After almost 2 yrs of ADT treatment with Firmagon and Eligard, I became castrate resistant and was put on Xtandi. A few weeks ago I had blood work done at my MO and PSA was at 0.09 . This week my urologist also did a PSA test and just called to tell me my PSA was at "zero". I am thrilled with the news, but I have doubts it is actually "zero". Most likely its at 0.0 ish. My question is has anyone ever gotten their PSA to zero with Xtandi and kept it there long enough to be considered "cured" or maybe in long term remission, or does it always start creeping back up after a few months?
thanks
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joeguy
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There is no point to an ultrasensitive PSA test for you. If you have had distant mets detected, you are not curable with current methods. That doesn't mean your disease can't be managed for, hopefully, a very long time. The very low PSA achieved with Xtandi is prognostic for longer survival.
Im not sure if I have what would be considered "distant mets" or not. During RP surgery 5 lymph nodes were removed and 2 had tumors (1 was 9mm). They also noted micro metastatic invasion of bladder neck, and invasion of some surrounding tissues. Margins were supposedly negative. The curious thing is PSA was still at 12 after surgery, and subsequent scans have found nothing. Although scans to this point have been conventional CT scans, PET scan, and bone scans. I have not splurged for PSMA or Axium scans yet. It been fairly frustrating fighting "invisible" cancer.
That is not distant, as you say. Have you talked to a radiation oncologist about possibly curative radiation of the prostate bed and pelvic lymph nodes. You really don't need more scans, since you already know it's in your pelvic lymph nodes and in surrounding tissues.
I have not spoken with an RO as of yet.... only MO and urologists. I am concerned about using radiation without a specific target. Since we cant see anything on the scans I have had so far, my understanding is they would basically need to just radiate the entire pelvic region, which gives my bladder and rectum a very uneasy feeling.
It is a mistake to think there exists any kind of scan that can find every bit of cancer. The best PET/CT scans cannot find metastases any smaller than about 4 mm. There can be a lot of metastases that are invisible by today's technology. If you are interested in curative therapy, you have to treat what you can't see. If it has been found in 2 pelvic lymph nodes, it's almost certain that there are more. If it has been found in some tissue in the prostate bed, it is highly likely that there is more that hasn't been detected. There are certainly side effects of salvage radiation, but you have to weigh them against the possibility of a cure.
You are actually the first person I have spoken with that uses the term "curative" once its out of the box and into the lymph system. If it is possible to kill it all with radiation at this point, I am certainly interested, but still very nervous about being left wearing a diaper the rest of my life from damage to bladder and rectum. They already left me impotent from the surgery, and at only 53 yrs old, that was bad enough.
You should really be talking to a radiation oncologist and not a medical oncologist or a urologist. Incontinence is a very infrequent side effect of radiation. In general, the better your status before radiation, the better your status afterwards. Also, your relatively young age is in your favor - tissues heal better. ED is much less after radiation than after surgery, but salvage radiation won't make it any better, of course.
Im pretty sure nothing they can do to me could make my ED any worse at this point. I would say surgery was 100% successful at leaving me erection free for the rest of my life. Im not sure who is a good RO in my area (Tulsa). My MO is at the Cancer Research Center in Tulsa, and he is affiliated with MD Anderson in Houston. I guess I can start by asking his opinion of excellent ROs in the area.
Joe, For what its worth, I'm 75 Oligo w/mets to the bone. I still have my prostate. Just finished Radiation to my prostate prostate bed and lymp nodes and all bodily functions back to normal.
I had RP and two salvage RT and dont have any of the problems you are afraid of, I am at your age and doing just fine. Maybe not all are that fortunate but I did not hesitate to do the salvage RT.
Not to be asinine (nor evocative) as I've found you to possess an encyclopedic acumen regarding this (& I bet a hundo) related topics, but your pronouncement bounced off my mindset. I'll concur with "no current methods" with an understanding that within the next five minutes the condition may indeed be curable. The fact that (no need to list them) myriad previously terminal conditions were incurable one minute and curable the next buttresses my point; from that emits a hydraulic purr of hope that keep many from the oily pit of despondency. You're a bona fide PcA guru, brother, but I may not be only soldier who ascribes to that line of thinking. In any case, I have read of one such survivor.
15 mo. and Xtandi still working for me at reduced dose. Never did get 0.0 PSA settled in 0.140 area last 9 mo. Last scan showed largest bone met dead and all soft tissue mets gone. Now just wait and see. One of the hardest things about this Damn disease.
Yes it is.....lots of "Im waiting as fast as I can".
So far Xtandi has worked better for me than either Firmagon of Eligard. The injections never got my PSA much below 2.0 but Xtandi almost immediately dropped it to 0.1 and now even lower.
Xtandi is tough stuff. All by itself at 160 mg dose, I was an invalid. Couldn't pick up water glass, cut up food, or take a shower unassisted. Did push PSA down and is holding. 86 mg daily average.
Sounds like it was rougher on you than it has been for me so far. I did have a constant headache at full 160 mg dose, but after dropping down to just 3 pills per day (120 mg) the headaches have stopped. My biggest problem with Xtandi, and all the other ADT drugs for that matter, has been the brain fog and constant fatigue. It has made working a 40 week a challenge at times.
Im liking the word "undetectable"....... just wonder how long that can last? My Uro seems to think with my good response, I might be able to get 2 yrs or more from Xtandi before PSA starts rising again.
Extensive bone and lymph mets. Chemo. Xtandi 18 months. Psa 0.2 last 7 months. Incurable, and this will not last. Just erased all my useless advice. Go joeguy, go.
