Today Jennifer and I attended a patient forum sponsored by BCAN. Seven different doctors talked about all aspects of bladder cancer. Most relevant to me was the discussions about chemotherapy options, and new research approaches, by two oncologists, Dr. Apolo from NIH and Dr. Dawson from Bethesda Naval Center. We spoke with both about my case. They said that they agreed with the decision to proceed with the RC, but also said that there was a significant chance (in the 70% range) that my cancer would later present in distant locations. They also agreed that there was no established second line chemo regimen since GemCis had failed. Neither recommended immediate adjuvant chemo, but instead wait and see if and when distant mets would surface, but Dr. Apolo acknowledged that an aggressive therapy might mean immediate chemo. Dr. Apolo suggested that the most likely candidate for second line chemo would include a taxene. When they heard that my cancer was micropapillary and nested, they said that they were not surprised that chemo filed, but they both said that they would have recommended it.
Other interesting facts from the forum: Bladder cancer receives the least amount of funding (based upon number of cases per year) for the 20 most common cancers, even though it is the sixth most common cancer (and 4th for men). Bladder cancer is the most expensive cancer to treat. Bladder cancer has had no new FDA-approved drugs for more than 20 years. Bladder cancer, once it metastasizes to other organs, is among the most lethal and fastest-acting of all cancers. There is no cure for metastatic bladder cancer.
Also, Jennifer observed that we were probably the youngest patients there (by 20 years or more). Life isn't fair, eh?
Jennifer reminds me that the BCAN fundraising walk is a week from today. See my fundraising page here (or paste this link: www.stayclassy.org/fundraise?fcid=193020). For those in the DC area, you are invited to walk on the Mall at 9:30 am on Saturday, May 5. Sorry I won't be there, but I'll want pictures.
In Chicago planning news, we're nailed down the lodging. A friend of ours who is a theologian and seminarian put us in touch with a Augustinian order that has a guest house in Hyde Park, which has offered as many rooms and beds as we need. Jennifer, Chelsea, and I will stay there on May 1, then I'll be they'll stay there while I'm in the hospital (Chelsea will likely return to DC over the weekend). Anticipating that I'll be discharged around May 9, we'll move to the Westin for the next 10 days or so. Hopefully, I'll be cleared to return to DC around May 20. Jennifer is looking forward to quiet time in a chapter house that is walking distance from the hospital. I'm grateful for all of the offers for assistance and unexpected graces that provide comfort during these turbulent days.
I am sure you get unsolicited quackery suggestions, please forgive another. I read an article in a science magazine about this guy years ago:
ReplyDeletehttp://en.wikipedia.org/wiki/William_Coley
I believe the theory was that the temperature did the work. Hyperthermia treatment sounds like something that could be added to the mix without fouling up the works.
http://www.youtube.com/watch?v=PsA433Gi8Mk
And I am sure more conventional doctors classify this kind of stuff as peddling false hope.
All I can say is that a memory of reading about the induced fever treatment came to me this morning and I thought there may be some value in passing it along.
I found the original article:
ReplyDeletehttp://discovermagazine.com/2007/sep/the-body-can-stave-off-terminal-cancer-sometimes/article_view?b_start:int=1&-C=