I'm wondering if anyone has a spreadsheet listing each of the ADT meds, their respective side effects, and probability (percentage) that patient will experience that side effect. I will soon need to make my decision.
Thank you
Seeking A Summary of ADT Side Effects - Prostate Cancer N...
Seeking A Summary of ADT Side Effects
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egbok
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You can get ADT as shots (Lupron, Eligard, Firmagon, Zoladex, etc.), pills (Orgovyx or Casodex), or surgery (orchiectomy). Most of the side effects are similar because they are due to testosterone deprivation.
Thank you TA
As TA says, the side effects are caused by the testosterone suppression, so they are the same across the drugs. Mostly fatigue, hot flashes, mild to moderate cognitive impairment, elevated blood sugar, slowed metabolism and CVD risk. The sarcopenia (simultaneous muscle wasting and abdominal fat gain) is driving the fatigue in particular.
Sounds bad and it is, but the drugs are very effective for cancer control. It’s not easy to deal with for some, but plenty of cardiovascular and weight training exercise gives you a excellent chance of minimizing all of the side effects.
Being sedentary when older, but especially on ADT is a very bad choice.
Hello London. Since ADT may be in my treatment future I am interested in your comment: "plenty of cardiovascular and weight training exercise gives you a excellent chance of minimizing all of the side effects." Do you have recommendations on sources of information for preparing for and managing side effects of ADT through physical training?
There’s a ocean of information, but at the end of the day it depends on your motivation. This is far more important than what specific path you take fitness-wise.
We are older, and regardless of physical condition we tend to move less. Only the most intrepid of athletes still come close to the kind of workouts they once did much more readily by the time they’re 60+.
In addition, injury management and training smarter become much more important, as well as monitoring one’s parameters (bone density, lipids, BP etc etc).
Fortunately, most of us can make big strides in our strength and fitness with much more modest diligence than we think. The lower on the scale you are, the more dramatic your gains.
What you are able to do, and what course you should follow on ADT is highly individualized. What I can tell you is if you dedicate the time and effort to what I call the big 3: weight training, cardiovascular training and balance/stability/flexibility work you are likely to have no problems with ADT side effects.
No guarantees, but your odds are vastly improved and you delay all the co morbidities that the ADT is trying to exacerbate.
Get a trainer if you can afford it, but it’s not essential. Keeping up the effort and focus on ADT is definitely the hardest part. Fatigue can overtake us if we let up. As long as we don’t succumb to that, all the sides should be quite manageable. Great luck to you!
All very good advice. I am a long distance runner already, but the advice to get a trainer to make sure I stick with weight training and flexibility (both of which I 'hate') are a good idea for me. Thank you!
While I experienced some fatigue, hot flashes and usually spent the day in bed after my shot(RO stated this was unusual), I roughed it out due to the increased probability of success using ADT. It was not a decision at all for me. I am 5+ months on the backside of ADT and side effects are mostly gone.
My husband has Zoladex as an implant every 3 months.His side effects are loads of hot flushes every day (they don’t last long each time, but he just drips while sitting still even), weight gain around his middle and erectile dysfunction.
Good luck with your decision and treatment.
Fran 😷
22.5 cc injection Trelstar every 6 months. Full gynecomastia, hot flashes. Very little or no sweating. Osteopenia and muscle loss in spite of exercise and weights. No weight gain, but I'm doing intermittent fasting (16 hrs./daily) and trying to stay low carb.
81 year old white male
I have been on Eligard, Abiraterone, and prednisone for 5 months now and have to say that the side effects are not nearly as bad as I expected. I get lots of short hot flashes every day. Mild fatigue so no more 4 mile walks. Instead I walk 2x a day for 1.5 to 2 miles with a couple of hours in between the walks. Some mild gynocomastia, but at 72yo I don't take my shirt off much anymore. I have managed to lose 5 pounds but the fat around my waist is increasing. But all in all these seem like a small price to pay for staying alive.
Thanks to all of you for your comments. I’m 69yo, Gleason 9, no metastasis or LN involvement.
I do have extraprostatic extension. I’ll have some type of radiation treatment(s). The specific type(s) is/are to be determined. I’m considering not have ADT. It’s ok if you tell me I’m nuts. I’m ok with pushback. If it matters, I’m not an anti-vaxxer.
