Wow - it's been almost 2 years since my last update, and I had been mentioning the fact I had cancer and then I disappear! How wrong is that?? I actually completely forgot about this blog until a couple of days ago, and then I was feeling terrible as I realized how much I left people hanging!! So sorry for that!! I'll try to do a quick synopsis of my cancer story:
- Shortly after my last blog update in Oct 2016 I had another biopsy and it was still positive for cancer.
- My urologist wanted me to try another type of treatment that he said was 50% effective but we saw other studies saying it was as low as 25% effective.
- We went to Moffitt for a 2nd opinion, and they suggested either bladder removal or a clinical trial that they were going to be starting 'in a couple of weeks'.
- The 'couple of weeks' became months so I found another clinical trial in Detroit near where I was born and still had family.
- I had to undergo 6 biopsies in Detroit in February 2017, and the pathologists there said they were all negative, but Merck's pathologists said one was positive so I went forward with the clinical trial for several reasons, not the least of which included avoiding the standard 'maintenance' treatment for bladder cancer, which is the same BCG drug that was either ineffective on me or very slow to work for me and just barely effective.
- I started the clinical trial of Keytruda in March of last year, going to Detroit every 3 weeks for treatment.
- My father and step-mom, my sister-in-law, and my niece all pitched in taking turns picking me up at the airport and taking me to the hospital. They are rock stars!
- It was supposed to be a 2 year clinical (it's hard to believe I could still be doing it!) but about 5 months into it I developed a lung reaction called pneumonitis and had to discontinue the trial and go on steroids to combat it.
- I was biopsied again in July 2017 and all pathologists agreed I was finally negative for cancer! Woohoo!
- After completing the course of steroids in October 2017 I started noticing my hair falling out.
- My hair loss continued until I finally got a biopsy of my scalp in February of this year.
- The biopsy confirmed it was an autoimmune response to the clinical trial drug (a side effect risk that could happen to any part of my body at any time), but thankfully my body corrected itself and my hair has slowly been growing back.
- I went back to Detroit last week for a check up, and initially my urologist said everything was good and to come back in 6 months for a check-up. But then he emailed me on Friday and said my urine had abnormal cells and he was getting a 2nd reading (talk about a roller coaster ride!).
- He emailed me today with the results from 3 of their top pathologists who all agreed the cells just looked like atypical cells and not cancer cells, so I'm back on the original schedule to just come back for a check up in 6 months!
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