ADT Holiday?

[RunnerBiker]

I'm posting for my husband. Gleason 9, cdk12, reoccurrence 18 months after RP. Scans cancer in lymph node and possibly sternum. Had radiation and 2 successful years of Orgovyx and Zytiga. Dr says he can take a holiday from meds but my husband is concerned that the cancer will return without meds. Dr is fine with letting him stay on. He has to make a decision this month. Has anyone stayed on the meds long term? Other thoughts?

[Decktime]

5/22 my husband, age 65 was diagnosed with Gleason 9 with multiple distant mets and CDK12. His only treatment has been Eligard and Darolutamide (made available to us through a clinical trial) for 18 months. So far so good as far as the numbers go but his QOL is not good. We have considered a holiday but from what we've read at this point it will take too long for quality to be restored and the risk outweighs the benefit. I'd be interested to know what info you have. And I hope you find a path forward that you are both comfortable with.

[Justfor_]

The fully ON-OFF drug treatment suits docs as it takes far less of their time to manage. Implementing a Minimal Effective Dosage is too time consuming for them, so it gets ditched. It isn't rocket science though.

[Dachshundlove]

my husband has been off hormone therapy for 18 months and he now has what would be considered low testosterone. He also still has the hot flashes of a 55 YO woman. Life is good but not exactly like the old days.

what type of scan showed suspected cancer in the sternum? Were the affected lymph nodes inside of or outside of the pelvis? If the lymph nodes were inside the pelvis, and the sternum was ambiguous (not definitive for cancer) it is possible his cancer was locally advanced. If that is the case, it’s worth discussing recalibrating treatment based on that fact alone.

[Johnson411]

Yes, I have continued, now in year 3 of Zytiga, Lupron and Prednisone. Happy to keep it at bay.

[j-o-h-n]

Would advise, stay the course.................Please post more bio (age, location etc.) info regarding your husband. All info is voluntary but it helps us help him and helps us too. Thank you.

Good Luck, Good Health and Good Humor.

j-o-h-n

[SteveTheJ]

This is not a doctor-type answer but Lupron and Erleada both have a long half life. If you were to stop taking them today, it could be weeks or months before there would be any effects. You can continue getting regular blood tests and discuss those results with your oncologist.

[VHRguy]

I had a Gleason 9, 5+4, locally advanced (by MRI scan) case in 2013. IGRT 79.2 Gy, and ADT for 3 years. Relentless hot flashes, and grinding fatigue. Very difficult, but I knew it was only 3 years. Within 18 months, I'd also developed osteopenia, just short of actual osteoporosis.

After treatment ended, my testosterone recovered quickly (I was only 56). Two years later, my PSA was slowly rising. In my understanding, about the only remaining therapy for recurrence would be ADT, long term ADT. Like, permanent. I'm no fan of holidays, since it didn't seem wise to let the cancer grow for a chance at a few months of (hopefully) testosterone recovery.

So, due to apparently recurring G9 cancer, I chose permanent ADT by orchiectomy. No more testosterone, ever. That was 5 years ago now, and I still have an undetectable PSA.

To deal with side effects, I chose estradiol (active part of estrogen complex) as a replacement hormone. This has prevented ALL of the bad side effects of missing testosterone (well, apart from complete sexual dysfunction, but that was always part of the deal anyway). I have no hot flashes, better memory than I've had in ages, normal energy, and my bones have recovered to normal density. I do have some gynecomastia; this seems to me a small price to pay for long term cancer suppression

I'd be happy to chat further about my choices. These are not mainstream, to be sure, but I am completely happy with them.

[NorYug]

I'm in a situation similar to the OP. I was diagnosed Stage 4 (with a couple small bone metastases) about 4 1/2 years ago (given a prognosis of 3-4 years) and started on Lupron and Erleada. (My Gleason score was 7) My MO is not from a big name institution, but he seems to be very smart and very much up to date on the current science. I've also been seeing an MO from a major prostate cancer institution as a continuing second opinion (so that I wasn't just relying on a single doctor). Both have been telling me the same thing. "You have only minimal side effects and your PSA test results have been holding at near-zero for a couple years. Nevertheless, you'll probably be staying this course until Erleada stops working, or you die. Then, several months ago, I got a PSMA Pet Scan which showed no more evidence of the bone metastases or any other cancer. They both had the same reaction. They both said (separately) that cancer isn't cured , it's controlled and can always come back. However, they also both said that we should wait another year (meaning six more months from now) and then seriously consider stopping treatment. (I'm 75, by the way.) Even though I don't have any serious SE's, and I'm generally risk-averse. They're saying that the minor brain fog, minor fatigue and minor muscle loss will probably improve and I will probably just generally feel better.

