Well, I freaked out last post after my PSA spiked from undetectable <0.02 to 0.03..Repeat PSA yesterday after 2 months and still at 0.03. My ONCO says that technically I am still undetectable...Sigh of relief of another 3 months anyways..
Stay well all
The only problem is the PSA test you're taking. Maybe ask your ONCO if you can switch to a conventional PSA test (lowest value 0.1).
I don't understand why you aren't taking Zytiga.
Allen,
With a "PSA holding steady at 0.03 for almost 6 years", I'm wondering why 'poofers' would need Zytiga? Perhaps I should probably be taking it also. I didn't think that I needed another drug that Walgreen's charges over $3,200/month for when I considered myself doing pretty well on $20/month tE2 gel. I'm not questioning your expertise, just wondering if more of us should be on Zytiga? I can't imagine anyone "freaking out" with such an insignificant rise from 0.02 to 0.03.
It has nothing to do with PSA. In fact, over-reliance on PSA is a mistake, imo. Poofers is metastatic and hormone sensitive - and two major randomized clinical trials (STAMPEDE and LATITUDE) have proved that such men live longer (and remain hormone sensitive longer) when they add Zytiga to ADT. Killing cancer cells that haven't yet created tumors that generate PSA can maintain remission longer.
I am very hopeful about E2, but until we see the results of the UK trials, I think it has to be considered experimental. Even there, it is being tested as an alternative to ADT, not ADT+ abiraterone. Abiraterone prevents the intratumoral and adrenal synthesis of androgens, which isn't touched by ADT or E2.
Thank you for the detailed reply. That clearly answered my question. Mine is also metastatic and hormone sensitive .
Did you have your prostate radiated or removed?
I don't know what your doing, but maybe you should keep doing it.
I know exactly how you feel, after recently going from <0.01 to 0.02 for my last two tests which were after my stent change, and then during bladder radiation, both of which probably affected my prostate and squeezed out some PSA. Hoping both ours go back to < territory soon if only for bragging rights.
Great news! Keep rolling poofers!😎✌️
Keep going! Great results! Why do you take Casodex with firmagon?
So my story is a bit unique. When I was first diagnosed in 2014 with a PSA of 209
with bone mets, I insisted that I go on Casodex along with Firmagon. My PSA dropped from 209 to 1.2 in one month and then below 1 to 0.05. The Oncologist told me to stop Casodex but the following month PSA test was higher around 0.09, then jumped to 0.15 the month after when my Oncologist put me back on Casodex. A month later my PSA dropped to 0.03 and then <0.02 the month after. We decided that since the Firmagon along with Casodex was doing the job I chose to stick with it and remained undetectable for 5 years until 2 months ago (June 8 2020) when it came in at 0.03 and then 2 months later (yesterday) still holding at 0.03...My Oncologist considers that undetectable and told me to stay the course with Firmagon and Casodex. I asked him if I should go on either Zytiga or Xtanti but he feels that as long as Casodex keeps doing the job to stay on it and save Zytiga or Xtanti for a rainy day of when I will need either or. Reason being that the side effects from Casodex are minimal compared to either Zytiga or Xtanti. I am praying that Darolutamide get's approved for by the time I either need to add Xtanti or Zytiga since Darolutamide apparently is as effective as Xtanti but without the central nervous system side effects.
BTW: At my choice I rejected chemo when first DX'd.
Unconventional yes, but it has worked for me so far...
So that is my story
I'll take 6 years
Most pathology tests here measure Psa down to 0.01, and any Psa below that cannot be qualified accurately.
I have had countless Psa tests since about 10 years before diagnosis in 2009 with inoperable Gleason 9. The highest was Psa 50 just after doc deemed that chemo had failed for me and referred me to doc giving Lu177. Psa has been up and down like a yo-yo and never less than 0.08 at nadir of early ADT following additional EBRT in 2012.
So having Psa move from 0.02 to 0.03 should NOT freak any man out. If you had RP and Psa went to 0.02 for long time, it may mean that the small amount of prostate tissue not able to be easily removed by surgery could be pumping out a small amount of Psa as it does with a healthy PG.
BUT, given enough time, that little tiny bit of PG material may develop cancer like the PG tissue that was originally removed. There could be one tine little met some place, which probably will be impossible to find in any scan now known. But having Psa move from 0.02 to 0.03 will not cause any lessening of your present QOL until maybe Psa reaches 5, when it may be a good time to get a PsMa Ga68 PET+CT scan and maybe you will see what is making the Psa go to 5, and some effective treatment would be needed.
Very often Pca causes Psa to double in a given time, maybe it took 3 months to rise from 0.02 to 0.03, and next Psa in 2 months might be 0.06, indicating 2 month rise time and if that continues, you get 0.02, 0.04, 0.08, 0.16, 0.32, 0.64, 1.28 in 1 YEAR, and usually that means Pca is definitely growing, and will become a threat; its a gain of 64 in a year, and another year could make Psa 82. But well before that you should be seeking treatment, ADT might hold down Psa for 5 years without doing anything else, but there is time to get scans.
