20 Bags & Counting!

[3putt]

Good evening brethren. Just received my 20th vial of Zytiga and was curious as to who has claim to the most months on this incredible drug?

[Magnus1964]

I was on Zytiga for 30 months before it began to fail.

[3putt in reply to Magnus1964]

Thanks. I’m currently on Zytiga, prednisone daily with Lupron every 3 months. Diagnosed stage 4 with mets in pelvis. I had issues with side effects early on but aside from a newly acquired beer belly and bouts of exhaustion feeling pretty good. As a realist I’m always looking forward to whatever comes next. Where did modern medicine lead you after zytiga regiment if you don’t mind me asking?

[Magnus1964 in reply to 3putt]

After Zytiga I had nodules in my lungs. I went on the Provenge treatment which worked well. After that I went on a drug trial with Xtandi. I am about done with that, PSA going up after 3 1/2 years. I am having a bone biopsy to see if I qualify for Ketruda.

[Saydeebugz in reply to 3putt]

Husband has ALL of your same issues n treatments (one or 2 more). Completed all treatments 6mos ago... in remission. Be strong, keep fighting ♡♡

[Grumpyswife in reply to Magnus1964]

My husband will start Zytiga and Prednisone tomorrow after using Xtandi successfully 16 months.

Any tips for taking it to make it work better?

[whatsinaname in reply to Grumpyswife]

I would say replace Prednisone with Dexamethasone for better results. I have done just that and my PSA results tonight will confirm whether it was the right thing to do.

Cheers !!

[ctflatlander in reply to whatsinaname]

Let us know your results. Do you have supporting evidence for the switch? e.g trials.

Bob

[whatsinaname in reply to ctflatlander]

Yes, there are at least a couple of reports on the Internet which say that Abiraterone + Dexamethasone was better than Abiraterone + Prednisone.

Google and I am sure you will find these reports (which have been written after trials). Cheers !!

[whatsinaname in reply to ctflatlander]

My PSA results have just come in and there is a slight drop from 41 to 37.

[tom67inMA in reply to whatsinaname]

I'm very happy to hear that your PSA went down, even if only slightly. Does this mean Dexamethasone is working better for you than chemo ever did?

[whatsinaname in reply to tom67inMA]

I think so but one will have to wait for at least a month to be sure.

Chemo was a complete disaster for me. Waste of time, money and completely useless. Instead I lost hair and screwed up my immune system.

[Lettuce231 in reply to Grumpyswife]

Take Zytiga with food, hope all goes well

[LearnAll in reply to Lettuce231]

if you take full two tabs with food,it amounts to overdose. if you are taking zytiga with low fat meals, you only need 1/2 tablet as its absoption goes up 4 times.

[Lettuce231 in reply to LearnAll]

Thanks, glad you explained that, I perhaps should have done. I've been using 500g with food and it seems to be going well.

Have a good day.

Phil

[Magnus1964 in reply to Grumpyswife]

Keep up his vitamin D3 level. I keep telling everyone on the forum about D3. I think it is important. I was told by one of my doctors that cancer patients have low D3 levels. So i had mine checked and it was. I have been taking 1000 i.u.'s daily.

[leo2634 in reply to Grumpyswife]

I take my Zytiga at 6:00 AM with a full 12 oz. Bottle of water it works great then take my Prednisone with breakfast around 8:30 AM.

[Hidden]

Keep the train rolling conductor ... let it ride .. good luck ..

[PaulC2]

I’ve been on Zytiga since January 2012.

EDIT: Thanks to all the whoops and cheers for my 7½ years.

Unfortunately, I made a typo.

I should have written:

I've been on Zytiga since January 2013.

So it's actually been only 6½ years .... so far.

[whatsinaname in reply to PaulC2]

That's SIX YEARS + SEVEN MONTHS now. PHENOMENAL !!! Cheers !!!

All the very best !!!

Post has been edited for obvious reasons.

[CalBear74 in reply to whatsinaname]

Seven years seven months. Very impressive.

[Hidden in reply to whatsinaname]

🥳

[Cheerr in reply to PaulC2]

Wow that’s a great response. Can you tell a little about your PCA, where it’s spread or your PSA score on diagnosis etc.

[Hidden in reply to PaulC2]

That’s awesome!

[Magnus1964 in reply to PaulC2]

WOW!!! That is amazing. You have got to be the champion.

[Hidden in reply to PaulC2]

Oh yah! Go zytiga! Keep on truckin PaulC2 !👏💪

[TEBozo in reply to PaulC2]

Are you ever getting off?

[PaulC2 in reply to TEBozo]

In English, that question is ambiguous. 😀

I can’t foresee the future. Five years ago, I figured Zytiga would fail within a year or two and I had a backup plan, a backup to the backup, and a contingency plan. Nowadays, it seems possible I might remain on it, perhaps with occasional holidays, for the rest of my life. But I still have three backups plans in case it doesn’t.

As to the other interpretation: I have all the signs and symptoms of a man with essentially zero testosterone. I’ve made my peace with it now, but it was quite a struggle for the first two or three years to lose an important part of my identity.

[BillDoc]

I was on Zytiga for just over 3 years before it failed and I moved to Xtandi, which I’ve been on for 1 year. Although the Xtandi is starting to fail, I want to continue on it as long as it’s viable. Chemo is next and I want to delay going there as long as possible. Good luck!

[dress2544]

I have completed 2 years with zytiga + prednisolone. Hoping for more.

[dougnola]

I’ve been on Zytiga/prednisone for just over two years. May your stint be a long one!

[Hidden in reply to dougnola]

A Longfellow!

