Zytiga. How long?: With the exception... - Advanced Prostate...

Advanced Prostate Cancer

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Zytiga. How long?

Todd1963 profile image
68 Replies

With the exception of a year-long holiday from treatment, I have been on Zytiga since October 2013. I am closing in on 10 years of this medication. Has anyone been on it longer. I am still so amazed it is working as well as it is working. My labs were drawn yesterday and my PSA remains less than 0.01. I am still waiting to find out if it is going to cause me to grow a third eye or some thing even less attractive

68 Replies
SuppWife profile image
SuppWife

You are amazing ❤️

Avanat profile image
Avanat

Wow, that’s amazing you’ve been on it so long. Has your PSA been undetectable that long too? Do you have many side effects from Zytiga? Sorry for all the questions but this drug as well as a few others like it came up at my husbands (Steve’s) 3 month check up today at Moffitt. Thankfully his PSA is still undetectable. It’s been undetectable since March, 2021. He’s only on ADT (Orgovyx).

Todd1963 profile image
Todd1963 in reply to Avanat

The side effects that I have experienced has been similar to standard ADT. I am still getting Depo injections every four months in addition to the Zytiga with prednisone. My testosterone is less than seven. Just like my PSA, my testosterone is undetectable. The only side effect unique to Zytiga I have experience is that I am permanently adrenal deficient. When I went on my treatment holiday my adrenals did not start up again thus I am stuck using substitute steroids for the rest of my life. That’s fine because I was supposed to be dead a long time ago.

Concerned-wife profile image
Concerned-wife in reply to Todd1963

How was it determined that you were permanently adrenal deficient? What were the symptoms? Did an endocrinologist decide this? (My husband started having wildly fluctuating blood pressure after 2 years on abi and we are not sure who can help him). Thanks!

Johnkelsey profile image
Johnkelsey in reply to Concerned-wife

In my case, three years into Zytiga, I stopped taking my meds including prednisone for a few days during Covid, and when I couldn't stand up one morning, my wife took me to the hospital. they confirmed Covid and quickly discovered near-zero cortisol. An adrenal kick-start test involving cortisol shots and timed blood work confirmed "adrenal insufficiency." An endocrinologist then joined my portfolio of doctors and I learned to take the prednisone no matter what. they also set me up with injectable cortisol in case I became too ill to swallow again. Haven't had to use that, thankfully.

Lulu700 profile image
Lulu700 in reply to Johnkelsey

Wow John! What a story ! I’m glad that your doc was on it . God bless! 🙏

doc1947g profile image
doc1947g in reply to Lulu700

Long time I did not received any news from your place. Having a LOT of medical problems.

Hope everything are going well.

Lulu700 profile image
Lulu700 in reply to doc1947g

Soory doc , I’ve been out of the loop . I’m sorry for the new problems brother . It’s not like you already didn’t have enough . You’re the tuffest guy that I know . We just got a bad killer seasonal flu , not covid but still brutal . I’m on the mend now . Luv ya doc !🙏❤️

dhccpa profile image
dhccpa in reply to Todd1963

Are you on Lupron? Wasn't sure what Depo meant. If on Lupron or equivalent, how long on it before you started Zytiga? Thanks.

MarkBC profile image
MarkBC

Hi Todd. I can't answer your question but I'm heartened to hear your story. I just started Zytiga two months ago. The first line treatment of chemo/ADT worked for over 4 years but the PSA started rising. The Zytiga knocked it back down to the lowest PSA ever. I can only hope that I get a similar response to you. Let's hope you break a record and get another 10 years at least.

Todd1963 profile image
Todd1963 in reply to MarkBC

your initial response to androgen deprivation therapy is similar to my own. Haven’t gone for years on standard androgen deprivation I feel confident in saying you will probably have long-term results with Zytiga as well. Before I started Zytiga I insisted on receiving Provenge first. That would be the only difference. I believe in Provenge even though many oncologist and urologist do not share my enthusiasm. The science behind it is sound and I believe it has been a contributing factor in my continued success. I would like to state out loud however that I believe Faith has been the biggest contributing factor in my success.

SeosamhM profile image
SeosamhM

Just, well....WOW. In my research, I have never read or heard of an experience like yours. I'll be interested to see what responses you get. In the meantime... keep on trailblazing!

