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Has anyone gone off hormone therapy (ADT) after radiation?
My husband has completed 5 weeks of radiation and 4 months of hormone therapy, 3.5 months ADT. His PSA is less than .2 The doctor seems pleased with the PSA and is hoping that it will soon be undetectable. If he gets to that point, can he take a break from hormone therapy and ADT. He gets his next hormone shot in October. I am hoping he will get Orgovyx , instead of the Elegard. I hate that the hormone therapy has impacted his muscle and bone density. He looks smaller to me. He is trying to do weights and he is signed up for a weight room next month, when we return home from our summer holiday. I would appreciate any input
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So, he is on an ARI (Androgen Receptor Inhibitor) which acts differently than his ADT by blocking the prostate cancer cell from binding with the trace amounts of testosterone left in his system and shuts down the T that the adrenal glands produce.
So, at this point his treatment is pretty much "normal" for his diagnosis and clinical data.
It's an oxymoron but he will feel better if he maintains a robust exercise program, doesn't have to be an olympic athlete level training.
The side effects suck, there's no getting around it, no T is exactly that.
Your medical team may have discussed chemotherapy with you. Data emerging from clinical trials indicates it's better used in high vs low volume PCa or when doublet therapy is not working. Your husband's case is neither.
I can only offer this, as I said, we all experience the side effects of our treatment. Which ones and to what degree, well that varies and is s function of many variables, age, fitness, health...
I talked about mitigating strategies that he controls, I would be remiss if I didn't say "attitude."
While on treatment I've gone skiing with friends, took a two week vacation and did the Ring Road in Iceland with my wife, did the Bataan Memorial March in White Sands, NM with my sister, rode in the Garmin Unbound with my daughter, heck, went to a Willie Nelson Concert with my wife,
All things in moderation but I think that the four things I mentioned go a long way in living life with this.
Oh yeah, I take naps!
Kevin
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7 ReactionsSorry, but what you are describing does not sound like it was ‘caught early’. It’s in multiple lymph nodes - that is much later than you would like.
I think he will be on ADT for quite some time.
Phil
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1 ReactionIn Sept 2024, the urologist looked at the biopsy and said we caught it early. But it took 6 months to get in to see an oncologist. By that time, the MRI and the PSMA showed the lymph nodes. My feeling is that it may have been early in September 2024, but by May 2025, it had spread. That makes me very angry. There was no watching it, in the meantime, to see if the PSA was going up. So, I am angry with myself but I , also, feel that the urologist was negligent and here we are.
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2 ReactionsI cannot believe they made you wait six months to get treatment. This is the type of thing where you want to go to a center of excellence when you have a problem and not wait for A urologist to get things going in 6 months. Almost sounds like malpractice.
I know other people who had the same sort of problem and it’s so frustrating. I know one doctors who use urologist Told him his problem wasn’t really serious until he become Gleason nine. He is not happy either.
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4 ReactionsI have wondered if I should report it to the Physicians and Surgeons. One of the problems is that when we finally got in to see the oncologist, we had had a blood test about 3 weeks before and the PSA was rising quite quickly. So, I found out where there was a private company doing PSMA's We paid for his PSMA and got the results that same day. I saw that it has metastisised and I took the information to the urologist's office the next morning. Also, I took it to the Cancer Centre and they forwarded it to the oncologist we were supposed to see. Then, they were prepared to give him a hormone shot on the same day of the appointment. I am pretty certain that if we hadn't gotten the PSMA, there would have been the scheduled appointment with the oncologist and then we would have had to wait for the hormone therapy to start. Canadian Medicare. I feel we don't need to be in this situation. I am angry, frustrated and very, very sad.
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3 ReactionsThank you for that, Doug. I told my husband. It helps when someone else has been there and understands.
Glenda
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2 ReactionsIn the US we always hear of the long wait times for certain treatments in Canada - especially ‘elective’ ones. Perhaps your urologist’s characterization of ‘catching it early’ put your husband months behind in the queue, not giving proper emphasis to his condition.
Other Canadian forum members have had better experiences than yours, but their cancers were more advanced on discovery. Something tells me that either your urologist completely missed the target on biopsy or the pathologist who read the slides was negligent.
Completely understand your anger and frustration…
Phil
Thank you, Phil. I really never thought we would be in this situation. We followed his PSA faithfully. But having to wait 6 months to see an oncologist was the nail in the "coffin", I am afraid. We had spoken to a urologist in Ontario when we thought the cancer was still limited to the prostate. He specializes in Nanoknife. However, by the time we got an MRI and the PSMA, it was too late for that procedure. He said, at the time, he was shocked that we would be referred to an oncologist 6 months after cancer diagnosis.
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2 ReactionsIt took about 18 months for my joint pain to subside after quitting ADT. My new normal is much better than when I was on ADT or the 18 months afterwards. You can do this.
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5 ReactionsAfter three years on ADT, I have been off for eleven months. There has been no improvement in the side effects (which are many and awful) My testosterone is now up to 100 (from < 4) and I am hopeful that the side effects will decrease as the testosterone improves. I am 74 years old, walk 3-5 miles per day and do intense yoga and weights three days a week. In addition to calcium with D3, I take Alendronate for my bones. Luckily, my PSA has remained “undetectable”.
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