[dougnola in reply to Hidden]

Early in the land of Zytiga, my artist friend insisted to me it was totally cool that my Zytiga bags had a hazardous material icon/label. She insisted I save them all in the event I hung around awhile so she could make some sort of collage art out of them. With 25 bags, I can make a five by five grid now. My goal is to make a duvet cover and go from there. 😎

[Hidden in reply to dougnola]

Go duvet! That’s A good friend that you have there.. go Zytiga ......all treatments are toxic to us ....the hope is to kill pc not also the host...we will hang as long as we can ... we know APC is a long winded SOB...let’s string it along and bore it to death . No t here . Go eat somewhere else CS... pc doesn’t like happiness ....this is our plight ...here goes nothing .. live well 💪

[rrs18]

On Zytiga for 23 months before becoming refractory. Am now on Xtandi. No progress results yet.

[leo2634]

19 months and counting.

[Hidden in reply to leo2634]

👏🥳

[TEBozo]

My Los Angeles oncologist Richard Lam put me on Zytiga with no bone mets only pelvic nide involvement. Dallas doctor advised against it because it may fail instead of cure me.Lam say absolutely take it as it works with aggressive intermediate cancers

[TommyTV]

27th January 2012. Still taking it in the Stampede trial. PSA@ dx 571, immeasurable after 12 weeks, currently immeasurable. Stage 4, Gleason 4 + 3, seven major bone Mets to Skull, shoulder, two ribs, pelvis and both femurs. Some smaller Mets in fingers.

[Hidden in reply to TommyTV]

Here’s to staying immeasurable ...😂

[Jbooml in reply to TommyTV]

This is reassuring to those of us with bone mets treated with abi.....it has persistent affects.....I still feel that (blood) biopsies are crucially needed to narrow in on more targeted post crPC eventualities. Even knowing one carries deadly untreatable variants lurking in the shadows offer keyhole illumination of what possibly shines on the horizon.....genetics and big data crunching leading to paradoxical treatment solutions may prove invaluable to our worst feared outcomes.

[Walter_Gould]

I have been on Zytiga/Lupron/Prednisone for over 8 years and my PSA has remained undetectable since my fourth month.

[Hidden in reply to Walter_Gould]

Fantastic ...gives much hope to others . Thank you ..

[Drphil1938 in reply to Walter_Gould]

May I ask where your numbers were when you started? How many mets and lymph nodes were present? Also your

age?

I think this is amazing and am hoping for results that equal yours. I am on the same protocol. I have gone from 99 psa and 460 testosterone to 4.4 and less than 5 in 3 months respectively. Keep up the good results and may God continue to bless you. 🤠🍸🍸

[Hidden in reply to Drphil1938]

🙏

[Bunkerboy]

4 1/2 years Zytiga, Prednisone. Urologist put me on 1000 mg D3 and 1000mg Calcium Carbonate and Trelstar shots twice a year.

[Hidden]

Sounds like a good uro..

[Joes-dad]

Hey 3putt, I'm on #20 also! Do you write the number on the bottles caps?

I had a little daydream last week when I pulled bottle #19 out of my cabinet and it was turned around...it looked like a 61. That's my goal now....

Bob

[3putt in reply to Joes-dad]

Amen my brother! Coincidentally I received my Medicare card in the mail this afternoon. Thank God my wife has amazing insurance coverage so I can delay taking that coverage. While Zytiga has truly been a miracle drug the cost is still beyond reach for so many. Hopefully the cost will start coming start come no down so that all can enjoy opening that 61st bottle!

[Hidden in reply to Joes-dad]

Keep knocking it out of the park ..we want pc gone...✌️

[wifeofvet]

my husbnd took it for 6 yrs before it began to fail.

[Hidden in reply to wifeofvet]

That’s pretty darn good .. 😂

[Hidden]

1 year so far. Seems like I'm a newbie in this group. This is encouraging though to see what is possible.

[Cmdrdata]

I am on my 17th. PSA still <0.05, however the past few months T started to climb. We’ll see what happens in the next few months. I have not been on any Lupron or Firmagon since Feb 2018.

[Cmdrdata]

Question for those reporting “long term” success on Zytiga: has your T level stay below castrate level (<50) or gone up during those time? If not, are you also getting Lupron or Firmagon during all those time? Thanks.

[PaulC2 in reply to Cmdrdata]

My T has remained <10 throughout. I am on Zytiga+prednisone only, without Lupron, Firmagon, or other LHRH agonist/antagonist.

[dougnola in reply to Cmdrdata]

My T has been consistently <8 ng/dl since 5/2017. Switched fro dexa to Lupron in 7/17 and it stayed that way. Psa continued to get lower and lower and finally hit ND in early 8/18. Latest result was this week (8/19 )and all still ND.

[Cmdrdata in reply to dougnola]

The reason for my T question is because it is my understanding that Zytiga’s primary function from literatures says it is an “anti-androgen”, not a total T suppressor. Your T is currently suppressed primarily by Lupron, which is primarily a T-suppressor by signaling the pitituary glands to stop T production, to castrate level. So the mystery remains if long term Zytiga needs Lupron or Firmagon to keep T at undetectable level. My T is slowly rising in the last 3 months after being on Z for 17 months.

[dougnola in reply to Cmdrdata]

I would leave it to those more expert here on the following, but my understanding is that Zytiga helps suppress T production from non prostate glands (pituitary) and cancer cells themselves while lupron targets the prostate. I still have mine by the way for what it’s worth. I wish you well on your journey! Doug

[cbgjr]

Guess I'm at the other extreme. Zytiga worked initially, but then started failing at around 4- 5 months. PSA never went below 4. And that was with dexa.