ADT Side Effects Feedback

I have Gleason 8 IDC-P (rare and aggressive), but two months after RP I was lucky to find my PSA went to <.008. Although this is good news, my decipher score (.91) puts me at a very high risk of recurrence. I am about to start 39 sessions of aRT, and next step will depend on PSA results. My oncologist said that if PSA rises to .6, he would start ADT.

So I guess I have some time before having to worry about this, but I really would like to get feedback from those who are being administered ADT. I'm most interested in what you do to cope. Seems like the games ADT plays are equally emotional and physical. The emotional aspects really get my attention as coping with PCa and life in general is difficult enough. At the same time, one tends to hear all of the bad and little of the good. Obviously for those continuing taking ADT, the good must outweigh the bad.

Anyway hearing about the good, bad and the ugly would be very helpful. Thank you all in advance.

hankm

38 Replies

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  • I've been on ADT for 3 months now, coming up on my second shot. The biggest issue for me is the hot flashes, especially now that summer is here. I've heard that they get better over time so I'm hoping for that. My opinion of ADT is biased because without it, I wouldn't even be here be to discuss the side effects.

  • Well said Gregg. Thanks

  • I was on ADT (Lupron and Casodex) for 26 months, though I have been off them for the last 2.5 years. While I experiences lots of different side effects while on ADT, they were all pretty minor - more an annoyance rather than a serious problem. Overall I felt my quality of life was high while on ADT.

    If and when you do start it, I do recommend getting lots of exercise which I believe helps with fatigue, bone loss, muscle loss, depression (though this was not a problem for me) and difficulty sleeping.

  • Thank you smroush, and congratulations on being off of ADT for 2.5 years.

  • Have you read the Androgen Deprivation Therapy book? Check it out in Amazon.com. [I admit some bias here since I'm one of the book's authors.]

  • I was on ADT for 4 1/2 years. Side effects: impotence, hot flashes, weight gain, loss of muscle tone. Probably did more good than not.

  • I spent 12 months on ADT from 12/13 to 12/14 following surgery and a rising PSA. I had loss of libido, loss of strength, hot flushes and some weight gain. No real fatigue, depression or other emotional impact. During that time PSA was <.01.

    I then had another 12 months with <.01 PSA but it started to rise, slowly at first but then rapidly so that by 03/17 I was at 2.6 and a doubling time of about 6 weeks. Realising I would soon be back on ADT I started a light weight training regime (I am 72) and paid very careful attention to my diet. Pretty sure ADT slows your metabolism.

    After 2 months I have lost libido again, have hot flushes, but have not lost strength yet and have not gained weight. I want to watch those last two items very carefully and I agree that exercise is the key. I walk at least 2 miles every day, sometimes more, play golf at least once or twice a week and do my weight training at least 5 times per week. This is not a hard regime to follow and so far I feel really good. The flushes are an annoyance, nothing more and at 72 I can accept the loss of libido. My wife is very understanding about that.

    In summary, I find that ADT is not a big issue, but I know a lot of men do find it a big deal. To minimise the effects, I think exercise is the key and diet plays a part.

    Chas

  • What medications were you on when your PSA started to rise?

  • If Motosue's question was addressed to me, the answer is "none". I finished the previous ADT in 12/14 and was freewheeling until it got up to 2.6 in 03/17. But the rise was fairly rapid. I was <.01 until 09/15 then my PSA'S from 12/15 were 12/15 .01, 03/16 .03, O6/16 .09, 09/16 .53!! 11/16 .54, 12/16 .71, 03/17 2.6. Restarted ADT in 04/17. Next psa due end 06/17.

    To summarise I had 12 months undetectable while on ADT followed by another 12 months undetectable, then 12 months increase from .01 to 2.6 still while off ADT.

  • I've been on ADT for 5.5 years.

    Initially pretty much the same s what women go through. Hot flushes, very emotional, bouts of depression, loss of muscle, weight gain. Bear in mind I also had the psychological shock of a terminal diagnosis which probably contributed to the depression.

    After about 3 years they subsided substantially, although my muscle loss continued. Mind you, I am on severe ADT as I'm taking Aberaterone and Prednisone. A lot of side effects from the steroid. Complete change in skin and hair, less greasy. Changes to my throats mucus the most annoying. More easily bruised.

    But, I see this as a very small price to pay against the alternative. My PSA was >600, 7 major bone mets. Severe bone pain and sciatica. I now live pain free, current PSA is 0.1.

    The muscle wastage combined with the severe PCa damage to my femurs has left me somewhat disabled, but I still work a few hours everyday in a sedentary job, and I manage my my disability quite well.

  • Tommy

    Very kind of you and everyone else share. This thread will be very valuable to me and others.

    I read all of these studies and none of them reveal nearly as much as from those speaking from the heart and with generous spirit.

