It's been over a week, and since things have been rather hectic, I'm just now getting it all written into a blog post..
After being discharged from the hospital on the 14th and spending the following weekend getting the pain under control, I spent the early part of last week getting used to the pair of bags attached to my sides. They made getting around difficult and sleeping even more so. Mary helped me work my way through it and by last Thursday I was back at the hospital having the out-patient procedure necessary to have the ureter tubes internalized.
Aside from laying in the prep area for ninety minutes, the procedure went fine and I was back home by late afternoon. It sure was good to no longer have the bags of urine in my pockets but sleeping did not get much better. The first few nights I still was unable to sleep on my side and continued to wake up during the night. It has slowly gotten better and now after a week, last night was the most sound sleep I have had in weeks. Typically, being able to sleep for a solid 3 hours is considered good for us.
Of course in the midst of this we had to take a step back before we could move forward. Last Friday, the day after the procedure, I noticed swelling in my left leg. It was mid-afternoon and because we didn't want this to get worse over the weekend, Mary called the Oncologist's office right away. They asked that I come in as soon as possible so they could perform an ultrasound on both legs. Being that I have a history of blood clots, we were prepared for the worst. It turned out it was bad, but not that bad. I have edema (http://en.wikipedia.org/wiki/Edema) The pictures in the link are much worse than my case!
Dr. V prescribed water pills hoping that they would help a little before we had our monthly meeting with him on Monday. There wasn't much change over the weekend and by the time we met with Dr. V on Monday morning the swelling was relatively unchanged. The edema is being caused by the location of and number of swollen lymph nodes in my abdomen. The best way to address this would be with chemotherapy. The issue we had with moving on to chemo is that I am just getting my strength back after 7+ months on XL-184. All the side effects have subsided and my appetite is great. It is wonderful to be able to enjoy food again. That being said, I still have a way to go to gain overall strength.
The other option we agreed to try was to go back and try Zytiga (Abiraterone) again. This is the drug I was receiving when I was traveling back and forth to Atlanta last year. We know it is a long shot, but I experienced minimal side effects so if it helps to stabilize me and I can continue to get stronger, than it will be a success by our standards. I started taking the medicine on Monday and agreed to meet with the doctor again in a week to check the progress. We met with the doctor yesterday. Although the swelling is still an issue and I am forced to be on bed rest, I am feeling better over all and the swelling improves when I am laying with my legs elevated. Now, many of you know me, and know that if I am feeling ok, to be laying around all day is not an easy task.
Ideally, the Zytiga will start to impact the cancer tumors, shrinking my lymph nodes and the swelling will diminish. Then we can put chemo off for a while. We do have another treatment option that we would prefer to chemo. It is called, MDV 3100. Currently the manufacturers of this drug are attempting to get an 'early access' trial approved. EA trials are basically a Phase III trial with no placebo arm. Designed for patients in my situation that are desperate for treatment options. There is no telling when the availability will happen or which locations across the country will enroll patients. Ideally, it will be sooner rather than later and the real home run will be if KU Cancer Center is an approved site.
First things first, I continue on Zytiga and we keep fighting the fight.