HealingWell
Search Close Search
☰

ZYTIGA: Our Collective Experiences

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
1 2 3 4 5 67 8 9 10
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/14/2018 7:44 PM (GMT 0)
Well almost 2 months on Zytiga and my numbers are finally coming down. Recent PSA 1.8 from 4.0 a month ago. Might have a UTI lower back pain, constantly going to can was at M.O. today waiting on pee test results. Happy with results was getting a little disappointed when my PSA was continuing to climb.
Posted 11/15/2018 3:19 AM (GMT 0)
I am now on a reduced dose of zytiga-750mg instead of 1000. So far so good-all my liver labs normal the first 2 weeks.
Posted 11/16/2018 6:20 AM (GMT 0)
A disappointing result with my last PSA showing an increase from .76 to .83. Not a lot, but it is 10% and any increase is bad, especially after a slow downward trend.

Seeing my Onco next week and I suspect it will be “carry on and retest in 6 weeks”.

Ah well, time to open another bottle of good Aussie shiraz. Gotta work my way through my cellar before it’s too late.

Keep on keeping on,

Chas
Posted 11/16/2018 12:35 PM (GMT 0)
Chask - Don't get too disappointed. My husbands PSA has been going up, then down, then up on Zytiga, and he started it in July as well. We went to Dr. Sartor two weeks ago ... and he said "not to worry, sometimes takes a while for the Zytiga to show up in lowering the PSA ... just keep taking it and will see you in January." My husband had another blood test yesterday, so we will know the results of that one either today or more than likely, next week. Enjoy your Thanksgiving and do your best not to worry.
Posted 11/16/2018 11:37 PM (GMT 0)
Thanks for the encouragement Debbie. I’m not too worried at this stage and have heard of ups and downs with Zytiga. Still we always hope for the best don’t we?

My biggest concern is that Zytiga is provided virtually free through the Australian Pharmaceutical Benefit Scheme (PBS), However it is only approved at the subsidised rate under certain conditions, one of which is

“Patient must not receive PBS-subsidised abiraterone if progressive disease develops while on abiraterone”.

I hope this small rise will not indicate “progressive disease”. Knowing my Onco quite well, I am pretty sure he will support it’s continuance, but you never know how the bureaucratic bean counters will react.

Chas
Posted 11/17/2018 3:43 PM (GMT 0)
On November 30th I will celebrate my three year anniversary on a regimen of Lupron, Zytiga, Prednisone, and Zometa. With the exception of my lab work one month after beginning Zytiga my psa has been <.1 and most recently ( I moved in May) <.05. I still have hot flashes but I am able to tolerate them better and my energy while not the best is better than it has been for a long time. Going to the gym now at least 5 times a week and that helps. I would recommend anyone on this med (who is able to) to start a workout routine that includes cardio and weight lifting. I am no where near as strong as I used to be but am much stronger than I was a year ago, and, the workouts are harder to get through. But I am getting through them and it is helping tremendously. I do have joint pain in my elbows but other than the aches and pains as we get older I feel pretty good about life.
Posted 11/23/2018 1:57 AM (GMT 0)
Meeting with Onco today, and as suspected, in spite of a rise in PSA, I will go another round with Zytiga and retest in 6 weeks. Onco is hopefull that Zytiga is holding, though not significantly reducing, my PSA. Has a lot of faith in Zytiga and doesn’t want to give up on it yet.

As has been discussed previously there is a possibility that Zytiga will be more effective if taken WITH food, rather than on an empty stomach, so we are going to give that a go. This paper https://www.future-science.com/doi/full/10.4155/ipk-2016-0026) explains some trials that were conducted.

One other option may be to replace prednisone with dexymethasone which has also shown sometimes to improve the effectiveness of Zytiga.

Am willing to try anything to delay the move onto Chemo.

Chas

PS, a paper on the switch from pred to dexy https://academic.oup.com/annonc/article/27/suppl_6/748p/2799486
Posted 12/9/2018 6:11 PM (GMT 0)

Hello ~

I just placed my latest order for ZYTIGA a few nights ago.

I was told that the new GENERIC VERSION is now available, and my prescription was switched over to the generic version.

I know that the medication patent was the subject of court filings in recent months.

I just received my new prescription, and it is, indeed, the generic version.

The cost of brand name ZYTIGA (abiraterone acetate) for a month is creeping towards $10,000 a month in the United States.

I was told that the new generic form was still valued at over $7,000, which is still costly.

In my case, my work insurance covers the price of either version, but if a generic is available, many times the insurance company will want a switch over to the generic version, UNLESS you have a specific doctor's order to remain on the name brand medication.

I was told by the pharmacist that, over time, the price of generics often begins to decrease.

I felt that knowledge of the new availability of the generic version of ZYTIGA being offered to me this past week was important information to share on this thread.

It is my hope that the cost of these life-saving medications will continue to decrease, to help all of our brothers.

