Newbie here. See my icon summary (what do you call it?) for specifics. I was diagnosed Stage IV PC January 2019, and started Casodex + Lupron + Zytiga + Xgeva + Prednisone. My PSA was 111 on 1/15/19, 65 on 3/15/19, and 4.6 on 4/10/19. Is that change typical for someone after 3 months od ADT? Does it mean much of anything?
And now one of those hard questions: How long does it generally take to become castration resistant? I assume it depends on a whole lot of factors, and it can probably vary a lot even for the same factors. But I don't have a clue, so please help me with some sort of guidance.
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Gearhead
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Yea, that's a great response. It means you are on a downward trend. It would be ideal if your PSA reached less than 0.2 at the 7 month mark, that would indicate a really great response.
Castrate resistance varies from man to man. It seems that number of metastases and location is a strong indicator of how long primary ADT would be effective for. The less the metastases the longer the response. It's also better if you don't have any visceral mets, like in the lung or liver.
From all the studies that I have read (in the hundreds), it would seem that it is frequently quoted as being 1-3 years before castrate resistance occurs. The median is somewhere between 16-19 months. Becoming castrate resistant before the 1 year mark would be indicative of an extremely short response.
It would be helpful is you also shared how many mets you have and to what location. If you have a low number of mets, there are some studies being conducted where radiation is being used to those sites. This could prolong the time until castrate resistance occurs.
It also sounds like the combination of meds you are on is currently the best standard of care.
I just saw your last post. Only having two mets with no visceral mets could be considered low burden disease. I would discuss with your oncologist about possible radiation to those two sites and maybe even the primary tumor in the prostate if you haven't had it done. One study indicated a benefit to radiation to the primary tumor and a benefit to pain palliation and maintenance in the later stage of the disease if the tumor is irradiated.
This is the treatment path my dad has just started. One met, previous Gleason 7, RP nine years ago, so Lupron shots and radiation to the one spinal let and to the prostate bed. Praying that it will work.
I'm not a doctor, but some of the small scale studies (not as reliable or practice changing) have indicated great responses to radiation to mets when it was in the low burden disease stage. Some defined as < or equal to 3 mets and the new studies going as high as 5. One current study is even at 9 mets.
With the current low gleason score, low PSA, and only 1 met, it sounds like your dad is in it for the very long term.
I am also worried because my dad goes in for a repeat bone scan tomorrow after almost 6 months on ADT. He has 4 mets and I asked his doctor for a repeat and then if he could zap the remaining mets. Hoping that his disease is under control with the systemic therapy and that we can go forward with this.
I will be thinking of you and your dad tomorrow.... all the positive thoughts. Will he have a PSMA PET scan as well as the bone scan ? Oh while I remember one member on here mentioned the Blood test for ‘circulating tumour cells’..... id never heard of it. You would hope that all of our oncologists have heard of such things and factor it in for treatment plans.
No. Just a regular ol bone scan. We live in Pennsylvania and go to a smaller healthcare system known as Geisinger. They have a better hospital a few hours away, but it seems that my dad wants to be as ignorant of the disease as possible and just try to live life. I think this is a bad thing, but he's really good at taking things the way they come.
He's going to be getting a PSA test at the end of the month when he goes in for his 6 month check up with the ONC. I've seen some stuff on CTCs but I've only seen that it's an indicator of progression and survival. I really haven't seen any indication that this test would change the course of treatment - i could be wrong. But it seems that it might just increase anxiety levels as of now, especially if your doc says you have a high amount of CTCs in your system and it changes absolutely nothing in the course of treatment - much like these ultra fine metastases scans.
My mom had me order an air quality test kit that looks for a few markers of air pollution. One of them is formaldehyde. It showed that there was a high amount of it in her room and in the kitchen. What is the cause of it? No idea. The only "solution" would be to rip up everything in the kitchen and bedroom, but that's crazy. So now she's anxious about it and there is no good solution. I could be wrong, but that's how i feel CTCs and ultra fine PSA tests are right now.
With that said, thank you for your thoughts tomorrow. Sometimes it just seems like I'm alone in this and nobody else is going through it. Take care. : )
Formaldehyde fumes can come from particle board, which is used to build cabinets and furniture. Also used extensively in manufactured homes and even stick built homes.
Hi Barrons, when on this site you are never alone. We are all in the same boat, giving each other support. I wish you and your dad good luck at the doctor's tomorrow/today? I am in a different timezone, so not sure. Keep posting, and we will support. Strength to you and your dad.
Thanks everyone for responding to my questions. Especially thank you Barron S for your comprehensive explanation. To clarify, CT imaging and bone scan has identified only one met (which was spotted in an earlier MRI): metastatic tumor on C6 & C7 (neck bones)... maybe that counts as two? Magnus 1964: Radiation has never been mentioned by my oncologist. Is radiation of a neck bone met common? feasible? And what is the down side of "overload of ADT meds"?
