Mets Day 72 - scan, PT, info, doc, repeat

In the past couple of days I had a scan, physical therapy, went to an update session on metastatic bladder cancer, and and a long chat with the doctor.  No earth-shattering news, just incremental progress.

The scan was an ultrasound of my kidneys and ureters to determine if there was any scarring caused by the stents.  Scarring is bad because it can eventually lead to blockages. Fortunately, everything looked fine on the scan.

I also visited with the physical therapist.  We reviewed my pee chart -- a one week tracking of every time I voided and leaked, and occasional measurements of how much I voided.  I averaged around 300-400 ml; the maximum was 750 ml, which was after I had been out for a while and had consumed 3 or 4 big gulps of Diet Coke.  This told the PT that my neobladder had the capacity to hold as much urine as a regular bladder; the issue now is control, especially during the night.  She said that the best was to gain that control was to continue doing kegels, so the pelvic floor muscles would be strong enough to hold while the rest of the body was relaxed.  She said that there was little more that she could add, suggesting that future appointments would be a waste of time.

Thursday night, Jennifer and I attended a presentation by Dr. Apolo of NIH.  She gave us an update on bladder cancer research, some of which was from the recent annual meeting of the American Society of Clinical Oncologists.  She reiterated how bladder cancer was an orphan cancer, with underfunded research and poor patient advocacy.  She noted how the FDA had not approved any drugs to treat bladder cancer for over 25 years.  She explained that bladder cancer was a very tricky and adaptable carcinoma, with multiple types of mutations, and the ability to shift mutations as it moved from one site to another.  This meant that there could be no single drug that would control this type of cancer, because each mutation typically would respond to a different type of drug.  She summarized recent research, and how several promising studies had failed to show any positive effect on metastatic bladder cancer.  The bottom line is that there is still no cure for bladder cancer, none on the horizon, and no proven second line therapy for someone like me who has failed first line chemotherapy. 

On Friday morning, I met with Dr. Harold Fraizer, with GW.  He's a partner of Dr. Fred Hendricks, who did my initial diagnosis and both TURBTs.  Dr. Hendricks does not do neobladders, and suggested that I follow up with Dr. Fraizer, since he is more knowledgeable about neobladders.  So now Dr. Fraizer is my local urologist.  Here's my list of issues that I put in my calendar that I wanted to discuss with Dr. Fraizer:

SPT healing
Abdominal pain
Pain mgmt/script
Nighttime continence/fuzziness
External Cath?
CT script
potency
Clinical trials
Stage IV prognosis
Work

We spent the most time discussing my ongoing pain, both around my SPT scar, and in my lower back.  Dr. Fraizer said that was unusual, and wanted to make sure I was not having fluid buildup in my abdominal area.  He also gave me a prescription for heavy-duty naproxin, which he said was better than the percoset or valium for pain management.  He wants me to have a CT scan and a bone scan, which is scheduled for July 2.

As for nighttime incontinence, he said that there were 5 options: (1) doing kegels and strengthening the pelvic floor to extend the time; (2) waking up on a schedule; (3) wearing a diaper; (4) putting in an internal catheter; (5) wearing an external catheter - sort of like a condom that connects to a nighttime drain bag.  I've done 1-4 (I don't want to go back to an internal catheter), so I'm going to focus on 1, while continuing to do do 2 and 3.  I will look into 5 to see if that is a temporary option.

We didn't talk much about impotence.  He said that was a much longer conversation.  He gave me a script for Cialis, but said to make another appointment and we'd talk some more.

We didn't talk about the last three things on my list, either.  It can wait until next time.

Oh, I also checked on the status of the Dendreon trial through Fox Chase.  The delay is with Dendreon.  It could be 3-6 weeks before I get rolling on that.  So we're going to go forward in getting the scans outside of the trial, and finding out if there is any evidence of metastases.   That's what the July 2 scan should tell us.  Cross your fingers!