To all those currently taking Zytiga; - Advanced Prostate...

Advanced Prostate Cancer

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To all those currently taking Zytiga;

DSEE profile image
DSEE
36 Replies

I am trying to determine the longest period of time members of this forum currently on Zytiga have taken it.

I am approaching one year and it remains effective, however I am told it at some point discontinues it effectiveness.

Thankful as PSA remains down on this drug.

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DSEE profile image
DSEE
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36 Replies
RustyDakota profile image
RustyDakota

Since no one else has replied yet...

I passed the one-year mark with Zytiga this week.

My next PSA test is next week. It will be a real nail-biter.

Everybody is different. Hope yours keeps working too.

Scruffybut1 profile image
Scruffybut1

Count me in for 2 years and 2 months to date. Effectiveness via PSA shows 7.8 month 1, 5.8 month 2 and 0.03 to 0.05 for 20 months now 0.06 and 0.07 rising. Next result Monday 27th September. Great results but now blitzed by variety of bone tumours, final scans 17 Sept. Such a shame that the most beautiful colours on nuclear bone scans are the tumours! Had 20 tumours when dxd but chemo wiped them out. Many old ones returned and brought their mates to play!

Magnus1964 profile image
Magnus1964

I am off Zytiga now it worked for 3 1/2 year for me. Currently on Xtandi (2 1/2 years).

DSEE profile image
DSEE in reply to Magnus1964

So far you are the longest on Zytiga.

My reason for asking is the cost of the drug is killing me!

Magnus1964 profile image
Magnus1964 in reply to DSEE

Did your Doctor check out The Patient Access Network for you. They can help with the cost if you qualify, ie. income. You will need a copy of your latest 1040 tax form.

DSEE profile image
DSEE in reply to Magnus1964

Yes

We cannot get help because my wife still works and we are over income limits for all assistance.

Magnus1964 profile image
Magnus1964 in reply to DSEE

Have you check different drug stores? Independent drug stores are cheaper than the chain drug store. Unless you are limited buy insurance as to where you can go. You might ever consider a Canadian source, but be careful.

leo2634 profile image
leo2634 in reply to DSEE

Go on the American Cancer Society websites they have links to Cancer advocate groups to help with the costs.

DSEE profile image
DSEE in reply to leo2634

Been there done that!

Apparently if you are retired it does not matter.

Everyone in household has to be retired .

There is an income limit to get assistance and it goes by household income.

We are currently 6000-10,000 a year depending on Medicare and supplemental policy coverage and when “donut hole” kicks in, etc.

Never saw this coming!

leo2634 profile image
leo2634 in reply to DSEE

Without talking finance there are other Advocate groups out there that don't put too much emphasis on income. It will pay for you to do the research. It is out there.

DSEE profile image
DSEE in reply to leo2634

I will continue to look!

Mkeman profile image
Mkeman in reply to DSEE

I have heard that when cost is an issue some MOs are allowing patients to try the one tablet with a light breakfast regimen that showed some promise in a study at the University of Chicago.

Walter_Gould profile image
Walter_Gould in reply to DSEE

If you are still in need of Zytiga, I have four bottles with a use by date of 08/2020 that I will sell you at a greatly reduced price. I also have a good supply of prednisone to go with the Zytiga. You can contact me at 501-416-6158 or on this site.

DSEE profile image
DSEE in reply to Walter_Gould

I have been off Zytiga since November- and actually have a 500.00 bottle (co pay when not in Medicare donut hole) on my shelf.

Currently on Xtandi-

Zytiga failed in less than a year.

RonL profile image
RonL

18 months so far, still working.

joancarles profile image
joancarles

This month a year ago I started with Zytiga. At this time, the PSA remains stable at 0.17. Next week I have control and hope that everything stays the same.

leo2634 profile image
leo2634

7 months PSA undetectable

Zytigadude profile image
Zytigadude

I have a friend in Arizona that has been on Zytiga, Prednisone, Lupron for 4 years now. Before going on Zytiga he was going on a trip to Italy. He was told to enjoy it as this would be his last trip he was going to be able to take. Upon return he was put on Zytiga and is getting around real well.

ggbk profile image
ggbk in reply to Zytigadude

I started Zytiga, lupron , prednisone on Feb 2nd. My wife and I took a ten day trip to Italy three months later. I got winded a few times but it was do able.

I was at the PCRI annual convention last week, and spoke to several people who have been on Zytiga for the past 3+ years. I just started 2 months ago, and hope it will last for several years to come. So far so good.

Walter_Gould profile image
Walter_Gould

I have been on Zytiga over seven years with minor side effects and PSA is still undetectable.

Apollo123 profile image
Apollo123

Hi I have been in Zytiga for 15 months with an undetectable PSA. I’m hoping it lasts for many years👍

Rmanns profile image
Rmanns

2 years plus. l read somewhere 18 months is average.

DSEE profile image
DSEE in reply to Rmanns

So far the longest I have seen is 7 years!

Dalph87 profile image
Dalph87

Dad's MO said you can expect it to work for 1 year on average but it ranges between 6 months to 6 years! And of course there are some rare cases where it's still effective after 6 years! He is currently in his 4th month with it and doing well, no side effects except occasional hot flashes and slight fatigue.

Cmdrdata profile image
Cmdrdata

On Zytiga since March 2018. First month was augmented by 1-month depot of Firmagon. T has stayed at <2, and PSA last 3 months has stayed at 0.1

Second subject is cost. It would have been hard if I did not get help from by PAN copay. I had considered getting AA from pharmacy(s) in India as they cost less than $500 per month. Fortunately I haven’t had to go that route (yet).

Wings-of-Eagles profile image
Wings-of-Eagles

Been on Zytiga for 4 years now, it lowered my PSA to undetectable for the past 3 years and 10 months. I think Todd in Washington is on his 58th month (almost 5 years) of undetectable on Zytiga

DSEE profile image
DSEE in reply to Wings-of-Eagles

That is very encouraging! Thank you for posting.

Could not see your DX?

What stage were you diagnosed, Gleason score, and how many years ago?

I think I am in for Zytiga a lot longer than the year I have been on it!

ewhite999 profile image
ewhite999

Has anyone come across any research that explains why Zytiga can remain effective for 7 years for one person but only 1 year for another?

DSEE profile image
DSEE in reply to ewhite999

I would like to know that also.

HopingForTheBest1 profile image
HopingForTheBest1 in reply to ewhite999

I suggest you contact Janssen Pharmaceuticals, the maker of Zytiga.

DSEE profile image
DSEE in reply to HopingForTheBest1

Income limit.

Got nowhere with them!

easeytiger profile image
easeytiger

Just been taken off Zytiga, worked for 9 months.

DSEE profile image
DSEE in reply to easeytiger

Curious....

What was the criteria for taking you off?

I too had same Gleason and same Mets.

easeytiger profile image
easeytiger in reply to DSEE

I had a very slow decreasing PSA. Started at 68, currently 24. The decline was generally constant but nothing like the usual drop you see men having. I also still have active Mets which showed up on a number of WBMRI's I had over a period of two months.

TommyTV profile image
TommyTV

Just approaching 7 years on Zytiga since dx. PSA@ dx 571, currently immeasurable. Free in the U.K.

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