Edit to question...I failed to add that 3 months ago his MO prescribed Gabapentin 300mg for his hot flashes. He takes one pill at night.
Thank you, and thank you for the tremendous responses
Can anyone tell me if the SE from ADT HT plateau at some point??My husband is in year four of Lupron, Abi+Pred. Had HDT BT a little over 2 years ago. He works out and stays active. However, lately he says he's feeling weaker and he thinks the treatment will continue to build and make him weaker. I don't believe thats the case (except for the usual aging process) as long as he continues his routine of activity. He has a total gym he uses everyday for 30 mins to an hour. He works on our property upkeep and saddles and rides horses daily. He is 68.
Thank you for your time.
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I workout 6 days a week and my energy levels ebb and flow throughout the year. Some days I need a 15 minute nap and others I don't, I have exerienced this for quite some time now
Sounds like he is doing really well right now and has a long way to go to get weak. As for you're question I believe he is correct, but time/aging will have a similar effect. Together it is inevitable IMO.
Was thinking that too. But since I'm a woman, don't have cancer, and not on life altering drugs, I didn't want to say that without checking with the folks actually in the trenches. I really believe the Gabapentin has caused a lot of the recent weakness, but it has sure helped the hot flashes. Guess he'll have to choose. Thanks again.
Absolutely true. As I told Treedown, I'm slow to share my "opinion" with my husband since I have no idea how it feels to be in his shoes. But when I get input from you all, I can share from people who truly know. Thank you
In my experience ADT SE’s have decreased with time. I’ve been on ADT off and on for about 6 1/2 years with 4 vacations. ADT round #1’s SE’s were by far the worse. After each vacation when I restarted ADT the SE’s have been a bit less intense, still a PIA but manageable. I discussed this with my MO and he said that concurs with the anecdotal information he has gotten from his patients over the years.
I’m in my sixth year without testosterone and exercise daily, too. I’m also 68. Some days I feel very strong, some days weak. I would recommend, that he stays patient and waits, if strength is coming back. In addition I would have a closer look at the diet and do a full blood test including vitamins and micro nutrient. Maybe he is missing something he can include in his diet or supplement.
Such a reasonable assessment, thank you. We are starting to think its the Gabapentin he started a few months ago. Great for the hot flashes but more SE's to deal with. Going to talk to his MO.Thank you
Sounds like he's doing just fine. I'm in sixth year of ADT treatment and the medication definitely has a unique way of reaction to our bodies but it is keeping us alive. Tell him to keep on pushing the limits but as my Oncologist told me when I'm tired rest. Never give up Never surrender Leo
Been on it 10 years non-stop. Fatigue has gotten worse constantly over the years but I am now 79. Still have hot flashes but not as often as when I started on Lupron. Enjoying life.
No one can answer that question. Side effects vary wildly between individuals and the therapy they're on. For me, I adjusted to the Erleada + Lupron side effects somewhat. After two years of clear scans my oncologist advised me I could temporarily stop Lupron and since then I feel marginally better but the side effects haven't gone away.
Still, I'd much rather have the side effects than the cancer.
Agree 100% They've offered him vacation option but advised against it since all his numbers are golden. He didn't want to rock the boat either. Thank you
All your input is so very helpful and greatly appreciated. Truly helps. Seems to me that TA had mentioned in a post that the SE's do have a tendency to level out or lessen eventually. I think I worded my post wrong. He's actually wondering if the meds continue to cause deterioration over the years or if it levels off.
4 years so far, and the effects do seem to vary. I think a lot depends on sleep, and on the nights where sleep is good and uninterrupted by getting up to pee, my energy levels are better. So, no tea/coffee after 1900, and a walk with the dogs just before I go to bed, and I just keep working/walking the dogs and riding my motorcycles. I do nap once home from work, but I make sure that it doesn't last longer than 15-20 minutes. It's tough, and it's the fatigue from doing simple things that bothers me, such as needing a nap after changing oil/plugs etc on a motorcycle, that in the past would have needed no rest...however, I am reminded by my wife that I am 68 and some tiredness comes with age....I'm still waiting for the wisdom.
I have been on ADT (Lupron and Abiraterone) for almost 12 years, excluding 3 vacations during the first 5. It’s hard for me to give you an answer to your question. I don’t think the side effects have gotten any worse, including the loss of muscle mass, but that that’s to evaluate. I do know that my hot flashes decreased greatly both in frequency and also in intensity. For the past several yrs, I have at most, one hot flash in the evening. In addition, while I gained 15lbs. in 6 weeks following the start of ADT, which eventually increased to 20lbs and more, for reasons unknown to me, I have lost about 8 pounds recently as I seem to be less ravenous in the evenings. Only recently have I started to weigh less than I did when I put those initial 15lbs of weight in during the first 6 weeks.
After 7 years of Lupron, I was going crazy for 2 weeks before each quarterly shot. At some point I recalled my original urologist's offer to castrate me right at the beginning to avoid Lupron.
As my outlook was 5, 10 years at most, and I declined back then. At 7 years I was doing well although Xtandi had stopped working so I had the orchiectomy. That was a couple of years ago (the boys were totally atrophied and useless anyway) and have felt much better for it, even as the PC progressed. I'm 75, BTW
It's a big decision so lots of talk and research is needed but if he wants to get away from the SEs from Lupron that's a solution. It will not, however, effect SEs from the abi+pred so there's that to consider, too.
I guess I am confused and could use some assistance. I thought you would have SE in both cases - drugs or castration.
I thought the SE were from low testosterone in both cases not the medication or procedure. Am I not understanding? Are you saying your side effects were less with castration.
