currently no Clinical Research Studies open for enrollment and he suggested I begin already established treatments to slow the progress of my cancer. Needless to say I was quite disappointed about the Clinical Studies, as had I know this, we could've begun the other treatments far earlier, instead of giving the cancer a three week head start with no resistance whatsoever to stop or slow the progression of the disease. After some discussion as to whether to begin the treatment at this new facility in Shadyside or revert back to the UPMC West facility closer to our house it was decided that we would return to where we began, as they could administer the treatment at either facility with equal quality and results, so the deciding factor was time and distance.
So a baseline CT Scan has been scheduled for 4:30 p.m. this Monday, June 8th, with a follow-up and hopefully first full treatment for this Thursday June 11th. These should be once a week treatments for 2 cycles, each cycle being 4 weeks, after which more scans would be done to see if the treatments are yielding any results.
I asked Dr. Argiris about future clinical studies and he said he would put me on a waiting list, should any become available while I'm undergoing the current treatment.
So, for now, I've learned to better manage my pain with the medications from the Palliative Care Dr's. My nutritional intake and weight have seem to have stabilized as I seem to have more energy and a desire to get out and do things, although I'm sure the treatments may change that somewhat, but I'll continue to do what I can for as long as I can.
On a good note, the nutritionist we met with was able to secure a vendor to supply the nutritional liquid required for my tube feeding and made arrangements so there would be no cost to me. This is a huge cost savings to me for which I am truly grateful as his can become quite expensive over an extended period of time.
We lastly met with our Collaborative Practice Nurse, Terri Collins, who resides in Aliquippa, Pa. and she is the go to person should I ever need to get a hold of Dr. Argiris. She was very helpful, informative and pleasant to deal with, stressing that if we ever need anything to not hesitate and call her with any issues and if she couldn't take care of it or get the answer, she wold find out who could. She seems to be a real go getter.
So with that, other than speaking, I've been feeling pretty good. My lower face and jaw continue to swell on both sides whether it be from lymph fluid back-up or the spread of the disease, but it is visually noticeable, and I still have constant pain in that area, even with the different pain medications that I am on.
Both my Dad and sister Cathy attended this appointment, for which I am grateful to both of them, as they more often than not think to ask questions that I do not.
Prior to this appointment, Dad and I attended game 3 of the Stanley Cup Finals in which the Pittsburgh Penguins defeated the Detroit Redwings 4-2. Many thanks to brother-in-law Darren for securing the tickets, and to Karen, Mike, Cathy, Darren, Teresa & Steve who gave the tickets to us as a gift. It was an awesome time and I will be posting a few pics from the game as soon as I get them developed.