Longest duration you have been on onl... - Advanced Prostate...

Advanced Prostate Cancer

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Longest duration you have been on only abiraterone/prednisone before treatment failure or becoming castration resistant?

TuffNuttoCrack profile image
8 Replies

Just got presented with a vacation proposal but I am doing well after two years on Abiraterone/ prednisone. I have a large cell very rare extremely aggressive variant. Plan is to stop treatment, let PSA rise to 0.3 nano grams do a pet Scan to find all active cancer spots and blast them into oblivion. Then continue the cycle of vacations intermittent with treatment and diagnosing hot spots and radiation. I like the second part but apprehensive about the first. The horse is in the barn right now (my retroperitoneal cavity) and I don’t want to let him out.

Regarding time duration on abiraterone and prednisone please answer the questions below.

1. Please describe any weirdness in your cancer

2. Number of months on this cocktail

3. Your age if you don’t mind

4. Severe Complications that later came after years on Abby.

5. How the docs recognized your treatment failure

6. Mg of prednisone per day

7. Estimated shrinkage of tumors if you know

8. The drug(s) or radiation treatment you took after treatment failure, Xtandi e.g.

I’ve read some posts here that some guys may have been on abiraterone ten years

I’m not trying to blow up the servers. I just want to have an understanding of what could happen under the best circumstances taking abiraterone even though the different cancers we have may negate any duration value one might expect to get.

Thank you, God bless you all.

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TuffNuttoCrack
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8 Replies
vintage42 profile image
vintage42

So much in the bio, not all related to prostate cancer. Maybe you could clean up the bio, adding your diagnostic procedures and results, and the location of your mets, and removing what is not related to the cancer. It seems you have not had prostate radiation or removal because the cancer was metastatic when diagnosed, had chemo and a brief course of ADT for starters, and have been on Abiraterone/Prednisone for about two years.

I will be interested in answers to your question about time to castrate resistance, as I have been on Abiraterone/Prednisone for 7 months (but in doublet with Orgovyx ADT),

TuffNuttoCrack profile image
TuffNuttoCrack in reply tovintage42

I haven’t reached castrate resistance yet 24 months on Abby and 2.5 mg of Pred per day. I don’t have any immunity to speak of, likely wiped out with first and only round of docetaxel.

Thabatman profile image
Thabatman in reply toTuffNuttoCrack

What do you mean by wiped out immunity by one round of docetaxel? You had a bad reaction, and the therapy stopped?

My father has fast rising of PSA, and is on enzalutamide for cca 2 years now. He is waiting for bone scan to see if mets have spread, since Alkaline phosphatases are within the limits. CT doesn't show any spreading, but PSA is 140. They want to see bone mets, and I assume they will include docetaxel. That's why I am interested why You stopped this therapy.

TuffNuttoCrack profile image
TuffNuttoCrack in reply toThabatman

My oncologist stopped it for fear I would die if I received another dose, since I had no infection fighting capability left. I believe my adverse reaction really frightened them after nearly dying.

Thabatman profile image
Thabatman in reply toTuffNuttoCrack

Thank You for Your answer. I am sorry that You had such severe reaction. Hope everything goes well during further treatment. We shall see if my father will receive docetaxel as well, and what will be his response to this therapy.

garyjp9 profile image
garyjp9

I'm 73 yo, Gleason 5+4, surgery followed by Lupron, Abi/Pred, radiation. I was on Abi1000mg

plus 5mg prednisone for 2.5 yrs., was undetectable when I stopped. I know men who have been on it 6,7,8 years without a problem, but I know the longer you are on it, the more chance of becoming CR. Also, when I stopped it, despite weaning off the prednisone slowly, my adrenal glands never resumed producing cortisol, leaving me with adrenal insuffiency. That happens to very few men, but the longer you are on abi/pred, the greater the chances.

TuffNuttoCrack profile image
TuffNuttoCrack in reply togaryjp9

Thanks for all your insights Gary especially about insufficiency. There are so many complications when you “sign” up for a drug intended to destroy your body. I also stumbled in the archives about a guy who only got two years out of it and another “lucky” feller who got 9 years. That post was four years ago and the subject was unrelated to my question. I am going to look into the prednisone dose again as I’m at 2.5 mg a day and maintaining K+ levels.

The idiom “if it ain’t broke don’t fix it” may apply to my case, the cancers course unpredictable if we stop treatment.

garyjp9 profile image
garyjp9

Yes, I think that is a pretty good rule of thumb, although in my case I had no idea that I would develop adrenal insufficiency. If your labs are ok, I would stick with the 2.5. The lower the better on the prednisone dose. I was discouraged from using anything <5.

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