July 14, 2015
My appointment with Dr. Safran is at 12:40pm today. This is not the best time for me, it is right at the start of baby nap time. I call in Allie to help Sara while I am out, help get the kids through lunch and walk over to Fain 3.
I am called in soon after I arrive, but then have to wait in the exam room for a while. I have forgotten to grab something to do on the way out the door, so I am left to empty texts off of my dumbphone until there is nothing else to do. This was really not a good day to forget to bring something with me. Anticipation is worse when there is nothing to distract you from it.
Finally, Dr. S. comes in. He is very matter of fact, which indicates to me that something is not right. He tells me that the scan seems good, but it doesn't tell us what we need to know, which is that the cancer growing in my liver is in remission. The radiologist report dances around the subject a little, describing the nodules which were once the cancer in my liver as small, and talks about the scarring left behind from shrunken tumors. It never comes out and says that the cancer is in remission, and this is what we need to know.
This is very disappointing.
He tells me he will set up another PET scan appointment for me, but initially, I should expect to be rejected once again . Since it has already been rejected once before, it will be subject to a peer review, which will probably be with the head oncologist at Woman and Infant's hospital.
He tells me a little more about the study that he is doing with a drug called ziv-aflibercept. This is an FDA approved drug which has been used in chemotherapy treatments to help shrink tumors when oxaliplatin is not effective. Dr. Safran is interested in seeing if this drug can be used as an adjuvant therapy. This is in anticipation of recurrence, which for my specific type of cancer and the stage it reached before it was caught, is very high.
He tells me we can talk more about it at my next appointment, if my cancer is in fact in remission, and I would like to apply to take part in the study.
I stop by the treatment room to see if Faye is on, but she is off today.
I am pretty disappointed as I leave my appointment.
The scheduling nurse calls me when I get home from Fain 3. The next appointment available for a PET scan is on July 29th at 7:30am. I take the spot.