Should I be afraid of abiaterone? - Advanced Prostate...

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Should I be afraid of abiaterone?

scooby0111 profile image
49 Replies

How does abiaterone and prednisone affect people taking it?

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scooby0111
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49 Replies
Tall_Allen profile image
Tall_Allen

Are you mHSPC or mCRPC? There's nothing in your profile. It's not much worse than Lupron alone for most people. Tables 1 - 4 show the most common ones for men who are mCRPC. They aren't much different from placebo for men already taking Lupron. They will check liver enzymes. The only other major things you have to watch out for are high BP, low potassium and edema, which are signs that you are not taking enough prednisone. But that is more a problem for men only taking 5 mg/day (mHSPC).

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Life5 profile image
Life5 in reply to Tall_Allen

Hi, wanted to ask how to determine if the edema is due to not taking enough prednisone or if it is due to any other reason?

My dad has been on zytiga and 5 mg of prednisone since August 2019. In August 2020 due to high blood sugar levels he started taking metformin. Around one month ago, we started noticing some swelling on the face- no swelling on the feet or elsewhere though. He also takes Blood pressure medicine and the BP and sugar levels are within control. The diabetes medicine also mentions facial swelling/edema as a side effect. How to determine if the swelling is due to lack of prednisone or due to the diabetes medicine? Also, is it possible that since he has started with the diabetes medicine the dose of prednisone which was fine for a year now needs to be increased? We had called our MO assistant regarding the swelling - he said it is a common side effect of the medicines and not to worry- we have our tests and appointment with the MO scheduled this week - so want to make sure not to miss out on any important points.

Tall_Allen profile image
Tall_Allen in reply to Life5

Are his blood tests showing low potassium?

SPEEDYX profile image
SPEEDYX

Taking it for almost 2 years only normal side effects...and after a few months if no major side effects you should be good be patient it may take a few months to kick in...very effective drug to fight the battle!!!

I've been on it for 2 1/2 years and hardly anything as far as side effects go. I have a little more fatigue but that's about it.

treedown profile image
treedown

On it for almost 1 year now. I was on just Lupron almost a month before starting it and did not notice a change in SEs or anything else when starting aber/pred. That said we are all different so no guarantees you will handle as well as others.

Magnus1964 profile image
Magnus1964

It affects everyone differently. I was on it for 3 1/2 years with no side effects.

scooby0111 profile image
scooby0111 in reply to Magnus1964

Thank you

I am concerned it will turn me into a mess from the prednisone. I work out regularly and until last year played. Lot of soccer. I worry that I will be a lump of jello and just a shell of myself

in reply to scooby0111

The dose of Prednisone is very low, below the dose where the side effects occur. Abiraterone shuts down your corticosteroid production so it's basically a replacement dose for what you lose. You shouldn't have any side effects from the Prednisone.

scooby0111 profile image
scooby0111 in reply to

That is encouraging

Magnus1964 profile image
Magnus1964 in reply to scooby0111

The small dose of pregnisone only replaces what abiratorone takes out of you.

in reply to scooby0111

Not being flippant..... however, if the choice is a lump of jello or early death, you choice is what? The point is that we have a bastard of a disease and when one comes to term with this, decision are easier..... please don’t let side effects be a determinate.

BTW, I took 30 mg of Prednisone every day for 180 days during a clinical trial. Yes, there was weight gain, however, that was 16 years ago. My choice was easy.

Good luck. Listen your medical oncologist and follow his instructions,

GD

depotdoug profile image
depotdoug in reply to

Yep 16 years says a lot i wish and should not wish but hope i could have done treatment different 15 yrs ago. But 1st choice was IMRT 42 rad zaps.

in reply to Magnus1964

What do you take Now?

scooby0111 profile image
scooby0111 in reply to

Lupron shots and finishing radiation

Magnus1964 profile image
Magnus1964 in reply to

I am on xtandi. Been on xtandi for 4 1/2 years.

Shooter1 profile image
Shooter1 in reply to Magnus1964

Hoping it will help me that long, now at 3 years.

Think of it this way, what should you be more afraid of, death or Abiaterone? Answer that question and the rest is easy.

GoBucks profile image
GoBucks

No. Be glad we have it. Almost 3 years for me. I am working out 3-4 days a week. Helps with everything. Eat ice cream too.

scooby0111 profile image
scooby0111 in reply to GoBucks

That is very encouraging

I guess I am just scared that I will become a poor excuse for a human. Silly perhaps but fear of the unknown. Every thing I have read looks awful

in reply to scooby0111

Perfectly normal. We all go through these kinds of things so we understand completely. We're here to support and encourage.

Schwah profile image
Schwah in reply to scooby0111

I have the exact same fear. Before I started Lupron and Zytega I went into Trainer‘s office, took off my shirt and said I was going to have zero testosterone and I wanted him to make it so I didn’t look worse than this a year later. He said if I look like that after year working out his gym he would close the doors LOL. I lifted weights (and I still do) Three days a week for about an hour and 10 minutes each time. It’s a very tough work out and each time I swear it will be my last. But as you say, fear is a great motivator. I only missed two sessions all last year. If you can’t afford a personal trainer, hire one for just one or two sessions to show you what to do. I actually lost body fat and gain muscle after 21 months on Zytega, prednisone and Lupron. I’ve been off everything for about a year now and I definitely notice the difference. But while it was going on I really didn’t feel too badly. Bottom line, is resistance training for your health, mental well-being and maintaining your strength.