I view ADT as a second seat belt. A very uncomfortable 2nd seat belt. I know I’m going to eventually crash, but the first seatbelt (radiation) provides 80-87% protection (you can insert your own percentage and the # of years that’s applicable to). I’m doubtful that (for me) the second seatbelt is worth the lower quality of life. I enjoy so much; chasing my grandkids around and mountain bike riding in epic scenery at high elevations. Big Sky Montana, Park City Utah, Crested Butte Colorado. It’s so mentally and physically healthy for me. I know it doesn’t cure cancer, but ADT doesn’t cure cancer either. It’s “palliative”. I know the studies have confirmed a survival benefit when ADT is used, but I question whether the extra 10% is worth it. PSMA Pet Scan provides an extra advantage (yes, I had it done). A view inside the body we’ve not had before. That tool along with PSA test, can provide early warning of a turn for the worse.
I’m ok with giving up months of my life. I already have fatigue, and I’m somewhat depleted in stamina and strength. I have no interest in taking it to a lower level.
I can and do understand your viewpoint. I doubt though, that you’ll be giving up months of your life, without adjuvant systemic treatment i.e. ADT, it’s more likely to be years that you’ll lose. You haven’t mentioned you PSA level, though a Gleason 9 is serious enough. Radiation plus ADT can be curative for local and some locally advanced prostate cancer s. Without ADT, it’s a huge risk (though it’s yours to take).
Although my Gleason score was 7, PSA 87, the tertiary Gleason of 5 plus extraprostatic extension meant that I was at very high risk for recurrence of the cancer. I was diagnosed in 2019, I had 39 sessions of external beam radiation with neo-adjuvant ADT totalling 3 years. That was the standard of care then (in Ireland).
Nowadays it’s down to 2 years in the US I believe.
I had my last Zoladex shot in Feb this year, my last PSA result was “still undetectable”. Both my oncologist and I were surprised; pleasantly so. I’m aware that I’m not totally out of the woods yet, but I’m in a better place than I thought possible at the outset. My testosterone level hasn’t yet recovered and the 3 years of ADT were certainly debilitating and often unpleasant and a bit depressing at times; but I have come through it with the possibility of a durable remission.
If I decided against ADT, I wouldn’t now be at all hopeful of a future. Please don’t sell yourself short, radiation and ADT were given with curative intent. Radiation on its own often can’t be.
I would only consider you nuts if you didn’t give your self the best possible chance of a curative treatment plan, while it remains an option. Once prostate cancer spreads the curative option is in the rear view mirror.
Think carefully, each person has to come to their own informed decision with the best guidance available at the time. Though whatever you decide, you’ll be welcome here, nuts or not (sorry for the awful pun guys 🤣).
Best wishes to you.
Hugh
in reply to egbok
I was directed towards radiation. I was put on ADT not only to immediately restrain the cancer but to sensitize it to radiation. It also shrinks the prostate. I was given a six month eligard shot. I chose HIFU instead of radiation but had to go out-of-pocket to cover the cost. After the HIFU I was directed by my local urologist to continue ADT for another 18 months. I refused that. One reason being that if I was still on ADT I wouldn't be able to judge the success of the surgery. I developed gynecomastia with just the six months of ADT. Tamoxifen could have prevented that but my urologist couldn't be bothered suggesting it. He also didn't bother suggesting a daily low dose regimen of cialis to ward off penile atrophy, another consequence of ADT.
egbok in reply to
Thank you WSO. Every bit of info helps me.
I'm in a similar boat. 57 with extracapsular extension. I will begin Proton radiation in approx 2 months. I was told ADT would help to "shrink" the tumor, as to make radiation more effective. Took my shot a week and a half ago. Went with 3-months just in case it gets unbearable, but the plan is 6 months on ADT. Good luck!
Thank you Snowdog.
in reply to egbok
I had ADT (Zoladex) for six months prior to EBRT, 20 sessions of EBRT and then one further Zoladex injection, and that was it - the RO said that my testosterone and PSA levels showed that no more ADT was needed.
Very few side effects luckily, hot flushes a week after first injection - my main problem was fatigue and loss of strength eg need two golf clubs lower to hit the same distance, but that's improving now testosterone levels are rising a bit, but nowhere near normal yet. Kept strength exercises going at home, plus a weekly gym session organised by the local prostate support group - that helps I think.
So I would suggest, from my very little experience, that pre ADT would be a good idea - prostate cancer feed off testosterone, so why not whack the cancer pre treatment to weaken it, and then limit the amount of ADT post treatment depending on your test results?
Pre EBRT readings were Gleason 4+3, Stage T3b, PSA 11.5
in reply to
"Pre EBRT" in last line should be "pre first Zoladex", and I should have said that I was 73 when I was diagnosed - sorry for any confusion.
