ADT Vacation : The time has come to... - Advanced Prostate...

Advanced Prostate Cancer

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ADT Vacation

TomTom1111 profile image

The time has come to find out if my treatments were successful or not.

Today I received my final 3 mo Eligard injection and will no longer need to take the daily abiraterone acetate ( zytiga) and prednisone. I have a withdrawal schedule for the prednisone that I developed with my MO.

My psa <0,01 and T < 1 ng/dl. Pretty good result I think.

In addition to ADT + Zytiga. I underwent a RP followed by 39 IMRT sessons. In June and Oct, Nov 2019 respectively.

My post RP pathology was G9 pT3bN1M0 with ECE and SVI. A Terrible result at the age of 53 IMHO.

It's hard to believe it's been 2 years. How time goes by so fast?

Anyway. wish me luck. I'm going to need some.

53 Replies

Good luck!

Positive energy your way, hope to hear a good report....

Congratulations! On to a durable remission.

I’ll be thinking of you. I’m pretty much in the same boat. Got my last 4 month Lupron shot in April. Completed RT about 18 months ago and it’s time to see if it was effective and puts me into a nice long remission. Don’t know about you but I’m rather nervous. Certainly glad for the vacation but the security blanket is being pulled away.

Good luck to us both!!

Thank you. And yes, I'm a little nervous but this eligard shot won't start wearing off until November.I'm going to use this 90+ days to begin an anti-cancer regiment that my MO asked me not to undertake while on Zytiga.

I'll reciprocate the thought of a long durable remission for you as well.

Good luck!

treedown profile image
treedown in reply to TomTom1111

Where did you get the regiment?

TomTom1111 profile image
TomTom1111 in reply to treedown

I started to assemble a list of supplements that are generally accepted as having anti-cancer properties. I was asking my MO about them. He wasn't against them in general, he just didn't want me taking them while I'm under treatment. I'm sure your getting most of these yourself thru diet. I just want to add a supp to ensure I'm getting a consistent amount.

Best of luck on your vacation. Send a postcard and keep us updated.

Psychmed profile image
Psychmed in reply to GoBucks

I had my last eligard shot last November after 3 long years. Im starting to get my mind back although my wife might have different thoughts. And my strength is improving. Now the waiting and praying begins. Mike

TomTom1111 profile image
TomTom1111 in reply to GoBucks

Thanks...and Go Penn State!

GoBucks profile image
GoBucks in reply to TomTom1111

LOL!

Best of luck to you. It seems you are at a good place now.

Good luck for a durable remission.

Wishing you the best. Please keep us posted. ☘️

My daughter bugged me to get a DNA testing done 2 years ago ( 23andMe). Anyhoo, I thought I was 50 Irish and 50 German. Turns out I'm 85 Irish and 5 German.

My wife works for and Irish company ( icon clinical research)

One of the first 50 employees i think. Trying to get to Ireland but she doesn't want to go...so now I'm planning a trip with my travel buddy...it won't end well...we like the 🍺 🍻 🍺 🍻 too much.

Oh yeah...thanks for the kind words.

Ah we are cousins so. 😃😬Let me know when your visiting. 💚

Stay well and stay vigilant in the mean time Tom.

Tom I have had nearly ‘identical’ pathology and treatments to you and Fireandice123, except 4+3 instead of 9.

Of course there is no identical pathology, but it’s close. I had my last 3 month Eligard in September of ‘20. Testosterone stayed below 50 until April when it climbed to 250 and as of June 510. PSA remains undetectable so far.

Good times indeed! Libido is still not great but is slowly returning. But I feel tremendous, all side effects gone and as you know it was a long list.

I tolerated the ADT well but put on some unwanted fat despite being very athletic and mostly great diet. Just had to start eating less and did…I have committed to caloric restriction and almost no carbohydrates and it’s working well.

Having T back is great but I’m not naive. I’ll enjoy every second of this, knowing it could change at any PSA test in the future.

