Please share your experience with Abiraterone/Prednisone

@joecontheroad
Thanks for sharing your experience. I thought Lupron or Orgovyx are first generation ADT and Second Generation ADT drugs like Abiraterone/Prednisone can be added to the first. It looks like you started off with Abiraterone and then had to stop it due to side-effects and then started Lupron. I believe one should start off with Lupron .
Sorry to hear about side-effect (liver function). It appears to be that Abiraterone is affecting a big majority of patients negatively and only a small percent of patients escaped its serious side-effects.

@ambika
IMHO it should be discontinued from use because there are now new and less toxic options available !

It can cause not only serious cardiac damage but its effects on adrenal glands can stay even after discontinuation. : (((

When I read side effects are did further reading of research papers I decided to fight for new alternative and managed to claw out Nubeqa. My husband did however have BCR with gland involvement but still, that scenario is not covered with Nubeqa. Abi was offered and I (we) refused it.
Sometimes one has to fight to get the best care. 🤷‍♀️

I also want to give credit here to @jeffmarc for giving us ladies tips of how to "fight", and also to @ucla2025 and @sriddle1 who succeeded getting Nubeqa for their husbands and shared their success here on this forum. They gave me courage to demand it.

Sending all 3 of you hugsssss today - I am forever grateful 🙏🤗.

@ambika
Abiraterone is considered an ARPI not ADT. It would not make sense to use it before ADT.

Must admit I’ve never heard of that being done.

@surftohealth88 So important to advocate for yourself. When it was decided the best treatment for my husband would be ADT & ARPI based on all of my research I asked for Orgovyx and Nubequ and we got it. Our onco doc said to me “wow you’ve really done your homework! “ Great relationship from that day forward and now every three months he always gives me “homework” to help us understand treatment options. First it was the Stampede trial, next was Embark and Libertas. He seems to enjoy patients who have questions and opinions. We lucked out with him!

I was diagnosed with metastatic prostate cancer (Gleason 10) approximately 5 months ago. My psa value dropped significantly in a month. I'm an active 80 yearold who has experienced many side effects will taking Abiraterone and Prednizone. I have hot flashes , enlarged breast, loss of libido, fatigue, blurry vision and depression. My cancer team has stopped the Abiraterone for two weeks. We are hopeful that the side affects will be reduced. After a week, the side effects are still affecting my day-to-day life. I'm meeting with my Care Team this week to discuss options. Good luck to you and your husband.

@ucla2025
I am glad to hear that you managed get Orgovyx and Nubeqa fit your husband. We tried to appeal for Nubequa but insurance rejected it because my husband has firstly localized Gleason 9 and secondly he is castrate sensitive.
Nubequa is prescribed for castrate resistant patient and for those who has Metastasis.

@huskerbeans
I am so sorry to hear that you had such severe side-effects from Abiraterone. It seems like majority of patients have bad long cj with this drug.

I started Abi/Pregnisone in June of this year and started the Estradiol patch a day or two earlier, the same day I started radiation treatment. I had a rough first month (fatigue, pressure in my head etc), but I think it's impossible to disentangle my symptoms from the various treatments. I think most men on Abi/Pregnisone will also be on an ADT drug, so again, it's hard to know which treatment is causing the symptoms.
Exercise made a huge difference in combatting the symptoms.
In my 2 monthly tests so far, PSA is <0.006 and T is <3. Some other blood values are either slightly out of range or on the border of out of range, but since Labcorp has great data analysis tools, I realized I had similar out of range values before treatment, for some, but not all of the values.
For the last few months I have felt pretty close to my old self, although my biking stamina has decreased to some extent. Also I used to sleep through the night most nights. Now I get up once and occasionally twice and I realize I am not sleeping as deeply as I was before. But that is improving as well, and again is the fact that I get up more from the drugs or radiation?
Good luck with making a decision and I hope whatever you choose works well for you.

Thanks to @ambika and @jeffmarc for pointing out my error in my earlier posting - and apologies to all: I will ask the moderators to correct that error.
While the information regarding the aberaterone/prednisone was correct, the parenthetical information was incorrect and misleading. With the discontinuance of the aberaterone/prednisone, I was subsequently *increased from the previous 3-month leuprolide/Lupron to a 6-month shot for my convenience.*

I was diagnosed last summer - PSA 200, Gleason 8, seminal vesicle invasion. I was immediately put on Orgovyx, Abiraterone and prednisone, and received 6 weeks of daily (weekends excluded) EBRT treatments. During that time I experienced tiredness, fatigue and some depression. The latter was more likely due to "how did I get here?, and what will my future look like?".

I was given little education of the side effects and found my information through research and this beautiful forum. As months went by I lost my libido and could no longer get an erection. I became more emotional than usual (poor wife) and periodically had hot flashes. My testicles have reduced in size significantly and are very tender. I developed sleep insomnia where I would awake early morning and could not get back to sleep. To add insult to injury, my blood pressure increased substantially.

Not everyone has the reactions I experienced, but the side effects can be managed. I've been able to counter most of the side effects through consistent exercise and medications. Working with my ARNP my blood pressure is under control and my sleep has improved.

I have 9 more months of ADT and living a good quality of life. With good management, I believe your husband will do well.