Androgen Deprivation Hell - 008
About three weeks after my first shot of the androgen deprivation medication to lower my testosterone, I began experiencing intermittent hot flashes. Trelstar, the medication my insurance approved, comes in different strengths as a depot injection, which is a slow-release form of medication. The different strengths allow options for a shot every one month, every three months, or every six months.
There is no way to predict exactly how long each injection lasts in any individual, and a monthly shot does not mean once the medicine is stopped, your testosterone returns to normal in one month. In some men, their testosterone level never returns to normal even after the androgen deprivation medicine is stopped, but that is rare. Typically, it takes several months for the testosterone to return to normal even with the lowest dose, which is injected monthly.
Nothing specific seemed to bring on the hot flashes. As time progressed, I noticed that the hot flashes were increasing in frequency and intensity. I’d wake up in the middle of the night with a hot flash. I’d throw off the covers while I began sweating enough for pools of sweat to accumulate in the crooks of my elbows and in the indention at the bottom of my breastbone.
I’d lie there praying for it to end while the air from the ceiling fan slowly evaporated the sweat, and then I’d get freezing cold. I’d put the covers back over me and eventually fall asleep. Initially, this happened about four to seven times a night and I’d have about another hour or two before the next one woke me up. I was also having hot flashes during the day, but those daytime hot flashes initially were very short-lasting and very infrequent.
Unfortunately, both the nighttime and daytime hot flashes increased in intensity and frequency. I’d be at work seeing a patient and sweat would start dripping down my forehead. It was very embarrassing. What do you say to the patient when this happens? I’d just wipe my forehead and continue as if nothing happened.
I began to dread the next hot flash, which triggered my sympathetic nervous system to make the hot flashes worse. I had been doing the recommended regular exercising and diaphragmatic breathing to help reduce hot flashes, but it wasn’t working. I researched additional options for reducing hot flashes, but the recommended treatments were other drugs with a long list of potential side effects, including sedation and blood clots. I wasn’t going that route.
By the second month, the hot flashes increased even more. I was now waking up every thirty minutes with a hot flash, so I basically wasn’t sleeping at all at night. I couldn’t go on like this and began seriously thinking about stopping ADT. It was about this time that I got the results of repeat PSA and testosterone levels. My PSA had dropped from a postoperative level of 4.8 to 2.0 and my testosterone level was down from 600 to 54.
Despite a low testosterone level of 54, I wasn’t considered “castrate.” Meaning the ADT wasn’t working as it should. My doctors wanted the testosterone level lower than 50 and preferably lower than 20. Can you imagine how much worse my symptoms would have been with a testosterone level lower than 20? I can’t.
I also started having episodes of severe anxiety, which I attributed to severe sleep deprivation. Early mornings seemed to be the worse. I’d wake up suddenly from a dead sleep, usually between 1 AM and 3 AM, with anxious thoughts running through my head. These anxious thoughts seemed to be out of my control. I’d lay hands on myself to comfort myself and start praying for inner peace.
Sometimes I’d fall right back asleep until the next hot flash woke me up. But most nights, I’d lie there alternating between anxious thoughts and periods of twilight sleep until my alarm went off at 4:30 AM. Then as I’d be getting ready for work in the morning, my mind would wander to worst-case scenario thoughts and I’d start sweating from the surge of adrenaline. The sweating was so intense it would be running down my sides as if I had just run a marathon. No matter how much diaphragmatic breathing I’d do to calm myself down, these thoughts would linger until I got to work and became distracted by my busy workday.
The combined sleep deprivation and reduced testosterone caused me to become terribly fatigued and severely depressed. I started dreading bedtime, which increased my sympathetic fight or flight stress response and made the hot flashes more intense and more frequent. This was happening despite me walking daily, meditating, and working out with weights twice a week.
It also seemed like I had little control over my emotions. I’d wake up in the morning, cry while eating breakfast, take a shower, and then lay naked on the bed with the ceiling fan on full blast until my hot flash resolved. Then I’d get to work only to start crying when people would ask how I’m doing. I’d drive home from radiation therapy crying the whole time.
Over the weekend, I’d get up, cry during breakfast, then go back to sleep until about 2 or 3 pm. Then I’d get up, take a shower, and go to the gym. My workouts were limited to about one-third of what they used to be, as far as weights lifted and the time I spent in the gym. My stamina dropped dramatically. It felt like the side effects of the ADT were literally killing me under the guise of helping me.
