I think ZYTIGA has stopped working

[thevvy]

Hi everyone

After some suggestions.

I started ZYTIGA with Triptorelin at the beginning of April, 2018, with stage 4 and Mets in my Pelvis, spine, ribs, and both collar bones, as well as some lymph involvement.

My PSA dropped to 0.05 in October 2018 and stayed at that level until July 2019, when it went up to 0.06, and then at each monthly blood test it has risen by 0.01. Last blood test was 0.09.

Bone scan in October 2018 was clear.

My Testosterone has remained steady at 0.1 with my sex hormone binding globulin usually between 30 and 35. Calculated Free testosterone is 0.0.

I have an appointment with my Med Onc on 19th November.

I'm guessing ZYTIGA is on its last legs. Or are there some Neuroendocrine Tumors popping up?

Where can I go from here? Chemo? Keytruda? Apalutimide?

Any suggestions would be welcome.

Phone call to Med Onc suggested waiting until I am at 0.2 and then have a Ga-68 PSMA PET scan to pinpoint any areas of concern.

A visit to the Onc is about 450 miles each way, not that its an issue, we turn it into a mini adventure in our caravan.

Cheers Cobbers

Thevvy

[Magnus1964]

What other treatments have you been on, i.e. xtandi, casodex etc.?

[thevvy in reply to Magnus1964]

Haven't been on Xtandi, but was on Casodex for about a month, then come off of that to go on Zytiga. My journey started in early 2013 with original diagnosis, 40 Targeted Beam Radiation treatments, then 2 1/2 years on Zoladex. Urologist told me I was cured with PSA at .08. Kept telling me that, as my PSA rose to 4 that it was normal as I still had a prostate. Got to 6 and he still wouldn't organise scans. Got to 8 and I sacked him and got a new urologist. PSA was 10 by that time and I was stage 4 and counting. (made a voodoo doll of the prick and stuck needles in his nuts!! Probably didn't achieve much, but I felt much better)

[Magnus1964 in reply to thevvy]

You are 3rd person on this list whose doctor had them casodex for one month then stopped. That's not even enough time to get a good reading on whether it's working or not.

That aside, your PSA is still low so don't panic. Glad to hear you fired that quack. Ride zytiga to the end there are other drugs in the wings.

[thevvy in reply to Magnus1964]

Thanks Magnus ... Yeah, I'm glad I fired that clown too!! IK came off casodex only because I started Zytiga, and evidently the two drugs don't play well together ... gives the kidneys a hammering so I was told

[Magnus1964 in reply to thevvy]

What I meant was one month on casodex does nothing. It's not long enough to say it works. Why switch after one month.

[thevvy in reply to Magnus1964]

G'day Magnus

In the 4 or 6 weeks I was on Triptorelin and Casodex, my psa dropped from 10 to 2.4. My MO wanted me on ZYTIGA ASAP, because of my mets, which meant the Casodex had to stop.

[Magnus1964 in reply to thevvy]

I guess it's just me. If something is working stay the course.

[Hidden in reply to thevvy]

Voodoo?? Haha ha

[LearnAll]

IMO seems like you are jumping the gun.....Zytiga still might have juice left in it. Too early to say Zytiga has stopped working.

I will accept your MOs advice to wait until PSA crosses 0,2

[thevvy in reply to LearnAll]

Thanks cobber. Not stressing yet, just trying to get some ideas to run past my MO. He is an awesome man. Keeps my Angel & I fully involved in each step, and is open to questions and suggestions. Doesn't just write them off, but takes the time to explain why they are a good or bad idea. Love him!!

[Hidden in reply to thevvy]

You’re lucky to have a dr like that now ..

[Hidden]

I would ride Zytiga until my psa reached at least 2.0. Then start chewing your nails. Relax.

[thevvy in reply to Hidden]

HaHa ... yeah goodonya cobber. My Angel keeps tellin' me if I get any more relaxed I'd be asleep. I am happy where I'm at. I feel good and managing to do more than perhaps I should. Building a fire suppression system on the roof of our house at the moment ( we live in a bushfire prone area. Our town was wiped from the map in 2005 and the vegetation regrowth is very dense again, so every one is on edge).

[Hidden in reply to thevvy]

Good luck with the fire suppression thevvy .....it’s a bad fire season here on our west coast also . We’ve been hauling dead trees and downed wood out at our new home on the edge of a dry juniper forest .. we’re working on a defendable space around our cabin . We had no real monsoon season so we are super dry .🔥

[thevvy in reply to Hidden]

I'll try to post some pics for you when it's up and running

[Hidden in reply to thevvy]

Thanks . I’d like to see it . 👍

[Fairwind]

450 miles ?? Where do you live ?? 2.0 before you abandon the Zytiga..Get everything you can out of it..

