Do we still subscribe to ADT for life? My PSA at diagnosis was 1000+, with extensive metastasis in the usual bones, the latest scans shows scars, no active tumors and PSA <0.02.
So, why continue quarterly Lupron shots and daily Abiraterone Acetate (Zytiga) with Prednisone?
Why my Dana-Farber Oncologist keeps kicking the can (cancer) down the road, should I expect more for quality of life consideration?
I know a patient who also had an execellent response to ADT. He decided to stop with ADT to avoid side effects. His PSA value increased and when he restarted with ADT his PSA never got so low again as before.
To avoid side effects I would rather use estradiol patches as Dr. Myers recommended.
Have to ask the Oncologist for estradiol patches prescription, the GP will not do anything for me because of PCa.
Those side effects eventually deminish. As GP24 said, if you stop you run the risk of not being able to go back on those drugs. I have been on these drugs for a long time, casodex, zytiga, xtandi, etc. It gets better.
I know, read many cases here that the cancer comes back with different characteristics.
Your PSA is undetectable and bone metastases have shrunk because of the aggressive hormone therapy. Unfortunately, that is never curative. I know many men with HIV whose viral load is undetectable and would rather not take their daily antiretroviral therapy. Like you, their disease is controlled by the therapy, but not cured by it.
I hear you, it is the notion of 'not curative" that escapes us. I'm "currently" undetectable because of the treatment, but my cancer is under controlled at the moment, but it will never go away in my life time...
Thank you!!
Hey dark im exactly where u are....and when i ask to even go on vacation from lupron/ erleada....same ol shit ...if you do youll wake the sleeping giant that is your aggresive pc.....and by the way ... the fn side effects dont subside we get used to them and it sucks....i just made 2 apts for same time didnt remember making the othet one 20 min prior....tell me its old age im 64 yrs young ......peace to all my 4 yr anny is in 2 weeks .....blow out the candles....and toast the good life.....bw
I take sulbutiamine for those memory , fatigue and mood issues. It is very cheap and I think it does something good to me.
Great point regarding Sulbutiamine, will give it a try...
You have to take it then please?
Fatigue and memory loss gaps are getting worst, frequently missing meetings, work is technical (Software).
Just hit 60 a few months ago, although did cut back in working out, certainly need to get back at it. The COVID-19 restrictions made the gym access impossible...
How is your quality of life? Mine was surprisingly good on abiraterone, until NEPCa appeared (and too soon to be treatment emergent). We have a guy here on the forum in the Stampede trial, 8 years on abiraterone and still going if I recall correctly.
Was doing fine for awhile, but recently fatigue and memory loss issues have gotten worst.
Yeah, I've been battling those myself, along with pain, and hoping it's due to this year's chemo and radiation, and the urinary stent too. If this continues I could see myself asking the oncologist about dropping some drugs or dosages. On the other hand, if our memories deteriorate further we may forget about the other side effects 
My PSA is also undetectable after over 2 years on Zytiga and ADT. There's no way I'm going to let up and give the cancer a chance to rear it's ugly head. That will happen eventually no matter what I do, but I'm not going to help.
Better to live with the side effects than give the cancer a chance to grow IMO.
I thought about intermittent ADT, but the stoppage cycle is not long enough for any relief, a no brainer of risk-verses-reward logic.
Understand about cancer is down, so keep it down...
There's been at least one post, if not more where the testosterone doesn't recover fast enough to provide a benefit while the rising PSA becomes a source of anxiety. I know in one case, he went back to ADT before the PSA got much above 1 or even less so arguably he could have gone on, but I think that would probably be hard to do. I'd be feeling like the PSA was stalking me.
Keep going as long as you can...future treatments will change the course of therapy and may keep it under control for life!!!
Stay on the garbage. You will never be fully cured but you can keep the wolf away from your door for many years. You have a new life, adjust to survive.
