Has xtandi failed? : I had my lupron... - Advanced Prostate...

Advanced Prostate Cancer

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Has xtandi failed?

Echotango51 profile image
20 Replies

I had my lupron injection Tuesday and PSA checked. PSA 0.09, three months ago PSA was 0.06. I asked my doctor if xtandi has failed, he told me not necessarily. He told me once your PSA reached its lowest point it fluctuates up and down until it stabilized. I will have PSA checked again in 6 weeks to see if it stabilizes. Has anyone had this happen and did PSA stabilize. I have been on xtandi for 16 months.

ET

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Echotango51 profile image
Echotango51
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20 Replies
Magnus1964 profile image
Magnus1964

That is an insignificant move in your PSA. You will find your PSA moving all around due do exercise, pressure on your prostate, etc.

in reply toMagnus1964

Thats why my MO doesnt allow ultra sensitive PSA tests. Too many calls about movement under 0.1

OP has no prostate.

Echotango51 profile image
Echotango51 in reply to

Thank you

Echotango51 profile image
Echotango51 in reply toMagnus1964

I don’t have a prostate, thank you for replying.

Tall_Allen profile image
Tall_Allen

There is no change in treatment called for until PSA reaches 2.0.

Echotango51 profile image
Echotango51 in reply toTall_Allen

Thank you TA

Originalsnds profile image
Originalsnds in reply toTall_Allen

Question, Been in the fight since 2016, Stage 4 prostate Cancer spread to seminal Vesicles and bones. Had 3 series of radiation . 1st on prostate 45, 2nd a few years later on left Hip Illiac. a spread hit hard and into bone marrow., the last a few months ago had a spread of cancer to S-2 Sacrum. 2 weeks of daily radiation. been on Elligard and Zytiga, done a propel clinical trial Finished 8 months ago. Original Psa was 28 Gleason 9 with 90 and 100 percent cancer in 12 biopsies pieces of prostate, Had a first PSMA scan done a couple months prior to the last radiation treatments to Sacrum S-2 . PSA was 4.43 before, and after radiation a month later PSA only dropped .75 to 3.78 Concerned.

I still have small cancer detection at T-12 spine, right Rib area, and very possible recurrence on right side of prostate. Ther is Tracer showing there. Im very concerned.

Still on Zytiga, Elligard. Exgeva injections nt every time needed as calcium not high enough. Taking supplements for calcium. not always helping

Just trying to get another view as to what could be done so this does not go really bad. these 4 areas of cancer Mets are new. not the original cancer when I started.

Never had chemo don't know if it is a help at this time. really concerned about the new cancer at prostate as cant re radiate area Im told

Can you help me with some ideas to get better. Thanks Barry

Tall_Allen profile image
Tall_Allen in reply toOriginalsnds

IMO it's time for chemo. Perhaps combine with Xofigo and Provenge.

If you can't get serum calcium high enough, you may need more Vitamin D too.

Echotango51 profile image
Echotango51 in reply toTall_Allen

I talked to my MO at MUSC, Hollings Cancer Center, Friday. He told me to let him know in 6 weeks my PSA number is at that time. He told me when my PSA reaches 1.0 he will do a PSMA scan and we will talk about treatments then. I know about Provenge, what I’ve read about it, doesn’t work that good. I really don’t know much about Xofigo. I will read up on it. When you go on chem, do you still take lupron and xtandi? I will talk to my MO about this in 6 weeks if my PSA doesn’t stabilize. Thanks for the info.

ET

Tall_Allen profile image
Tall_Allen in reply toEchotango51

"I know about Provenge, what I’ve read about it, doesn’t work that good." A common misconception. Show me why you draw that conclusion.

"When you go on chem, do you still take lupron and xtandi?" Recent evidence is that it may extend the usefulness of Xtandi. You will always take Lupron.

prostatecancer.news/2022/10...

Xofigo with chemo has allowed a reduction in chemo dose.

prostatecancer.news/2021/02...

j-o-h-n profile image
j-o-h-n in reply toOriginalsnds

'Hang Tough and be positive. get out there and do things, enjoy life. Believe me.. THIS HELPS..'