  • Exercise, exercise, exercise. I joined a gym which was a great move in retrospect. Because of the cost I could not talk myself out of not going to the gym. The more I went the less expensive it became. Also once I was there I could much more easily talk myself into the weight bearing exercises and the aerobics. If I was just home I probably would have let much more of the "lazy" vibes rule. ADT pulls you down quite a bit. Now that I am off ADT for 4 months now my testosterone is beginning to return and I am feeling so much stronger and more energetic so that the routine of going to the gym is really paying off. I now look forward to my time there. Also exercise and proper eating control the weight gain and loss of metabolic funtion to keep the fat off.

    We are all different. I was on for 18 months - no hot flashes to speak of, I was on double blockade and there was some breast growth but not terrible.

    Good luck!

  • Hank,

    I stared with numbers close to yours at age 57. After cryosurgery in 2009, PSA doubled in 2010 and for one year on ADT. It was rough with no support group and little information. For SIX years I went off ADT, referred to Active Surveillance. Dr. ADAM and I agreed should PSA double in 6 months or exceed 2.0, I would require ADT. That happened December 2016. February I returned to Casodex, 15 days, then Lupron injection. Now just my second course and I feel like hell!

    Yes balance diet, exercise, reading and public speaking; staying fully in gaged physically, mentally and emotionally. Each person is different, of course.

    This round I have this on line support group and the best book ever; Androgen Deprivation Therapy: an essential guide for Prostate cancer patients and their loved ones (2013) DR.'s Wassersug, Walker and Robinson.

    Please go online and get the book before you start on ADT, you will appreciate being well prepared. I was!

    God bless,

    PeteG

  • I can't add much to what's been said except that estradiol patches applied twice weekly really reduced my hot flashes to nil.

    In ur case I'm not sure why you're not starting ADT immediately vs waiting for rising PSA . It helps To make SRT more effective.

    Bob

  • I'm looking into estradiol patches to help with Lupron side effects, and hope I can convince my oncologist to prescribe them.

    Can you tell me what dose you used? Did you monitor your estradiol blood levels while on the patches? Any other advice you can offer? Thanks!

  • Dose is .1 mg/day when you use the twice weekly script. You can try the .05 mg/day applied once a week to see if it works and if not go up to the twice weekly .1 mg/ day dose. Believe me it works wonders! I believe it was monitored but never was an issue for me.

    Bob

  • Thank you for the information. I have been looking into this and I hope I can convince my oncologist to let me do it while on Lupron. He seems to still think Estrogen = blood clots, based on old data from back in the 70's when men with PC were given ORAL estrogen (DES) and ended up with cardiovascular events from the resulting clots that resulted from the estrogen making a first pass through the liver, leading to clots.

  • See: ncbi.nlm.nih.gov/pmc/articl...

    For results of trials using estradiol. Your doctor should be aware if this.

    Bob

  • Break

    Good point. But today I was told I have thyroid cancer so who knows what they will do? aRT, ADT,..........? I heard multimodal therapy for my condition includes use of bloodsuckers😀

    Making jokes because I'm back at the first stage of grief.

  • Thanks so much everyone for taking the time out - very kind of you.

    Wait till you see the subject of my next thread

  • Hmm. I was Gleason 10, my RP in 2008 cut PSA to undetectable only for a year. Then had RT 39 sessions which cut PSA to undetectable for another 3 years. Began ADT when a suspicious thickening in bladder wall was biopsied as prostate cancer. Doc put me on double, continuous ADT about 2 and a half years ago. PSA went back to undetectable. I'll be on this for life: Eligard shot in tummy every 3 months, Bicalutamide 50 mg pill daily. As I am fond of saying about the side effects "I can live with this." Eventually a failure will mean layering on another drug. Until then, I have found Venlafaxine very helpful in lessening the big hot flashes that interrupted sleep. I work full time. I wear moderate male shield pads, take Cialis, dress in layers, try to walk a lot, and get my sleep. Slightly more emotional I think, but nothing major personality-wise. Keeping a good positive attitude helps a lot! Stay strong. Keep learning about our disease. Get yourself a great Oncologist to guide you.

  • A lot of info to absorb I would say. In my particular case, I was dx with St. 4, G9, seven and a half years ago. I was given 10-15 years. I've been on ADT from the start, and now full time with Zytiga added last year.

    You know the axiom, 'do as I say...', well, do as I say, and not what I did. If you don't exercise now, start, today. Before my dx, I was losing some weight, and was at 158 lbs. when I started radiation. Not too good for a guy 6' 2". I averaged about 165 anyway. I always had a 32" waist until...AADDTT! I blew up to 208 and a 38" waist! Hot flashes were bad at the beginning, now they come and go, and when they do come they're horrible. Then, you have the boob thing, the fatigue, the blah, blah, blah. Best thing to have is an open mind, and a healthy dose of humor. You can't live if you can't laugh.

