Hey Folks, I'm Richard, 58 years old, Gleason 4+5=9, no Metastasis detected with Bone and cat scans, although micro-metastasis are common with Gleason 9. Had external beam radiation (EBRT) and a high dose brachytherapy (HDRT) boost late 2019 and early 2020 last year. Total biological equivalent dosage (BED) was > 200. PSA is undetectable at this point and has been so since the HDRT. I've been on ADT for 14 3/4 months. (1st month was Degarelix, then 12 months Lupron, now back to Degarelix).
I want to try to reach 24 months of ADT. I know of the Nabid study thanks to Tall (Heroic, Generous, Knowledgeable) Allen, but want to attain 2 years minimum of ADT. Nguyen's comments, and Walker and others suggest that 2 years is minimum UNLESS the patient has other major health problems.
Side effects of the ADT are significant for me. After 14 3/4 months, I get tired every day in mid-day. If I then try to nap, I'm too tired to work, but too much awake to sleep. The depression is bad as well. I cry easily and frequently, and negative thoughts are very common.
Right now, I do aerobic exercise for ~40 minutes about 6 times per week. I'm on Lexapro for depression (10 mg), I'm trying to eat healthfully, taking vitamin D (4000 icu) and calcium supplement. I'm also trying to do this 16/8 diet and trying to reduce carbs. (But MAN I do cheat sometimes. It's like carbs are crack cocaine for me, and once I start I can't stop). I've lost about 20 pounds since I started eating more healthfully. I have 4 cups of caffeinated coffee per day, in the morning. (Otherwise healthy, and don't smoke nor drink). But I have about 9 months of ADT left to go.
PLEASE GUYS: what tactics are you using to deal with the ADT symptoms?
The ADT side effects deminish with time. Untill that happens physical exercise and lots of sleep. Maybe you should deal with depression by way of some psychotherapy.
Unfortunately - the side effects for many men do not diminish with time - they can become worse. Some may become less noticeable as the patient grows accustomed to the side-effect.
The cardio side effects in particular are cumulative and increase with longer ADT treatment.
In older men treated with ADT, deaths from cardio incidents is not insignificant, and the studies I've seen show that the longer one is on ADT, the greater the chance of serious cardio side-effects. ADT also can cause anemia, which doesn't get better with time (and takes time to recover from after ADT is completed), and lipidemia and Hyperlipidemia making the cardio issues more severe.
That's not counting the "minor" side effects of hot flashes and exhaustion, moobs, depression, and sarcopenia. (All of which I experienced.)
The one thing Nguyen doesn't address in his discussion is the effect age has on the side effects. His suggested treatment 24-month regime may be fine for a younger, otherwise healthy victim of PCa. It may even be desirable if it can be shown to reduce potential reoccurrence - which for a younger man is a real concern.
With older patients, with comorbidities that come with age - IMHO - 24 months may cause severe enough other issues that the possible advantage of the additional 6 months of ADT is offset by the increased side-effects, including cardio-death, that the 6 months of ADT may bring.
That's just my feelings - but I think that consideration has to be made. My treatment decisions were based on my health at the time of diagnosis.
I think age should temper judgment on how aggressive treatment for PCA should be. Curing PCA but killing the patient with the cure really doesn't seem a realistic goal.
Nguyen makes the statement "The quality-of-life analysis showed a significant difference (P <.001) in 6 scales and 13 items, favoring the shorter course of ADT." I believe that QOL should also be a strong consideration for treatment decisions, particularly with older gentlemen.
FWIW - Nguyen made an issue about the high rate of dropouts in the 36-month group in the Nabid study - if I remember the Nabid study - the "dropouts" were men who stopped ADT after it became obvious that 36 months provided no advantage. There is nothing discussed about the mortality or reoccurrence rates of the "dropouts". Nguyen's commentary is interesting, but I saw no compelling data presented by him that makes me think the Nabid study was inadequate or the results flawed.
Just my thoughts - and not intended to encourage or discourage anyone from taking their own treatment into their own hands and making decisions they can live with.
Thanks.. I've unfortunately experienced all of the side effects I've mentioned above. I'm hoping stent #4 is the last of them. Experiencing them makes one acutely aware of what the doctors didn't tell us when we started ADT. ADT is a very valuable tool in the fight against PCa, but being knowledgeable about the deal you make with the devil always seems a wise thing to do. Certainly, your younger age and generally better health should be a big factor in your treatment decisions.
Good luck with your treatments, I hope it all works as you hope for.
We are very similar. You can read my bio for specifics. you are a little more than 2 years my senior. I'm have some fatigue and hot flashes but that's it.
We have a similar timeline to getting a ADT vacation; my last Eligard shot is in July 2021 and I think I end my zytiga in October 2021.