Radiation to the neck is tricky. I guess I am just not sure where this treatment is going. Is it your doctor's idea for intermittent ADT? Has he/she mentioned Provenge?
If you're interested in the treatment 'flowcharts' (NCCN Guidelines) used for diagnosing and treating cancers (including prostate), you just need to create a free login and they are available here:
my psa was 1400 to start last October and went " PSA CA MONITOR 1400 (H) 48.2 (H) 7.6 (H) 2.2 (H) 1.0 (H) 0.4 (H). " in the 5 succeeding months. it plunged 1350 in my first month of treatment. I'm stage 4 with mets literally ALL over. imagine a heavily decorated Christmas tree and the lights is what I look like under scans. way past radiation and / or surgery. I'm on Lupron - Xtandi and Zometa. your psa has dropped nicely and seems like you can have some nice optimism in stretching things out considerably. hang in there and stay positive ... your treatment is getting some great results. over 250 trials and treatments are in the pipeline and at least a few of those should be beneficial for guys like us. even Xtandi hasn't been around very long and it works great for a lot of people like myself. lots of VERY informed and intelligent people ( great guys ) here on the site to give you help, information and support. you are in the right place. we are all in this together.
ya yahaya ya ah ...... good one. I probably could have used a different example than xmas tho yahaya haya a . Hope you have a great Easter with family and friends.
You really won't know when you become castration resistant (rising PSA while on ADT) because you are starting with Zytiga, so your PSA won't rise for much longer. There's no point in knowing what the averages are - you have to deal with it as it comes.
5/24/18 PSA 1296. I thought that can't be right I want another test.
6/01/18 Just as I thought they were wrong it was now 1303!
Did all the other tests and scans.
6/26-7/07/18 Did one regimen of personal Alkaline Therapy (12 days) and a PSA on
7/09/18 was down 70% at 362. Still high but wow only 12 days elapsed.
7/06/18 first Lupron shot, Continued AT every couple weeks.
9/06/18 next PSA now at 1.8!!!!!! Really wow.
So yes numbers can drop dramatically. Each person is very individual so can't draw any specific conclusions as to how you might obtain a different result.
Today I believe my PSA is about 1.7 and staying below 2 and above 1.3 since 9/06/18.
Sounds like your numbers are good. I strongly suggest you find a local Support Group where you can talk to a number of men with similar circumstances to yours but much longer treatments and success. Gives you an idea of what you MIGHT expect.
Great news, Gearhead. All the best. For calibration, I had blood test March 2016. PSA was 18. I didn't know what that meant so went about life until 1/10/2019 and, at a checkup for something unrelated, had PSA of 289. Had 3-4 mets, 2 on ribs, one on iliac [pelvis] and maybe one lymph node.
Feb 5, got Lupron shot and 21 days of Casodex.
March 3rd PSA - 8.8
March 14th PSA - 2.6
March 14th Started Abiraterone + Prednisone
March 28th PSA - 0.8
April 12th PSA - 0.4
Also, shifted to mostly organic, completely vegan [avocados, broccoli, spinach, olives, etc.], ~zero carb, light fruit diet, with green tea and some pomegranate juice. Eat pistachio & macadamia nuts for snacks and protein.
Added daily supplements of Curcumin + Vitamin D/Calcium.
Spoke to Reiki and mystic folks. Both said release guilt/shame for any past transgressions [I wasn't aware of any, but one mystic said she could help release some old energy blockages in the prostate area [5th chakra]. Hmm, Ok. Both said to ease back on the self demanding, driven, Type-A attitudes and let life play out a bit more naturally. Hmm, ok.
In addition to up and down move around professional work, exercise gently for 1050 meters on an erg [rowing machine] 5 mornings each week [almost 5 minutes], then, while recovery breathing, settle into about 4-5 minutes of quiet meditation.
Those are my experiences/practices, for what it's worth...
For rest of community - I am curious about oligo-metastatic treatment [Dr. Kwon] to 'go after' the limited mets to reduce the burden as much as possible. Not sure I can persuade my large California provider to instantly do the PET scans and other preps to pursue this idea, but may over time. Thoughts, experiences from others? BarronS?
Type A .. The organic shift I like . I follow much of the same.. I can only wish I could have cleared up my shakra of my prostate before inception of APC .. My wife does reiki , she is a natural healer, certain people have healing powers. I was once touched by a La Kota Sioux healer on an injured shoulder . Had no pain in that shoulder for two years after. Before I had much pain . Heal thyself , drs only go so far .. Take care.
I started 912 to <.03 in four months....bical 6 wks...eligard 2 wks..... .79....abiraterone 3 months at current stated level....immeasurable
Here's the rub...if you have high met burden you statistically are prone to have developed multivariants that may not be ADT sensitive...hope they are forever not...that is about a six consecutive boxcar roll of the dice. So now what.