Todd1963 profile image
Todd1963

I am curious as well. I am not Amazing, just a very blessed man. I just have never heard of anyone being on this medication longer than I. Perhaps it is due to first receiving Provenge. IDK.

6357axbz profile image
6357axbz

congrats

noahware profile image
noahware

Wow, that's awesome. Your example needs to be brought up every time a newbie comes here with a doc telling him that mets mean he'll be dead in a few years.

I assume you do some working out to maintain muscle. How is your bone health after so long on ADT, and do you do anything to maintain it?

Todd1963 profile image
Todd1963

potato chips and baked goods mostly. Haha no…. I stay pretty active. My knees are shot so not as active as I wished. Had to quit wakeboarding last year but we bought an old Harley and ride it to explore places we have never been. We just like to live our life for all it’s worth.

wolverine11 profile image
wolverine11 in reply to Todd1963

Congratulations very impressive.... Are you taking full dosage 1000 mg daily of zytiga. Saw your history high volume stage 4 Wow.. What is or was your gleason score at DX? If I did half as good as you would be glad. I'm almost 2 years since DX

Todd1963 profile image
Todd1963 in reply to wolverine11

I am G-7. I am taking the full dose. I was hoping to find other guys who have been on the drug longer than I have.

wolverine11 profile image
wolverine11 in reply to Todd1963

Thanks for your reply...Gleason 3+4 or 4+3 ? live long & prosper

Tall_Allen profile image
Tall_Allen

As always, you are my hero. Don't knock the third eye -- Hindus and Buddhists believe the third eye allows for divine consciousness.

middlejoel profile image
middlejoel in reply to Tall_Allen

Yes amazing Todd, , I am blind in one eye and I am not looking for divine consciousness as TA comments. However, since I am blind in one eye, and I have Macular Deneration in the other, I could use that third eye.

swwags profile image
swwags

I have no input to your question but thought I'd add CONGRATS! I wish for you another 20 years or more.

tango65 profile image
tango65

Congratulations. As long as it takes to have radiographic progression of the cancer which I hope it will never happen.

Best of luck!!

Schwah profile image
Schwah

Very impressive. Congratulations! so if Zytega is working you are hormone sensitive Yet your profile days you used Provenge which is not approved for hormone sensitive men. Did you do it off label and out of pocket, or were you able to get your insurance company to pay?

Ms hash.

Todd1963 profile image
Todd1963 in reply to Schwah

Lupron and Casadex stopped working in 2011. Received Provenge in 2012. Started Zytiga 2013. Not hormone sensitive.

dhccpa profile image
dhccpa in reply to Todd1963

Did your insurance cover Provenge? Or Medicare? Thanks.

V10fanatic profile image
V10fanatic in reply to Schwah

Anthem BC/BS covered my Provenge even though I was still hormone sensitive- FWIW

Nusch profile image
Nusch

Congratulate and all the very best for the next 10 years - so impressive!

Irun profile image
Irun

I have been on it for 7 years , the FDA approved it in 2011 so any longer than 11 years means must have been part of a trial , no idea now many years that may have been ? Max 5 so on that basis is there anyone here who was on the pre FDA approved trial ?

Chrisbaird profile image
Chrisbaird

well done ..great achievement Todd Hoping I can do same period I’m on 500gm Non detectable for 18 months !!

Lavender22 profile image
Lavender22

This is good news, which I will share will my husband who is nearly a year in on Zytiga. Thanks for your post.

Omairtde profile image
Omairtde

Congratulations, long may you benefit from it.

Farn profile image
Farn

There is a gentleman in the UK who has been on it for over 10 years his name is Alfred Samuels and he is an ambassador for a cancer charity

Doggedness profile image
Doggedness

I loved reading this. My husband has been on it for 3.5 years. I heard (somewhere) that some of the people who were in the original trial are still responding well to Zytiga 15 years later.

Marley2022 profile image
Marley2022

delighted for you. I’m new to this was found to have a PSA of 612 a year ago….I’m 49 and stage 3 in a few lymph nodes but not in the bones. I was put straight onto Zytiga and as of 2 months ago my psa is undetectable….I read this and it just puts me in a good mood👍🏻

Cateydid profile image
Cateydid

that’s incredible! My Joe was on for about 3 years before his PSA started doubling again.

