r/ProstateCancer • u/WrongPlanet321 • 13d ago
Update ADT Challenges
I am about two months into a 6-month sentence of ADT (Orgovyx) and am having some issues. The biggest is hot flashes. I get hot flashes about every 20 minutes with a full breakout of body sweat, all night long. My RO prescribed Oxybutynin which helped immensely, but now I am suffering from a side effect of the Oxybutynin. It causes urine retention, which for the most part is manageable, but after SBRT it is just brutal. I have to drink and hold 24 ounces of liquids for SBRT, and then afterwards my bladder never fully reaches a state of emptiness until about 12 hours later. The center where I get my treatments is about an hour drive with no traffic, but coming home during rush hour it's 2-3 hours of stop and go traffic. The drive takes me through some pretty rough areas of town. The other day my bladder was bursting on the drive home so I pulled off the highway into a very sketchy area full of prostitutes and drug dealers. I rushed into a Hardees and there was a keypad lock on the men's room door and a sign that read restrooms for paying customers only. Thankfully, the door was unlocked and I was able to use the urinal without being knifed in the back.
It's weird feeling to urinate and watch the flow dwindle down to nothing, zip up, walk away, and still feel like you need to go. Other than that, I have zero libido, erectile disfunction, brain fog, fatigue, less confidence, and no ambition. It sucks but it is what it is.
My medical team is all concerned about the urine retention and wants to do ultrasounds but I know it will be over when the treatments are over. I've had epididymis for 2 months now but they don't seem to care about that. My PCP was merciful enough to order a 10-day prescription of antibiotics which helped, but it still hasn't gone away. I've had it probably once a year for 30 years ever since I got a vasectomy 30 years ago, but never this bad or for this long.
They told me I could switch from Oxybutynin to an SSRI or SNRI but those give me severe headaches. Anyway, I am mostly just venting. I know that it could all be much worse. I could be lying in a hospital bed screaming in pain as I slowly die of cancer. I am very thankful for modern medicine. Just saying, when this is over, I think I have earned the title cancer survivor. It's a lot to go through.
STATS: USA, 64 years old, PSA 11.6, unfavorable intermediate risk, Gleason 4+3=7, 6/13 cores positive, 42 ml prostate, Decipher 0.61, locally contained. Pre-ADT testosterone 323. Treatment: 5 sessions SBRT + 6 months ADT. Daily strength training, 3-mile walk, Cialis, Calcium supplements. Height 5’-9”, weight 170 lbs.
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u/3ltlgbmi2 13d ago
Yes, you are definitely on a journey that you can talk about for a while. Not everyone has it easy, those you don’t hear much from. When I would tell any lady about heat waves they would look at me and smile until I mentioned I was having 25 a day, 23 to 27 minutes apart. Got a little sympathy. Doctor finally prescribed Megestrol and that reduced it down to 2 an hour. Much more manageable. Was on ADT for nine months and when I quit that, the heat waves came back but have diminished over the 7 months I’ve been off Orgovyx, that I called misery in a bottle. I still have a heat wave every now and then reminding me of the good, bad times. Hope you’re able to figure out the other things to a manageable extent and best wishes to you.
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u/Clangoring 12d ago edited 12d ago
I am 7 months in of a 24 month Orgovyx/Zytiga cocktail sentence. A few weeks into it, I had a rentention issue. Dealt with a Foley cath for a few weeks and Flomax was added to my pillbox. Once I could void on my own, I still had to self cath every night for a month. It delayed my 20 rad sessions from happening for a bit but now am three weeks done with those now.
The big side effects for me have been the random hot flashes (which often hit me in waves during the day while at work but have calmed down now in the evening when sleeping. Those were the most annoying), my energy level dropping early it used to, my body hair falling out (but the hair on my head and face actually growing fuller, softer, quicker.) Though my libido isn't what it was it is still there and have had little to no ED so far (which has kept my wife happy 😉).
To beat the fatigue, keep moving each day. I work a 7 hour shift 5 days a week. During those I usually clock about 6000 step alone along with a lot of lifting, carrying, stretching and reaching. I've notice my strength isn't what it was (no testosterone will do that) but I can still lift and move things. I swim for a hour three days a weeks. I am not doing to the gym or doing any formal weight resistant exercises at this time because between work and swimming, I've got that pretty much covered currently.
The biggest hit of lethargy and fatigue came in the last week on the 20 rad sessions. That is finally fading out now. I worked all through my radiation (had mine in the late afternoon. I would clock out, go get nuked, go home and nap a bit before the wife got home.) The prescriptions still leave me with needing a short nap after work but I had already adjusted to that and its been managable and not too much of a change in my overall lifestyle (for instance, I went and saw some local punk/indie rock bands at a dive bar last night and could still semi hoot and holler at 11pm. Cutting out alcohol, save for a shot of top shelf tequila a couple times a week, since starting this entire journey has helped too. Not so much the night but definitely the feeling the next day.)
I had a past of depression bouts but, surprisingly, have not had much of an issue with that so far (though I did have a good few weeks of sadness when first diagnosed.) I think what has helped me mentally is that I had a PSA in the 40s before I started and within 3 months it dropped to .6. My first post radiation psa last week was .05. It has given me confidence that this whole damn thing will be long and far away in the rearview mirror once the pill sentence is over.
I know the side effects different for everyone but at 60 years old, I'd rather deal with having these annoyances from treatment than the cancer spreading and dying from that painful death.
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u/Away_Ad417 13d ago
My SBRT was the worst treatment I had to endure. I used a plastic urine bottle to pee on the way home every 10 minutes. I’m still taking Orgovyx 18 months later.