My guess is that in another five months, they're both going to be leaning toward taking me off the Erleada/Lupron. I've been saying to them that my SE's are at least partially due to normal aging, so the ADT is far from debilitating. On the other hand, feeling better has an appeal and we would certainly continue to monitor both my PSA and testosterone, plus get another PMSA PET Scan after a year off the drugs so as to keep an eye on things.

Ironically, my main question over the last few years has been "Are you sure it would be too dangerous to take a break from the drugs"....partly to feel better and partly because it seemed like if there's a finite amount of time that Erleada would work, it seems like I could maybe extend it's useful life for me if I was able to take a break from it (and later returning to it). I don't think either MO is going to push me to take a break, but it seems very clear that my steadily low PSA results and the PMSA PET Scan cause them to believe that it's pretty low risk for me to stop, at least for a while.

I have six months before I cross that bridge.

[PELHA in reply to NorYug]

This was very encouraging to read. Husband also has a few bone mets that recently appeared. Next month will be his second Lupron shot and he is just starting Erleada. Does not sound like you had any chemo. He has not been prescribed that yet but we were asked to attend a zoom video on that process for future reference. Did your bone mets eventually go away or shrink to be undetectable?

His Gleason is 9 and PSA is 9.7. New to these treatments so still so much to learn! He is almost 78 but in great shape (lucky to be an ectomorph), doesn’t drink, active with exercise (regular weights but the cardio could be stepped up) and sexually quite functional (with the help of those little blue pills). If you didn’t know he had this you wouldn’t know he had this.

We have so much to learn though! This site has been a big help. Six years ago his prostate cancer was treated with radiation seeds, then a shot of Lupron. After three years the PSA started slowly creeping back up, though only this latest PET scan showed the mets.

If there’s anything else we should be doing (I will be asking about the triplet therapy at our next visit), please share. It is a constant struggle to get vegetables into this man and he is probably addicted to dark chocolate. Trying to stay positive and not worry too much.

Keep us posted on what you decide!

[NorYug in reply to PELHA]

I've never been on chemo. When I was first diagnosed Stage 4, I remember the MO telling me the good news was that chemo was necessary (at least at that point). My bone mets weren't visible on a routine bone scan a year ago, and again not visible on the PMSA PET Scan. In both cases, my regular MO characterized that as "full remission", but I took that with a grain of salt. Full remission is not "cured" and I don't think there is such a thing as "cured" prostate cancer.

I was originally diagnosed with PC in 2012, went through radiation, which took my PSA down to 0.6. It stayed there for four years, then started to go up very gradually until three years later it started to increase faster.

When I started on Erleada four years ago, triplet therapy wasn't Standard of Care. In fact, I think I started using Erleada pretty soon after it was approved for my condition.

I read posts here virtually every day, although most of it is over my head, so I'm not one to offer much in the way of advice. Sorry. I do know that my favorable reaction to Erleada is better than the norm, so I'm lucky, but not through anything I've done.

[PELHA in reply to NorYug]

Thanks. Very encouraging though. He’s only had Erleada for a few days but so far so good. Yep I have to keep looking up abbreviations mentioned here to know what they are plus distinguishing the various oral med options that end with mide.

This is a very helpful site!

[CANAMA]

In June 2019 my MO at MSK was adamant that I stop taking Lupron and Zytiga immediately without substitution. On that day I had been NED since 8/17 (after a 5/17 RP) and I have remained NED to date. A scary but worthwhile step.

[StayingOptimistic in reply to CANAMA]

Who was your MO at MSK?

[CANAMA in reply to StayingOptimistic]

Dr. Michael Morris.

[StayingOptimistic]

me too. I am on my second vacation. The first vacation lasted 20 months and then went back on doublet ADT for 6 months which ended in 11/23 and now on this second vacation but sometimes I get nervous that I am not on anything and try not to think about it.

[WillowHawk]

Just a sister of a patient wishing you the best… hugs. XO