My husband was off ADT for ten months at the recommendation of his MO. When T hit a normal'ish level (around 476) PSA started rising pretty quickly (from a low of <0.01 to 0.07 when T hit 476. And as his T rose (back to 672. He restarted Firmagon (two injections to restart) and in 33 days his T has gone from 672 to 125 and PSA from 2.09 to 1.16. I had hoped for a faster drop.
When he first started Firmagon in 2018 his T went from 630.5 to 22.5 in 36 days. PSA went from 24 to 0.66.
BACKGROUND: He had RP in 2018 with PSA of 34 and very large prostate, EPE, positive margins, and PSA stayed very high after surgery (17). Started on ADT before any scans (except bone scans which were all negative .... and yes I know those are not foolproof). He's had several image studies/scans since and no mets have ever been found.
Had Axumin in February when PSA was just over 2 and there are a couple of spots of activity in his prostate bed on the right side where margins were positive and one iliac node. His doctors believe his prostate cancer is confined to his pelvic region and are recommending pelvic bed radiation. We've consulted with the proton beam guy (who told him he shouldn't have it in 2018 because it was assumed he was likely metastatic b/c of high post surg PSA, but now believes he is likely to benefit from it). He is planning to start proton beam radiation in the next couple of months after he gets an AUS in April. He just had a procedure for bladder neck scar tissue so we're waiting for him to heal before AUS.
I have a call in to the doc. I'm wondering if he should add something to drop his T faster?
I'm just wondering what others' experiences are and if there was a difference in rate of drop when restarting hormone deprivation.
Thank you
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SuppWife
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I don't think there is no set time for T to drop when starting ADT. In some men it drops much faster than others. In my case, it dropped from 4.48 to 0.17 in three months and then to 0.06 in the next nine months. The rate of drop may depend on what fraction of cancer cell is castrate resistant.
Thank you for your reply. I’m mostly puzzled by the slower drop in testosterone. I don’t think he’s reached castration resistance yet, just hasn’t hit castration level testosterone.
It takes as long as it takes, but usually 2 months. That's why they wait 2 months to begin SRT. He should stay on ADT for at least 2 years (no breaks).
Encourage him to exercise. Preferably resistance training. It helps with the fatigue, bone mass, loss of muscle mass, weight control and appears to slow the disease. The guys here that do that (including me) swear by it. Not always easy but critical.
Thank you. I will. Would you share what your workout schedule is like? It’s tough bc he’s never been a guy who “works out” but has always been active. Incontinence makes it hard too. Maybe I could get him doing some upper body strength training to get things started?
First I suggest he get a trainer. If it’s too expensive then hire him once or twice to set up a Workout schedule routine. I do about an hour twenty three times a week. Three sets minimum of everything on all major muscle groups (including legs). Lower weights but at least 3 sets of 15 reps. Start out easy with very low weights. He’ll be sore. Check with his Dr first. I worked really hard. Fear is a good motivator. I was actually able to somewhat increase muscle and reduce fat. With that regimen other than some stomach issues, And lack of sexual interest, I really had no other side effects.
Personal experience. Last Lupron shot 7/3/2019. On 1/23/2020 T=515. 2/5/2020 Lupron shot and on 3/2 T=<3. I would guess it may vary for any one individual, but it dropped like a rock in my case.
Thanks for your reply. That was our experience with his initial/first go round with Firmagon. From 630.5 to 22.5 in a month. I'm so puzzled and disappointed. I hate to wait another 30 days to see what it is doing. I asked the doctor yesterday if we should add something, but he said no. It's dropping and we'll see in a month.
I am writing this while chewing fresh, organic ginger root dipped slightly with Manuka Honey
Along with statndard medical treatment, herbs and spices such as Ginger, Turmeric, Garlic ,
Resvestrol, Pomegranda seed extract etc can COMPLEMENT and probably enhance effect of standard treatment. Do your own research and do not write off complementary herbs and spices without reading reliable research about the.
For me this strategy is working very well. (PSA down to 0.3 from 830 in 9 months)
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