Diagnosed 2015 stage 4 extensive Mets.
Looking for feedback from anyone who has experienced PSA nearly doubling on Zytiga after one year.
Been on Zytiga with other drugs since... - Advanced Prostate...
Been on Zytiga with other drugs since 11-17. Last PSA check Mon. 10-01 showed PSA doubled . Still only 9. Any thoughts?
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DSEE
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They'll want to do a bone scan/CT to check for radiographic progression before trying something else.
Had scans in April which showed increase in Mets.
Will request more scans.
Did chemo in 2016- January.
It's not always the case, there's a chance that Xtandi can work after Zytiga fails, not for too long though, but I think Dan 59 here got at least 2 years on Xtandi after Zytiga failed and I don't think he got chemo in-between. In any case it's better to discuss with his MO and he can always have chemo to resensitize the cells and make these drugs effective again.
Perhaps the best thing to do if Zytiga with Prednisone fails is to switch to Zytiga with Dexamethasone.
Long term use of Dex-meth might cause some nasty problems of its own TA...They fed me a little of it just before, during and just after chemo, 3 days worth.. The purpose was to suppress the side-effects (allergic reactions) of the Docetaxel..It DID make me feel pretty good..
It's not long term, and it's just a low replacement dose of just 0.5mg/day. It has been shown to extend the time during which Zytiga is effective by almost a year (median).
Hi DSEE,
Seems like you might have got about 8 months of Psa suppression with Zytiga. I got only 8 months and this is close to the mean time gained by Zytiga as quoted by my dear oncologist, who also told me some patients he had got 2 years.
Some would get less than 8 months.
But while the ADT with say Lucrin injections continue, and Zyrtiga is added to shut down the adrenal gland production of minor amount of testosterone, the Pca isn't just sitting around doing nothing because it seems my bone mets grew well with Zytiga, because it can make its own version of testo ie, di-hydro-testosterone which is 20 times more powerful than what is made by your balls and adrenal gland. So when Psa rises after ADT fails and then fails again after Zyrtiga fails, its time for chemo, and if thay fails its time for Lu177, and then that fails its time for whatever they think might work, carboplatin chemo maybe Cabazitaxel, and after all that fails there is not a lot than can kill Pca that grows despite this cupboard full of drugs.
I have yet to find out, because I got referred to a doc who does Lu177 today, but Docetaxel seems to have failed, Psa went from 12 before chemo to 45 now, but rise for last 2 weeks has slowed, so possibly Docet is just beginning to work a bit,
and so I am having a 5th chemo shot next week, and maybe a sixth, and by then I will be getting the Lu177, and what happens after that is anyone's guess.
I just had full body nuclear CT scan, bone mets are increasing. But next week I also will have PsMa scan to make sure my bone mets are what is called PsMa avid, and if that is still the case, then the Lu177 is likely to work.
My serious fight is only just beginning; the last 9 years since diagnosis have given good QOL, and all side effects of treatments were tolerable, but chemo side effects are not good, and with Lu177, there are also side effects.
There is also Radiun223 available here my doc said.
I found the Zytiga made my heart rate uneven, and caused me to not be able to ride my bicycle say 50km typical ride if the day temperature was above 28C.
But I am 71, and fairly fit, and during last 12 years have cycled 135,000km, just to keep weight in check, and be fit, and because I just love cycling around, its the nearest thing to experiencing human powered flight, and it all just feels so good when I am out on bike. The cycling lessens all side effects of all treatments, and tends to keep your mind active and free of any tendency to depression.
Patrick Turner.
I found that potassium drops in my morning juice solved the problem with my irregular heart beat. Possibly low potassium, and that can cause heart beat issues.
Yes, I suspected low potassium, K, so I cooked up meals of english spinach and button mushrooms, but the problem never went fully away. K levels were fine in all blood tests.
3 of 10 listed side effects with Zytiga relate to heart bothers.
Sometimes I think I ws lucky to not just drop dead during last year's long 85km cycle rides in a Sunday group where I was faster than most others. The Zytiga side effects took months to begin, and when they did I had to quit the cycle group.
Patrick Turner.
R U getting the Lu177 in the States, outside of a clinical trial ? Where ?
I live in Canberra, Australia, and its 300km from Sydney where a clinic run by Dr Lenzo operates with Lu177.
