June 9th = Today as my treatment was finishing up an alarm goes off. I felt I had a gas bubble moving through me and wondered if that was what the alarm was about
(lol). At first they came in and told me no problem just a test but then I was told to leave the building as it was an actual fire. Here I am in a skimy hospital gown that barely covers my hinney. In my hurry to get into the gowning room and get dressed I ripped another place on my arm. This time it is on my left arm just below the elbow. I was probably the past patient out of the building, as I walked out the sidewalk was full of those who were waiting for treatment. I guess some will be delayed a while. The fire department was there as we left and we do not know what actually happened. I will find out tomorrow at 5:40 unless I get a call sooner.
June 11th = Saw Dr. Nichols for my weekly appointment after treatment. Everything on my end is about the same. Having a few night time hot flashes finally but nothing earth shaking.
Dr. Nichols kind of dropped a bomb shell on us when he indicated he thought the lymph node was involved. He had always given us the impression that the lympn nodes were not involved even though there was that possibility. When I asked why when the Prostascint was negative. His response was that the CT and PET both indicated it and with my Gleason it was mostly likely. We already knew about the positive PET results but the CT was something out of the blue to us as we had always been under the impression the CTs were all clear and this new information is/was kind of a shock. While we know I am getting IMRT because of the possible lymph node involvement we thought it was not likely and now feel it is most likely. It does not change our treatment options as once the IMRT to the pelvic area is done in a couple weeks we will be getting the prostate and the lymph node hit with Protons.
We learned today from another new patient that UFPTI along with LLUMC are doing a trial of about 160 patients with only 29 Proton treatments of a higher dose rate. I believe the total accumulated dose will be about the same.
Richard & Debbie