I was on Eligard and Zytiga plus prednisone for about 4 years with tolerable side effects. Mostly medium fatigue. Got my PSA down to undetectable and my Mets invisible in scans after 4 years.
I took a two-year break. Wonderful to be clear of the side effects and infusion. Testosterone and PSA gradually came back.
Started on new meds, Orgovix and Erleada (without prednisone) last month (April 2024). These are extremely powerful drugs. My PSA and testosterone dropped precipitously after only one month. But the side effects are brutal. Real serious fatigue. Very painful Body cramps in legs, intestinal pain, diarrhea, light headedness, loss of memory, fall asleep at the drop of a hat, itching all over my back, complete loss of appetite, confusion, forgetfulness, etc. My quality of life has gone into dumpster.
I am now 81 so some of these side effects could be age related, but if so, why did they suddenly start when I started with the Erleada and Orgovix?
I am wondering if I should reduce dosage of the powerful new drugs, or return to the old weaker drugs which worked for me, although over a long period of time.
Any opinions? Recommendations?
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I have the same question for her.My appointment is Friday. I think it was because no injection is required and because they are more powerful. Definitely more powerful. Reduced testosterone and PSA in 2 weeks by the same amount that took two years on the old drugs. The Erleada scared the crap out of my cancer right off the bat. But the side effects…intolerable for me.
That's why you should go back on the same meds that worked before. That's what I plan to do if/ when my PSA bounces up. I've been off meds almost 2 years now.
Seeking your minimum effective dosage is the best thing you can do now. The best you could have done was to NOT had taken these 2 years of vacation. Attention here, I am NOT saying that you should had continued full dosage of drugs, BUT, instead a very-very minuscule maintenance dosage. Cancer progression isn't linear. Is NON-linear. It's not like a steel bar that if you stress it within its elastic range it will come back to its original state after releasing the stress. It is like (visco-elastic) rubber. Tension it and some permanent deformation will be there for good
Thanks. I am happy to have 2 years of a normal life off the drugs. Maybe a minimal dosage would have kept me clear for longer. Too late too look back. My choices now are to try live with the brutal side effects of these very powerful drugs and be miserable, quit meds altogether and say good bye cruel world, or ask for a reduced dosage. The good news is that the new drugs knocked my cancer signals way down almost instantly.
The real good news is that both Orgovyx and Erleada are taken in tablet form and as such you can adjust dosages to only as much as needed, thing that you couldn't have done with injectable Eligard. And everybody knows, lazy docs included, that SE, are dosage proportional. More isn't better.
Weaker hormone therapy doesn't last as long before resistance kicks in. That is the trade-off. If Zytiga was more tolerable, why not ask your oncologist if you can go back to it? Or try Nubeqa or Xtandi?
I had Vertigo with 4 - 60mg. Pills of Erleada. Went to 3 pills and no more Vertigo. All the while I’ve been on 6 month Lupron injections. Currently 2 Erleada (120mg.) and Lupron continues. 3 1/2 years non- detectable.
It’s the Erleada for sure. Definitely would try to return to the Zytiga, which is easier to handle for almost everyone. Or go to just the Orgovyx, as TA suggested.
I am not sure what the side effects of Aberaterone were because I was on other drugs at the same time, but I do know that for me, the side effects were less than on Erleada plus Orgovix. Substantially less. The side effects of Erleada and Orgovix were, for me, totally intolerable. I was on Eligard and Aberaterone for many years with slow but good results and tolerable side effects, mostly fatigue, muscle loss, brain fog and body fat, but those were NOTHING compared to the HELL of Erleada. On the other hand, Erleada was so powerful that my PSA and testosterone dropped almost out of sign in less than a month. So it works if you can handle being nearly dead while it’s doing its job.
Aches and pains in head, chest, hips got really bad so had to take morphine. That added to the brain fog and tiredness. Generally I just felt I was becoming a zombie.
Not all clear now especially back pain, but head is much clearer and I feel much more human. Waiting to see if it has an effect on PSA which has been unmeasurable for 3 years, but it has never been a good guide in my case. It never got higher than 8, but immediately found that I have mets in head, spine, hips, ribs and pelvis. Had PSMA scans which shows they are still growing albeit slowly.
Yes.i stopped prednisone also. I did well for 2 years, then signals went up and scans showed the little buggers were back in action. So I was put on Erleada and Orgovix because they are the new thing. Damn near killed me. I actually wanted to die I was feeling so bad. I stopped Erleada with oncologist permission today.
My husband just stopped Elligard and Zytiga ( taking a vacation) just over a month ago.. He knows the risks but so far so good, his PSA is undetectable and he is feeling so much better, strong and less fatigue and brain fog mostly gone... It is garden season here and he works 5-7 hours a day out there.. our MO and RO say if he tests negative with PSA and T may come back, he won't have to go back on.. Instead, he can radiate any spots showing up on PSMA scan.. I hope you get the relief you are seeking.. Glad you had a good 2 years "holiday"
"... Started on new meds, Orgovix and Erleada... extremely powerful drugs... the side effects are brutal..."
I have been on Orgovyx for 6 months and the side effects are mild -- brain fog, muscle changing to fat, etc. I believe you are feeling the effects of Erleada. My urologist wanted me to add Erleada but I chose Abiraterone instead.
I talked to my oncologist. She said stop the Erleada. So she agrees with you about that. But she did not say go back on the Aberaterone and I did not ask. I will ask about that at your suggestion.
I had few problems with Aberaterone but I was on. 1/2 dose. Still it worked and side effects were not bad. 240 Erleada is nothing to fool around with. It knocked the hell out of my testosterone and psa in no time flat. It also reduced me to an almost bedridden weakling with diarrhea and muscle cramps and rashes itching everywhere. I wish they had put me on a less aggressive dose to start with or back on Zytiga at a 1/2 dose.
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