Patrick Turner.
Hi DSEE,
Please see profile for complete treatment history. Got about 18 months from Zytiga, then high dose Ketoconozole, and 12 months on Xtandi all under care of Dr. Snuffy Myers. Much after that including rechallenge with Xtandi after last year's chemo. In between, a Guardant360 liquid biopsy identified ATM defect which permitted Lynparza, a PARP inhibitor, which worked for about 9
months.
Best wishes. Never Give In.
Mark, ATL
We're having slowly rising PSA after 9 months on Zytiga. Had Axmium (sp?) PET scan to find activity.....prostate tumor is dead, have only two active bone mets remaining. Pushing for focal radiation, may do Radium 223. Highly suggest requesting better PET scan to know exactly what you're dealing with. Regular PET will show healed mets as still....mets.
One has to ask what happens where Ra223 or Lu177 has killed bone mets. Well, its radiation, and all radiated tissue tends to become like dead wood, and there may be no repair to the chalk like substance that dead bone becomes after being attacked by Pca. So once you have bone mets, and if you kill the cancer, the bones have this weakness, so its important to get Lu177 or Ra223 BEFORE the bone mets have become likely to lead to micro-fractures or likely to lead to major fractures if you have a fall where you would not normally break a bone, or where you were just playing tennis, or going for a walk, or a cycle ride.
We need to avoid having weakened bones.
Patrick Turner.
We do, but with no current evidence of weakened bone, focal radiation looks better than waiting for progression. We're very fortunate to have no other active sites and can possibly take an ADT 'holiday'.
Fighting for smith-
I too have lots of bone Mets that were found 3 months ago on a standard bone scan. There is so little detail on the fuzzy pictures of my skeleton. my psa is now .27, down from 10.6 at dx 3 months ago. What scan do you think in my case shows bone Mets the best?
Have some of your bone Mets vanished? What else do you do besides Z,P and Lupron?
Thanks,
Bruce in Orlando
On Degerelix and Zytiga and a bone support. Not using Prednisone due to reflux issues. The bone Mets have healed, but not vanished, that's why they'll continue to show on a bone scan.
After your PSA is down so low for several months (congratulations! ) you may be able to get your Onc to request a more sensitive scan like we had. Frankly, ANY bone changed show up on the bone scan, so prior fractures and other damage show up and can cause false positives (take that with a grain of salt, as they are using your CT scan and other indicators to identify mets vs other damage).
I am in the same boat but no Mets and only from .64 to 1.34. I meet with my MO on the 9’th. I will also thanks to Thermo Fisher get genomic testing. I will let you know what the MO recommends
Peace,
Bees
I read of many people here switching drugs and getting extra time, I think Yost too is on Xtandi after Zytiga failed (and it's already more than 2 months), in any case anything works at this stage, he has nothing to lose.
My father's MO also plans to switch to Xtandi in future, so far Zytiga is working very well for my father and it's almost the 5th month already. The doctor predicts 1 year in my father's case but nobody knows for sure.
Well, welcome back "star kalan".
Kalan
(Urban dictionary)
A short guy with brown hair. Kalans can be very annoying, and crazy. A Kalan is very romantic and will do almost anything for the lucky girl that can call him her boyfriend. A Kalan is an amazing person and thinks of others before himself. He is smart, cute, funny, and will cheer you up when you are feeling sad. A Kalan can put a smile on your face on your worst days.
Good Luck and Good Health.
j-o-h-n Thursday 10/04/2018 4:53 PM EDT
A rising PSA in itself is not an indicator of failure. As Tall Allen indicated scans would need to confirm progression. I talked 2 hours with an MO today who specializes in prostate/urology and he said he has had good results recently by adding xtandi to the existing zytiga/predesone protocol or vice versa. Two different mechanisms of action being better than one.
He also considers increased pain along with decreased appetite/energy levels as a better indicator for him than a rising PSA.
He also shared some cases of PSA rising well into the thousands over a period of 4 or more years on a single treatment with no radiological progression of disease.
His point was that we need to be patient and get the most time possible out of each treatment and stop focusing on the PSA. Use the pain/energy/appetite gauge on an individual basis. Dropping treatments too early because of the rising PSA anxiety can shave many years off our life spans and we could miss out on something new that could greatly benefit US in that lost time.
Good info! Thanks!
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