Mets Day 47 - SPT out; NIH consult

This morning I tried to sleep in the car as Jennifer drove up to Hopkins.  I was so tired that I knew I would not be thinking clearly.  After an interminable wait, we consulted with the nurse and explained our frustrations and fears (see the prior post).  We were promised additional references for physical therapists, and given some more information on neobladder training.  Dr. Schoenberg came in and agreed that it was ok to remove the SPT, and in just a few minutes, it was out.  The incision was a sideways V-shape, like a greater than symbol, and each leg of the V was about 3/4 inch long.  The tissue was inflamed and very tender from the sutures, but did not appear to be infected.  Dr. Schoenberg explained that there was no need to stitch up the hole in the neobladder, since it would seal itself in a matter of hours with all that mucus, and completely close over within 48 hours.  Likewise, the external incision would heal itself from the inside out in a couple of days.  We just need to keep changing the dressings, since there is a possibility urine could ooze out.

I have felt an immediate and continual decrease in the amount of pain in the area around the site of the SPT.  It is a great relief to have it out.  One day short of four weeks is quite enough for that tube.  It served its purpose well, but I have been able to drain my neobladder without needing it.  Let's hope it stays that way.

We traveled directly from Hopkins to NIH, where we met with Dr. Andrea Apolo, who is probably the single most knowledgeable doctor about the status of experimental drugs and clinical trials regarding bladder cancer.  She generously spent well over an hour with us, covering the waterfront regarding our options, including the following:

• There is no known cure for Stage IV bladder cancer.  Nothing has been clinically shown to be effective as a cure, including any type of chemotherapy, immunutherapy, radiation treatments, diet, or whatever.  Anyone who says otherwise is ignoring the facts.  
• The research today is focused on trying to slow the pace of the cancer.  Even a few months of additional time is considered a success.  Each advance builds on past advances, and is how other cancers have eventually found effective long-term treatments.  
• Historically, 90% of all Stage IV bladder cancer patients die within 5 years of the Stage IV diagnosis.  The 10% who survive do so because, for reasons unknown, the cancer does not develop in a distant location.  
• Virtually every bladder cancer patient who has distant metastases develop will die from it.  The average (mean) duration from diagnosis of the distant metastasis to death is about 12 months.  
• The standard of care for someone in my position - node positive, no distant metastases found - is to scan every three months or so, but not administer any additional therapy, because there is no evidence that anything will work.  
• There are three clinical trials available to me:  the Dendreon trial, and a trial in Michigan using a drug called sutnet (details here), and a pelvic radiation trial (details here).  Of these three, she thinks that the Dendreon trial is the most promising, and has the fewest side effects.  
• I also can request that my oncologist give me a different type of chemotherapy, even though there is no evidence that any of them would work.  She said that GemCis did not work, so avoid anything using those drugs.  Options could include MVAC with a taxene, or any other cocktail we could dream up.  Insurance likely would fight paying for it, because there is no evidence that it would help.  She called this a "very aggressive" option, and did not recommend it.  She listed it only because she wanted to be complete.
• She said that there was nothing available in other countries that she would recommend considering.  

Of all these options, she encouraged that I look at the Dendreon trial.  She said that it was based upon an interesting theory, but there was no evidence that it would work.  There also was only a 50/50 chance I'd get the drug.  She said that it has very few side effects, unlike the sutnet trial, and was systemic, unlike the pelvic radiation trial.

I think that we've squeezed the sponge dry in terms of research on options.  Dr. Apolo agreed that there was no reason to talk to Dr. Dawson at Georgetown.   All doctors have agreed that the Dendreon study is the best option.  I expect that we'll be pursuing that.