When I last updated my story, my PSA (prostate specific antigen) was starting to rise. My PSA used to take 12-18 months to double but was now was doubling every 4-6 months. We found my first bone metastasis when my PSA was only 0.4. And so when my PSA rose to 0.56, three months later, it was time for the next step in my treatment.
I have a good friend who is a radiation oncologist at the University of Oklahoma Medical Center. He suggested I travel out to Oklahoma for a repeat of the PSMA test (the test that a year earlier found the first boney metastasis). In addition, he suggested I make an appointment with a doctor there who had recently coauthored a New England Journal article on a new pill for lowering testosterone levels.
The repeat test showed massive improvement in my boney met, but it also showed a lymph node with cancer in my left lung. The Oklahoma doctor laid out three options:
- I could do nothing and watch my PSA levels and repeat testing with another PSMA in a year or so.
- I could get radiation to the node and take medication to lower my testosterone.
- I could just get radiation and then watch my PSA and wait. To help make that decision I got one more PSA. It had increased to 0.94, and this meant things were speeding up even faster!
Back in California my radiation oncologist, with the consult, tests, and new PSA in hand, insisted on NOT radiating the lymph node, but rather starting ADT (androgen deprivation therapy) to lower my testosterone and my PSA, and hopefully shrink or stabilize the lung lymph node. That sounded like a good fourth option! So I decided to start a new ADT drug that the Oklahoma doctor had helped research.
Starting a new ADT drug
The drug, Orgovyx, could be taken orally and was shown to be better at reducing testosterone levels than the more common and reliable injectable drug Lupron.1 While I liked the advantage, I found the drug could cost up to $30,000 a year unless I could establish financial need or get my drug coverage policy to pay for it!
After much back and forth with my insurance, a national pharmacy, and my doctor, I finally got permission to get the drug with a hefty copayment. It wasn’t cheap, but I really liked the research and felt it was the right choice.
How it’s working out
I’m now well into my treatment with the oral medicine. Medically, the pills are doing their job, with my testosterone falling from over 400 to around 40, and my PSA going from 0.94 to less than 0.008 (undetectable) in only two months. I’m having hot flashes, but they are certainly bearable and even though I wake with these flushes, I quickly get back to sleep.
More importantly to me, the medication has pretty much zapped my libido. What used to be a reliable response to any sexual stimulation now requires a whole routine to get any sort of erection. I am lucky that I facilitate a great prostate cancer support group of men, many of whom are also on ADT therapy.
Their suggestions have included the use of low-dose ED drugs, using a vacuum for penile stretching, learning to do more innovative love-making with an understanding partner, and even priming attempts at arousal with erotic films or magazines. All of these have worked for many of my fellow groupies, and I have found a combination of them does help to a degree.
So what comes next?
I’m very gratified with the marked lowering of my PSA and testosterone. But what comes next? I’m left with a number of questions. How long must I continue the drug? If I stop the medicine, how fast will my PSA rise? Should the time it takes to double my PSA be the guide to how long I can stay off ADT? When do we repeat a PSA to see if the node has shrunk or enlarged?
I’ve decided the best course is to do my research, formulate my most important questions and concerns, and take them to my doctors and my medical team. I’ll try hard to enjoy all the other aspects of my life and to enjoy each and every day without letting this cancer thing be the most important part of my life! Also, I will keep reminding myself how lucky I am to have this very slow-growing cancer at a time when our ability to keep it at bay is so rapidly evolving!
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