Mets Day 515: biopsy positive for distant mets

Dr. Apolo just called a few minutes ago to tell me that the pathology from last Thursday's biopsy was positive for metastatic bladder cancer.  Not unexpected, but the news still sucks.  

We talked for while about my treatment options.  She said that the mets was unresectable, meaning that it can't be removed, and likely will show up in additional lymph nodes as time goes on.  Humans have 500-600 lymph nodes, and they can't all be removed.  

She is going to have my cancer sequenced in their DNA machine, and that might give her some additional insights into how many genetic abnormalities there are in my cancer.  (BC usually has a lot.)  

We talked about clinical trials.  She said that, until the short axis of a lymph node could be measured to be over 1.5 cm in size, I would not be eligible for the clinical trials that she would most inclined to recommend.  One of these trials is a study of Cabozanitinib (XL184), and consists of me taking a pill with an experimental compound so see if it inhibits the cancer blood supply.  The trial is not currently recruiting patients, but she'd be able to slip me into it.  Another trial uses AdHER2/neu dendritic cell vaccine, which is a custom-made experimental vaccine using the patient's own immune cells. 

She also recommended that I consult with my clinical oncologist re chemo options.  I asked Dr. Apolo for her thoughts of whether to proceed which adjuvant chemo at this point, and she said that, while it's a difficult decision, she'd lean towards doing it.  She said that she would not recommend re-doing GemCis, but would consider other regimens.  I didn't catch all of the details, but one was dose-dense MVAC, which is MVAC but given the non-traditional way (every 2 weeks with growth factor support) which is better tolerated and has a higher complete response rate over MVAC.  Another chemo option is triplet chemo, perhaps with a taxene. I've emailed Dr. Aragon-Ching to request an appointment, and she promptly responded with my seeing her on Monday, Sept. 16.  

Dr. Apolo also said that I should continue going to Fox Chase Cancer Center for the CT scans, and should ask Dr. Plimack of her recommendations.  My next scan is October 1.  The three of them will put their heads together and see what vile concoction they can brew.  Double, double, toil and trouble . . . .

I asked Dr. Apolo about the median data for formation of solid secondary tumors and morbidity.  While cautioning me that statistics are not a predictor of what will happen to me, and that her information was only the mid-point for patients with advanced bladder cancer, she said that, of patients who received treatment, the average time for the formation of solid secondary tumors was 7 months, and the average time until death was 14 months.  Patients who do not get treatment have shorter median times.  

I also asked about the actual causes of death.  I had assumed that it was organ failure.  Dr. Apolo said that was not the case.  Instead, the spreading cancer releases various types of toxins that cause fatigue, loss of appetite, lack of motion, which in turn leads to further complications, increasingly poor performance, and eventually death.  Various types of blockages can also occur.  

Looks like 2014 is not going to be easy.