Schwah

depotdoug profile image
depotdoug in reply to Schwah

Kudos on enduring and not sayin no to work outs. Fear is a great motivator Schwah. My exercise workouts reduce anxiety toooo.

tom67inMA profile image
tom67inMA in reply to scooby0111

I was also concerned about the side effects, then returned to work full time while training for and eventually running a half marathon. Was doing great until I developed neuroendocrine and had platinum chemo.

Shooter1 profile image
Shooter1 in reply to GoBucks

Ice cream sandwich reward daily.

GoBucks profile image
GoBucks in reply to Shooter1

Shooter, Handel's Ice Cream for my treats.

j-o-h-n profile image
j-o-h-n in reply to Shooter1

Double Ditto.....on the ice cream.....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 11/01/2020 5:45 PM EST

j-o-h-n profile image
j-o-h-n in reply to GoBucks

Ditto.....on the ice cream.....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 11/01/2020 5:44 PM EST

timotur profile image
timotur

Watch your BP and any signs of arrhythmia. I stopped at six months due to high BP and continued on Lupron only.

Hirsch profile image
Hirsch in reply to timotur

How high did your bp get?

timotur profile image
timotur in reply to Hirsch

My BP on Zytiga/Lupron went from about 110/70 before treatment to 165/98. My tinnitus would get louder after taking a Zytiga tablet, indicating my BP was rising. Continuing on Lupron only, my BP stabilized around130/85, and PSA continued to drop to n/d anyway.

Hirsch profile image
Hirsch in reply to timotur

Thanks. Take care

alsam profile image
alsam

Stage 4 patient... I have been on Abiraterone and Prednisolone for 9 yrs now.. Most of the comments passed are valid in terms of side effects.... I am only now facing bone pain issues due to the length of time that I have been on these meds.. Checks are underway for Osteoporosis... The drug saved my life though....

Engraver68 profile image
Engraver68

Nothing to worry about I have been taking the combination for over 2 years now I ride my bike up to 20 miles daily or run up to 3 miles instead.

I walk about 6 miles most days and very active in diy and gardening etc around the home.

There are times when working that I know I have reached a threshold and have to stop work and rest after say 4 hours.

There are occasions when I know not to overdo it and I will just rest for the day and cut out any excessive exercise or work around the home

FinalBossMatt profile image
FinalBossMatt

All I got was some fatigue and massive boost of appetite.

PeteLG profile image
PeteLG

Know your body and listen to it: everything in moderation (except smoking). In 2 weeks on A/P my PSA went from 128 to 5.25. I am a believer!

leo2634 profile image
leo2634

It will definitely cramp your lifestyle but it beats the alternative. For me side effects are weight gain, mostly in the gut area,libido is all but gone,some fatigue, hot flashes etc. But you get used to it and its really not bad. Never give up Never surrender. Leo

Shooter1 profile image
Shooter1 in reply to leo2634

Darned hot flashes were held in place by fan right in front and above me while I was still working.. Fan off and on several times each shift.

KWman profile image
KWman

Great set of comments. Same experience here -- fatigue, hot flashes, -- but the combination of zytega (abiratone) and prednisone has progressively shrunk my PSA, now at .07, and made the cancer invisible to a CAT scan.

Pheart2 profile image
Pheart2

I’m on Lupron, Zytiga 250 mg with low fat breakfast & Prednisone 5mg since January 2020. PSA<.03 & Scans normal. No side effects at all so far.

Rod98168 profile image
Rod98168

I was taking Zytiga for several months but had to stop because it was giving me a increasingly worse cough.

j-o-h-n profile image
j-o-h-n

So scooby0111, don't be afraid to answer the following:

Please tell us your bio. Age? Location? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)? Thank You!!!

All info is voluntary, but it helps us help you and helps us too. If you do respond copy and paste it in your home page for your use and for other members’ reference.

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 11/01/2020 5:42 PM EST

GoBucks profile image
GoBucks in reply to j-o-h-n

So many questions. Zoinks!

j-o-h-n profile image
j-o-h-n in reply to GoBucks

Oh yeah.... and two more "Do you think we ask too many questions?" and "WTF does a Zoiks mean?"

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 11/01/2020 8:16 PM EST

GoBucks profile image
GoBucks in reply to j-o-h-n

Haha. I fixed it. Zoinks! You were questioning my misspelling, right?

j-o-h-n profile image
j-o-h-n in reply to GoBucks

No, Your mental state......👀

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 11/01/2020 9:48 PM EST

GoBucks profile image
GoBucks in reply to j-o-h-n

I questioned my Psychiatrist why he charged me a group rate. He said I had multiple personalities.

j-o-h-n profile image
j-o-h-n in reply to GoBucks

LOL.... Mine said "get on the couch, and btw what do you for a living?

I told him "I was an automobile mechanic" He said "in that case get under the couch"...

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 11/01/2020 10:20 PM EST

j-o-h-n profile image
j-o-h-n in reply to GoBucks

#1 rule for someone with multiple personalities:

"Be what you is, and not what you ain't, cause if you ain't what you is, you is what you ain't"...

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 11/01/2020 10:40 PM EST

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