Here is the basic results from the 2 days at the Clinic last week. If you read Joe's post of the day it is hard to believe we were both experiencing the same thing because I felt much better that it appears he did about it all.
Thursday- blood drawn and CT Scan. The blood draw and CT took maybe 20 minutes total but the IV of the CT Scan contrast and the liquid Joe had to drink took 90 minutes. It was in the basement of the R building and freezing, even more for Joe with the cold contrast.
Nice evening with Joe's cousin and his wife and daughter.
Friday- The appointment was for 9. We got there in plenty of time and even called back 20 minutes early. First the nurse took some vitals. The a medical fellow came in and did a history and physical exam. Either what he did or did not say or the way he was acting but we did not have a warm feeling about it. Very medical with no personality.
Finally Nurse Laura stopped in and she was great. Joe and her spoke on a phone a few times and she was asking for updates and remember so much about the personal part of the conversation. Very warm personal conversations... just the type of person you want for this.
Finally Dr. R came in. He is a nice guy too... but Nurse Laura appeared to have all the logics questions I had. He explained Joe's scans and what it all means.
In order to be part of the study there has has to be no sign of malignancy. Joe's scans showed 3 spots on the lungs that are a concern. One of the spots was there is March and showed no size difference (20-30% of the population have spots that mean nothing), a second spot was believed to be part of the rib showing up (CT scans take an image every 5 mm so what was before and after those 5 mm look like it was part of the rib), the third spot is what is questioned. Again because of the 5mm and where it is it could still be part of the lung arteries. It was not seen in the March scans.
Joe's scan are to be looked at by an independent board of radiologist to determine his eligibility of the study.
The study is this. There is a drug pazopanib that is already FDA approved to be use with Renal Cell Carcinoma (RCC) once the cancer has shown up in other parts of the body (mostly the lungs). Now they are studying the adjunct part. That means if a patient is given pazopanib after a tumor is removed but before RCC is detected elsewhere does it keep RCC at bay more so than those not taking pazopanib? This is a double blind study- could get active drug or get placebo- no one knows. It is for the trade name Votrient from GlaxoSmithKline. The total people to take part will be 1500; at the Clinic about 30. Joe would have to have regular appointments with the doctors in either case for more scans.
The standard of care is scan to look for growth so if Joe is not able to take part in the study we just watch the spots and have scan just as often as he would if part of the study (which could be no different if he is given the placbo). If the spots of concern do show RCC growth then Joe would most likely be started on one of the 6 drugs used to treat it including pazopanib.
Nurse Laura gave us some paperwork to read and stop back and ask question and sign to give consent to share Joe's scan if we wanted to go forward. We did all that. I might suggest that reading Tina Fey's Bossypants in an oncology area waiting room may not be a good idea. Not many people look happy there...but then maybe they all need to read it. I was also laughing while in the exam rooming when waiting.
Nurse Laura also explained to look at this as a chronic decease like diabeties. She said many of the patients take 1 of the drugs for years and don't have issues. She said Joe can drop out at any time, they will work with us on managing the side effects as well.
This is going to be a whack a mole game. We just beat it back each time it pops up.
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