[thevvy in reply to Fairwind]

G'day Fairwind

Live in a little town called Wanilla, just north of Port Lincoln on the Eyre Peninsula in South Australia. MO ( Dr Hsiang Tan) is at the RAH in Adelaide. We live in God's own country here, and the trips to Adelaide just reinforce that all the more. It's NUTS over there!!

No plans to come off it yet, although I am still trying to get my head around why PSA would be rising. Was going to talk to MO about that in November. Last time I was there we talked about maybe trying Statins for a while to see if that made a difference. Interesting times!

[Cheerr]

Looks like you can get a lot more time with Zytiga. Definitely should wait.

When you say scans came in clear, do you mean they’re consistent or reduced compared to the scan at diagnosis ?

[thevvy in reply to Cheerr]

G'day Cheerr

Compared to the bone scans at diagnosis, the last lot were clear...... no obvious hot spots at all. The first one I was lit up like a Christmas tree.

[Tall_Allen]

Don't be so quick to pull the plug on Zytiga. Wait until your PSA rises to at least 2.0 and there is radiological evidence of activity. When that happens, try switching from prednisone to dexamethasone to give it some extra life.

After that, you may be a good candidate for docetaxel. Why do you suspect neuroendocrine ? It is very rare.

[thevvy in reply to Tall_Allen]

Hi Tall_Allen

I don't really suspect it, and hope like hell it never arrives, but it was something I had heard about and was just wondering. My MO and I talked about trying statins to try and prolong ZYTIGA.... he was a little sceptical but had read about them and was happy to let me have a try (my cholesterol is a little raised any way) Zytiga is kind to me ...apart from my upper body looking like a bit of a balloon I have no hot flushes anymore, my memory isn't too bad, but my stamina is way down. Too far out of town to go to the gym, but I am VERY active, working around home as well as helping my mate around his farm ... crutching, shearing, marking and fence repairs just for a start, and harvest is only just around the corner... My next appointment with my MO is in a few weeks, and we are going to talk about where to next ... a bit of strategic planning, so to speak, so I am looking for info and Ideas to discuss with him. He is awesome and fully involves my Angel and I in each step of the treatment taking time to explain the whys and wherefores and alternatives and the reason for his recommendations.

[Hidden]

Don’t fret thevvy .. Hang in there . Psa is still very low ..🙏

[thevvy in reply to Hidden]

Thanks LuLu ..... not stressing ... just looking for some ideas and opinions to take to the MO and maybe some idea as to why PSA is rising with 0 testosterone. Lifes good cobber. Hope you are traveling OK too.

[Bebby1]

Nice yo see someone from Oz

Albeit everybody on this site is awesome

Great advice here

Hood luck

PSAstill low

Hang In there

[thevvy in reply to Bebby1]

Hi Bebby. Thanks for that cobber. I'm OK, just looking for info.

[abmicro]

Read on the forums that an inflammation drug called indomethacin may squeeze a little more out of Zytiga. I want some of it but cant find a doctor who will prescribe indomethacin off label.

[thevvy in reply to abmicro]

G'day Abmicro ... yeah I read some stuff about that too, as well as statins. Hang in there cobber. All the best.

[j-o-h-n]

As long as you don't end up in Alice Springs by mistake, you're on the right track...

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 10/23/2019 12:19 PM DST

[RalphieJr64]

I’ve been on clinical trial for the last 15 months. My PSA got to an undetectable reading of 0.03 for the first few months. Has now crept up to 0.09 last tests. I have an very aggressive cancer like most of us. This will be a roller coaster for the rest of my life. Right now my MO said to not stress and I’m still considered undetectable. You are too. BTW I’ve been through Chemo, Casodex, Zytiga Prednisone and now this trial. You’re doing good. Don’t stress.

[thevvy]

Thanks Ralphie ... Yeah, I'm doing OK, not stressing at all, just looking for opinions and experiences, so I have something to talk to my MO about. in a few weeks.

[thevvy]

Thanks LuLu. I'm finishing a house I started to build in 2010. PCa has lengthened the process more than I thought it would. (I'm 70 so I am REALLY smart, and doing everything myself. Major stuff done, inside is finished ... just little stuff outside now.. b it here bit there, is coming together finally. Just a bit of rendering to do on the infill around the outside.)

[Hidden in reply to thevvy]

Good luck in the finishing of your home . Be nice when all is done . I’m 58 ,don’t feel too smart but if I make it to 70 I’ll be a dammed genius .. Let’s keep kickin this pc can down the road ... Good luck thevvy .🌵

[thevvy in reply to Hidden]

Thanks LuLu ... Gunna give that asshole disease a beating every chance I get ..... I have negotiated with the Boss my transfer to HQ. .... we've agreed on a three year probation ... Haha

[Hidden in reply to thevvy]

Sounds like good changes .. and a good boss .. probation is better than the stalag .. we are all on probation under pc ..

