Hi--my partner (6 months post RP, GS 4+5=9, SVI, ECE, 9 N+, one met to pelvic bone) started ADT in June with a firmagon shot. He had hot flashes and fatigue, plus those two hard bumps, but tolerated it ok. One month later, his PSA had dropped from 1.17 to 0.4, and the MO started him on Lupron (3 months). On the Lupron, he has experienced more frequent and stronger hot flashes, more fatigue, lost a lot of muscle tone and has started to gain weight. More significantly, he experiences a lot of shortness of breath from just walking around. He is going back to the MO today to start Zytiga.
He wants to know: should he stay on Lupron or would it be ok/better to go back to firmagon? Is the shortness of breath normal for Lupron? Also, what can he expect for side effects from the Zytiga?
Thanks for your help!
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CatNinja
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Side effects such as those you describe, increase over time as the effects of no testosterone accumulate. It probably wasn't due to the change from Firmagon to Lupron - just more time had passed. But there is no reason why he can't switch back. It will be compounded by Zytiga, but he will also adapt somewhat to the new normal.
I’m on Lupron - Xtandi for 8 months now. Mucho hot flashes , chill spells .. gasping for breath if I walk even for short distances, breaking out in heavy sweats with very little effort , stiff leg muscles , EXTREMELY exhausted much of the time and a whole lot more. Gained 50 pounds and still on strict keto diet. 24 / 7.
Yes it’s a wagon load to experience and manage ...but ...started psa 1400 ( 1600 by time treatment started) 8 months ago .... current T undetectable ( on 20 scale ) and current PSA <0.1 undetectable as well. I’m inclined to stick with what is working so well , I wouldn’t make any changes and jinx things. It’s rough for sure but I got this and my wife is happy ... doesn’t get any better than that .... considering. Every month at undetectable is a gift from the Lupron - Xtandi fairy, 3 months in a row for me now. Your mileage may vary.
You probably got that exactly right .... that being the case, I’m in seriously deep kimchee for sure. My punishment is likely to be massive yayahahaha yayahahahaya dang .....
There is nothing fun about this at all , it gets really old too.
I asked the Onc doc what my diagnosis was .... he said “ boy ... your body is shot “ ..... what !!!!
I said I wanted a 2nd opinion ... my doc said ..” ok, and you smell funny too “
Your partner may want to have a complete blood panel done by your GP.. chances are good he's somewhat enemic due to the lupron. It isn't uncommon and can lead to shortness of breath due to oxygen deprivation. There are probably ways to address this.
I have been on Lupron for a bit over 2 yrs, and had 6 rounds of chemo (taxotere) ending about 1.5 yrs ago. I started having the shortness of breath during chemo, and it never went away. Likely not as severe as your partner reports, though. I also have the muscle stiffness (I call it "creakiness"), hot flashes, etc. I am slightly anemic, but was before any of the ADT treatments started. Like Kaliber, I reckon that being undetectable is worth the side effects.
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