ZYTIGA: Our Collective Experiences

Mike, I will certainly keep posting. I am not sure if my Onco will propose chemo, but there is a point of view that says early Chemo is better than waiting. I have also heard that Chemo can jump start Zytiga back into effectiveness.

My main concern is my past history of rapid rises in PSA. For me the rate of increase is more important than the actual number. If this is a rising trend, then I’d prefer to jump on it sooner rather than later.

On the other hand waiting 6 more weeks just to confirm the PSA trend probably won’t hurt.

Hoping for good results for your April tests!

Chas

I'm adding my husband's updated signature now that he started Zytiga/Prednisone 2/9/2019. Just wanted to mention that he has no new side effects. (He restarted Lupron 9/2018 with the usual Lupron SE's--fatigue, muscle weakness, lousy sleep, etc.) The latest PSA of 4.02 is down from previous months on Lupron and too soon to really reflect Zytiga treatment. We wish the Lupron had brought it down lower, but the trend so far is down, which is better than the other direction!

Zytiga regime: He gets up at 6:30 AM, and takes a glass of water with each pill--4 glasses of water total. Somebody on this thread, I believe, recommended drinking a lot of water with each pill. Then he goes back to sleep until about 8:00 AM, showers, then has his coffee and breakfast with half the prednisone then the other half with another meal later in the day.

Hi Mike, unfortunately none of the “remaining” drugs (Xtandi, Apalutamide and Provenge) are available to me here in Australia. Well they are available but not via the Pharmaceutical Benefits Scheme (PBS) a government financed subsidy scheme which means I pay $6.30 per subscription rather than full price. They are all prohibitively expensive.

Incidentally I am surprised your Onco is proposing Apalutamide as I thought that even in the US that was only available for non metastatic patients, and you have indicated several mets. No matter, if you can get it, then go for it.

Chas

PS Should explain Xtandi is approved on the PBS, but not if Zytiga has already been prescribed.

Post Edited (Chask) : 3/4/2019 5:51:38 PM (GMT-7)

I’m an Xtandi guy but I guess it’s close enough to Zytiga to post on this thread. After being on Lupron for five weeks and Xtandi for three weeks my PSA dropped from 64.1 to 1.2. At first I thought it was great, but then I started thinking if it went that low maybe it should have hit undetectable. My MO waved off my thinking and he said he would have been happy if it had come in at 10 over that short period of time.

Anyway, I’m not spiking the ball just yet, but I’m happy for having my first favorable PSA test result in four years of treatment. I will be looking towards undetectable next time.

Mattam

Great news and response. Based on the drop so for I expect (not a doctor) to see it drop and level off.

I went of Zytiga 10 days ago, and will be starting Xtandi hopefully in another 10 days, and potetially the Prostar Trial. Will start a new thread when I get on.

Mike

Hello To All Readers,

In the interest of helping other brothers and comrades, my insurance coverage steered me towards the new generic version of ZYTIGA ... simply called "ABIRATERONE ACETATE" ...

In my case, staying on ZYTIGA was going to result in extra costs known as a "name brand penalty" for staying on name brand ZYTIGA.

So, after consulting with my doctor's office, it became apparent that going to the newly approved generic version of ZYTIGA was the best decision, in my case, and with my insurance coverage.

Important to know ... as with ZYTIGA, I was offered a copay assistance plan, automatically by the pharmaceutical provider of the generic medication. The enrollment process was easy, and my monthly co-pay for generic ZYTIGA was only $5.00 when I picked up my new prescription last evening.

Each case is different, and so is individual insurance coverage. My doctor kept me on name brand ZYTIGA, but now finds that many patients are being encouraged to switch over to the generic version by their insurance providers. The new financial co-pay incentive was something good to learn about, once I switched over to ABIRATERONE ACETATE.

My dosage is the same ... the daily medication protocol is the same ... the routine is the same, with the new generic.

I hope this post might help another comrade, now or down the road. I continue to collect my empty medication bottles, as a way to track my progress on this medication, and I have over 40 empty bottles lined up, from the past 40 months since starting ZYTIGA.

My best,
CYCLONE ~ Iowa State University

Well a bit of good news.

Latest PSA shows a decline from 1.2 to .85, so Everton, yes Zytiga numbers can bounce.

After my previous reading I was convinced that Zytiga was failing and I would see an upward trend in PSA. The Oncologist was more optimistic and said “it would be nice if the next reading starts with a 1”. I hope he won’t be too disappointed.!!

This latest reading has given me fresh hope that I could have a lengthy time on Zytiga.

Chas

Good news is the Cat & Bone show nothing has changed since the last scans 6 months ago. My PSA still is creeping, my M.O. is not concerned yet as the doubling time is around 5 months.

Dan H said...
Hi, all. Newbie here. I've read some old posts regarding leg muscle weakness. Sorry to bring up an old topic, but I've been on Zytiga for over a year and have experienced leg muscle weakness while on the full dose. My doc says it's ok to try a lower dose to see if it helps. So I'm starting a half dose today. Has anyone else had improved leg strength with a lower dose?

Hi Dan
Welcome to Healing Well were there is great members and a lot of excellent information. I have been on Zytiga for about 10 months and have never felt like I had experienced leg muscle weakness. Now that being said the Lupron has taken my T down to 0.1 and I know I have loss arm and leg strength from it. Hopefully someone else will come along with some helpful information for you.

2 questions - am now metastatic CR since Lupron not responding - had imrt only 9 yrs ago,
then Lupron off and on since 2016.. Dr says to research and choose xtandi or zytiga:

1. Am interested in specific side effects from the prednisone - I realize
it may not be easy to know if s/e from Lupron or zytiga or pred or some combo of them.

I read that pred can have a much wider range of s/e and also many that might
not be expected from lupron or zytiga, but many s/e probably could be same for all.

===> am asking since am so afraid of the pred effects, even if its just the 10mg or even 5mg a day.
have read horrible stories in so many places since pred is used for so many things

2. I realize that pred is needed since zytiga takes away some needed chemicals and pred
can help replace it (not being technical here at all and that's ok, just that pred is needed dr says.


===> could that mean that the prednisone is in effect used by body in a different way
than if it would have been given for other reasons -- and thus that its s/e would be less ?

or could it still do the usual things pred does as to side effects ?


3. If this shd be posted in sep posting - could an admin or someone make it a new post in this forum ?

hard for me to navigate these things now.


4. finally, do you know of a similar thread like this for xtandi ? (vs sep postings ?)

am spending hrs and hrs doing searches on both drugs on forum and on web as to s/e
and seeing various results in various threads but not a unified thread like this one -
cyclone thanks for doing this one.

the CR milestone has been a big shock

Tom, on my computer there is a large green button that says "new topic". You may get more mileage out of a new post because this one may get skipped. Re: prednisone your thought & Gmoose reply are correct. The prednisone is only a replacement for what Zytiga depletes. Xtandi does not need prednisone so advantage there. If cost or insurance are issues, Zytiga is now generic and much cheaper than Xtandi. If you need help posting a new topic email me with your number and I'll call to walk you through it.

Question for the guys that tried Zytiga.

How high where your ALT and AST results before your Zytiga / ABIRATERONE ACETATE dose was lowered or discontinued?
Thank you
Brooke

Post Edited (Mrs.BD) : 9/24/2020 1:01:58 PM (GMT-6)

Mrs.BD said...
Question for the guys that tried Zytiga.

How high where your ALT and AST results before your Zytiga / ABIRATERONE ACETATE dose was lowered or discontinued?
Thank you
Brooke

My ALT was 258. My AST was 143.