Keeping in touch,
CYCLONE ~ Iowa State University
Posted 1/10/2019 2:11 AM (GMT 0)
Good evening all.
Curious, as I’ve just completed my first year on Zytiga, what’s the treatment once this miracle drug stops working?
Posted 1/10/2019 2:25 PM (GMT 0)

DaveRob said...
Good evening all.
Curious, as I’ve just completed my first year on Zytiga, what’s the treatment once this miracle drug stops working?


If you haven't tried Xtandi that may be an option, or possibly chemo, or a combination of both. Sometimes a re challenge of Chemo kick starts Zytiga to start working again.
Posted 1/11/2019 8:21 PM (GMT 0)
Two months ago, my PSA was showing a slight increase after only 4 months on Zytiga. When I visited my MO, the Professor was not available so I saw his Registrar. Given the disappointing result I asked him if it would be worth trying Zytiga WITH food as that seemed to increase its effectiveness. As all my other bloods were good he went along with that. I started on that regime for a couple of weeks, but as it happened I developed a UTI and was feeling pretty bad, so being uncertain as whether it was the UTI or the new regime that was affecting me, I reverted to Zytiga without food.

Anyway last test happily showed PSA stable, and on my MO visit yesterday, I saw my regular guy (the professor of Oncology) and he explained an interesting fact.

When new drugs are developed, the testing includes determining the Optimal Dosage Level. For Zytiga that has been set at 1000mg per day, usually prescribed as 2x500mg on an empty stomach. Now while it has been shown that taking lower levels of Zytiga WITH food can achieve the same result, that does NOT mean that taking more than the normal dosage will be more effective. Consequently taking the normal dosage WITH food is also unlikely to improve effectiveness and while some tests have shown that toxicity is also NOT increased, it is generally considered better not to overdose.

I have also just had a full range of blood tests (including liver tests) and they all came back completely normal so my brief period of overdosing had no effect.

I am just happy that Zytiga does seem to be holding me steady. Would prefer it to be zero, but I’ll take .8. Next test in 2 months, and I can continue enjoying a glass of good Aussie Shiraz.

Chas
Posted 1/13/2019 4:11 AM (GMT 0)

Hello To All Interested In ZYTIGA ~

In an ironic twist of fate, I found out that after being on the newly released generic version of ZYTIGA (Abiraterone Acetate), I found out that in my particular case, staying on the name brand ZYTIGA would actually save me money.

This is due to my particular case, my work insurance, and the original prescription filled out by my doctor a few years ago when I first started ZYTIGA.

The new generic version of ZYTIGA , Abiraterone Acetate, is indeed, less expensive --- but double check with your oncologist and your pharmacy provider first, to determine what is best for your individual situation ... and your monthly cost for name brand ZYTIGA vs. the new generic form, Abiraterone Acetate.

It was an unexpected and ironic twist of events for me that remaining on brand name ZYTIGA would save me a lot more money, personally, as opposed to converting over to the generic form. This situation might change, as time goes by, and the the generic becomes more widely used ... and hopefully, prices will begin to creep downwards.

In my case, my oncologist updated my original prescription to read that no generic versions may be substituted, at the current time.

The generic form of ZYTIGA is still very new, and many doctors don't yet know of its availability.

So, make sure to do your homework, and check into which option is best for you --- name brand vs. newly released generic version.

Keeping in touch,
CYCLONE ~ Iowa State University
Posted 1/16/2019 3:13 PM (GMT 0)
CycloneISU
Thanks for the info on the generic form. By coincidence my Aetna Insurance pharmacy selection,National scripts had me switch over to Walmart Speciality drugs in Florida(even though I live in Cali)? . They said the generic form was ordered.,or approved. My Oncologist had said told me two months ago there is no expected difference between the two, they are virtually identical, so I will start my generic version today. I'll check and see what the insurance price tag is on this, my co-pay went up from $10.00 to $60.00 for an unknown reason, but it is a small price to pay for me,thank God!
Wings aka Dan in So Cal!
Posted 1/16/2019 9:25 PM (GMT 0)
I am very happy to report that my PSA is still <0.01. I have been on a reduced Zytiga dose of 750mg. Unfortunately my liver numbers(ALT & AST) are on the rise again. They had to go to 5 times normal before my MO had me stop last time. They are just approaching 2 times normal. I was off completely last time for several weeks and my PSA was undetectable. Hoping to ride the Zytiga train for many years to come.
Posted 1/19/2019 3:07 PM (GMT 0)
GoBucks - thanks for the comment on your doctor's advice upon the elevated liver enzymes.

I just had my first undetectable PSA test (PSA<.01). 2 months after Lupron and 1 month after starting Zytiga (and EBRT).

The one bit of concerning news is that my ALT liver enzyme was 76 versus standard <60 and about double what it was before starting any meds.

Meeting with my MO in a few days, but glad to know it may not mean the treatment needs to stop. If 5x normal is the upper limit, I may still have some headroom. Guess its time to cut out the occasional glass of wine...
Posted 1/21/2019 4:23 PM (GMT 0)

Hello Wings of Eagles,

If you want to go back to the brand name ZYTIGA, which might reduce your out-of-pocket cost (your $10 copay for brand name vs. $60 for generic), you can have your doctor go back to your original prescription and have the prescription state "no substitutions" for the time being.

