.5, .8, 1.0, 1.3 - Stay the Course? - Advanced Prostate...

Advanced Prostate Cancer

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.5, .8, 1.0, 1.3 - Stay the Course?

ewhite999 profile image
32 Replies

Those are my last four months of PSA scores. My MO says stay the course, anyone disagree?

I'm taking Lupron and Xgeva quarterly. Zytiga and Prednisone daily. Already did Chemo and Provenge. Original four bone mets when first diagnosed 2.5 years ago are not growing and have diminished with treatment. No pain.

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ewhite999 profile image
ewhite999
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32 Replies
Drcrunch profile image
Drcrunch

Stay with it until scans show progression or you have pain. Next step is xtandi.

charlesmeyers1964 profile image
charlesmeyers1964 in reply toDrcrunch

that xtandi for me was short lived

cesanon profile image
cesanon

What alternatives are you considering?

Looks like you have a 2 month doubling rate. What prompted the start of this round of therapy if you were only 0.5 when you started it?

ewhite999 profile image
ewhite999 in reply tocesanon

I was at 20 when I started Zytiga

charlesmeyers1964 profile image
charlesmeyers1964 in reply toewhite999

u know there is az life of these drugs when they don't work anymore. me personally as long as my psa stayed around 6 or 7 i didn't push those meds i didn't want to run out of their effectiveness and fall back to 0

Shooter1 profile image
Shooter1

Might try dumping Prednisone and adding Dexamthasone instead. Little change, but sometimes changing you steroid gives a much better result. Really helped with side effects from Taxotere for me.

Check posts here and find more info. Often have to keep you Dr's educated to new treatments.

Hazard profile image
Hazard

Hmm this is starting to look aggressive and you should look beyond standard of care. Have you had any DNA testing? There is no point continuing things such as zytiga/ xtandi if you have, for instance, BRCA mutation. Other mutations may indicate use of AKT inhibitors or check point inhibitors. You should be looking at clinical trials to get some of these new drugs.

My PSADT is 1 month and PCa is resistant to ADT and chemo. Doctors couldn't explain why it was so aggresive. Until they did somatic DNA test and found that BRCA2 gene was missing. Treatment plan may have been different if they knew this up front.... I have just started PARP inhibitors but only 4 weeks in, will be a few more weeks before we can guage response.

ewhite999 profile image
ewhite999 in reply toHazard

I was told my bone mets were too small to provide reliable DNA results. Does that make sense?

charlesmeyers1964 profile image
charlesmeyers1964 in reply toewhite999

i have 1 met in a rib and they won't radiated it not a wt bearing bone from a radiation dr.

charlie

Break60 profile image
Break60 in reply tocharlesmeyers1964

I just had sbrt to a met in rib and in scapula; not weight bearing...,

podsart profile image
podsart in reply toewhite999

You may want to consider a liquid blood biopsy like Guardant360 or foundation 1

ewhite999 profile image
ewhite999

I was told my bone mets were too small to provide a reliable sample for DNA testing. Does that make sense?

Hazard profile image
Hazard in reply toewhite999

I am lucky in that my somatic DNA test was based on circulating tumour cells extracted from a blood sample. Since its a clinical trial, the trial sponsor (Jansen) paid for blood to be sent to Belgium for analysis. However I do understand that getting DNA from bone mets is a tricky business.

Hazard profile image
Hazard in reply toewhite999

Here are details of trial I am on. Maybe you can find a similar one in USA.

clinicaltrials.gov/ct2/show...

Rottney profile image
Rottney

Sounds a lot like me. Diagnosed nearly 3 years ago. Began ADT treatment with Xgeva and Casodex. PSA dropped to low of .05 but almost immediately began going back up. Doubling rate ~3 months. .11, .18, .40 are most recent. Based on the trend, switched from Casodex to Xtandi and will see at next check if it goes back down. Originally had several small bone mets and one lymph node met. All are undetected now. Not taking any steroid. Have not had any DNA testing. PSA at diagnosis was 81 and Gleason 7. Any thoughts out there for me?

charlesmeyers1964 profile image
charlesmeyers1964 in reply toRottney

your doubling is funny and u ask me why. will first when the docs tell me about doubling they are talking about numbers over the norm. that means 4 so if u started with 4,8,12 then they go aggressive, but yours are .11,.18. and .40 me i would relax have a drink and do a psa every 6 months and see what happens. remember the meds u take will stop working after a couple of years maybe get luckier then that so for me i do them conservatively. been cancer 10 years and even though my psa is 38 i'm far from dieing at 72

charlie

Patrick-Turner profile image
Patrick-Turner

Seems like your Psa has a doubling time of about 3 months, and your docs should be concerned.

The Xgeva can give side effect of jaw necrosis, so don't have too much.

I've had ADT for many years, but it began to fail, Psa went up to about 6 so I added Zytiga, Psa fell to nadir of 2, then after 8 months it was back to 6. I began chemo at Psa 12, and Psa went to 45 in 12 weeks, so not I am having Lu177.

The second is on 4 Jan 2019, and it is too early to say if that is killing Pca cells.

Patrick Turner.

