I am so appreciate everyone's input on this site. Question: I was diagnosed in 2002 with 3+4 and 4+4. Had RP and Radiation in 2003. PSA stayed below 4 until 2012. Started 50mg Cassodex and PSA stayed below 1.0 until 1-1-19. I have 8 bone mets. Started Lupron in March, 2019.. I have PSA tested monthly. PSA monthly numbers are April - 0.67,May - 0.38, June - 0.31, July - 0.46, August - 0.5 and September - 0.66. I wish the numbers would go the other way. Has anyone else had similar results????
No - I didn't say that - either one is good. They work in different ways. Zytiga prevents your body and the tumors from producing androgens. Xtandi blocks the androgen receptor that would otherwise cause the cancer to grow.
I always thought zytiga had less side effects than xtandi? Husband is 70 and dr said his age dictated zytiga first. Fatigue more evident on xtandi? I’m dreading xtandi due to that scenario. He’s fatigued as it is. Dr said he was too young for xtandi. Those psa numbers are something we’ve never seen. Lowest 3.7
I have had PSA readings that went nowhere for 3 years. It stayed at 7.95 to 7.76, Then my PSA started to rise. At that point I started a drug trial with Zytiga.
I had a bone biopsy to find some cancer cells to see what the next step would be. No cancer cells found. So now I am scheduled for a biopsy of my prostate.
My journey with PCa is very similar to yours, the only difference is the introduction of Abearaterone and prednisonefrom May 2018 when I started 6 monthly shots of Zolodex, my monthly PSA levels much the same as yours
Abiraterone is better known by its trade name of Zytiga and Prednisone is a steroid that is taken in conjunction with Zytiga to counter some of the down sides of this medication
Those numbers are way low, I should not be worried. Mine is 1.9 and doc says they are low so not to worried, last scan showed Mets healing with no new one and CT scan showed no new cancer, on lupron every 3 months.
it seems to me toy are rather lucky to have had diagnosis 17 years ago, and still have Psa < 1.00.
But your Psa has never been down to 0.01, about 1/66 of the level is now. So for all this time, your docs have found it easy to keep your Pca under control for most of the time. Many of us here have Psa well over 0.66 you are worried about now, some with Psa of 1,000, and it can be up to 10,000.
Many if not most men respond to monthly Lupron injections to keep Psa low and slow down the Psa rise. I've had this kind of ADT since 2010 and it was effective until 2016, then Cosadex was added, and this gave 6 more months of Psa suppression, then I had Zytiga that gave 8 months more suppression, an during all this time Psa went down < 1.0 after added drug was used, then up when the added drug failed. Psa was 12 after Zytiga failed and when I tried chemo added to the ADT mid 2018.
I'd had three PsMa scans by then that showed a steady increases of mets in lymph nodes and bones, and I had so many small mets they could not count them.
So all these mets grew while I had ADT and the add-on drugs that suppressed the speed of growth of Pca, but did not kill many mets, if any.
Chemo didn't work. After 5 shots Psa was between 45 and 50. I changed to Lu177 last Nov, and had 4 shots by May this year, and now my Psa is 0.4, slightly less than yours, and falling, not rising. My 6th PsMa scan told docs that bone mets are healing up, there are no mets in lymph nodes, and none in any organ or anywhere else. I am able to cycle again, wake up each day and have no pills I have to take. However, I do have to take Xtandi which I began after No 3 Lu177 shot, and continuing, and a research doc said the Xtandi will assist the action of Lu177 that continues after treatment cycles for months, because when survivor Pca cells try to divide and grow, they are so damaged by Lu177 they cannot, and they just die. Well, that's the theory, but Lu177 did begin to lower the Psa after No 2 shot slightly, then a lot by No 3 so the Psa reduction was not only due to Xtandi.
For your situation, docs could try using Zytiga OR Xtandi added to your ADT.
You cannot assume that these will give you more time; I have seen men get no benefit from Casodex or the others. But ADT didn't work for longer than months either. One died 3 years after Dx, despite good doctors.
You may get more suppression of Psa and Pca than I got. But maybe sooner or later your Pca is likely to begin to make a higher Psa as it grows despite these added hormone manipulation drugs which stop all testosterone made by testicles, and the small amount made by adrenal gland. Pca has a nasty habit of being able to increase its receptor cells that accept testosterone, so reducing the body's T with ADT still allows Pca to keep growing. Then later the Pca makes its own T and all efforts to starve the Pca of T fail. Your Pca seems to be slow growing, so don't be surprized later if chemo fails because Docetaxel interferes when cells divide to grow, and some cancers are killed easily with this process, but certainly not all cancers, and some are indeed killed at the time of chemo, but the growth of cancer exceeds the death of cancer, and cancer might mutate to resist the action of chemo so then a stronger chemo with much worse side effects has to be tried, often in vain, and your body suffers badly.
I could see that chemo would not work, and my oncologist said it would not, but said when the chemo did fail, he'd refer me to the docs giving Lu177 here in Australia in Sydney. I had to fail chemo before accessing the Lu177 which does not have full approval. I've had maybe 7 x PsMa Ga68 scans where Psa was at least 5, when docs say this scan is most able to show what mets you have that are bigger than about 2mm dia. BUT, the mets must have chemistry that express PsMa and can attract the ligand chemical combined with gallium68 isotope to get an image of the met. From the scan, the "PsMa avidity" can be seen, and SUV, or specific uptake value seen, so then its possible to see if Lu177 would be uptaken by the mets, and be killed as a result, ie, the scan tells a patient if Lu177 is likely to work. Likely means maybe a 70% success rate, ie, you end up with a mean time of Psa suppression of 14 months. Some have no benefit, others get years, and the benefit is not just more Pca suppression, its because Pca cells have been killed.
If a PsMa scan can't show the mets, then you could be in trouble because Lu177 would not work, and then you must experiment with chemo, or DNA analysis, PARP inhibitors, and I have seen men get nowhere with these things; the probability for success is low.
I began my fight with Pca at age 62 in 2009 after Dx of Gleason 9, 9/9 positive biopsy samples, inoperable, but no mets seen in scans until 2016. Its highly likely mets were there before any treatment began, but CT scans at that time could not see mets until they became very big, and threatening.
PsMa scans show mets about 2 years before CT scans can show anything. So expect to find you have more than 8 bone mets and others in soft tissues.
Met numbers can be far higher than men like to think are present.
Unfortunately, wishing Psa will go lower won't work, and you need the best doctors you can afford. Lu177 is not approved yet in USA, so be prepared to get it in Germany or here in Australia. I met a couple of men from USA getting it in Sydney where I got mine.
I have so far had low side effects with Lu177, much less than chemo.
My Pca will grow up again to be a threat to ruin QOL and kill me if nothing can be found to kill it or suppress it. I might find more Lu177 could be effective, or not be effective, the outcome from cancer treatments cannot ever be assumed before getting treatments.
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