On the day I departed to Chicago to attend my first annual ASCO meeting as a patient advocate (see previous post), I drew blood for a second circulating tumor DNA test.  Once again, no evidence of molecular, residual disease was detected.

After 6 cycles with both pharmaceuticals I began to experience low grade  peripheral neuropathy (numbness in fingers and toes) and dysgeusia (taste change).  We took a brief "holiday" with two cycles of Keytruda alone.  My adverse effects began to subside and my hair began to return.  I then had one cycle both at a reduced dose of Padcev. 
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With a second negative ctDNA test and previous positve results reported in earlier posts - we agreed in consultation with my care team to suspend Padcev and maintain Keytruda.  We also agreed to continue to keep my bladder (no radical cystectomy or chemo-radiation) and monitor status with periodic ctDNA and imaging.

I am interested in collecting data from patients who have experienced a complete pathological response to Padcev+Keytruda treatment after TURBT (prior to radical cystectomy or chemo/radiation) to inform a safe dose de-escalation strategy.

I am also interested in gathering from any patients who have used fasting to avoid adverse effects with Padcev+Keytruda treatment.

I arranged to attend my first annual meeting of the American Society of Clinical Oncology as a new patient advocate.  With over 40,000 domestic and international specialists in each and all of the world's many cancers  in attendance (and over 800 advocates) - McCormick Place in Chicago is one of the few venues which could accomodate this event. [When leading software development for PET/CT I would attend the annual Radiological Society of North America meeting here after Thanksgiving every year.]
  
​I invested in this trip to meet and learn more of the role of patient advocates in supporting clinical research and cancer survivors and learn of the latest advances in the patient care and treatment of bladder cancer. I was encouraged the skill, knowledge, passion and compassion exhibited by the presentations and posters and plenary talks.

In the exhibitor hall I met with representatives of the manufacturers of my treatment - Astellas (Enfortumab Vedotin/Padcev) and Merck (Pembrolizumab/Keytruda) and maker of my circulating tumor DNA test (Signatera from Natera) for detection of molecular residual disease.  One my interests is dose de-escalation for patients with locally advanced/metastatic muscle invasive bladder cancer who exhibit a complete pathological response to this new treatment (~29% of patients in the EV 302 trial which led to FDA approval).  This is clearly a next question of great interest which may be addressed as EV 302 trial participatns continue to be followed and experience from folks like myself can be acquired.

Towards the end of the meeting, I attended a session "The Art and Science of Hope" and commented on the content and quality of this gathering.