Hi XPO1, Thanks for responding. I am only on Degarelix. I was on Lupron for about 1 year before that, then Degarelix for about 1 month at the beginning of my treatment (to avoid the Testosterone flare). I switched to Degarelix last month figuring, "What the heck, it might have different side effects from Lupron." I know that the main problem is that testosterone has been driven to near zero, which occurs with both medicines; but with all of my crying, I figured I'd try going back to Degarelix just to see if it got any better. Cheers
Ok....I assume your PSA is undetectable even though you don't note it in your post.Maybe you need to change SSRIs...otherwise I'm not familiar with the crying side effect from the ADT.
Good Luck to you and hopefully we'll both be done with ADT this time next year.
Hi Richard, I don’t know if any of this will help but here goes,
I don’t nap or rest during the day even though I’m tired (all the bloody time!), so that I can sleep at night.
Sleeping at night moderates the depression somewhat; not sleeping at night brings out the narky, snappy (mostly at others), nasty inner orange blob (some people are lucky to have an inner child, I’ve an inner fully blown aged adult Donald!).
I watch comedy on TV (recorded) for an hour before bed, the more that I laugh before bed, the quicker I fall asleep. I assume a funny book, would work just as well, but Donald’s a bit lazy!
I cry easily too, so I do NOT watch tearjerker movies. I cry when I want to, I cry when I don’t. Other people especially men find this very uncomfortable, that makes me laugh while I’m crying. I can clear a room in seconds!!
I sleep well after crying, that’s useful for me. Given that I didn’t cry much during my first 40 years of life, which was very unhealthy and unwise given some extreme life circumstances that I experienced, I’m making up for it now.
It is human to cry, not many other animals can. In therapy I learned to give myself permission to cry, even at so-called inappropriate times!
Crying helps to heal me. ADT causes a reduction not only of testosterone, but of our ability to be fully in control of our emotions at all times. That’s uncomfortable but not dangerous. It saddens me that other people emotionally react negatively to a grown man crying .......
I was fortunate enough to experience psychodynamic psychotherapy 3 times a week for 5 years, some 20 years ago, long before PCa; if you can afford to, increasing the number / frequency of your therapy sessions could help you better contain your emotions on a daily basis.
With PCa I’ve had to give myself new permissions to cope with PCa and treatment side effects, I recommend that to you.
Permissions to do what etc. is personal to each one of us, though a common one is to use whatever helps us get through
one day at a time.
I learned that one over 40 years ago.
You mention 9 months left on ADT, it’ll be much easier one day at a time; in fact you won’t be able to do 9 months in one go!
Everything that I’ve experienced since starting ADT in May ‘19 is actually normal, I just didn’t know that for a while. There is nothing wrong with me, it’s just that I can’t live my life the way I used to before ADT and cancer.
The grief that I was / am experiencing is normal, though difficult at times, acceptance is the last stage of grief, they say; I hope to spend more time there!
You mention carbs, they’re mine! I can eat them for you and if anyone has other advice, I’ll listen (probably while devouring a bowl of lovely pasta). Sorry.
One last piece of advice, don’t move to Ireland, ADT duration here for high risk PCa is 3 long years!
You know Hugh, the more I think about it, the more I think your advice of "1 day at a time" is good. Have heard this "saying" for years, but didn't really process it inside my head. I can't exercise every day for 9 months. But I can exercise TODAY. I can't do the 16/8 diet (mentioned by XP01) and do low carb every day for 9 months, but I can do it TODAY. Nice job. Thanks.
‘40 minutes of aerobic exercise 6 days a week’ is great. But you would be better off trading in half of that for resistance training (calisthenics or weight lifting).
The muscle wasting caused by the ADT is to blame for the fatigue. Weight lifting minimizes that muscle loss and thus the fatigue. It can alleviate the other side effects as well.
Too many guys get aerobic exercise only. Intervention on the muscle loss induced by low T is a must. It’s not talked about enough.
Hello London, Wonderful suggestion on the strength training; and in my city, gyms reopened YESTERDAY. I can do this. I had seen 1 mention of using strength training to combat ADT fatigue, in the link below, but I didn't really consider it in enough detail. Thanks for your helpful advice.
Some men seem to weather ADT well; others (like you and me), not so much. Devastating for me. Poster child for bad, really bad side effects. The only thing that seemed to help was exercise and I'm no gym rat (more like a gym slug). I do not think the exercise did much for me physically (btw, hired a personal trainer and went to the gym 5-6 times/wk; high impact and treadmill and elipitical...but Covid took care of that routine) but it helped me emotionally and psychologically. Probably gave me a sense of control; like I was doing SOMETHING to mitigate the side effects. For whatever it's worth, I finally realized that much of what I was feeling was grief and loss. In a couple of short months, my body had changed, my life had changed, I lost my physical/sexual self. Alas, the docs were of little help. They'd nod and pat me on the hand and say that it would get better...yeah, right.
