ADT injection: Benefits worth the toll it will take on my body?

Posted by imnru @imnru, Jan 13 5:13pm

I’m 62 and will start Proton Therapy next week. My psa is 8, with a 3+4 Gleason 7. my doctor is suggestion ADT for 6months. I’m concern with the muscle loss and other adverse affects. Is the 

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Profile picture for pesquallie @pesquallie

@jeffmarc

I agree with your comments and think they are accurate but how do you marry these guidelines with several new studies, including Duke Health's AI study, that indicate that normal testosterone levels are best for aggressive cancer. When I raised this issue with my urologist, he basically said that there is not yet enough data to change the ADT treatments that have been used successfully for 20 years. My horrible side effects with Lupron which forced me to stop ADT treatment make me eager to find further treatments without ADT if needed in the future.

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@pesquallie Also remember that early studies (AI or otherwise) are just signposts for promising paths to explore. New treatment modalities need to survive several phases of major trials to become standard of care, and frankly, the vast majority don't make it: they can't be reproduced, or the cause is demonstrated to be something else, or the positive effects don't hold up over time, or negative effects emerge.

That said, we've seen some recent research blossom into well-supported changes in how we're cared for. Many oncologists are already treating oligometastatic cancer with curative intent, for example, and that may soon become universal.

But a single study doesn't change anything, as study authors would be the first to tell you. And be especially careful of confirmation bias, cherry-picking individual studies to support what you already want to believe.

From a personal PoV, I have to say that the effect of over 4 years of ADT and Apalutamide on my stage-4 oligometastatic cancer has been little short of miraculous: I feel like I've had a death sentence commuted, and am planning for old age again instead of putting my affairs in order, like I was in 2021. YMMV.

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Profile picture for jeff Marchi @jeffmarc

@readandlearn
You were fortunate your blood pressure stabilized.

I never had high blood pressure before zytiga. Now, Even though I stopped taking it three years ago, I have to take three different blood pressure medicines twice a day. Losartan, Diltiazem and metoprolol. My BP is not high at all anymore, but my cardiologist doesn’t want me to cut back more than having reduced the losartan by half.

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@jeffmarc When my oncologist terminated my ADT, he immediately terminated the Losartan as well. As you can see, my BP spiked a few months after until everything settled down. I think I should have waited a couple months before stopping the Losartan:

http:/mailpen.com/misc/BP+P.pdf

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Well...

@jeffmarc has laid out the science as described in the NCCN guidelines.

If you choose to go with your doctor's recommendation then there are mitigating strategies to counter side effects if systemic therapy:

Exercise
Diet
Managing stress

You may experience the "customary" side effects:

Fatigue
Muscle and joint stiffness
Hot flashes
Loss of libido
Genitalia shrinkage.
Weight gain

There are others, depression, bone density, cardiovascular...

To what degree and which ones? That is unknown and in part may be a function of mitigating strategies and duration of systemic therapy.

I've done ADT twice.

In both cases I experienced those side effects, well, not loss of libido, to my wife's dismay...

In both cases, after 18 and 12 months , T recovered rapidly, side effects went away and life returned to "normal!"

Did the side effects impact my life? No, still went to the gym, went skiing in Colorado, rode my bike, went to concerts...

If you decide to go with your medical team's recommendation discuss using Orgovyx vice the traditional Lupron. Its side effect profile is "better" than Lupron's.

Kevin

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Profile picture for Read & learn & live! @readandlearn

You will hear horror stories about ADT here, but there are other stories, including mine. I was on Lupron & ADT (they are distinct & different) for 2.5 years after my PSA rose after surgery. My side effects were very mild: A mild hot flash about once a month (which I found amusing), & not having to shave every day.

When my oncologist offered to take me off of hormone therapy, I initially declined, because I saw no benefit. Then I thought maybe the cancer was in remission, so I took the doctor's offer. At the first suggestion from him that I should go back on hormone therapy, I will resume it.

Remember, success cases often don't come here to report. A lot of very unhappy people do come here, especially recently.

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@readandlearn
My husband had prostrate surgery in 2003 surgery, 2011 radiation for recurrence. 2004 it returned and he is on Lupron, started March 2024. The oncologist gave him 2 weeks of pills prior to the first injection and 2 weeks of pills after the injection. My husband is 86 has the dementia and fractured his back 3 times. I have not mentioned the recurrence to him I just tell him the shots are a preventive measure for cancer.
He appears not to have any side effects, he was hot for a week or so when he started but he has not mentioned any symptoms that concern me. I do think his memory has got worse though. His psa was 1.45 then 1.78 and recently 2.78.
He has an appointment with oncologist next week so we will see what he recommends for the future. The whole point of this message is basically to confirm what you said that not everyone has severe side effects. Have a good day.