Future! In a sense, this word is no longer in my vocabulary. I’m happier for it. I think you know what I mean.

Which is, I do what I can and leave the results alone! The fitness, the family and friends, work/lifestyle, the supplements, the diet all of it.

The way I see it, If I do my best and it comes back anyway, at least I won’t be wondering if it could have been different with better effort on my part. Knowing I’m doing what I can is very important to me and comforts me. Do what comforts you and enjoy your recovery!

London441 profile image
London441 in reply to London441

P.S. My only advice-

1. You’ve been through a lot physically, so know your numbers and if/how they’re moving! Periodic blood counts, lipid panel, Dexa scan for body composition and bone density, BP, glucose, dental hygiene etc.

2. Let the supplements be just that. Diet and exercise are vastly more important than supplements. Great luck to you!

TomTom1111 profile image
TomTom1111 in reply to London441

Thanks for the reply. We are similar in other ways too.

I'm very active and have maintained a decent diet. Mostly plant based. I have been eating more meat lately but during this next chapter in the fight against this dastardly disease, I'm going to clean up the diet and hit the gym more regularly, along with getting in my bike rides.

Again, thanks for the advice and encouragement.

PS. It feels great not having to take those 4 horse pills every morning.

bean1008 profile image
bean1008 in reply to TomTom1111

Just took my four pills moments ago. You guys give me hope that this regiment won’t be forever! Best wishes!

treedown profile image
treedown in reply to London441

Nicely said, I agree with you on all of it.

At the age of 53, I too had RP with a Gleason 7(3+4) Path T3bN1M0. That was over 13 years ago, turning 67 in a few months. All the best.

TomTom1111 profile image
TomTom1111 in reply to Ramp7

Thank you....I'm encouraged by your longevity.

London441 profile image
London441 in reply to Ramp7

Nice!

Best of luck!

Best of luck fellow warrior....may you keep the beast at bay...let us know how it goes. Sending good vibes today....

Thanks Superman!

Kaliber profile image
Kaliber in reply to Boywonder56

💪💪💪

I felt the same way and wanted to know what the 'net' result of treatments were.

For me, the only way was to 'vacation' and wait (and hope).

I got my answer about 2 years later - a BCR - but I don't regret that decision.

Today - I'm nearly undetectable (four years post Dx) and still dropping on Casodex monotherapy.

Almost feeling 'normal' again ......

Wishing you all the best my friend. You are an inspiration.

TomTom1111 profile image
TomTom1111 in reply to Mascouche

Thank you for the encouragement. See my private message.

Had to stop and make sure I didn’t type your original post. We are almost exactly in the same boat (but you’re a few months ahead of me). I too am 53. Had RP in October. Pathology was identical (G9 pT3bN1M0 with ECE, SVI and positive margin). Had 39 IMRT salvage radiation sessions. Just had my 3rd three month Lupron injection and take the 4 horse pills daily. Right now my PSA and testosterone are negligible as well. Looking forward to the ADT vacation —and when the time comes I too will hold my breath and pray for a long remission.

Please keep us updated on your journey and I wish nothing but the best for you!

What was the duration of your ADT regimen?

Thanks for the reply...It is shocking to see how many members are the same age (or younger) than me with this terrible disease...so many new treatments and treatment protocols have really changed the outcome landscape.

To answer your questions...2 years that commenced July 2019 and officially end in October 2021 when this last Eligard shot wears off.

Are you still working? Working while on ADT is an accomplishment that often gets overlooked.

I could not agree more. Like you I am hoping the longer I can push this disease back, the more options I will have when I need them most. I’m sure you’re thrilled to be ceasing the ADT regimen but completely understand any nervousness/apprehension stopping all therapies and waiting. I still have a little ways to go but I can’t wait to be done with it for all the obvious reasons.

As for work, yes, still doing at least 50 hours a week at the office (I have a law firm) and as much as I am exhausted by the afternoon, it keeps my mind off of the crappy situation we share. My plan has always been to slow down and semi retire at 60 if I’m able, but I’ve been rethinking that and will probably try and move that goalpost a little closer.