[Ausi]

G’day Makybe Diva,

I see my MO tomorrow and he may suggest Zytiga, I’ve just had my PET scan and there are a couple of spots, after PSA doubled to 6 following radiation back in May which dropped it from PSA of 15 to 3. I have seen my Radiation Oncologist and he’s said he can zap these spots (there in different places but on my pelvis as was previously). Glad to hear Zytiga isn’t too debilitating as I still want to play golf, caravaning etc. if I go on it, but I’m opting for Radiation again. I don’t know anything about Zytiga but am surprised you would think it has failed even at PSA of 2.

Good On ya Thevvy

Kanga

[thevvy]

G'Day Ausi .... you've done your homework I see! Life size bronze statue on the foreshore. Everyone is different, but for me the worst was the hot flushes when I first started, but they have almost stopped now, maybe 1 or 2 a week, usually when I first go to bed. You will gain some upper body weight and some man boobs in all possibility, but a small price to pay. I have a lack of stamina, but after being on some form of treatment or another since 2013, I guess that's to be expected.

We are planning a final hoorah in mid 2020 before we sell our 4wd and caravan and heading up to Cairns to visit a mate, then across the top and down to Perth to visit another mate then home across the paddock via Esperance.

[tallguy2 in reply to thevvy]

How many Aussies, let alone Yanks like me, have driven the Nullarbor? From West of Adelaide to Perth on the Eyre Hwy? Count me as one of the few to drive the 1,600 km and live to tell the tale. Roadhouses and all. An adventure of a lifetime.

Can't say enough about the friendliness of the Aussies. If US healthcare continues to be challenging I'm headed your way.

Enjoy that trip in 2020, mate. My wife and I have perhaps two more visits to the land down under planned (we've been there 5 times). One is the south to north route from the Eyre Hwy to Darwin. Probably by car but the train is an option. The other is the drive from Perth to Darwin.

[thevvy in reply to tallguy2]

I used to be an Oversize Load escort, clocked up 3,000,000kms in 6 years. Been across "the paddock" more times than I care to remember. Bought a new Pilot vehicle in 2007, and the first trip in that was a complete circumnavigation of Aus .... not once but 4 times in 3 months. Clocked up over 110,000kms. It's a big country, and LOTS to see.

[tallguy2 in reply to thevvy]

Amen, brother, and I plan to see as much of your beautiful country as I can!

[thevvy in reply to tallguy2]

Sorry to tease .... but my ZYTIGA costs me $6-50 a month too! The same for keytruda as well .... just not for PCa. So just not great scenery, but cheap meds too! Guess that's the benefit for paying 25% tax for 56 years.

[Ausi]

Thanks Thevvy,

Yeah, I’ve been on Zoladex, another ADT, for about 6 years now and had similar symptoms but fairly mild. (I think) Zoladex stops the body producing Testosterone while Zytiga stops the tumours producing testosterone. Though side effects lasted only a couple of years.

This year’s been a bit of a bummer with radiation in Jan and again in May, 32 days of each lot. We just haven’t had the time to get the old van out and go bush or head down your way, even just to pay respects to the greatest Melb Cup winner and get a pic with him. With the Cup only a week away it’s a pity another Aussie probably won’t burst out of the pack of imported nags like the old Diva did not that long ago. I backed him on his 3rd win, kept the tote ticket hoping it might be worth a bit!

I saw the movie “Ride like a Girl”. It was good. For our foreign readers it’s about Michelle Payne, the first female jockey to win the cup on a 100 to one shot. Nup, I didn’t have even have a brass razoo on her, wish I did.

[thevvy in reply to Ausi]

You'll be good cobber. If ever you get down here, give us a yell on here and we will talk. I live about 35 Kms north & west of Port Lincoln in a little town called Wanilla. It was wiped out in the 2005 bush fires, but has bounced back remarkably. Neat spot to live!

[Ausi]

Thanks Thevvy, good luck with it all

[larry_dammit]

Dads doctor had him on prednisone when he was on zytiga. Worked for about a year but at 88 they stopped because of side effects.

I would have to talk to the oncologist about chemo if the trend continues. But a little early if the Mets are not growing. Fighting the monster 🙏🙏

[thevvy in reply to larry_dammit]

G'day Larry

Went to the Onc a few weeks ago, and he is happy where I am. I've been at 0.09 for 2 months now, but he tells me I am now castrate resistant and I can expect to change meds sometime in the future. Can't wait! Just got used to the side effects of this lot, now I'm gunna start all over again. You beauty!

Apart from that, all is good in my little world.

Have a great Christmas cobber and a better new year.

Keep fighting the bastard disease.

Cheers

Thevvy