Adt

[nuc1111]

Anybody quit adt against medical advice because of quality of life issues?

Thanks

[mrscruffy]

I think slow, agonizing death is a worse quality of life, but in the end it is your choice. Thought about it but loved ones vetoed that idea

[nuc1111 in reply to mrscruffy]

Thank you

[Hidden]

One of my doctors said they have patients that instruct them they don't want it at Mayo. And they abide by their wishes and still treat them, just not with ADT. So, it happens.

[Shooter1]

Just got orchiectomy to get off lupron for life. I did cut my xtandi by 1/2 against drs orders. I had no QOL and was a complete invalid.. now still on it and it seems to be holding my old mets at bay, but new mutations are eating my bones.. Getting a RO involved and radiation therapy gave me 6 mo. of pain free life. Now zapping 2 more painful mets/ I hope it will kill the pain again... Life Is Good, pain not so much.

[P419597s in reply to Shooter1]

Hi. For whatever it’s worth, I have heard that there is the possibility of restarting/resensitizing your body to ADT by doing a series of high testosterone cycles. I know that at first it seems counterintuitive since our prostate cancer is hormone driven. However, the reasoning goes like this… ADT kills most of the cancer cells that are sensitive to a low or zero testosterone environment but the remaining cells adapt by creating an enormous amount of androgen receptor capability. This makes those cells (the ones that eventually become castration resistant) very susceptible to high doses of Testosterone. So cycling in a high dose or series of high doses of testosterone floods them and kills them which then leaves those cells back in the minority which allows the ADT to continue to deal with the castration sensitive cells. Theoretically a fellow could continue cycling from high to low thereby keeping ADT in play indefinitely (until something else kills us). You can google “Bipolar Androgen Therapy” and see that several big medical institutions like John’s-Hopkins have done clinical trials on it and it works. And though it’s not “standard of care” yet, I know a fellow who had RP, Gleason 9, and is doing BAT on his own (it’s not a complicated methodology) and he is having good success with his ADT. In my humble opinion it’s worth looking in to. I certainly am because I’m in the same boat. His name is Russ Hollyer. You can also get in touch with him by joining the Facebook group “Prostate Cancer-Latest Research and Treatments” or just ask him to friend you on Facebook. He’s a wealth of information. If there’s options out there, I guarantee you that Russ has studied them. Here’s a link to his journal/ebook that describes exactly how he is doing his BAT. God bless you bro.drive.google.com/drive/fold...

[Shooter1 in reply to P419597s]

Thanks, My MO told me years ago that he would not do them for me...lately he had mentioned them as a possible treatment... Well, I'll finish my RT first and them maybe Ra-223 since I am low load but keep getting new mets 1 or 2 at a time..

[Hidden]

Any man on adt thinks about quitting. Me, 7 yrs on ..

[Shooter1 in reply to Hidden]

Snip/snip--can't get off now... Love you Scott.

[Hidden in reply to Shooter1]

I sniped and I’m still on adt ?😳❤️

[Brysonal]

There is a guy called Chris J on the UK site who has documented in detail his journey following a failed RP and decision to come off ADT until he actually had pain from his mets which was quite some time with no treatment and a rising PSA. Back on ADT now but maxed time without it

community.prostatecanceruk....

May be worth a read of his journey

[NotAlwaysSunshine]

No. #Survival / Longer life.

[Hidden]

Never crossed my mind. In fact MO had to sell me to stop after six years +.

[CAMPSOUPS]

When you know your PSA is rising, you have pain in your bones that you know is cancer growing, when you lose your appetite. The list goes on. Its not what I would call QOL.

I accidently didnt treat my PC for awhile. Didn't see a Dr. when I should have. I was miserable and actively dying. I didnt realize how much so until I began treatment and feel way better.

ADT wears on ya. I have been thrilled to be alive and to have bypassed a sudden death and having knocked on deaths door has always kept a positive spin on things for me.

Now that its been about 2 1/2 years I start to forget where I was and the ADT starts to feel like a burden. Feels like trying to walk to a destination in the rain and thinking when the hell will this rain stop. Life under medical care though even if it means ADT is a life spent much better IMHO. Why not deprive those PC cells their chance for as long as possible.

[Hidden in reply to CAMPSOUPS]

Pushing a giant snow ball up hill in a storm😳🤙🏽

[Tall_Allen]

It's called "watchful waiting." It is done by men with advanced PCa who are asymptomatic with limited life expectancy (<5 yrs) for other reasons. They don't take any medication until symptoms appear and die of something else. For men with advanced PCa and longer life expectancy, QOL deteriorates quickly without ADT.

[Hidden]

I was on it for 5 months. One day I decided that I would rather be dead than keep going with it. It's a very personal choice. I understand both sides.

After 5 months I tried Casodex and dutasteride. I was hoping that things would improve. I think they did a little but after another month my QoL hadn't returned so I injected some testosterone cypionate (there was a little research about hormonal interference from high testosterone). When I injected I thought that it was 50/50 whether or not I'd be alive in 3 weeks. I was very happy when my first PSA results came back. <0.01 and cancer scans in late 2020 came back negative. My PSA stayed around zero for a year until a slow climb to 0.17 in the summer of 2021. I started a modified BAT program (bipolar androgen therapy). My PSA dropped to zero, then up to .2, then zero... Every BAT cycle. When I am on the ADT phase of BAT I take some selective androgen modulators (SARMs). They don't seem to interfere and my MO advised me to keep taking them.

But this is my experience only. I'm hormone-sensitive and BAT is typically done in trials only and for CRPC.

And as I have learned from recent experience, I need to do a low-dose estrogen patch during ADT (0.05 mg/day seems good).

[ARIES29]

Oh yeah! My history is one of trying it first but I did not understand the seriousness of the disease I had at the time.One 3 month injection of Lupron worked wonders but after going to sleep while driving I did not continue. Then casodex with splitting headaches etc. So I forgot about ADT for years while the PSA climbed to 18.6. Then found LU-177, had two treatments & PSA down to 1.6.

Now four years later? on Firmagon once month & PSA is 0.3.

On vacation now as ordered by MO. Thankfully.

Then it is replaced with covid?

Life really sucks you know & the high moments were very few. But for my beautiful daughter I would not be here at all, now 9 years old last Dec.

[Hidden]

I was given a six month eligard shot in preparation for external beam radiation treatment that was supposed to happen a couple of months in. I changed my mind and chose HIFU instead, out-of-state. My local urologist told me to continue ADT for another year and a half. Nope. How would I know the results of the HIFU if I remained on ADT? I remain off ADT 5 1/2 years post surgery. Quality of life matters to me -- that's why I chose HIFU. My last PSA reading was 1.7. ADT could be in my future. I am 72 now.

[j-o-h-n]

Quality of life? What the fuck is that?

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 03/16/2022 7:46 PM EST

[2dee in reply to j-o-h-n]

Elusive2Dee

[j-o-h-n in reply to 2dee]

iIlusive2me....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 03/17/2022 1:56 PM EST - enjoy St. Patrick's day

[Hidden in reply to j-o-h-n]

I’ve heard tell of it? 🧐

[nuc1111]

😀😀😀😀