I have been on ADT for 4 years and was told I would be on it forever. My psa has been neglible since radiation and chemotherapy after I started on ADT. My 4 Mets cannot be seen on scans now, but I accept ADT and seem to have got used to the side effects. Hot flushes still occur and I get tired at ties, but exercise every day and my diet help me almost feel normal again. I have peripheral neuropathy from chemotherapy completed 3 years ago, but have learned to live with that too. I find that a positive attitude helps considerably.
Oh, 4 years, and I thought 2 years is enough!
And getting neuropathy was a fear when getting chemo infusions, you got the attitude!
All the best...
See, I told you you need to continue living and get back your daily routine, doing exercise will help you a lot, just do it please 🧡🧡🧡
Wow
I am beaming with joy just to hear all of you are having a good run with Zytiga, ADT and after doing either Radiation or Chemo. Well done brothers ❤️ And the good oncologists 👍
I wish I can proudly say one day I am also undetectable. I have done the gamut of stuff like chemo, on Lucrin ever since October 2017, now on Zytiga since 3 July 2020. I hate injections and blood works, going to hospitals and waiting...sigh but no choice, have to endure, but you know brothers let me just remind everyone; I am so thankful for every day I spend above ground than...very grateful to spend more time with family and friends, and all of you. Yes the fatigue and the no sex ( sorry spouses, don’t mean to offend anyone ), gets the better of me most days of the week but I have learned to live with my new normal 🤔
My very best to one and all, and if you’re undetectable, stay the course. You’re in a good place❤️
Haniff
Beautiful attitude Haniff. I bow to you as you are indeed my brother. Live on. Stay strong and celebrate every day of life.
Thanks Brother ❤️
I have the wonderful hormone resistant prostate cancer...ADT alone does nothing. A few years back I was given Erleada and the Beast went into hiding. I continued to take Erleada until October 2019 when the “falling down” side effect became too dangerous to continue the drug. My last fall on the drug was down a couple of stairs and face first into a rock driveway.
So I was on ADT alone and undetectable (For a while). Jan. 2020 I started 6 rounds of Taxotere (still undetectable) and finished in May (still undetectable). Then in July on ADT alone, my PSA began to rise. As of last month, it was at .23 (still very low). I started provenge this week and my doc has indicated that I’ll go onto Nubequa (supposedly fewer side effects compared to Erleada) at the end of October.
Bottom line, my Oncoligist told me that the beast would resurface eventually, and it did. He did say that it would’ve been nice if the the chemo held it off longer, but it didn’t 
Luckily, there are a lot of options left for me...and I intend to live a long time...I’m 56 and have a lot of life left to look forward too.
Yes indeed you do CRK2. Let us know hoe the Nibequa works for you. We will be here for you.
It appears that you have had a great response to ADT. The fact that you mentioned metastatic answers your own question - to quit now would not be in your best interest.
It is difficult to realize that the word cure isn't on the table. I was told that the cure word is likely off the table for me when I chose an ADT holiday - with rising PSA as the resultant.
That' where the Q of A comes in - at the end of the day, it was worth it for me - I expect to get a good response to another form of ADT because I responded well the first time.
Thanks to this forum - I have a better grasp of what to expect and perhaps, plan for.
Many men have had success, over the long term, with ADT - I hope to be one of them.
Just to give a different view. I was diagnosed 11 years ago, had a prostatectomy, then radiation to the prostate bed. Neither of these reduced my PSA to negligible so I went on to ADT which did the trick for a long time but finally began to fail and my PSA crept up to 6.75. Exasperated I pushed hard for a proper scan and discovered that I had two mets, one on my spine and one on my ribs. I have now had Cyberknife treatment to both. I'll never forget the look on my consultant's face when he saw my PSA had dropped to 0.10. He actually got the result rechecked because he didn't believe it. He took me off ADT immediately and so far my PSA has not risen. His view is that ADT is bad for the health, a view I share, except of course when it is proven to be effective. I've been off ADT for nine months, have lost a lot of weight (intentionally) and feel a new man. I'm not naïve enough to be confident that the cancer may not return, but until proved otherwise I believe that there may be men with oligometastic disease who can achieve a cure. Do what feels right for you - we're all different.