You've made the smart choice of primary treatment. Now you must trust it or seek a way to stay ahead of the odds...choosing this path means you cast the net widely..read consult digest adjudicate test and above all share with the rest of us...everything you dismiss or administer successfully or otherwise fail with. We are the big data collective swinging thin edge of the wedge in the labratory of lay practice medicine.
You'll soon see results...i've chosen supplemental Rx's that so far cannot be dismissed as quackary...but remain an unknown ongoing n=1 self observed experiment.
I will keep you and all we other loving supporters of any changes.
I won't indulge in who or what you might pay special attention to...you'll figure that out better on your own without my prejudice.
Everyone’s cancer is different I’ve been on ADT for 5+ years now after being diagnosed with Stage 4 Gleason 9 and still not castrate resistant. I’m very fortunate to have a solid group of doctors on my treatment team and God has definitely blessed me. I take it a day at a time and I know things can change anytime.
I took an aggressive approach to my treatment early on, a “multidimensional” approach as Snuffy Myers used to call it, you can read my profile to see what I’ve done. I recommend you learn all you can and get with a good medonc who specializes in PCa. Good luck!
This is my second thank you, but I wanted to thank Kaliber, Tall_Allen, 2dee, ZCorn, larry-dammit, jbooml, and EdBar for your helpful posts. Some of you have had similar PSA decrease rates after starting ADT, so I guess my experience isn't unusual. More important, some of you have remained castration resistant (wish there was a better term) for a long time, and this gives me hope. I really like this site for the fellowship as well as the information.
Best answer to your question: Get a jar of mixed jelly beans and a blindfold. Place the blindfold in your pocket. Next reach into the jar of jelly beans and pick out one. Eat it, if it taste good then pick out another one and eat that one. Keep doing that until you don't like the taste of the jelly bean or the jar is empty. At that point take the blind fold out of your pocket and cover your eyes. Now think of a number from 1 to 500 and that number will be how many weeks it takes for you to become castrate resistant. Not scientific but tasty. Don't forget to remove the blindfold or you'll be bumping into walls.
You would get much better advice from the mystic than you would from j-o-h-n. I'm 2 years in, extensive mets & etc, still hormone sensitive. The lupron makes me very sensitive, so please, don't hurt my feelings.
it's like fling out the " hook " and the suckers will swim in: ok ....... " if it wasn't for your mood swings you wouldn't get any exercise at all !!! " ratt ta tatt ... Oh Please , let me be the first .... LAME !!!!
I'm picturing both you and j-o-h-n in a karaoke bar singing " Feelings " ....... um no, I was trying to picture it but but decided I better not ... scary ayahaya haya ahah a... yikes .....
There are several ADT (Androgen Deprivation Therapy) treatments used out there.
If your PCa is hormone or androgen sensitive the PSA will drop radically. Its a great thing to know at this point.
Your Testosterone will go to castrate range which is 20 ng/deciliter. Also the Casodex will block any androgen for entering cancer cells. I was on the Leibowitz protocol of 2004 as administered by Dr Lawrence Kempf in NYC. I was on Zoladex 150 mg of Casodex and 5mg of Finasteride for approximately 18 months.
My PSA dropped to .005 and after treatment rose to 2.16 today 15 years later. It was as high as 3.4 and is reversing we hope.
I didnt take all the items you are taking and I had a GS 4+5 which I think is stage 4.
I started out at 65 years of age with a PSA of 4.7.
I have known people on Lupron only,whose PSA was much higher than yours and did very well over the years. There are some who had surgery and radiation who are in trouble now trying to hopefully control their PSA. They became castrate resistant. Staying on ADT too long can make you castrate resistant. 13 months is the limit but you can retreat after that if you do it with caution.
Dont get upset by this castrate resistant stuff. It takes a long time for that to happen if ever. Usually once you enter this type of treatment the prostate cancer finds it difficult to leave the prostate at all. You dont have lesions and you are not metatasized. If they say you are why the ADT will take care of that.But you are most likely unsymptomatic and can be confirmed with a 3T MRI. Its ultra sensitive and fairly new.
Most guys have organ confined disease and even if there are nocticeable hardspots on the prostate skin, by DRE ,still doesnt mean anything has moved.
Also keep in mind this a very slow growing disease unlike many cancers that are not.
Usually casodex first for 2 to 3 weeks then Lupron which should lower the psa, it might take a while, I believe you won’t have any problems for a while, don’t believe everything you are told, there are many things you can try, that does not screw up your body. Read, investigate and get a little help from your friends, I have been going for five years, had radiation, and ADT and I am at 6.5 and lowering just keep the faith and try to be rashnel with your thinking !!! I am 85 yrs old and still kicking
It’s called your profile. CR varies. I’m still not CR after nearly 5 years of intermittent ADT . But I’ve had only three bone and no visceral mets . Just pelvic lymph nodes.
As I admitted, I'm a newbie here. So here's a newbie question: I think I understand what visceral mets are. Is development of visceral mets consider to be a more serious issue than development of additional bone mets?
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Keep on fightin'...! 
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