My last injection was in May 2019; 3 mo duration. I had hoped that, as my T returned, I'd return to my pre-treatment self. Nah, didn't happen. Docs said it would 9-12 mos before I'd be "normal" again. Nah, that didn't happen either. It was 16 mos before I began to feel better but, as I said, many of the side effects appear to be permanent (e.g., wt gain, genital shrinkage, screwed up blood work, and so on). Not whining, nor complaining. It is what it is. So, I feel your pain and wish you well.
I suggest "Androgen Deprivation Therapy: An Essential Guide for Prostate Cancer Patients and Their Loved Ones." Easy to read and clear description of what's happening to us and suggestions for coping with the side effects.
Hey Ed, Thanks for the detailed, personal account of your situation. It will help us in this community to establish realistic expectations. Sorry you're going through this trouble. I will buy the book you suggested today, "Androgen Deprivation Therapy: An Essential Guide for Prostate Cancer Patients and Their Loved Ones." I'm also going to do some strength training as recommended by London441. Thank you!
All of the treatments are hard on us in multiple ways. Especially the physical changes and most particularly the erectile function of course. But for many of us that was already happening before Pca, whether we want to admit it or not.
I have come to believe giving and receiving support, the aforementioned exercise, eating less and more nutrient dense food, keeping the mind active etc won’t change the fact that I’m breaking down like an old car, but it helps greatly.
What helps just as much is a deeper acceptance of my situation. Maybe someday humans will feel organically poised to live with a high quality of life to 100 or more, but at this point it seems pretty unrealistic.
Some of my younger friends talk about aging like it’s something that’s on the fast track of being solved, and they’re the vanguard of it. God bless them, such is the beauty of youth as we know.
I don’t look as good, don’t feel as good, can’t have the quality or quantity of sex I used to, can’t work as hard or as well. I’m slower afoot and in reaction time. My eyesight, my hearing, my memory blah blah blah- we are all going through the same s***t, and the only thing I know for sure is that no one wants to witness me being an asshole about it.
Doing what I can to extend my good years is hard work, even if worth it. Making the best of what remains is what I really care about.
My sexual function will never be the same, but that matters a lot more to me than it does to my loving wife. She is older too, and still likes sex, but intercourse just doesn’t carry the same import anymore. She just wants affection and for us to be sexual (occasionally!) in whatever ways are available. This is true for a lot of us.
There is so much help available, we don’t have to do this alone.
ADT rendered me depressed to the point of suicidality. I hated being alive, every day of my existence. Antidepressants worked for me, but only because I got a DNA test that showed which specific ones would work, given my specific genetic makeup. I highly recommend getting this test.
Hello Horse, thanks for your response. I'm sorry this is hitting you hard. I feel for you. I'll look into this genomic testing, it can only help! Thanks,
Can I ask why you switched back to Degarelix? I am on it now (4 months) and was thinking of a change (Eligard) to avoid monthly shots and accompanying pain. As to hot flashes...use a portable fan during day..and take black cohosh herb in capsule form (as was recommended in one of the seminars in Malecare Conf) early evenings for night sweats/flashes. Also doing veggy diet, juicing and upping workouts in the new year to help with weight gain (10 lbs through Nov/Dec holidays).
Thanks for question. I will be following discussion.
JP: Sorry, I don't know what it's called, but I'm sure any psychiatrist would. For each type of drugs for depression, anxiety, etc., it produces lists of drugs that are green (good), yellow (fair) and red (worthless).
I'm on Viibryd, which is 1 of 3 out of 25-30 possible antidepressants that is "green" for me.
Hi JP, After about 13 months on Lupron, with all the depression, I asked the docs if I could try going back to Degarelix, in hopes that something would change. One doc was skeptical saying that both drugs achieve the same result, low T, and THAT'S the main problem in my depression. The other doc said he'd be willing to try it because "anything can happen and sometimes drugs work differently on different people." Both docs agreed there could be no harm in trying Degarelix. I read a lot and there were no articles which stated explicitly that Degarelix is better than Lupron in terms of depression. I think Tall Allen cited an article stating that Degarelix is superior for folks who already have some cardiovascular problems. Luckily, that's not me so far.
I do feel better, back on Degarelix; but I don't know if the change is real or just psychological. So we're sticking with Degarelix another month or two to see if the change is real.
I was in a similar situation a short time ago. Gleason 8 and 9, tumor had grown into the seminal vesicle. Chose IMRT rather than surgery. Was told by everyone I consulted that despite a previous heart problem (heart attack, bypass and an ejection fraction of 40%) that 2 years of ADT was the standard. since I was only 66 years old. I had all the same side effects, 12-15 hot flashes a day, lethargy and depression but I stuck it out, with my last 6 month shot of Lupron this past June. They did not diminish "with time". All side effects still with me. I understand it takes a while for the drug to leave your system and I anxiously wait for a return to "Normal".
My point is that a recent echo has shown that my ejection fraction has dropped to 30-35%, verified by a second echo a month later. Perhaps coincidental, but I wish I had stopped the Lupron at 18 months.
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