It was about this time that something very interesting happened. I was grocery shopping in “Trader Joe’s” when an old patient of mine walked up to me and said, “Hi Dr. Holden.” She then told me about an interesting treatment for cancer she had come across while doing some online reading. She told me about how in Europe, mistletoe extract is used as a part of cancer care and that “Johns Hopkins University” was currently studying it with cancer patients.
She wrote down the name “Iscador” on a piece of paper. Iscador is a brand name of mistletoe extract made in Germany. She gave me a hug and walked away. I thought, “This is definitely something I should look into because she doesn’t even know I have cancer.”
As soon as I got home, I did a google search and found there was an integrative medicine physician in Jacksonville Beach who does mistletoe extract injections. No way! That was a powerful synchronicity. Mistletoe extract therapy is rarely used in the United States (U.S.) and here was a practitioner prescribing it in my own backyard. I immediately called and scheduled an appointment.
I reviewed some of the medical research on mistletoe extract therapy. It was quite impressive considering it is a natural plant-based therapy. I met with the integrative medicine physician and we began subcutaneous mistletoe injections twice a week. This physician was born in Germany where mistletoe extract therapy was part of her medical training. She came to the U.S. and completed her residency training at “University of Florida College of Medicine” in Jacksonville. She is a super sweet and very intuitive physician.
Shortly after the encounter in Trader Joe’s, the nighttime hot flashes escalated to the point where I was getting essentially no sleep at all. The severe sleep deprivation increased the depression symptoms and short-term memory loss induced by the ADT. I always prided myself on “doing the right thing” from a personal and professional perspective, but there was no way I could continue ADT.
My quality of life had become so bad that I began to have thoughts of checking out of this life. I called and told my urologist that due to the intolerable side effects, I was stopping the ADT injections. I also told my radiation oncologist I was stopping ADT, but would definitely continue the daily radiation therapy.
I had taken one injection of ADT on June 26th and one injection on July 26th and it took until late October before the side effects completely wore off. The urologist had originally wanted me on the higher dose, once every six-month injection, instead of the lower dose once every month injection. My intuition told me to go with the lower dose once-monthly injection. Thank God I did that because it probably would have taken a year for the side effects to wear off if I had done the six-month injection.
This is when I began to do more research regarding ADT and found that while there is evidence that ADT induces prostate cancer cell death, there is also evidence that testosterone is required to simply produce PSA. Meaning the PSA could be lower just because my testosterone level is lower. And in some men, their PSA level remains low while the cancer spreads all over their bodies. Advanced prostate cancer is incredibly complex to understand and treat.
Ironically, ADT drugs help promote the formation of a more aggressive castration-resistant prostate cancer (CRPC). This is because the longer someone is on ADT, the physiology of the cancer cells changes causing them to morph into more aggressive cancer cells that upregulate their response to any remaining androgens (testosterone) in the body. In addition, other mutations occur that let the tumor cells be fueled by other hormones in the body such as cortisol and progesterone.
When prostate cancer stops responding to first-line ADT drugs and the PSA starts rising, the cancer changes from castrate-sensitive prostate cancer (CSPC) to castrate-resistant prostate cancer (CRPC). This occurs at a median of 18-24 months after being on first-line ADT drugs. The prostate cancer tumor cells then become a mixture of hormone-sensitive but predominantly hormone-insensitive cells, which are much more aggressive and more likely to metastasize.
For you science types, here is an interesting scientific journal article to read - Androgen deprivation of prostate cancer: Leading to a therapeutic dead end
The standard of care for treating CRPC requires taking multiple drugs, in addition to continuing first-line ADT drugs. In some individuals, CRPC progresses to an even more aggressive neuroendocrine type tumor, which dramatically shortens a man’s overall survival.
Regardless, all treatment for advanced prostate cancer is considered palliative and not curative, except in a very small subset of individuals. But is the treatment and associated side effects worth a few extra months to years? That’s a loaded question because some men are in so much pain, they will take the drugs, including chemotherapy, to get relief from the pain.
For me, the side effects of ADT weren’t worth it. Maybe it was a blessing in disguise.
In the next newsletter, an old friend returns causing me to prematurely stop radiation therapy. And I find out that a local clinic named after a world-renown cancer center doesn’t even come close to the real thing.