I hear ya. Started with firmagon, then orgovyx for the last 5 months. My symptoms are ringing in ears (not too bad, usually ignorable), hot flashes (usually brief), I believe some mild but noticeable memory and cognitive issues, weight gain around the middle (was pretty well under control until a few weeks of traveling), and definite lack of power and stamina while biking and doing other sports. I find that the most annoying. With my cancer grade and extent (3+5 or 5+3, got two different reports) and no apparent 'escapes', one doc recommended a bare minimum of 6 months but two others said a min of 1 year. I would REALLY like to get off this stuff so I may quit after 9 months - not really enough data so that's a crapshoot if I do it.
As others have said, continued exercise is essential for wellbeing. I am pretty good on the cardio but don't do enough weight type stuff.
Forgot to say that I did 20 imrt treatments with a total of 60 Gray.
All the best to you in making a decision!
Rbiker,
Thanks for your insight. I wonder if there is another large segment of ADT users that don't post, because they have minimal side effects, and have no need to verbalize their discomfort.
Yeah, here's one, The side effects are real, but eventually you learn to live with them. There are ways to compensate for the loss and inconvenience. Your love of hiking and enjoying God's great outdoors will actually be a great asset to you in dealing with ADT. Loss of libido is difficult to mitigate, but my wife and I are amazed at what we can accomplish with no T. Don't throw away years of your life through fear of the unknown. Death by Pca is agonizing.
i suspect that the summary you want, doesn't exist. And "side-effect rates" are not reliable, because of poor reporting and inconsistent definitions.
Wassersug's book:
"Androgen Deprivation Therapy: An Essential Guide . . . -- Second Edition "
. . . by Richard Wassersug PhD. (and others)
has a pretty complete list of what goes wrong, and suggestions for dealing with it.
. Charles
My urologist said that radiation was the way for me to go. He started me on a month's worth of Casodex which was an oral pill then he gave me a 4 month shot of Lupron prior to the radiation. I was on Facebook at the time and joined a group called "Victims of Lupron". Myself and others in the group agreed on one thing. Lupron was the worst thing ever. I got long hot flashes every night when I got into bed. My penis length was about 1/4 inch! And my testicles shrunk to about half their original size.
egbok in reply to
LL,Thanks for sharing your experience.
One year into Lupron, six months to go. Overall assessment - an inconvenience but nothing brutal. It has not stopped me from doing anything - climbing, biking, skiing. I just am down a bit on the hemaglobin and RBCs - so a bit less aerobically fit. My adventure buddies know this and keep the pace reasonable. Libido in the toilet - maintain some level of sex with Viagra. :). Highly recommend weight training - once a week with trainer for me, another session on own - plus my other activities.
Looking forward to climbing out of the testosterone hole, however.
66 yo, Gleason 4/5. limited to prostate, no mets.
Thanks Conbio. That's good info, Glad to hear you're still mostly active.
Like you, I'm Gleason 9 although my PSA was higher than yours -- 15 with finasteride, which means about 30 in actual fact. I had two years of Zoladex and two months of radiation. Truth be told, I had every side effect others have written about including a few (sometimes several) hot flashes every hour, mood swings, insomnia, weight gain, and a zeroing out of libido. I also had some you'll likely not read about in the books: stiff swollen hands with trigger fingers, daily headaches, and widespread joint pain. A very smart urologist from Vanderbilt wrote that one of the most common side effects is an exacerbation of arthritic pain, something I experienced in spades. That said, the treatment knocked my PSA down to undetectable, and I'm still here with a low (though not undetectable) PSA four years after diagnosis. Daily rigorous exercise is hugely important, as is a sensible diet. I have no regrets regarding the treatment. But I also want to say that, ultimately, the decision is yours and yours alone. While I'd encourage you to try treatment, you have a perfect right to refuse it -- the ADT in your case. Nobody should guilt you into making a particular choice. You are in charge.
EGBOK: Some really good comments here.
ME, 79 now. Sixteen years on AS with PSA ranging between 2.3 and 5.0. Then, in 2019, PCa got aggressive. In 6 months, PSA went to 18.6 and Gl went from 3+3 to 4+5. Sept/2019 I had 30 days of Casodex and started on three-monthly hormone injections of Zoladex. Rad onc said the ADT was to lower T level to as close to Zero as possible in order to make the planned EBRT treatments the most effective. Indeed, by April/2020, my PSA went to 0.02, or undetectable, and my T level also went to undetectable. 25 rad sessions in April/May/2020. My own research found that 6 ADT injections were just as effective as the planned 8 shots. The hormone injection SEs started to show up just before the rad sessions started. There were others, but the worst were: (1) Hot flashes (wet) and hot waves (dry) were constant. (2) Arthritic hands were prevalent. (3) Fatigue was terrible.