That is great results!!! Proves that all of our cases are related, but different.
Awesome congratulations on the great result from RT to oligo mets. Live on!
I hate to be the odd-man-out, although I often am. You can always come back after a vacation from ADT and set the beast to rest again. I have experienced metastases disappear in lymph nodes and on bone. I believe it is "gone" when it no longer causes "pain" for four or more years and serum PSA goes to low level, say under 0.2. I'm going on 9 years since I was diagnosed with advanced prostate cancer. It seems to be hormone sensitive type. It has caused pain and swelling in lymph nodes in my back and neck, on my skull, and on my tailbone, but over times it moves around, and there are still a few sites I can feel pain. I believe it has disappeared completely in most of the sites that it hit. I know for a fact that the tailbone spot has been "gone" for five years. many lymph nodes swellings with pain have been "gone" for about that time, and several skull mets have disappeared for many months now. True, they could resurface at any time but during a four year vacation from ADT old ones didn't come back while new ones did. So my take is that this thing can be beat, but it's not easy. I think I rid myself of the tailbone pain through heavy lycopene intake with ADT, and lymph nodes in my back similarly. Skull mets pain with headaches seemed to have gone away with hot hot showers. That was without ADT. So anyway, like they say everyone is different.
My PSA has been undetectable for about 6 years now. I’ve been on Lupron since dx, and Xtandi for over 5 years now along with some other meds that are part of the Snuffy Myers protocol.
Side effects suck, Xtandi side effects were cumulative for me, and I was able to reduce the dose by half to 80mg. Side effects were reduced but still substantial. My current MO, Dr. Sartor suggested stopping Xtandi since PSA has been undetectable for so long. When I did that it took two months for PSA to start to tick up again. So I restarted Xtandi and I’m back to undetectable, so much for that little experiment.
I look at the side effects as substantial but tolerable given the alternative. And if my cancer takes off again the side effects of the treatments required at that point are likely far worse. So pick your poison, literally.
Ed
Another way of asking this might be: how do we balance the risk of damage from having hypogonadism with risk of damage from NOT having hypogonadism?
We shouldn't totally ignore the possibility that, for some men, ADT might bring life-shortening processes into play, like greater odds of developing diabetes. And the insulin resistance and other metabolic changes sometimes brought on with ADT might ultimately help feed the later progression of cancer.
Doctors can assess the risk of an ADT vacation, but don't expect them to include your QoL in their treatment plans. With PCa as advanced as yours, I would easily be convinced that you would be taking a substantial risk, but only you can say if that's a reasonable thing to do.
FWIW, I was miserable beyond words (suicidal) on ADT. When I told my doctor that I was quitting half way through, he told me that I was taking a risk, to which I replied, "I know this may sound insane, doc, but I really don't give a shit; I can't stand this any longer." Of course, my PSA wasn't 1000 and I didn't have distant mets.
In the likely event that I have to do this again, I've decided to use high-dose transdermal estradiol.
Best of luck to you.
Yes go with a trial of the estradiol. Much better!
I switched to estradiol patches to avoid the side effects of Standard of care ADT. Undetectable psa for over a year.
Look at it this way: It's like having a second wife for life.............
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 09/26/2020 11:35 PM DST
Unless you know for sure you can replace with some other proven medication I would keep the status quo. First is to have a life...the qol is no good if you are in bad shape. I might consider Casodex plus Finasteride plus a monthly Lupron shot. These drugs usually drive PSA down radically and also have very little side effects.
Axumin PET scan with undetectable PSA
PSA Undetectable
PSA of <0.1 undetectable?
Prostate RP 6 Years psa Undetectable Recent .2 Options?
Undetectable PSA is back
