treedown7 days ago

For me I liked being off the drugs for over a year. It did let me take my mind off my disease even with a steady increase to 2. I am still deciding if that was a good thing or not.Now I am going back on ADT and PET scan found 4 spots on my spine that I am radiating next week. That said, nothing was a surprise and I am doing well in general. Its not hitting me as hard as the first time. Maybe ADT will change my emotions but kind of taking it in stride at this time.

SLIMPICKEN in reply to treedown6 days ago

son of a gun! Knock it out!

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Tall_Allen7 days ago

The open question is how long it will take your T to recover. Good luck.

6357axbz in reply to Tall_Allen7 days ago

TA, do you see a slow T return while on a ADT holiday as a good or bad thing? On the one hand one purpose of the holiday is to benefit from increased T. On the other hand if T is slow to return your body gets a longer break from the drugs with less fuel for PCa and, therefore, less likely hood of progression.

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PGDuan in reply to 6357axbz7 days ago

I had been thinking about this same question.

A few months ago I asked my doctor if I should take something to moderate my T after coming off the Nubeqa and Degarelix. I was thinking that a "moderate" level of T might be the best path -- feel better but not as much fuel for the PCa.

He wasn't too keen on the idea. He said its best to enjoy the holiday, let T get back to normal, and then if there's still PCa its best to know so it can be treated.

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6357axbz in reply to PGDuan7 days ago

I agree with your doc. I think I’m pretty much in the same boat as you.

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TalentedITGuy in reply to PGDuan7 days ago

As someone on a similar path as yourself, I find the response from your doctor well reasoned.

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London441 in reply to PGDuan6 days ago

Exercise is a major factor here, cardiovascular and especially weight training. It can’t be overemphasized. It helps your T to recover faster and better, and helps keep the Pca at bay along with the co morbidities the ADT puts you at greater risk of.

Hopefully you were already doing it since exercise also lessens and often negates ADT side effects, thus minimizing the contrast between low and high T.

Too many guys basically hope for relief solely from stopping ADT. Especially since we are older this is not a good bet. T levels were naturally falling already and recovery can be very slow.

I would look at any vacation as an opportunity to get stronger and fitter. The same effort will produce better results, and provides a kaleidoscope of advantages should you need to return to ADT later.

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PGDuan in reply to London4416 days ago

100% agree; thanks for the perspective. I'm still pretty fit, surfing quite a bit. Just finding it harder and harder to get going...

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Tall_Allen in reply to 6357axbz7 days ago

Good question. It all depends on how you feel. Some guys feel like their old selves with T of,say 150, while others need T=700 to feel back to normal.

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jac_j_sp in reply to Tall_Allen7 days ago

Well, I just did the experiment over the last 3 months.

PSA Nadir of 8 after Docetaxel and Eligard. Stable at that range 8 - 9 over 18 months.

Testosterone over same period around 0.2.

After 2 month break of ADT Testosterone still < 1 and PSA around 9.

After 3 months break T of 630 ng/dl, PSA 27. A little concerning.

I did another blood test today and expect increased PSA and T levels.

I will resume Eligard tomorrow.

I have always been of the opinion that ADT vacations/intermittent are the worst of all worlds. T does not recover fast enough for most people but PSA will almost always rise alarmingly.

I would like to pursue BAT therapy but being in the back water of Australia no MD's that I know are willing to put their balls on the line to help me. So, if any one knows someone in Australia please pass on their details.

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6357axbz in reply to jac_j_sp6 days ago

I’ve been off Lupron for a year and off Zytiga (abiraterone acetate) for 8 months. PSA still undetectable. T around 50. PCa behaves differently in most of us.

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jac_j_sp in reply to 6357axbz6 days ago

Yes I see your T has remained effectively castrate hence no impact on PSA. Hope it remains that way.

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Teacherdude726 days ago

This is the first time I have heard of a vacation from Nubeqa. Can anyone tell more about this?

Brundo6 days ago

My father is in the same boat. He started Xtandi almost 3 years ago and has been undetectable ever since. He wants to go on ADT vacation , but we are afraid. His dr. mentioned it long time ago , but never said anything else after that...

SLIMPICKEN6 days ago

It’s risky! Imho … To vaca or not to vaca? Personally , I would not stop adt until at least five years clear .. I did the orch after two yrs of Lupron . I continued on tak-700 for over 7 yrs until I stopped it eight months ago . Men dream of T returning again . I won’t feel T again unless I inject it . My doc thinks that it is crazy for patients to inject T . I started out in k failure seeing how bad pc can be . Out of my four medical oncologist none suggested a vaca for me .. old school says if adt is working don’t stop it . You just might be very different than I am ? Stronger than I was? . It took me an orch and 7 yrs on adt to finally drop it . My new mo just told me that all it takes is one bad pc cell to start up the engine again . We are told that we can have 2-3 million pc cells at any time hiding from any scans .. A vacation in theory sounds great . I can’t tell you how many a fine fellow do so ,and then get an immediate uptick and regret it . It’s your life , to do as you please .. I wish you luck !

Magnus19646 days ago

I am not a fan of ADT "vacations". You are only giving new lines of cancer cells a chance to find a work-around to the drug. If an ADT drug is working stay with it.

Magnus

Nusch in reply to Magnus19646 days ago

Also not after IMRT/VMAT to prostate bed and pelvis, two years of ADT and undetectable PSA to find out if cured or not?

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Magnus1964 in reply to Nusch5 days ago

There is no "cure" for prostate cancer. Stopping ADT will only give the cancer a chance to return. It will do that anyway but why give it the opportunity to do it now.