He’s finished 8 of 10 rounds of chemo for the second time.

I did just read that switching from prednisone to dexamethasone may be a way for him to go back in Zytiga. Perhaps Pluvicto or something else might be better. We’ll see what the new year brings!

Happy Thanksgiving, All.

dougnola profile image
dougnola

Hi Todd. That’s amazing! And encouraging! I’ve been on Zytiga non stop for almost six years with an undetectable psa since 2018. People like you give me hope! ✌️ DougNOLA

Univs profile image
Univs

Well done! A true inspiration!

NOCanceros profile image
NOCanceros

Hi

I am taking Bicalutamide 150mg ,according to my German Oncology 2017 to take this medicine and later he decided for me to make intermittent every 3 months, specially when my PSA increase to 1.1-1.2 then i have to start again with this medicine. i took it from 2017 and it works up to now, i am doing PSA test every month to make control , at last i hope the best for every 1 here- Good luck for us all.

Yingsang profile image
Yingsang in reply to NOCanceros

I am curious, can you detail your exact usage, since 2017? Were you a daily user, and then went intermittent? And how long have you been doing this protocol. Most Bicalutamide users are not long term, as the cancer we are told does a work-around. And what was your PSA ranges? What causes you to return to the drug after an intermittent stopping?

pakb profile image
pakb

My husband has been on it for 5 years- had 6 rounds chemo + adt initially and now zytiga (plus prednisone) + adt ever since chemo ended. PSA just got to 1 this month. A slow drop from 677 5 years ago. Scans look good as well. He also still surfs, works out and is active. Hoping for your longevity using Zytiga!

leo2634 profile image
leo2634

Five years for me also on Eligard injection every six months. Psa 0.1 since start. Provenge infusions 2018 .Never give up Never surrender. Leo

Carlosbach profile image
Carlosbach in reply to leo2634

By Grabthar's Hammer, by the Sons of Warvan, I like your style.

Congrats on the 5 years

London441 profile image
London441

That is a long time! Some wonder how, but the explanation is simple. If your profile picture is accurate, you are a guitar player. You also refer to your faith.

Studies have shown unequivocally that the combination of standard drug therapy with daily practice of both faith and the guitar produces maximum benefit.

Presumably the recent addition of the Harley Davidson can only enhance it.

Lulu700 profile image
Lulu700

Hello Sir! So you got pc at 42? I’m sorry , that is too young . . A real game changer it is? You are in a sense a miracle . 10 yrs is something very good on this cite .. I did Tak -700 ( similar to zytiga ) for 7 years myself . I stopped it 6 months ago . I did Lupron 2 yrs then an orchiectomy in 2015 . I started at 53 now im 61 . I’m following in your foots steps . Keep rolling and and playing that guitar ! Bravo to life!

dougnola profile image
dougnola in reply to Lulu700

why did you stop Zytiga, Lulu? I’m still rocking and rolling (and jazzing) since your visit to New Orleans pre Covid with my Zytiga, prednisone, eligard and broccoli sprout combo. I’m always curious about the motivation to stop the Z.

Lulu700 profile image
Lulu700 in reply to dougnola

Hey Doug! Not zytiga but the test drug Tak-700 worked similar stopping adrenal T . Iwas scanned yearly over seven yrs still clear . I had weened myself down to stopping it over the prior two years . No mets no Psa ,I just didn’t understand why the adrenal would if ever start to produce T again ? If not? Why was I taking it? Mainly for all of the free testing . Are yearly nuclear scans with no pc present even good for us? I doubt it . With no boys aboard I have 3 T… we drove to S. Az 400 miles rd trip tri monthly for four years . That got old too. Happy holidays! ✌️

Todd1963 profile image
Todd1963 in reply to Lulu700

I was diagnosed stage 4 at the age of 42 not 48

Lulu700 profile image
Lulu700 in reply to Todd1963

ouch! I am sorry .I thought 48 was young?