Break60 profile image
Break60 in reply toPatrick-Turner

Jaw necrosis is very rare. Don’t let that scare you away from xgeva!

Patrick-Turner profile image
Patrick-Turner in reply toBreak60

I had 3 or 4 bi-monthly Xgeva injects and I got a jaw ache which was beginning of jaw necrosis; A dentist found a hole in skin inside jaw and could probe to bare bone at the bottom of hole. An oral surgeon confirmed it, I quit taking more Xgeva. My onco and registra both were familiar with "Deno jaw"because its common in men who have has ADT for a few years, and there are many men on ADT.

But for people not on ADT, prevalence is low.

But I read a German study about 8 years ago which said that use of any bone drugs to counter low bone density on ADT does not make it less likely to get bone mets or that bone mets are slowed down. Sometimes drug makers over state the benefits of bone drugs, and perhaps the best antidote to low bone density is walking a mile every single day.

Healthy bones are prone to getting breakable if a man does not exercise, and the effect is worse with ADT. But another study here in Oz found that if men jumped over a certain number of obstacles in a walk, the impactive effects of the jumps trigger bone strengthening. The study did not say how many jumps, but the video showed 80yo guys jumping over 150mm hoops on a floor, not just stepping over them.

Ya loose it if ya don't use it......

Patrick Turner.

Break60 profile image
Break60 in reply toPatrick-Turner

I agree that exercise strengthens bones . See the link I posted on the subject. It did mention that jumping is good for strengthening bones. I use weights and machines but I suppose I should start jumping as well!

I just had a bone density scan which showed my bones are normal and I switched xgeva shots to every three months.

Bob

CYR7 profile image
CYR7

It was more or less the same as my PSA reading a couple of months ago, very quick doubling time. I took a Ga-68 PSMA scan and one spot lit up on my lumbar. Better ascertain what’s happening before deciding on tweaking medication and/or the next course of action. The PSMA scan will at least tell you where and how many.

larry_dammit profile image
larry_dammit

Scary isn’t it, doctor doesn’t seem concerned I guess I would believe in him for a couple of months, can’t remember what the norm is on a PSA now after chemo. My doctor has me on monthly Elegard and Xgeva shots. I think that may be a key .

joancarles profile image
joancarles

I'm having a similar progression in the last 4 months: 0.17, 0.19, 0.26, 0.45 and 0.73. My doctor says that if there is no evidence of progression we do not change treatment.

My current treatment is Zytiga

Break60 profile image
Break60

I’ve waited until Psa reached near 2.0 to get axumin or PSMA scans when they’re most accurate. My mets have been to bone which I hit with sbrt . Have you thought about using sbrt?

ewhite999 profile image
ewhite999 in reply toBreak60

I’ll mention to my MO and the new guy I’m seeing next week. He has said no to radiation in the past using “the horse is already out of the barn” logic.

Break60 profile image
Break60 in reply toewhite999

“Horses out of the barn” ( distant mets) can still be shot with targeted SBRT if you have only a few ( termed oligomets) otherwise just systemic therapies are necessary. It’s controversial but it works for those if us with low volume. I also use ADT but some just use targeted RT.

Also after RP I had poor pathology indicating the horses had left. I still had SRT to prostate bed and no mets have ever appeared in that area nor in my pelvic lymph nodes which I hit with RT . So herds of horses can be killed as well as individual horses!!

ewhite999 profile image
ewhite999 in reply toBreak60

Well said. I’ll bring it up again with both MO’s.

Break60 profile image
Break60 in reply toewhite999

You need to speak to an RO not just your MOs

abmicro profile image
abmicro

I am a fan of early treatments rather than later. With my psa doubling time of 2 months and Gleason 8, I did various aggressive of treatments and "off label" meds to keep my cancer under control for 12 years (with 2 cancer free remissions) following the advice of Dr Charles E Meyers who is now retired. After that, I made the mistake to follow "standard care" and "standard advice" and let my cancer run amuck until my PSA went above 18. Cancer is now in more bones and more difficult to treat. Pelvic pain knocked me off the dance floor and I now walk with a cane.

Take my experience as a lesson learned.

ewhite999 profile image
ewhite999 in reply toabmicro

Thanks for the advice. Very sound and logical. I am now armed and ready for my next visit.

grahaminator63 profile image
grahaminator63

On my PSA test results it states: Post radical prostatectomy results should be <0.1 ng/mL. Post therapy of other types of treatment should be <1.0 ng/mL.

zenbee13 profile image
zenbee13

Hey Brother,

I am G 9, and I've no mets yet. Diagnosed in 2009. I have been on Zytiga, prednasone and Lupron Since March 2016 and just over the last 3 months went from 0.2, to 0.98, to 1.86. I will be starting Xtandi as soon as it clears insurance. My MO, with my very aggressive version, (was on just Lupron from 2012 to March 2016, but in 3 months it jumped from 0.1 to 74.0) we are making the change now.

Like I said earlier I don't have mets, yet we are moving to the next in line med. Ultimately this is up to you and your MO. Just keep looking and listening here, and to your Doc. You will make the right choice for you.

Peace,

Bees

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