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6357axbz in reply to Magnus19645 days ago

stopping ADT May support growth of ADT sensitive cancer cells which could suppress growth of resistant cells which could result in a ADT recharge once it’s restarted. That was, more or less, the premise originated by Robert Gatenby

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Magnus1964 in reply to 6357axbz4 days ago

But any new cancer cells may find a work-around to the treatment. Therefore, restarting the treatment may prove ineffective.

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6357axbz in reply to Magnus19644 days ago

or it may delay resistance. That was Gatenby’s premise.

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Nusch in reply to Magnus19645 days ago

There are different opinions about cure, even in this forum. Saying this, cure for me would also mean long year remission or slow growth to survive.

Why do you stop ADT, when you don’t believe in cure?

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Magnus1964 in reply to Nusch4 days ago

You don't stop ADT as a "vacation". You only stop ADT when it fails.

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Nusch in reply to Magnus19644 days ago

Hm, but iADT is quite popular isn’t it?

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Magnus1964 in reply to Nusch4 days ago

I don't know how popular it is, but I would not recommend it. Just one persons opinion.

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TalentedITGuy in reply to Magnus19644 days ago

The studies that have been conducted show it's no worse that continuous ADT. The pca patient with very low volume non-metastatic pca can utilize IADT with minimal negative consequences, if any at all. The consequences of being on continuous ADT are well know. I've discussed this both of my MO's and they are very comfortable with me pursuing an IADT treatment protocol.

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Magnus1964 in reply to TalentedITGuy3 days ago

At what durations are the intermittent points.

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TalentedITGuy in reply to Magnus19643 days ago

That has to be discussed with the MO. For me, ideally nadir psa < 0.1 to stop ADT and 2.0 to resume.

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6357axbz in reply to TalentedITGuy3 days ago

Based on my cancer I would wait for my PSA to go from undetectable to no greater than 0.5. Then get a PSMA scan, probably Pylarify, to identify new tumors.

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TalentedITGuy in reply to 6357axbz3 days ago

Did that when I first recurred. My thought is my cancer puts out a lot of psa while still very micro metastatic. After I start a vacation, I'll wait till it hit's 1.0 and then schedule the psma scan...hopefully it'll pick it up. The real question is, is not knowing better than knowing?

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Magnus1964 in reply to TalentedITGuy3 days ago

But at what time interval do you resume?

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TalentedITGuy in reply to Magnus19643 days ago

Right now I'm leaning on 2.0. It depends on how the pca reacts after my T returns. My T didn't begin to increase until I passed the 230 level which I reached in about 3 months.

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PGDuan in reply to TalentedITGuy3 days ago

Thanks - this is what I heard previously and will confirm with my primary oncologist and get second opinion(s).

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TalentedITGuy in reply to PGDuan3 days ago

After my first, and only recurrence, I sought out a second opinion fom a top research MO. If you're near NY...try Wassim Abida at MSK NYC. He's a young guy with impressive credentials...at treatment decision time, I schedule an appt and discuss his ideas. If you select a research MO to consult with, they know all the best Clinical Trials too.

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6357axbz in reply to TalentedITGuy3 days ago

There are both advanced PCa (Stg IV distant metastatic) patients responding here as well as patients with and the curable kind of PCa. We need to be aware of who we are listening to.

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TalentedITGuy in reply to 6357axbz3 days ago

Well, my only reply would be this, if considering IADT, for me at least, this implies cancer that in not cured and is now in management stage of treatment.

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PSAed in reply to 6357axbz3 days ago

Excellent point.

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Boonster6 days ago

The thing about ADT is this: sooner or later, the cancer cells not killed by ADT will gradually become more and more numerous.

We become castrate resisent even if we keep on ADT. The resistent cancer cells will keep growing even when the amount of testosterone in the body is reduced to very low levels.

I'm hoping the adjuvant SBRT I had along with 2-3 years of ADT will put me in long-term remission. ADT will not be enough, but the combination of SBRT and ADT just might be.

slpdvmmd5 days ago

Given you history I agree with the no ADT vacation side of the argument. Your story also drives home the risk of Gleason 7 as a 4+3. I think we are all individuals but my testosterone has been pretty much undetectable for 5 years now. I have continued to lift weights, hike, backpack, ski (works as instructor in the winter) and do surgery two days per week despite the lab value. I think you just can't allow yourself to stop!!

PGDuan in reply to slpdvmmd5 days ago

Thanks for the input. With this disease we're always learning new things.

To be honest, I thought IADT was kind of straightforward -- that IADT had been established as "noninferior" to continuous ADT. No better or worse than continuous in regards to overall survival, but some hope to recover and improve quality of life.

Still, like every decision point on this journey, the more I dig in the more I learn. Glad I got all this feedback as I'm thinking harder about it.

I just read this study (thanks to Tall Allen's website that linked to it). This study implied IADT may well be inferior, but not enough data to prove it.

nejm.org/doi/full/10.1056/N...

Will get "second opinions" from a few experts and look for any other more current studies....

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treedown in reply to PGDuan5 days ago

The thing about IADT is being clear when to restart and if the insurance company and you Dr are on board with that. I will consider if presented as an option, which I doubt now, but I will be clear when I will restart ADT which would be earlier than I am doing so now. That said I am not sure either I would have been approved for it prior to hitting a PSA of 2 to co firm recurrence.

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TalentedITGuy in reply to PGDuan5 days ago

The area of uncertainty, at least as I see it, is many of these studies are performed in the metastatic setting.How it translates to those that are recurrent and clinically nonmetastatic is the question I have.

I am working under latter and hopefully will start another vacation after this next eligard injection. That is, if my pca cooperates.

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slpdvmmd in reply to PGDuan5 days ago

Non inferior really distills down to there not being a significant P value.

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