OMG...... Where have I seen this inspirational post before? (BTW Hang Tougher)....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 10/22/2023 7:43 PM DST

Originalsnds profile image
Originalsnds in reply toj-o-h-n

John Thank you for the inspiration. I do get out as much as possible. Go to our Beach house as much as possible in summer. We get away often short 1 or 2 day trips. Many Medical visits though. Another round of radiation, and still s more new mets. Fought hard to control the first several mets since the beginning. Still on ADT plus hoping for another trial. Have pain pump implant and catheter in spinal column to help control pain. Been hospitalized several times . However through all these things I dont lay down and give up, Positive always. There are many more than me at worse issues. I always tell them to be positive and never give up. I am concerned where all this is going for me now as its 8 years the battle and not slowing down . Thank You Barry

robobob7777 profile image
robobob7777 in reply toTall_Allen

I went from 0.01 to 0.03 in the past 3 months, I was concerned based on doubling in 2 months as being a marker for spreading. My doctor said don't worry until you hit 2.0. So you and my doc think the same.👍.

I do have a question Allen, DX 15 months ago, ST4/ GL9 /3 or 4 spreads. Seminal/Pelvis 11mm. 3rd rib bony uptake and the same for upper arm(femur ?) and possibly another. They call it st4,incurable because of distant bone met. My doctors will not do radiation or chemo, they said I was too far gone. Life expectancy 1-4.5 years. Do you agree?

Tall_Allen profile image
Tall_Allen in reply torobobob7777

Whether or not there is any benefit to radiation of the prostate (called "debulking") depends on the number of distant metastases. If there are 3 or less on a bone scan/CT, there may be a benefit.

prostatecancer.news/2018/09...

SOC fornewly diagnosed metastatic men is triplet therapy now (chemo+ADT+abiraterone/darolutamide). IDK when you were diagnosed, but it is too late for triplet therapy now.

Fiddler2004 profile image
Fiddler2004

Good Morning, yes, I've been on Xtandi (1/2 dose) coming up on 4 years and when it was that low (.06) it used to bounce around quite a bit until a year ago, now on a slow and steady rise from .2 to .7. Still below 1 and I feel it is still effective at controlling other symptoms such certain pain and a couple of soft tissue metastasis (my opinion). Sounds like you're in a good place at the moment. 🙏

Echotango51 profile image
Echotango51 in reply toFiddler2004

Thank you Fiddler2004.

lcfcpolo profile image
lcfcpolo

Hi. I understand the anxiety. I'm also on Xtandi. If you look at my profile you can see some fluctuations with my PSA. Hopefully yours will go low again.

Hawk56 profile image
Hawk56

As others have said, continue to enjoy life and actively monitoring your advanced PCa through labs, consults and when the clinical data indicates, imaging and treatment decisions.

When my new urologist switch from a standard PSA to USPSA (and a different lab to boot), first labs came back at .326 after a long run at "undetectable, <.1..." I was a you might expect, devastated. I asked him to repeat in two week, he did, it went down, repeated again, went down. As you can see from my attached clinical history, my USPSA had variations for which we did nothing until this year when it had three or more increases spaced 2-4 months apart and PSA between .5 to 1.0. We chose that range because it offered a significantly better chance of locating any recurrence than below .5. I think what you need to keep in mind is even when my POSA hit .7, it still would have been reported as undetectable under a standard PSA test.

The Plarify scan did locate a single PLN, we did SBRT and my radiologist placed me on Orgovyx. PSA dropped dramatically in first six weeks and undetectable by the three month point. I have labs next week and consults with my medical team. I expect my PSA will not be significantly different and we will stay the course until the next three months labs and consult.

You and your medical team should consider having decision criteria that you re comfortable with about your labs, how far apart, how many consecutive increases and what range of results will trigger further clinical tests such as imaging. Then, until that decision criteria is met, relax!

Kevin

Clinical History
Echotango51 profile image
Echotango51 in reply toHawk56

thanks for your info

j-o-h-n profile image
j-o-h-n

Shoot.......... remember when you were young and wanted to cop a feel from that girl you took to the movies?.............Took patience then and it does NOW... 2.0 is a long way off......

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 10/22/2023 7:49 PM DST

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