Your age and story are pretty much the same as mine. Also 53, had 38 imrt (finished this week) and will be having my 3rd 4-mth injection in September.

Wow, crazy to see all of us relatively “young” guys in the same boat. Reading these posts educate and inspire me. Keep them coming!

Wishing you great good luck!

🙏❤️

Sorry that you were affected at such a tender age.

Best of luck.

Keep in mind that if you DO have a recurrence some years down the line, it's highly likely that there will be newer and far better treatment options.

Thank you and agree with your assessment on the treatment landscape.

I wish you all the best. I can report to you that with Gleason 9 disease my ADT “vacation” was short-lived and worthless to me. Less than a year passed until a rapid rise in PSA put me back on ADT for life.

TomTom1111 profile image
TomTom1111 in reply to tallguy2

Yep...definitely have some reservations about this but I think everyone has to give it a shot. The one difference now vs 2012 was Zytiga out of the gate was not SOC...well see if that makes a difference.

Thanks.

TomTom1111, I'm curious, if you don't mind sharing....was this the plan of action from the start of treatment - to only do ADT and Zytiga for a specific amount of time or when the numbers got to a certain point, or did you decide on this strategy later? My husband had similar starting numbers, G9 4+5, pT3b, pNO, positive margins with negative lymph node, PSA at diagnosis was 70. Did RP, salvage radiation and now Zoladex without Zytiga since Nov. 2020 with good response, PSA currently .04, no distant mets according to PSMA Scan done Oct. 2020. At MO appointment today, when my husband asked about the possibility of a vacation down the road the doc just said he would only consider that if he wasn’t tolerating ADT well.

TomTom1111 profile image
TomTom1111 in reply to mrssnappy

Yes. After failing the RP, which really didn't come as a surprise to me. I started 2 years of ADT+Zytiga and 39 IMRT. That was the original treatment plan and it's right out of the NCCN guidelines.

London441 profile image
London441 in reply to TomTom1111

Yes the NCCN guidelines Tom…which are probably due for a change.

The difference in my treatment was a clinical trial with the ADT and Zytiga commencing only a few months after RP, PLUS chemo, followed by IMRT a few months after that-EVEN though I was undetectable post op.

This-very aggressive adjuvant treatment without waiting for RP to fail-I believe with become SOC for guys like us until something actually different comes along.

London441 profile image
London441 in reply to mrssnappy

Mrs Snappy, if YOU don’t mind sharing, how long after RP did he begin the Zoladex and the radiation? Were they started at the same time or apart? (My details below)

mrssnappy profile image
mrssnappy in reply to London441

London441, it was 7 months after RP that he did salvage radiation and then 18 months after salvage to Zoladex. You can read the details in my profile. We are just over 3 years out from diagnosis.

London441 profile image
London441 in reply to mrssnappy

Thank you, I should have looked! Seems you’re doing well. We should all have a Mrs Snappy.

Hey Tom. Same pathology and treatment plan except I am a bit older. 68. Stopped Lupron and Zytiga 3 months ago. Having my 1st PSA test tomorrow. 👀 A bit nervous! Handled ADT very well. Feel the same now as I did 3months ago. Good luck to both of us!

TomTom1111 profile image
TomTom1111 in reply to keepinon

Excellent...here's to you getting a psa <0.1 resulte.

keepinonononon...and on.

London441 profile image
London441 in reply to keepinon

3 months ago is nothing, though I’m glad you feel the ‘same’ if that means good. You should feel quite a bit better yet in a few more months when it actually starts wearing off.

It depends more on your testosterone level at diagnosis and how long you were on Lupron more than being 68, if your health is good otherwise.

Higher baseline T and shorter Lupron duration are favorable.

🙏🙏❤️

I just started my vacation after 2 years of bicalutamide and eligard, with undetectable psa last 9 months. Praying for miracle and permanent vacation!

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