Mets Day 43 - Hopkins' views; pain

This afternoon Jennifer, Chelsea and I endured the Memorial Day weekend traffic and drove to Baltimore to meet with Dr. Santa Maria in Hopkins oncology department.  We wanted to pick his brain for his recommendations regarding second line therapy options.  His conclusions were almost identical to Dr. Aragon-Ching's from GW: there is no established second line adjuvant therapy, since GemCis failed; the best thing I can do is get into an experimental clinical trial; he recommended the Dendreon trial, although there was almost no evidence that it would work; Hopkins might be opening the Dendreon trial, which would be the closest location to us.  Chelsea had identified a dozen or so other possible trials, but Dr. Santa Maria explained that those required measurable metastatic activity in a distant location, so I would not yet qualify for that.  He did identify one other possible chemo trial in Michigan, but it was adding another drug into the failed GemCis regimen, and he discouraged that.  We left it with the ball in his court to verify if Hopkins was indeed opening the Dendreon trial there.

We're meeting with NIH on Tuesday, and Georgetown in a week or so, so we're continuing our fact-gathering.  We'll make our decision in the next week or two.

We also asked Dr. Santa Maria about my prognosis.  He confirmed that I was "technically" in Stage IV, the most advanced stage of cancer.  He also confirmed that only 10% or so of patients with Stage IV urothelial cancer survive more than 5 years.  He did not want to offer any opinion on my specific prognosis.  He did agree that I had a "high likelihood" (meaning greater than 50%) that my cancer would recur in a distant location, and once that happened, typical survival was a year or less, although that depended on where it metastasized and how quickly it moved.  In answer to our questions regarding work and life, he said that if there was anything that I really wanted to do, such as trips, or other things, he would advise doing them sooner rather than later.  If I dodged the bullet, he said, then my life would be richer in any event. 

On the drive back, I felt an increasing amount of abdominal pain, different from anything that I'd felt before.  It felt sort of like gas, sort of like cramps, and involved my entire abdomen, not just my neobladder or SP tube area.  After arriving at home, I laid down and tried to rest, but after an hour the pain was intensifying.  I took two Vicodin and had Jennifer get the heating pad to lay over my abdomen.  I wasn't running a fever, and with the pain continuing to build, we called the Hopkins urologist on call for advice.  She told us that it sounded like the bowels were actively cramping, and prescribed a type of anti-cramping drug to counteract it.  She recommended that we first try Gas-X, in case it was just ordinary gas.  Jennifer is picking up the drugs now - I'm glad we're near a 24 hour CVS.

The plugging of the tube overnight last night did not lend itself to a good night's sleep.  I was up every couple of hours trying to void my neobladder - a process that takes 10-15 minutes, factoring in the need to change dressings and Depends.  Usually, I've been able to completely empty my neobladder without needing the SP tube.  The only times that I've had over 50 cc leftover is after I have exerted myself and don't have the strength or energy to use my abdominal muscles.

We finally got the name of a local physical therapist to assist me in my peesical therapy, but have yet been unable to reach her.  I hope she's available over the weekend.

Tonight, I think I'll use the night bag.  I'm pretty wiped out.