Now 2Y:3M since last radiation treatment and 1Y: 7M since last ADT injection, and my SEs are still very much with me. If I had to do this over again, I would discuss with rad onc stopping ADT injections after the third shot (i.e. after the end of the rad treatments).
SEs normally dissipate over time. Mine were starting to but the main three stated above have now returned with a vengeance. My arthritic hands are now the worst.
Every guy is different. We all have to decide, in conjunction with the advice of our oncologists, what is best for us. It is important to do as much of your own research as possible. It is equally important to have the best medical advisors that you can find.
Monitoring in Toronto
Thank you for the details of your journey. I truly feel for you. That is just so much discomfort to go thru. I'm continuing to evaluate my treatment options before starting.
All very interesting as it seems my choices are limited - I am 70 and i had a gleason 7 (3+4) and then HIFU but then unusually (I am told) i had a rising PSA to 5 only 3 months after and so now i am gleason 9 (4+5) with PSMA showing nothing outside. On Casodex (bicalutimide 150mg) now and radiation planned at some point. The issue of adding in Lupron or similar is complex for me as have muscle loss anyway as wheelchair user for from childhood and so any exercise or managing fatigue (I have that anyway) might be a big problem.
The research seems clear that ADT does add benefit but also with high risk the radiotherapy dose seems to be as, if not more critical, for outcome. The Casodex alone so far has not had any impact except a bit of sore breast but only been on it a month or so.
Its easy to say quality over quantity but so may factors that are uncertain its hard to make definite decision on exactly what an individuals risk and response is.
Sim: I think that the important thing here for you is that the PCa is still confined within the cap. I talked to my rad onc last week about having a PSMA PET CT scan and he said not until my PSA reaches 2.0. It was 0.02 six months ago, then 0.04 three months ago, and now 0.06. Still well under any concern level. My T level has bounced back to where it was prior to the PCa treatments. Also, it is normal for the PSA to rise with a concomitant rise in one'sT level.
I am very fortunate to have a terrific rad onc. He is informative, caring, considerate, and attentive to my concerns. After doing my own research, I learned that 6 hormone injections were just as effective as 8, and that 25 radiation sessions were just as effective as the 40 the rad onc had planned for me. In both instances, the rad onc agreed with me. What I am saying here is that it is imperative to have a useful on-going dialogue with your medical advisors.
Sim , I do not know how debilitating your situation is and what exercises you are able to do, but I highly recommend getting into a pool and thrashing around a bit on a regular basis.
Monitoring in Toronto
Yes, it’s early days with my oncologist and she does seem very interactive and informative so far. I think it’s a step at a time and still dealing psychologically with a sudden just to Gleason 9 from low 7 after 2 biopsies previous showing nothing more than 7.
I can do some standing lower body and exercise and bed work out but really not sure what the impact of adding lupron will do or add to just the anti androgen casodex as a monotherapy with IMRT.
Pool is a thought !
2004-5 i had a PSA of 6.9 and Gl of 6. Had EBRT for 8 wks…Having a gl of 9 the feelings you have may or may not determine what path you take. In 2021 i had a recurrence and from 10/ 21 to 3/22 i had monthly shots of firmagon. No hot flashes to talk about but definitely weigh gain around the middle. And was getting somewhat depressed. I still swam at the YMCA
3 x weekly which helped!
In 2004 because of my “scores” i was not given any hormone therapy (just the 8 weeks of radiation). Though as others have said ADT is sometimes advisable with radiation. Due to a Gl 9, I would guess that a short time (possibly 6 months) on ADT could be advantageous…
In my situation i was doing fine from 2005 to 2021…At 72, i feel blessed…I am becoming somewhat less stressed about whatever decision i make…🙂
Talking to the hospital psychologist has helped a lot!
I have posted on here a little while ago but thought this insight may help. My Urologist, a surgeon, said that, because I was Stage T3b, ie the cancer had spread to the seminal vesicles, he would recommend that, if he removed the prostate he would want to follow up with EBRT, so why not just go for EBRT, plus ADT of course.
What he DIDN'T say was that that the surgery plus follow up EBRT wouldn't need to be preceded or followed up by ADT.
Being a little cynical, I think that this may have been for budgetary reasons - I am on the State system in New Zealand, and he was the departmental head. Thus surgery plus EBRT being likely to be more expensive than EBRT plus ADT, may have been a consideration
Had I known this then I would have opted for the surgery followed by EBRT and avoided the ADT, and bugger the budget.
Maybe surgery plus EBRT and no ADT is something you have as an option?
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