Now here comes my 1 1/2 cents worth. If I recall "correctly" there was mention of "a paddle" they use which protects your bladder and rectum when your radiated. If I'm whistling camptown races then I'm sorry (and someone here will correct me) . Doo-dah Doo-dah.
If you did not have metastases when the cancer became castration resistant, the median time to progression is around 37 months. It could be much more or less. It really means that 50% of men had metastases before 37 months and 50% have metastases after 37 months. Look at the graphs in this study
No, I didn't. We decided to let the PSA reach 0.4-0.5 and get a Ga 68 PSMA PET/CT. It was done 2 weeks ago and it did not show metastases.
The plan continues to be the same, we are waiting for the PSA to reach 1- 1.2 and we will repeat the PET/CT. If there are metastases they will treat them with SABRT and if it is not possible (too many or wrong location) I'll try to get Lu 177 PSMA treatments in Germany, Australia etc.
The idea is to delay as much as possible the use of the new anti androgens (apalutamide, enzalutamide, darolutamide, abiraterone) and chemo, because when one uses them there are not too many option left. I could not have Provenge because I have a peripheral neuropathy caused by another vaccine. If you did not have Provenge you should discuss it with your doctor
I consulted about my situation at the Sloan Kettering cancer Center and they agreed with this approach. It is uncharted territory. I already had a round of Lu 177 PSMA when I was hormone sensitive 2,5 years ago and the undesirable side effects were minimal and the treatment took care of all the multiple lymph node metastases I had, so I am willing to risk it.
I guess we are each conducting our own personal clinical trials. I have had a good response to the new AR inhibitors and hope to get a 2 or 3 year run out of them. I am also in the process of having genetic testing done on my prostate that is apparently currently living in a large freezer of cancerous parts stored somewhere in the country (I did not know they stored them) to see if any targeted treatments exist for my particular mutations. The doctors are also curious about my genetics as I have had a brother, uncle, father, and great grandfather all with PC. I am saving the "big hammer " treatments like chemo for later.
The problem with the new anti androgens is that they will eventually fail because of the mutations of the AR, particularly the AR-V7 mutation. This mutation makes enzalutamide, apalutamide and abiraterone less effective or useless.
IMHO, if i were taking enzalutamide I will try to get into the clinical tiral at Davis of enzalutamide and niclosamide or indomethacin. Niclosamide is supossed to inhibit the AR-V7 mutation. I think the people at Davis hope that enza and abi will continue working for a longer time.
This is also part of my plan, hoping that using SART, Lu 177 PSMA, enza or abi along with niclosamide, Darolutamide will be eventually be approved. Apparently darolutamide may work when enza or abi stop working, but I am not aware of data published about this situation.
Niclosamide is not sold in the USA but it can be bought online in Europe. The problem is that the clinical trial seems to use a special form of niclosamide which is better absorved by the gut. We are in the process of finding out if this asumption is correct.
The other possibility is to take enza or abi with indomethacin which apparently could have the same effect than niclosamide. The problems with indo are the kidneys (intertitial nephritis) and the gut (ulcer, bleeding etc).
of course it won't last. i made a big a mistake when i was first cx and for years my numbers went up and down. then they c,limbed but was told your doing fine. i got a very smart urologist and said even after 11 years if things work out i can get my psa to 0 but since i know there is no cure u just keep playing the drug game until it stops working then face it.
I too am having dramatic response xtandi. Psa dtopped from 5.3 to 1.28 in three wks. After being on it for a yr. and off for about 4 mos. I believe most of these drugs can can be done intermittently, monitoring psa closely from 1 to about 5. Ptherapy therapy was rt so let it hit 7 once just to bbe sure, rocco
Been on Xtandi for 2 years. PSA has been <0.05 since then. Also on eligard. I don’t think they will say your cured. My oncologist said there will be no remission and that I will have this monster till I die. Sorry to be so blunt. 🙏🙏🙏🙏
Have you had trouble with the Eligard being able to keep your testosterone at castrate levels since starting Xtandi? They always had a hard time keeping my T level low enough with Firmagon and Eligard before Xtandi anyway (it stayed in the 30 - 35 range), but since starting Xtandi my T level has been in the 60 - 65 range which is no longer at castrate level. Makes me wonder why even bother taking the Eligard shot, especially since I am now castrate resistant anyway.
My PSA has been undetectable for over 4 years after dx of Stage 4, G9 PCa at age 55. I’ve been taking Xtandi for 3+ years now on a reduced dose after SE’s got a little too rough after about 2 years on it. SE’s seemed to increase over time, fatigue, cognitive issues, headaches, etc. I’ve also had radiation and chemo (click on my profile).
I still get an ultra sensitive PSA test done monthly which goes as low as <0.006 thru Labcorp. Dr. Myers protocol called for ultra sensitive test. I want to know ASAP if and when my cancer awakens from dormancy so I can plan the next steps.
Well, Joe, it looks like you’ve got this well in hand with a lot of responses that approximate answers! Our journeys are similar but unique, and the tools we are given to fight this work differently with each of us. Since I, like you, have the confidence of youth on my side (I am 51 now, 30 months in), I will add another tool for your consideration: Provenge. This is an immunotherapy treatment that studies have shown to improve outcomes, but that somehow doesn’t afffect PSA, is only quasi-supported by insurance, and costs $150K. My urologist offered it up as a possibility for my consideration just this week. I’m hunting it down now on this site to look up some responses...not answers, mind! Cheers - Joe M
We seem to be very similar in age and cancer diagnosis. Getting 3+ yrs out of Xtandi is very encouraging....... I was told I could maybe get 2 yrs out of it.
Yes, my Uro mention Provenge a while back. The thing is, there isn't a lot of evidence that Provenge actually does anything. It could very well be little bang for a lot of bucks.
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Cheers - Joe M 
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