    Peace, Joe

  • Joe,

    Interesting - I just read that younger than 65 and BMI<30, the correlation to significant weight gain is high. Explanation is that testosterone levels in that group pre-therapy are higher than in the >65 >BMI 30 group, so the magnitude of reduction from ADT strongly contributes to extent of weight gain.

    One would think doctors should be able to review a person's T level and based on it, advise as to probability of weight gain. In your case Joe, sounds like might have had the T level of Tarzan, and it got knocked down big time with ADT. Just a guess.

    Thanks,

    hankm

  • Joe, hankm,

    Before I was diagnosed at age 65 with advanced metastatic PCa I had a baseline weight in the mid 180s with a height around 5'11. During the prior year I had pretty easily lost weight down to around 158. At diagnosis I had the PSA of 5,006 and all kinds of bone mets and involved lymph nodes. In hindsight, the developing disease might very well have accounted for the ease of that weight loss. My Testosterone at diagnosis was 908.

    (Make sure your computer sound is turned on.)

    After going on ADT, my Testosterone went down to the desired castrate range, and over the next couple of years I gained 50 pounds (!), maxing out at around 210. During the following 1 1/2 years I am finally getting my weight down a little, and am currently around 196. Not easy. Still trying to slowly bring it down some more. (Besides, it was getting to be kind of embarrassing to walk around like a 200 pound Peter Pan! Ha. Ha. Ha. Ha. Ha.)

    Charles

  • Charles.

    I really like your sense of humor. And yes, you must have had the T of Tarzan.

    Regards,

    hankm

  • Thanks Charles, I couldn't write my life any better. The difference: I was 50 at Dx, now I just turned 58. Life may suck, but I'm loving it.

    And, thank you for the video, made my day.

    Joe

  • Hank, that's funny. I have to admit, I didn't eat well at the beginning. At the time I was working, and I started to binge on Burger King, I worked there as a teen, so I was cool with the taste. Unfortunately, I got fat. I'm much better now.

    Joe

  • Glad you're better now Joe

    BTW - That movie of Tarzan shows a male:

    1) with slightly enlarged breasts

    2) sort of a high pitched yell

    3) lack of body hair

    Is it possible that.........? :-)

  • YES, YES, we all Tarzans!

  • Better to look like Tarzan than Caitlyn Jenner!!!

    Sometimes the craziness of it all puts one into a state of giddiness because of the tragic comedy aspects.

  • My brother in law has a couple Wheaties boxes by the case with Caitlyn on them. With the cereal in them. I wonder what there worth.

    I've learned over the years that I can't belittle or be an asshole to the LGBT crowd. I have too many people that I know who came out over the years, and I had no clue. So naive.

  • I converted to a vegan diet and have almost maintained pre ADT weight. I work out on the elliptical and lift light weights attempting to maintain my 71 year old "boyish figure" Not! I walk 40-45 minutes every other day. Most days I am tired in the afternoon and don't want to hit the gym but force myself. Most times I get an energy boost from the work out and sleep more sound. However, my belly has grown and my wife says that is the menopause thing. Peppermint oil mixed 60/40 with almond oil has minimized severe hot flashes. Dab the wrists and the back of the neck at night.

  • I was on ADT (eligard) for 6 months. I 'm not loving the gynecomastia that showed up. My research showed that an ounce of prevention might have been advised -- having the breast area irradiated in advance is said to help prevent this condition. My urologist scoffed at this and I was too timid to demand it. Side effects? What do the doctors care? Cynical, yes, but that's what it seems like to me. Having that mammogram was fun ... Not.

  • 3 years ADT and now off for four years. PSA still 0. Hot flashes and that was about it.

  • I won't sugar coat it for you ..For me ADT is impossible to translate.Only people that have hormonal "C" like breast or ovarion forms that alter the hormones can relate..Some handle it easily. Hopefully that's you. Take excellent care of yourself!

  • I have been on Lupron since June 2016. The side effects suck, but I am more worried about the side effect of going off it ( not being here). Here are my negatives. Muscle loss, strong fatigue, fat gain, hot flashes and the list goes on. Perhaps the worst is I get flustered a the smallest of things and confusion. Now the positives. I am still here (just got back from a scuba trip) and my PSA remains less than 0.1. I can do most of what I used to be able to do, just a bit slower.

    Of note, the doctors on my "team" can not agree with how long I should be on Lupron. The radiologist wants me off ASAP. His concern are the effects it can have on your heart. The urologist wants me on for two years, which is his standard treatment. The medical oncologist wants me on for the rest of my life. She bases this on studies showing improved long term survival. As of now, I am confused as to which way to go. I have to September to decide as that is when the next shot is due.

  • So very generous of you all. Amazing

    Learning about BRAF gene. So much to learn. So far not good.

    All a journey

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