Eliminating ADT.

[Stevegr]

Is there ANY PC Therapy that does not use ADT ? I have been on ADT implants for over 2 years and will start Xtandi due to increased PSA's. I would love to stop ADT due to SE.

[Tall_Allen]

There have been trials of monotherapies with the 2nd generation hormonals. They usually work better combined with ADT, however.

[GP24]

You could try Xtandi monotherapy, this should have less side effects than ADT. urotoday.com/transformative...

[janebob99]

Which side effects are worst for you?

[Stevegr]

I accept the no sex but the waste bulge is driving me crazy. I am an exercise nut who has been trying to reduce this but it seems unavoidable. I know compared to some this is nothing but I would like to have a better situation IF ADT was stopped,

[dhccpa in reply to Stevegr]

Major dietary changes lef me to shed 50 lbs. over five years instead of the predicted weight gain. I also exercise, but exercise alone won't do it, in my opinion (although great for mitigating SEs and possible preventing or slowing progression).

[Hidden]

I know exactly what you're talking about and the culprit is Lupron (ADT) ...Sure it saves your life, but at what cost?...No energy, no libido, and 12 or so pounds around your middle that won't come off no matter what you do....The missing ingredient is Testosterone...I've been stage 4 for 4 1/2 years and 8 months ago I'd had it with my quality of life so I told my Oncologist no more ADT....I'd been reading about high doses of Testosterone (BAT) and some success with it treating metastatic PC....Google Bryce Olson "A patients story"....watch the vid and read his post...So I told my Oncologist I wanted to try the BAT....Almost instantly after the first injection of testosterone it was a different world...Way more energy, felt 100x better, and a few nights later I even "Got Lucky"...the tradeoff is (in my case) my PSA started to go up...I had the BAT injections for 7 months (During those 7 months the 12 lbs went away from my middle) ....You get 400mg of testosterone every month....When my PSA got to 132 my Oncologist stopped the BAT and I just did nothing for 3 months (No ADT)....My PSA went down to 31....Just yesterday I started BAT again, and today I've got that "I'm alive feeling again"....I'm not ever going back to ADT...Quality of life is more important to me than feeling like crap to live a few months longer....I'm going to continue with the BAT, and next month I'm going to start Pluvicto...So we'll see what happens then.....Best of luck....Check out BAT...

[CANAMA in reply to Hidden]

Sorry to inform you that Bryce Olson (of "A Patient's Story") died from PC about 10 months after his video was published.

[Hidden in reply to CANAMA]

Yea I knew that….He was a fighter and wasn’t afraid to try different options and I admire him for that…..RIP Bryce

[dhccpa in reply to Hidden]

You talked your oncologist into BAT? How did that go down at first? Mine has been resisting me; I think he's a bit afraid of it, and maybe his institution won't allow it.

[swwags in reply to dhccpa]

because it's not an SOC treatment and could leave him legally liable as well as at risk for losing his license to practice. It's an experimental treatment so if you want in, find a clinical trial.

[dhccpa in reply to swwags]

I've been in contact with Denmeade. I could see him without a clinical trial, but haven't yet decided to make the trek to Baltimore. And I'm not CR just yet.

[Hidden in reply to swwags]

I’m not sure what you say is correct…please show some documentation that BAT is an experimental procedure and the Oncologist could be held liable (and lose their license) if things went south….Its covered by Medicare and I don’t think they’d cover if it was experimental…I’m definitely not in a clinical trial…

[swwags in reply to Hidden]

not my job to do your research. Google it.

[Hidden in reply to swwags]

Pretty snarky reply , but no biggie..I just wanted to know where you got your info.,.Personally I could care less if BAT is experimental or not.,,,as long as it works and can help …I see where dhccpa contacted Dr Denmeade regarding BAT …He said it was possible to see Dr Denmeade without being involved in a clinical trial…So doesn’t that take “experimental” off the table?