My doctor did this, and so I am back on brand name ZYTIGA, which saved me the higher monthly out-of-pocket cost for the generic, which in my case, with my insurance, ended up costing me more for the generic. It's an ironic twist of events, but this is where it's at for me, at this time.

Another friend of mine found himself in this same situation, and he is going right back on brand name ZYTIGA, for the same reasons. His doctor also revised the prescription, for now, stating "no substitutions" ...

I'm sure, given time, the arrival of the new generic will result in reduced prices, all around, given some time. But for now, I am going back on brand name ZYTIGA, to save the higher out-of-pocket expense that the generic would cost me. It's an unexpected twist of events, for sure.

Stay strong, my brothers ~
CYCLONE ~ Iowa State University
Posted 1/22/2019 7:02 PM (GMT 0)

PGduane said...


I just had my first undetectable PSA test (PSA<.01). 2 months after Lupron and 1 month after starting Zytiga (and EBRT).

PGduane, that is the best news! Welcome to Club Zero! When my AST & ALT were on the rise I did weekly blood draws. By the way it is cheaper on my insurance to do a CMP(complete metabolic panel) than to just isolate and test ALT & AST. So get the whole test (CMP). My MO has numerous people on 750 mg. Not so for 500mg. I told him I'd rather be on 500 than something else. So if my liver numbers go bad again we'll probably do the same dance; off zytiga til numbers are normal, start 500mg and verify ok & then back to 750mg.
Posted 1/22/2019 8:41 PM (GMT 0)
My husband's PSA rose a bit again ... now 1.44. So, Dr. Sartor is trying something a bit different ... taking him off Pregnazone and starting Dexamethzone. He said sometimes, that along with the Zytiga will give it a different boost with patients with Brac2 mutation. He will be doing another CT and bone scan in March and hopefully that will help reduce his PSA. He has also put him on the generic Zytiga ... so .... only time will tell.
Posted 1/23/2019 8:50 PM (GMT 0)
Well, our Dr. Sartor also said my hubby could go on the generic version. Called the pharmacy and the generic is a couple hundred dollars more per month than Zytiga. Currently paying $2,500 per month (not in the donut hole yet, but after this prescription, probably will be) and the generic would have been $2,900 per month. Ouch .... so staying with the original. fyi
Posted 1/24/2019 10:38 PM (GMT 0)
Just finished meeting with my MO after starting Zytiga+Prednisone (while also halfway through 7 weeks of radiation). The ADT+Zytiga seems to be working as my PSA is now <0.05 and my T<2. Liver enzymes doubled, but MO didn't seem too concerned as they'll let it go to about 5x baseline/normal range before changing plans.

The one surprise was that I can cut back on the prednisone. I was initially prescribed 5mg twice a day since starting Zytiga in November, but now only once a day should be fine. Not feeling too hot today, so I'm not sure if its the reduced prednisone or not.

Anyone else have a mid-course reduction in their prednisone?
Posted 1/30/2019 6:52 PM (GMT 0)
My husband just told me that his pharmacy offered the generic for Zytiga this month. Husband didn't know there was a generic and since the pharmacy said there was only a difference of $10.00 he decided to stay with Zytiga. We've got BC/BS of TN and CVS Caremark pharmacy. His PSA has remained steady at >.06 since starting Zytiga so why rock the boat?
Posted 1/30/2019 9:10 PM (GMT 0)
I just recently re-ordered my Zytiga from CVS Specialty. They called and told me they were sending generic. I said no way. They said my Dr scrip did not specify Zytiga only. Called Dr and had them prescribe Zytiga with no substitution. My copay for generic would be $300. With Zytiga it is $10, thanks to Janssen.
Posted 2/2/2019 4:07 AM (GMT 0)
Well we had moved in September to another city 30 minutes away, so I thought it was time to look for a new M.O. The one I had in the other city had left for another hospital, the new M.O. and I just did not hit it off from the get go. I said I had some issues needing address she said they where an Urologist issue so make an appointment with them. Not a great impression for me and my wife was of the same opinion.

So I am happy with the new M.O., but after two more months of being on Zytiga my PSA seems to be stuck at 1.8 . It's better than a rise. I have stopped Zometa so I can get some dental work done. I will being starting Prolia in about 2 - 3 months time.
Posted 2/27/2019 11:56 PM (GMT 0)
After just over 6 months on Zytiga, looks like it may be failing me. Latest PSA = 1.2 up from .8.

Seeing Onco next week and await his opinion. I have read somewhere that changing from Prednisone to Dexamethasone may improve the effectiveness of Zytiga. Anyone got any experience or knowledge of that?

Chas
Posted 2/28/2019 3:58 PM (GMT 0)
@ Chask

It appears we are both on the watch the rise and see if it is too significant to do nothing phase. I have risen from 0.16 to 0.49 in six months. My next blood work is in early April. (3 month visits). My MO believes if it is creeping up, we will watch it until it is drastic. (i.e. i switched to Zytiga from casodex when psa moved from 1 to 4 in three months). I will be watching for your posts.

Mike aka kmclark1
✚ New Topic ✚ Reply
12345678910