MateoBeach profile image
MateoBeach

Inspiring run, Todd. You are giving more hope to many. Agree with you about Provenge. Under appreciated and under utilized. Ride that Harley with extreme caution and joy. Paul

gsun profile image
gsun

You give me inspiration! Been on ADT + Zytiga for 4.5 years. PSA is .023 last time. Up from <.008 but still low. You are on Zytiga alone because Lupron stopped working? I am going to talk to my MO in a couple months about a vacation. The drugs are making my life not as enjoyable as I would like. My MO did say since I rfepsond so well to it, I could get another ten years out of it. Keep us posted on your progress.

MyKis profile image
MyKis

Hi Todd, grt to hear things are going well, Im basically on the same treatment protocol but its only been 7 yrs for me, with great results, what was your Gleason score at diagnosis ? mine was 9/10.

Cmdrdata profile image
Cmdrdata

I’ve been on 1000mg of Z + 5mg prednisone since 2018 (no Lupron). PSA was <0.01 and T <50mg, however, in the last 12 months PSA began to rise, currently 0.59. No other new symptoms apart from heat flashes, muscle somewhat weaker muscle strength, and systolic in the 150s (diastolic is normal). BP medicine (lisinopril+amlodipine) did not lower BP.

old64horn profile image
old64horn

that is amazing Todd. Your story gives us hope. By the way, did you used to post on Healingwell website?

Todd1963 profile image
Todd1963 in reply to old64horn

I did and still do sometimes. Healing well has changed.

old64horn profile image
old64horn in reply to Todd1963

I agree, I remember when you were going thru Provenge.

Vitaminlover profile image
Vitaminlover

That is remarkable and wishing you continued success. But according to MSK, the standard treatment is 18 mths. Surprised that with undetectable PSA you would be prescribed Zytiga and health insurance would agree to pay.

garyjp9 profile image
garyjp9

Congratulations, Todd ! How much prednisone do you take, and does that cause you any side effects?

Todd1963 profile image
Todd1963 in reply to garyjp9

5mg 2xdaily. No side effects

gamemaster34 profile image
gamemaster34

Todd I took Zytiga for 2 years with undetectable PSA. I have been off of Zytiga for 18 months. Still undetectable. Praise the Lord!

WoodChuckHill profile image
WoodChuckHill in reply to gamemaster34

Very happy for you. Why did your oncologist take you off of Zytiga? My oncologist will be taking me off of Zytiga after two years of usage - to see what happens. Is this common?

Todd1963 profile image
Todd1963 in reply to WoodChuckHill

just a little break from treatment is all

dmt1121 profile image
dmt1121

You are an inspiration for those of us who have been on it for far less years! Growing a third eye will help you with the whole predictions issue that you are struggling with. Lol.

Stay well....

Yingsang profile image
Yingsang

Thank you, for your response.

dgwrsr profile image
dgwrsr

Todd, Excellent and congrats almost 10 years on med. I had prostate removed in Dec 2014. Gleason 6. After radiation started Lupron and Zytiga. My oncologist wanted me to have the new PSMA test but had to wait until PSA>1.0. They just completed PSMA scan and it showed 4 spots that they said would not have shown up on MRI. I will have high intensity radiation to destroy those areas as well as go back onto Lupron and Zytiga.

All best!!

Bigdav777

dhccpa profile image
dhccpa

That's very encouraging!

Union98 profile image
Union98

I'm always so happy to see your updates - Keith was diagnosed in 2016 and your amazing story gave me faith (he's a G7 as well). He recently stopped Zytiga after almost 5 years so is taking his first Zytiga break. No problem with adrenals and after 4 months PSA has remained undetectable so we're grateful. He also did Provenge year 3 of diagnosis. Stay well and Happy Holidays!

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

Todd my Brother.

In the words of Jackson Browne's song Fountain of Sorrow, (let's just change that to Fountain of Joy!)

"I'm just one or two years and a couple of changes behind you"

Its been 8 years and 4 months for me . Zytiga sent my PSA down to undetectable after 3 months, and I have been a zero (<0.06) for 8 years now. Dx as Stage 4 in 2012, with two 4+3 grade 7s at my biopsy. Keep the faith all!!

Just think, if we had no insurance and had to pay the outrageous full retail for Zytiga and Prednisone, we would be One million dollar men!! Anyway Todd, you are one in a Million Brother!

Wings aka Dan in cool So Cal

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