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Profile picture for jeanadair123 @jeanadair123

@readandlearn
My husband had prostrate surgery in 2003 surgery, 2011 radiation for recurrence. 2004 it returned and he is on Lupron, started March 2024. The oncologist gave him 2 weeks of pills prior to the first injection and 2 weeks of pills after the injection. My husband is 86 has the dementia and fractured his back 3 times. I have not mentioned the recurrence to him I just tell him the shots are a preventive measure for cancer.
He appears not to have any side effects, he was hot for a week or so when he started but he has not mentioned any symptoms that concern me. I do think his memory has got worse though. His psa was 1.45 then 1.78 and recently 2.78.
He has an appointment with oncologist next week so we will see what he recommends for the future. The whole point of this message is basically to confirm what you said that not everyone has severe side effects. Have a good day.

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@jeanadair123 You're in a tough spot, having to decide for your husband.

I suspect many oncologists would recommend purely-palliative treatment for an 86 year old man with dementia and a history of multiple spinal fractures, but every case is different, and it's great that he's tolerating active treatment well so far.

Just remember in the end that it's your and your husband's wishes that matter at this stage. It's always ok to decline active treatment and focus on quality of life if (and ONLY if) that's what you both want.

Best wishes, and remember to make sure that someone's caring for the caregiver, too. You have a lot of weight on your shoulders, and need to be able to set it down sometimes. ❤️

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Profile picture for northoftheborder @northoftheborder

@jeanadair123 You're in a tough spot, having to decide for your husband.

I suspect many oncologists would recommend purely-palliative treatment for an 86 year old man with dementia and a history of multiple spinal fractures, but every case is different, and it's great that he's tolerating active treatment well so far.

Just remember in the end that it's your and your husband's wishes that matter at this stage. It's always ok to decline active treatment and focus on quality of life if (and ONLY if) that's what you both want.

Best wishes, and remember to make sure that someone's caring for the caregiver, too. You have a lot of weight on your shoulders, and need to be able to set it down sometimes. ❤️

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@northoftheborder
Thanks for your concern.
I find it is bearable most of the time as long as I agree. 😁 the other problem is he moves things and I spend more of my time looking for things, it’s just frustrating. My husband is amazing and never complains so I am lucky in that respect. Although now he wants to go out everyday, he gets dressed and puts his cap on waiting to go out.

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Profile picture for jeanadair123 @jeanadair123

@northoftheborder
Thanks for your concern.
I find it is bearable most of the time as long as I agree. 😁 the other problem is he moves things and I spend more of my time looking for things, it’s just frustrating. My husband is amazing and never complains so I am lucky in that respect. Although now he wants to go out everyday, he gets dressed and puts his cap on waiting to go out.

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@jeanadair123 I don't want to stick my nose in where it doesn't belong, but do you get a little time to yourself? Can a friend or family member come and sit with him for a couple of hours every week so that you can go out to have a coffee, or lunch with someone? Little things like that can help so much.

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Profile picture for northoftheborder @northoftheborder

@jeanadair123 I don't want to stick my nose in where it doesn't belong, but do you get a little time to yourself? Can a friend or family member come and sit with him for a couple of hours every week so that you can go out to have a coffee, or lunch with someone? Little things like that can help so much.

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@northoftheborder
No problem thanks for your response.
No family, I’m from the UK.
I do have friends I chat with but 2 are in Texas, two in the uk and one friends husband is in a wheelchair so it’s hard for her to get out. We do plan on taking them both out for lunch when it gets warmer and we can eat outside. Most of the time he is fine but I have started to see some more changes.
I go out with a friend once a month for coffee but it’s getting to the point where I would feel bad if something happened to him. I could call seniors taking care of seniors but he wouldn’t like it he wants to be with me. So I plod along. 😂

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I'm 67, dealing with Prostate cancer which has progressed from stage III initially to (textbook) Stage IV metastatic (Lumbar spine) now castration resistant. I started on Eligard (an Agonist), but had too many CV issues (near heart failure, near stroke). I changed to Firmagon (an Antagonist) and have no CV issues further than High Ventricular rate every so often (2-3 seconds at a time about once a month...).

My research and experiences shows that ADT, regardless of the agent, will increase your BP, Blood sugar, bone loss, etc, etc, etc...I chose to continue the belly injections of the Firmagon, because I would rather deal with the "injection-site pain" than run something through my digestive tract (Orgovyx)...My digestive system is working fine...I'd rather keep it that way.

Either way, this disease and it's pattern and subsequent treatment is always a "lesser of evils" or "Benefits vs. Risks. It's a crap shoot no matter how you slice it...The odds are ...for the most part...against you (us)...

My advice is to obviously monitor everything!! BP, BS bone density, weight, energy level, etc...daily! Keep positive, have a support group and keep copious notes!!!

Blessings to all in your endeavor!!

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It is because of your report that keeps us keenly aware of what we need to do.
Thank you!
And the best to you!

Ray

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