Wednesday, May 29, 2013

Staycation Plague

I took last week off to have a staycation and get some things done around the house. I was thwarted the first couple of days by rain. Took care of a few things the next couple of days and then the plague set in. The girls each came down with a mild fever and some bowel issues. It eventually caught up with me and took me down for a several days. After the worst of it had passed, it seemed to linger a couple of days longer than seemed reasonable. After sleeping through most of Memorial Day it finally occurred to me that I had practically eaten nothing for four days while continuing to faithfully take all of my medications. With no food in my system, the medicines overcompensated with the pain killers knocking me out for most of the day while the prescription laxative kept me occupied in other ways. Once I realized this, I stopped taking the laxative to give my system a chance to catch up. The next day I felt much better and was finally able to eat something. This was perhaps the worst staycation ever.

Tuesday I went back to NIH to follow up on the last visit and get their take on all of the scans that they took during the last session. It was largely more of the same and they didn't really have anything new to offer that I hadn't already heard. The scans show that it has progressed a littl further when compared to the original scans taken back in December. My PSA for the day was back up to 1.41 which they were trying to claim was an upward trend when you took mother last three readings two of which were taken on the same day of my last visit. It almost feels like they are desperately trying to find an indicator that things are regressing. They are still advocating that I enter this study that they have been promoting all along only now the approach is more of an "it can't hurt" message. They are recommending that I get on Aberaterone either via their study or through my oncologist. The write up for the study says that it's for patients whose treatment has stopped working but now they are saying that it would be better to start it before things get to that point. When I tried to get from them what benefit I would expect to get from the treatment, they mentioned that it had been known to extend the life of patients by 4 or 5 months but that if I took it I may never really know what benefit, if any I recieved from it. It all seems a little thin to me. When I last saw my oncologist he said that Aberaterone would be the next treatment that he would go to when it became necessary but he didnt seem concerned that it was needed at this point. I asked them to write up their recommendations for my doctor and I'll discuss it with him further at my next appointment. The biggest frustration in all of this is the uncertainty of it all. Nobody can say anything with any certainty, they can only speak in potential outcomes.

Today I returned to the office a little worse form the wear. After feeling no pain over the days I was sick and not eating, now that things have returned to normal, so have the normal aches and pains. They were a little elevated today, but that tends to be the norm the day after spending the day trekking down to NIH. I didn't sleep very well last night which probably contributed to it all today. Hopefully tomorrow will even out a little.

Tuesday, May 21, 2013

Nothing to see here.

My first two days of vacation have been rather unproductive. I've spent half of the last two days napping. I'm not sure what's going on, I haven't felt bad, I've just been tired and felt a little like a lump but otherwise things have been fine. The overcast and gloomy weather this weekend didn't help and I think I have a touch of the spring allergies. Hopefully tomorrow I'll be more productive.

Saw the radiation oncologist today to follow up on the hour long MRI that Inhad a couple of weeks ago. Even though the report showed an increase, he seemed unconcerned and said that while there may be more spots on the scan than the one back in December, it's possible that they were there before just not as visible. He said that it is "clinically insignificant" in the grand scheme of things and is not a cause for concern.

He did say that I looked a little pale and I mentioned that I've been extra tired the last couple of days. After reviewing my file he said that my hemoglobin is down a little since December, not enough to be concerned at this point, but something to keep an eye on, so I may be a little anemic.

Overall, he seemed to agree with everyone else that things are progressing well and that for now we just need to continue to keep an eye on things.

Friday, May 17, 2013

We Now Return to Our Regular Progress

The follow up at NIH proved to be a very log day full of various tests of one form or another. At the end of the day, the doctors came in and told me that my PSA that morning was 0.9 indicating that it had gone back down from the reading a couple of weeks prior that prompted this unplanned visit. I hope I was reading them wrong, but they almost seemed disappointed that it had gone down. They at least seemed puzzled by it and ordered yet another blood test before I left for the day to compare to the one from that morning. They also informed me that it would take some time for them to compare the scans of that day to the ones ordered by my doctors in the beginning. Apparently their system is different and incompatible with the system the local hospital uses, so they would need to do a manual comparison or something. After drawing my blood one more time, they sent me on my way saying that they would be in touch in a couple of days.

That following Friday, the doctor called me to ask how I was doing and to tell me that my PSA at the end of the day was 1.25, further proof of the erratic nature of the PSA readings. He said that they had not yet completed their analysis of the scans and would get back to me as soon as they had. That was a week ago and I haven't heard back from them yet. I have a follow up scheduled for the day after Memorial Day so we'll see what they have to say then.