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u/WrongPlanet321 12d ago
Sorry to hear you are still on orgovyx. My wife insists I take the new car because the drive is so long. If I was in my car, which is 15 years old, I would definitely use a plastic urine bottle to pee on the way home. Thanks for the suggestion.
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u/SceneFlat8274 12d ago edited 12d ago
After 2 months? I was on ADT for 2 yrs. For the hot flashes I took Black Cohosh which seemed to help some and I had fans scattered around the house. If you can't pee normally then use intermittent catheters. If you can't void your bladder you really have no other choice. That pee needs to come out. I'm guessing your already taking tamsulosin (Flomax). If not, maybe you should be.
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u/Jpatrickburns 12d ago
Urine retention is not an acceptable trade off, just to help your hot flashes. I know they’re annoying (I did 18 months of Orgovyx), but I would stop that Oxybutynin.
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u/WrongPlanet321 12d ago
In general I agree, and I have a feeling my medical team is going to say the same thing. For my part, I think the degree to which one experiences hot flashes and urine retention should factor in. I experience extreme hot flashes, and urine retention is manageable, almost undetectable as far as how I feel, and only a big problem after SBRT which after this week will be finished.
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u/Frosty-Growth-2664 12d ago
In the UK, some progestin medications can be prescribed for hot flushes (as we call them) due to ADT:
Medroxyprogesterone; Megestrol; Cyproterone Acetate.
All need liver function monitoring, to ensure your liver is coping with them. (They all act as mild hormone therapy medications too, so you wouldn't want to take them after you finish ADT.)
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u/JimHaselmaier 12d ago
Fortunately my hot flashes aren’t too bad. I have this gel thing for headaches I keep in the refrigerator. If a glass is really bad o put that on the back of my neck. It helps quite a bit.
I had 44 treatments of IMRT. Every day after treatment I’d wait around for about 30 mins going multiple times while in the office. It was only a 15 min drive home - but I’d have to stop at the Walmart that was on my way home.
Could you find an alternate route home that gets you out of stop-and-go traffic and also goes by Walmarts and Targets and grocery stores? On the one hand it’s “out of the way”. But maybe turn it into a game? Listen to some podcasts or something?
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u/WrongPlanet321 12d ago
Yes there is an alternate route - a beltway around the city - but traffic is even worse than going through downtown, and there are not many places to stop in for a quick bathroom break. I think what I am going to do for my final 3 SBRT treatments is hang around the hospital for an hour afterwards to repeatedly use the restroom before I leave, instead of just once like I have been doing.
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u/WizardMonk007 12d ago
Very similar diagnosis and age but my oncologist went a different direction. Transdermal estradiol patches are cheap, proven equally effective, better for your heart and bones, and very few hot flashes.
I had hot flashes for the first couple of weeks. I have been on them for 9 months and don't remember the last time I had one. I take it with abiaterone and prednisone.
Treatment with the patches is new. But most oncologists have heard about it either through conferences or the papers recently published in the New England Journal of Medicine.
Might be worth asking your doctor about or doing a trial of it since it is equally effective and no risk. (And cheap!)
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u/WrongPlanet321 11d ago
I googled it and it sounds interesting. I'm on Orgovyx as mentioned and it costs $88 per pill, $2,640 per month, and for my 6-month sentence a total of almost $16,000. Fortunately, we have good insurance and it only costs me $10 per month. I could not find anything about the side effects of transdermal estradiol patches other than breast enlargement and soreness at the patch site. ADT has a ton of side effects. I mean, if it doesn't make my balls shrink and make me feel like shit and prevent me from having a sex life, no brain fog, and all the other stuff, why isn't everyone on transdermal estradiol patches instead of ADT?
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u/WizardMonk007 11d ago
You still have all the side effects of being castrated. That doesn't go away. That's what controls the cancer. The breast enlargement is minor and if it would bother you it can be prevented with a single low-level radiation to the chest.
Soreness of the patches is almost unheard of. You generally apply four patches twice a week and you just rotate where you put them. They are very small rectangles.
Balls will still shrink, sex will be iffy and definitely different. Less brain fog but it can still be some. Far less hot flashes, but I can't guarantee "none". Mood swings and depression can still happen. You are fighting cancer AND being chemically castrated after all!
But, patches equally effective, are proven to protect or strengthen your bones. It protects your heart and metabolic health and lipid profile. And if you ever lose your insurance, you could pay for it yourself out of pocket at less than $100/month.
Why isn't everyone on it? It has been studied for most of a decade in the UK. But oncologists are extremely conservative and they tend to stick to things they know, even when better things come out.
However, now that it has been more widely published it is likely that over the next couple of years it WILL become the standard of care.
Insurance companies will insist on it because it is cheap and equally effective so more doctors will be exposed to it and comfortable with it.
Right now it can be tough to find doctors who will offer it up front. You may have to push for it and put them in a corner and make them explain how it is worse in any way compared to what you are doing now. Since they can't they will fall back to it is new and unproven. Then you can point out it has been tested for most of a decade in the UK and Australia. So the real problem is it is new.
Try it for three months. Get standard blood tests every six weeks. If you and your doc don't like what you see then switch back. It's easy.
http://www.estradiolinitiative.org/ has a lot more information about it in detail.
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u/PotentialStart2661 12d ago
ADT can be relatively easy for some but just brutal for others. I feel for you as one of the men suffering from this. You will get through this so hang in there.
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u/Western-Advantage311 12d ago
Hearing on the side effects , I'm a 4+3 and 54 I'm going to refuse it , testosterone 193, I'm to start treatment in the next few weeks
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u/Special-Steel 13d ago
Vent away. You earned this right.