[Hidden in reply to dhccpa]

When I first found about BAT by googling “High doses of testosterone for metastatic PC “ and saw that they (other Oncologists ) were having promising results with BAT I told my Oncologist that I wanted to try it….As I was tired of being tired after 4 years of Lupron..,As it turned out, Bryce Olsons (A patients story) doctor was the head Oncologist where I go ( UCSD San Diego) …My doc is a wonderful guy and brilliant cancer doc.,.He agreed it was worth a try…Had he not agreed I probably would have gone somewhere else…maybe I’m a little different than many guys on this forum…I want quality of life , not staying alive at any cost…I take monthly labs at UCSD and see patients rolled in with blankets on to get Chemo or whatever just to stay alive…That’s not for me…In this PC journey you have to be your own advocate….Remember, You’re still in control…4 days ago I got my Bat shot…My PSA was 31….Most oncologist would never allow a BAT shot with a PSA that high…Were gonna monitor it and we’ll stop if the PSA shoots way up..,,But meanwhile I feel 100x better with testosterone in my system…..I’m going to give Pluvicto a try the first week of July…So we’ll see what happens then.,,.As far as your Doc saying no to BAT I say …Nothing tried nothing gained.,,,,Eventually this disease is going to get us all,…I just want the most quality of life I can get until then…You are in charge.,,..best of luck

[dhccpa in reply to Hidden]

Thank you, good answer.

[Jewelrylady in reply to Hidden]

Can you share your doctor’s name. Husband switched to UCSD. Also, do you have a urologist there?

[Hidden in reply to Jewelrylady]

My oncologist is Tyler Stewart …also at ucsd there’s Renna MacKay..,both top notch PC docs….I do not have a urologist there, but they are in the same office….

[Jewelrylady in reply to Hidden]

Thank you. He decided to go with Dr. McKay.

[Hidden in reply to Jewelrylady]

She is great!..Brillant Oncologist..,good selection….at the time (over 4 years ago) when I was referred to ucsd (by the late Dr Nick Volgelzang) I tried to get Dr MacKay but appt was too far out so the new guy in the office was Tyler Stewart…Super guy , great Oncologist and has become a real friend…,I’m very happy with the ucsd facility…,

[Jewelrylady in reply to Hidden]

Good to hear! We had heard very good things about her. Did you go to their symposium in February at Park and Market?

[Hidden in reply to Jewelrylady]

No…I didn’t make it

[Nwdx in reply to Hidden]

"I know exactly what you're talking about and the culprit is Lupron (ADT) ...Sure it saves your life, but at what cost?...No energy, no libido, "

I know someone who lost 150 lbs on those new weight loss/no hunger drugs- no idea of long term effects but it is saving her life of morbid obesity in her case.

My heart goes out to you and others like you all over this forum, it's truly awful some of these stories of treatments, and this reinforces my own decision, reading these posts and talking to others are very helpful for me and those who discovered before treatment that "at what cost" of QOL, and are not afraid to say it- thank you for sharing your high PSA numbers yet living life- with an ok quality of life except the awful libido part. All the best wishes for you, enjoying all you can.

[Ianrs]

I have taken xtandi for 3.5 years as part of triple therapy (plus initial radiation to my prostate and 3-monthly zolodox jabs) to respond to metatistic (3) PC. The main side effects are erectile disfunction, fatigue and aching legs. Limited hot flushes. About a year ago after discussion with my oncologist I reduced the daily dose from 160 mg to 120 mg. This reduced the side effects; although they remain present they are manageable. Various aches and pains - but who knows if its the medicine, the cancer or getting older. I asked about ADT vacations but the onco said no.

[Hidden in reply to Ianrs]

I think all cancer oncologist should have to take a round of ADT just so they knew how us PC patients feel…

[swwags]

I recently went on a 3rd generation hormonal. Darolutimide aka Nubeqa. What a world of difference. To date, no side effects, none. belly fat from Abi s going away. I feel normal again,

[Stevegr in reply to swwags]

I am amazed at you results from Nubeqa as I have read many articles saying the the SE were worse. Could be you are lucky?

I need to take a new round of medicine to stop my PSA increase ,25 to .89. I have been on ADT for 2 + years with just the normal SE but I am a gym rat so maybe that is the reason. I am concerned about the midriff increase which keeps increasing regardless of what or how many exercises I do. I am deciding what to do next Nubeqa or Xtandi. My Onc wants to try Xtandi first then switch if needed. Do you know if this switch possible ? Any info would be appreciated.