Reduce abi?: I am Metastatic Hormone... - Advanced Prostate...

Advanced Prostate Cancer

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Reduce abi?

jackwfrench profile image
26 Replies

I am Metastatic Hormone Sensitive. I have been nadir for 17 months on Lupron, abi and pred. Thinking I could reduce the 1000mg to maybe 500 per day to help my low RBC. I'm 180 lbs. Does anyone have observations?

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jackwfrench profile image
jackwfrench
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26 Replies
GoBucks profile image
GoBucks

I think your Doc's observation will be more important than mine. I was a 750mg Abi user because at 1000mg my liver #'s went haywire. So I'll always believe we could be taking a lesser dose. I'm now off all meds for 2.5+ years. Not bad for a metastatic G9. After 4.5 years of ADT I needed some kind of break. I await results of a national clinical trial for good responders who stop all meds. Anecdotally there are quite a few guys here who are on "vacation".

Tall_Allen profile image
Tall_Allen

Why would reducing your abi dose, making it less effective, increase your RBC?

jackwfrench profile image
jackwfrench in reply toTall_Allen

from Zytiga.com - all my blood tests are anemic - like Gobucks, seems like 1000 is too much, maybe not for a 300 pounder -

The most common side effects of ZYTIGA® include:

Feeling very tired

Joint pain

High blood pressure

Nausea

Swelling in your legs or feet

Low blood potassium levels

Hot flushes

Diarrhea

Vomiting

Infected nose, sinuses, or throat (cold)

Cough

Headache

Low red blood cells (anemia) ***

High blood cholesterol and triglycerides

High blood sugar levels

Certain other abnormal blood tests

Tall_Allen profile image
Tall_Allen in reply tojackwfrench

Low RBC is because of your testosterone level, which is because of your ADT, not because of your abi.

Low RBC is not listed as an adverse effect of Zytiga:

janssenlabels.com/package-i...

jackwfrench profile image
jackwfrench

Well as shown above from the Zytiga web site they think so. I will read this thanks.

Also my MO says my TT would come up some with cutting back on abi.

6357axbz profile image
6357axbz in reply tojackwfrench

By TT do you mean testosterone?

dhccpa profile image
dhccpa in reply tojackwfrench

Lupron alone reduced my T to undetectable, under 10. I know there is still a tiny amount being generated, but I'm skeptical your MO is correct. But keep us posted.

jackwfrench profile image
jackwfrench

yes

6357axbz profile image
6357axbz in reply tojackwfrench

If you reduce Abi and your T comes up how is that a good thing? Whole purpose of ADT is to lower your T.

jackwfrench profile image
jackwfrench in reply to6357axbz

My MO says it will only come up a little. I want to feel better and when I hear of others using a lesser dose, I want to explore that. However, I can’t find much study on how to consider lesser doses- each man makes his own choices with his MO, sometimes its just because side effects are becoming problematic like GoBucks above with his liver readings.

6357axbz profile image
6357axbz in reply tojackwfrench

T coming up a little probably won’t make you feel any better

Professorgary profile image
Professorgary in reply tojackwfrench

Going from 1000 to 500 mg oh Abi doesn’t guarantee an increase in T. You need to have your T level tested at a Lab with ultra sensitive testing. I, as some others, take 250mg with a low fat breakfast. My T level results come back as undetectable. My T level was 13 on lupron only.

jackwfrench profile image
jackwfrench in reply toProfessorgary

wow okay - How about PSA?

Professorgary profile image
Professorgary in reply tojackwfrench

Abiraterone appears to be failing. Psa bottomed out at 1 early last year and now it 7. Next step is switching from prednisone to Dexamethasone.

Vangogh1961 profile image
Vangogh1961

The reason we take abiraterone is to knock out the remaining testosterone. If you have some testosterone it will feed anything that's lurking.

MateoBeach profile image
MateoBeach

A practical strategy: measure your testosterone level now. Then reduce your abiraterone dose (as low as 250 once a day with a moderate fat breakfast such as whole fat yogurt has been shown to provide the same blood levels and effectiveness for many men). Then retest your testosterone level again in a few weeks to confirm efficacy.

petabyte profile image
petabyte in reply toMateoBeach

I don't understand how this will make any difference. Low dose Abiraterone (250 mg with a low fat snack) provides similar serum levels over a similar period as you say, so side effects should be the same.

Maybe I miss something?

MateoBeach profile image
MateoBeach in reply topetabyte

No you missed nothing. You are correct. I was just countering the fear around reducing dosage.

dhccpa profile image
dhccpa

Lupron alone causes RBC, hemoglobin, and hematocrit deficits. I've had them since starting Lupron 6 years ago. I've never had abi, Xtandi, etc.

mababa profile image
mababa

I’ve been on Orgovyx for 12 months and abiraterone for only 4 months. I hit nadir the same month I started abi and shortly after completing RT, so the abi (in my opinion) did not a contribute to my PSA bottoming out. My RO/MO are following the Stampede Trials for N1M0 patients. However, because I had significant adverse CV SEs when I started Orgovyx, I was hesitant to start the full dose of abiraterone. I’ve read several accounts where the SEs were significant but became manigible after the MO cut the dosing in half, to 500 mg. Like you, my weight is on the lower bound—165lbs. The dosage mentioned in the trials doesn’t appear to take body weight into consideration. Anyway, I started myself on 500 mg and 2.5 mg of prednisone to see how my body responded. So far, I’m tolerating the drug well, in my opinion, although I’m seeing more red flags in my blood work each month. I believe my brain fog has gotten slightly worse, although that’s a very difficult SE to measure. I’m 72. I’m still at a PSA nadir. I’m meeting with a new MO next week and will discuss the regimen then. I’m anticipating starting the 1000 mg Abi/5 mg pred after my consultation if he can give me a good rationale for it and can wave off the red flags in my blood work. Presently, the ADT/ARPI SEs are not significantly inhibiting my QOL. Fatigue and hot flashes are the most recurrent SEs. Best wishes for positive outcomes with your treatments.

BigTom123 profile image
BigTom123

Nubeqa? Would allow you to get off prednisone and Zytiga.

AZJumpinJack profile image
AZJumpinJack

I have been Aberaterone Acetate (Zytiga) for 5 years, first 2 years 1000mg, cut to 500mg at 2 years. No ill effects in the last 3 years. PSA still undetectable at my last blood test.Stay strong, stay positive and take it one day at a time and whatever you do KEEP ON, KEEPIN' ON!! YOU GOT THIS WARRIOR!!

#FUCKCANCER

jackwfrench profile image
jackwfrench

Thanks so much, this is the type of input I am looking for. Are you also on ADT, and what was your peak PSA pre treatment, mine was 2.1?

Professorgary profile image
Professorgary in reply tojackwfrench

I believe I got you beat.lol

A
GardenReno profile image
GardenReno

I’ve just started abiraterone as psa rising after 3.5years on zoladex. My plan is to pulse the abiraterone ie get psa down to a very low level then stop and restart when psa gets to say 2.0. The idea is to slow down resistance happening.

jackwfrench profile image
jackwfrench

“Men on abi do better” for sure- one MO says people that come down or off dont do as well in the long run, the other says “we have to be extra careful in cutting it back.” I guess I’ll just keep reading.

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