Usually it is very rare for any man to have just ONE met if Pca has ever spread. There is often countless mets, and an early scan may only see a few of them, and they seem to grow at different speeds and become a different size of a same amount of time, but I have lasted quite well since watching my countless mets develop, then seeing large numbers disappear from scans after Lu177 infusions.
I am 73, and I still cycle 200km a week at good speed. I cannot live forever, or continue with more and more Lu177 forever as mets spring up like weeds after the previous year's mets have been killed off.
Zytiga or Xtandi are quite good drugs to delay Psa rise by slowing down Pca growth and maybe killing a few Pca cells. But Zytiga only worked well for me for 8 months, which is the mean time for which it works, just as many get more than 8 months Psa suppression as those who get less than 8 months. My onco said he had patients get up to 2 years Psa suppression. I had to have chemo after Zytiga failed, and Psa just went up to a max of 50 after 5 shots before I switched to Lu177 in Nov 2018. It is not unusual for a man to have Pca that stubbornly refuses to die with ADT+ add-on Zytiga or chemo or EBRT. Beta or Alpha particles from nuclide theranostic treatment seems to work for me. Its like someone is exploding very miniature atom bombs at my met sites.
Will I get Pca to surrender? probably not, and further treatments will have to be used, and I am nor sure what right now.
Meanwhile, don't worry, be happy,
Patrick Turner.
Hi Patrick, who is your Oncologist?
I see Dr Pranavan as a public patient at Canberra Hospital, which is entirely funded by government and I don't pay 1 cent due to our Medicare. Of course all public hospitals and many private hospitals which charge eye watering fees don't always have all the best and most effective specialist treatments or doctors, so my Dr P has been very happy to refer me on to get Lu177 where its available. But I do have to pay about usd $27,000 for 4 x Lu177 infusions, and no medicare funding for that or for PsMa scans costing usd $500 each. I've had 8 such scans so far since mid 2016.
I had 31 Grey IMRT salvation RT at Epworth Private hospital in Melbourne in 2016, and that total came to usd $18,400, and Medicare funded about usd $8,000, and I was told that was what insurers might have paid out. That treatment seemed to hardly work at all like the original 70 Grey of standard EBRT. I know guys who had good outcome with that standard initial treatment with 2 years of ADT. Their remission has lasted 10 years+.
But EBRT + ADT didn't work to kill my Pca, it just slowed down Pca growth, and added Cosadex and Zytiga still allowed my Pca mets to grow bigger, although more slowly. I ain't insured in any way, and so I have not made insurance companies rich because I always had enough savings for the rainy days.
To get our Medicare funding, afaik, you would have to be a citizen of Australia.
Patrick Turner.
Thanks Patrick, it's sounds like you have been through the wringer and Dr P is a good guy, all the best. 😎DD.
Poofers, etal. With non standard PSA testing..... what treatment decision will be made on your disease at the 0.0x level?
After 130 plus standard PSA tests measuring only to the tenths, I have never fretted nor worried. I am less than 0.1 (considered undetectable by the medical community). Occasionally I score a 0.0. Translated to less than 0.04 by the tests which you are taking.
My less than 0.1 would translate to less than 0.09....... with absolutely no worries nor change in disease treatment even considered. At what point or threshold will your medical oncologist become concerned and recommend a treatment change, above 1.0; 2.0; 3.0?... translated another way: above 1.000; 2.000; 3.000?
Case in point, 15 years ago I asked by medical oncologist, a world class researcher, why he relies on PSA readings to the tenth decimal? Why not the hundredth or thousandth? Answer: “Do you want to freak out and worry! No treatment decision is made at those levels. Besides, most medical oncologists do not really know how to interpret the result and most patients freak out at a rise of say, three hundredths. Don’t get me wrong, ultra PSA readings have their place; just not in patient treatment decisions.”
This from a Professor and Researcher at a major medical school.
I admit my information is 15 years old and if there is another thought on the subject, please tell me. Yes, great strides have been made in treating our metastatic disease, however I do not believe treatment threshold has changed.
Gourd Dancer
What are you taking and for how long now?
I am not taking anything but low dose supplemental testosterone. Stopped Lupron injections in February 2020. T never came back and added 4mg of Androgel twice a week in January 2011.
GD
Sigh of relief of another 3 months anyways.. Poof just like that... Keep Poofing...
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 08/08/2020 2:03 PM DST
6 years now and PSA <0.01 is it time for a vacation?
Dad/Heart Risk with ADT. Almost 3 years in PSA good.
Options after Detectable PSA one year after Salvage Radiation?
Diagnosed almost 3 years ago
PSA 0.03, testosterone 36.0 ng/dl - Honestly, how am I doing?
