The title is a frivolous attempt at humor, but it appears we are in another holding pattern.
With all of the information that continually bombards those of us dealing with PCa, it was good to hear the doctor from Boston say this today, “You have done a remarkable job of managing your case by not panicking and constantly switching protocols. You have managed to survive longer than the average, longer than most,and in very good overall health!”. This is not the first time we have heard this. We also heard it when we visited MD Anderson in April 2009. It tends to make me puff out my chest when two of perhaps the top five Prostate Cancer researchers in the country reaffirm that we have made the right decisions throughout my treatment process. Long term, things are bad, but they could always be worse.
After reviewing my chart and discussing my case for 15-20 minutes, the doctor informed us that I am not currently a candidate for XL 184 (A requirement for the trial is that lymph node and/or organ involvement would need to be present in addition to the bone metastasis). Believe it or not, I was not discouraged, mostly because of the doctor’s words and presence. He was unbelievably gracious and supportive. He encouraged us to stay in touch and invited us to confer with him again before we make any treatment changes in the future. He also reminded us that clinical trials change and my condition might change as well.
I obviously am not a doctor, but my experience with this journey tells me this, because my treatment options are limited, I have to get the most out of each treatment. When making the decision regarding when it is the best time to alter treatments, I believe it is a combination of considering quality medical advice, PSA doubling times, scan results the patient’s overall health and how he is feeling and then following your personal instincts. That has been our approach, and so far, so good!
With XL 184, we were just trying to line up another option. XL 184 is targeted directly to the bone tumors, which peaked our interest in this relatively new treatment option. When the time comes to choose the next treatment regimen, we plan to have two or three options lined up, Provenge, Abiraterone, or maybe this newer drug XL 184. It is truly a luxury for an advanced prostate cancer patient to have treatment options after being diagnosed almost 6 years ago.
The good news, and this is sometimes hard for me convey in words, is that unlike when I started this journey,there are more options. Five years ago my next step would have been to try chemotherapy again. Since it didn't work as well as we had hoped the first time, the chances of it working a second time are not very good. Now, in late 2010, I find myself with three potential treatments. It will be a difficult decision, but it won’t have to be made until sometime in the future. Once again I find myself sleeping well and remaining encouraged that in the midst of my chaotic life, things are very encouraging!