Thanks for helping me understand this since at almost 80 that could be an option rather then long term ADT usage.
Hi Mtgd. Yes, I am saying I have less hot flashes and my chemo brain has almost completely disappeared. Also I was having extreme PMS for two weeks before my quarterly shot and that is gone completely.
SEs like fatigue, muscle tone loss, etc. are still there but after Pluvicto I no longer feel sick and so just have to rest more often (nothing to do with being 75, right? LOL).
f.y.i. I also stopped Xtandi (it wasn't working anymore) around the same time so that probably is a factor as well.
Of all the men on here who were castrated I have not seen one post where they regretted their decision. Doctors don't like it for some reason (that has nothing to do with the cost of administering a Lupron shot, nor the 2.6% of the drug price kickback to their Specialty Pharmacy, ahem...)
Urologists may be more receptive since they often don't have the financial incentives even in large institutions. That's where I would probably start the conversation. And remember to talk about testicular prostheses. I didn't and don't have them and it still feels a little weird down there.
He's already lost one testicle to cancer in 1992. And has a long and colorful medical history. He's no on anymore surgeries. But thank you for putting that out there. I'd think it would be preferable to the shots, but I have no idea what its like to be in his shoes. Hoping you see 80+ Thank you again
Understand completely, the older you are the greater the chance you won't recover from general anesthesia.
That's why, when I had to have a TURP, I had them do this as well so I had a twofer!
Hopefully he will keep it in the back of his mind so he can consider acting on it should he have to go under for something else (it's not a big procedure, and I'll bet back in days we remember, doctors could do it in their office).
The anxiety of the never ending shots is considerable especially the week leading up. One less issue to deal with.
His doctors have never brought it up.
He's maxed out mentally on surgeries.
Shot in the side by a careless hunter 1974. Lost a kidney riding bulls 1976.
Had a vasectomy 1990. Had testicular cancer 1992 removed one testicle. Had 3 hernias repaired twice 2001 & 2002 mesh infection. Broken pelvis from a colt wreck in 2005, titanium plate and screws. Shoulder repair surgery 2007. Hip replacement 2011. Bowel obstruction that burst and had to be patched in 2012. And of course the HDR BT in 2021 🙈
Wow! So he's more familiar with eff'in doctors than I am. I don't blame him one bit. I hope he is still working with animals as that seems to be a passion of his. You've got to live every day and having something to do, that you love to do is a key to a better Quality of Life, the QOL everyone talks about.
Luckily I have photography and graphics, which keep me seated but also encourages me to get out there and shoot whatever I see. Here's my current favorite (shot at our zoo) that I think should stir his hunter instincts. Be well!
Wow, awesome shot! What a terrific hobby. Its an art for sure. You are 100% right, having a passion to chase is critical to QOL. And I believe it contributes to the effectiveness of treatment (of course nothing scientific about that statement) .
We have a few horses. We team rope so we have a few steers and ride daily and try to rope a few. Jim is finishing the training of a horse we raised from a baby. He's 8 years old now. Jim will never quit riding until he physically can't get on a horse.
Like your husband, I’m in year 4 of ADT (Eligard and Erleada). Here’s some random thoughts from a fellow traveller. Your husband seems to be doing the recommended things to feel better. Perhaps doing too much? A fact no man wants to accept is we aren’t what we were when we were 20. I personally struggle with this everyday. Inside I don’t feel different, why can’t I do everything I used to do? That aside, a few other thoughts. I assume he is going for regular blood tests. ADT can cause anemia which can really affect energy levels. I’ve been on the fringe for the whole time I’ve been on the stuff. My MO says I’m lucky, most of his guys are MORE anemic. ADT also comes with another issue, depression. According to drugs.com depression is a side effect for up to 70% of guys taking Erleada. I know your husband isn’t on that, but I imagine they are all similar. This has been the worst SE for me and it can really affect your energy level. Another “gift” from ADT is sleep disturbance which can have a huge affect. Does he have any other medical issues? I recently added a new BP medicine after a hypertensive crisis. A couple of hours after taking it I felt like I had been hit by a train. Checked my BP and it was 100/63 with 53 pulse. Super if I was a conditioned athlete but quite a shock for a body use to running at 140’s over 70’s and pulse in the 60’s. My body is starting to adapt to the “new me” on this drug but it’s taking some time. I suspect the more meds we are on, the greater the chance of SE’s from interactions so that could be an issue too. As for myself personally, I have slowed down a bit but I’m 4 years older so some of that is expected. Overall I don’t think it’s related to the ADT as much as to pushing 73. Which I guess brings me back to my first point. It sucks to get old but, as men, we need to manage our expectations. Easier said than done! I wish you and your husband all the best moving forward.
Great info, thank you! I agree completely, but such a touchy subject at this point. I try to gently tell him none of us are as good as we were 5 years ago, cancer aside. His bloodwork is "pristine" as they say.
I think he doesn't sleep well at night, bathroom trips, and definitely battles cycles of depression. His blood pressure runs on the high side due to the meds, but his doctor has been working on that. We've actually started to think this recent issue is due to the Gabapentin. We will talk with his MO. He may have to choose between that and the hot flashes.
oops, correction on my post. Erleada causes ANEMIA in up to 70% not DEPRESSION however ADT in general can cause or exacerbate depression. This correction is mainly for the guys on Erleada.
I've found the SE from Orgovyx to be minimal compared to Lupron Depot. Yes, you have to be diligent on taking the oral pill everyday... but read the research papers and consult w/ your oncologist.
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