Posted 9/13/2016 7:40 PM (GMT -7)
It's been a busy month. At some point in the past couple months, I had contacted Dr. Kwon's office to schedule an appointment. I sent records and was told to contact them when he finished treatment. When we were told on 8/10 that the Taxotere wasn't working, and they would do scans to restage; I called them again. They took his most recent numbers and said Dr. Kwon's team would review his info and get back to me. I hadn't received a response yet, so on 8/17 Dan received a weekly dose of Taxotere with the intention of receiving a low dose while getting a met on his rib radiated. When we came home that day, there was a message from Mayo. I called back and was given the "call us when he finishes this line of treatment" line. I asked how long it would take to get an appointment at that time and was told it could be 60 to 90 days. I told this person that Dan couldn't go without treatment for that length of time, and she said she would pass this info to Dr. Kwon's nurse. The nurse called me back shortly and I told her his story and my frustration because his MO is a general MO and she said, "Say no more. How soon can you be here?" While I requested copies of his scans on cd, she checked the appointment schedule. She called back soon after, and asked if we could be there at 7am the following Wednesday, but we would have to be in Rochester on Tuesday for blood work before the appointment. We drove up on Monday, got the blood work Tuesday, and checked out of our hotel before the appointment with Kwon, planning to drive back to St. Louis afterward. We got there early and were surprised to see Dr. Kwon come out at about 6:50 and call his first patient. No one was working at the registration desk, and I guess he was ready to get started. We were impressed. Because our appointment was squeezed in, we didn't get the full treatment, but he and his PA got Dan's history and looked at his scans and bloodwork (PSA 55). He felt there was something else going on that wasn't showing up on the scans, so he suggested an abdominal and pelvic MRI and the C11 PET scan. We could either get them done while we were there or come back the following week. We figured we were there, so let's do it now. The MRI was scheduled for 10:30 and the C11 for 1pm the next day, then back to see Kwon at 9am on Friday. It was a flurry of arrangements to check back into our hotel, extend our car rental, get insurance authorization, cancel three dr appointments and make arrangements for dog care at home, but we got it done. I'm not sure the scans showed anything we didn't know already, but he was concerned about a spot on the liver and wanted to have a biopsy of the liver and a bone biopsy done. Because Dan is on blood thinners for a-fib, that would have to wait a week. We came back the following week and Dan had a CT guided bone biopsy of his sternum, then they had planned on an MRI guided biopsy of the spot on his liver, but the doctor ended up not being comfortable with the imaging and recommended watching it for a month and if it progressed get a biopsy another way. We have since found out that the bone biopsy showed only prostate cancer. None of the tests indicated neuroendocrine or small cell mutations. They're recommendation was Jevtana or Jevtana w/carboplatin and scan again after three treatments. We had already been approved by the insurance company for Jevtana, so we scheduled that asap because of the rising PSA. Today was the first treatment, and Dan and I were hesitant to hear the PSA after one low dose taxotere and then three weeks of no treatment. He thought it would be over 300, and I figured if it was doubling every week, it should be around 200. It came back at 75. Who would have thought we would be thrilled to hear that number? So now we're back in the three week routine.
Our local MO told us he had sent slides to Vanderbilt for another opinion and just received a response and the pathologist said he thought it was 99% Gleason 10, but he that there was a tiny bit of neuroendocrine. I think the plan is the hit the G10 with Jevtana while we get approval for the carboplatin. He also got a Neulasta power pack on his stomach that will dose him tomorrow at about 7pm. What will they think of next! Hopefully something will slow this thing down, and he'll continue not having major side effects.
Visiting Mayo was quite the experience; everything was so over-sized, but efficient and uniquely quiet. We really enjoyed Rochester, too. We stayed at an affordable hotel within walking distance that offered free breakfast and on-demand shuttle service to any place you wanted to go. I found out they were pet friendly, so the second trip we took our dog with us. Maybe not the best idea. She had to spend the day at doggie daycare while we were at the hospital because she was barking. My insurance covers travel and lodging, so we're looking forward to going back.
Dr. Kwon's positive attitude really made an impression on Dan. He said most MO are fatalists, and he believes you can get good results by being more aggressive on the high risk guys.
Overall, I'm not sure anything we did there has or will change the treatment plan we already had, but if we wouldn't have gone, we would have always wondered if it would have made a difference.
Spouse DX 2/16
PSA 8/14 1.4
PSA 12/15 13.1
PSA 1/16 31.8
2/11/16 Biopsy 12/12 Gleason 10
2/23/16 CT & MRI Pelvic Nodes Enlarged
3/22 - 5/20/16 43 IMRT sessions
5/25/16 PSA 3.6
5/31/16 CT/MRI bone mets
6/6/16 PSA 7.4
6/8/16 Taxotere PSA 9
6/22/16 PSA 3.2
7/14/16 PSA 5.5
7/20/16 3rd taxotere 11.1
8/3/16 PSA 6.5
8/9/16 PSA 14.9
8/17/16 PSA 28