I had visited my Oncologist the Thursday before all of this and he didn't seem overly concerned by all of it. He stated that the PSA trend was more important than any single value and that he medicine used in this trial is what he would probably put me on if my current treatment stopped working, but at this point there isn't any evidence of that. He ordered his own PSA test that day, but I haven't heard the results from him yet. I saw my pain management doctor that same day and he felt that I'm doing well overall. He asked if the Meloxicam was helping and I stated that I really couldn't tell, so he switched it out with Etodolac and asked me to let him know if that resulted in any change. He did take a quick look at the report from the long MRI that I had the previous Friday and was concerned that it seemed to indicate a spread but asked me to speak to the radiation oncologist about it. He said that it didn't make sense and seemed to run contra to all other signs and symptoms which have all indicated progress. I have an appointement with the radiation oncologist next week, so I'll hopefully know more then.

I don't know if the change to Etodolac made the difference or not, but I've felt pretty good this week. I've only had to take one or two Vocodin per day, usually first thing in the morning and maybe one on the way to bed. I managed to spend some time working in the yard all weekend and made it to the office 4 days this week, all without feeling any negative after affects. The only reason I didn't go in all 5 days was that Thursday I had a series of phone calls all day that started fairly early. Had I gone in, I would have been holed up in my office with the door shut most of the day on the phone anyway, so there wasn't much reason to drive in. Instead I holed myself up in the bedroom all day while I sat on those calls. Otherwise I would have made it a whole week in the office, a pretty significant milestone. I'm on vacation next week, taking a staycation. Assuming the weather cooperates and all goes well, I hope to clean out the garage, and perhaps my shop as well as get a number of tasks done in the yard. This week has made me optomistic about my chances for success in those endeavors. Hopefully the good feelings that I've had this week will carry over into next.

Saturday, May 4, 2013

Putting on the Brakes

After careful consideration, I've decided that things are moving a little too fast with this whole NIH trial study thing. My wife and I talked it over with my father-in-law and he agreed. They seem to be in an awfully big hurry to get me into the study without a lot of data to go on. The trial information is pretty clear that it's for patients whose current hormone therapy has taken an turn for the worse and is no longer working. They told me that this trial can be taken in parallel with my current treatment regimen. It occurs to me that if the current regimen is no longer working, then what would be the point of continuing it while on the trial? And if it is still working, then how will they know that the results are due to the trial rather than my regular treatment or some combination of the two?

I'm not convinced that is the case with the only indicator being a single increase in PSA. I've talked to several people, both with and without prostate cancer, who have told me that their PSA fluctuates all over the place, that the real concern is the trend line. All subjective indicators point toward my current treatment working. I am feeling better, am able to do more, and my last bone scan showed "overall improvement". I really don't see any evidence that it is not working or that it has taken a turn. I know that they plan to run a series of tests on Monday before trying to get me into it and there is a chance they may say that now is not the time, but I think that I'm going to need some time to digest things and think about it some before agreeing to start the program.

I also have a concern that their eagerness to get me into the trial may be due to my being somewhat of an anomaly for someone with metastatic prostate cancer due to my age and my health. Perhaps they see me as someone more likely to give the trial a positive outcome?

My FIL also recommended holding off until I've had a chance to speak to my oncologist and urologist about it. I've forwarded the information to them, but haven't heard back from either of them yet. I have an appointment with the oncologist on Thursday so I'll be talking to him about it then at the latest. Yesterday I had another MRI, the one that lasts for an hour (imagine being locked in a very small closet and forced to listen to dubstep for an hour), which I had forgotten about. This one was ordered by my radiation oncologist a couple of weeks after I finished my radiation. He wanted to give it a few months for all the carry over to complete and then get this scan for comparison to the previous one so I need to see how those results compare and perhaps talk to him about this study as well.

The bottom line is that while I'm eager to do whatever it takes to get this thing under control, I'm not in a rush to jump into anything. If this trial is right for me, then I want to see hard evidence that it is necessary and have agreement from those responsible for my primary treatment. I do know from all of the doctors and some of my own research that the various treatments for this are somewhat time limited in that eventually they lose their effectiveness as the cancer figures out how to get around them and at some point I will have to switch to another treatment, however I'd like to drag the current treatment out as long as possible as long as it is still working. There's no hurry to switch to another treatment. I understand if they want to get at the cancer as early as possible for maximum effectiveness, but another week or two isn't going to make that much of a difference along those lines. I'm eager to see what the test results show and to share them with my oncologist and urologist and get their opinion. Hopefully they will show that the PSA was just an anomaly and that the current treatment is still working just fine.