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Advanced Prostate Cancer
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Really wanting a break from the ADT drugs

After RP in 2016 it was discovered my PC had spread into the lymph nodes, and it turned out to be grade 5. I started Firmagon and Eligard just a few weeks after surgery. PSA stayed in the 1.0 - 2.5 range for 20 months, then I went castrate resistant with a doubling time of 6 weeks. Started Xtandi, and it has worked amazingly well. Been at PSA 0.00 for about 6 months now. After 2.5 years on ADT, Im really ready for a break from the drugs. As all of you know, the constant fatigue and brain fog can really suck, not to mention fun things like weight gain, man boobs, tachycardia and heart palpitations. My Urologist is opposed to me stopping ADT (probably a money thing for him), and my MO says the jury is still out on intermittent vs constant ADT. Would be interested to hear opinions from the group. thanks

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Why not try it? For men with no detectable metastases, i ADT seems to be no worse than continuous.

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That's what Im thinking. I go in a couple weeks for another Firmagon injection, but I believe I will tell them no thanks. I am approved for another 6 months worth of Xtandi, so I guess I will just continue to get it and keep it stock piled for when I need to restart ADT...... hopefully I can get a 6mo to 1yr break!

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My MO told me that "no one is going to hold you down and inject Lupron." If you want a break, take a break. I won't say there's no risk, there is always some risk, but QOL matters too. Unlike many other decisions we face, you can always go back to ADT if/when that makes sense for you.

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If you do stop your treatments, you might ask yourself (and your MO), at what PSA threshold would you plan to restart the ADT + Xtandi? How often will you check PSA? Would you plan to get any advanced scan(s) just before restarting to see if there may be any new detectable "mets" showing up "hot" anywhere in your body? How would you feel about it if there were more "mets" than you anticipated, or perhaps some detectable "mets" that had spread to bones? Etc.

Just some thoughts...

Charles

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My doc at Johns Hopkins said come to him when PSA hits 1.0.

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Hey, I got my MO to stop the Lupron after 30 months and that 18 month "holiday" was great. Restarted in Dec 2018 as PSA got to 10.2 with T at 542. Last month T - 17 and PSA - 3.8. In my case, the PCa seems to be still responding to the T deprivation. Fight on y'all

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My husband stopped Lupron, Zytiga and Predisone last month after 18 months on it. He's going to have his blood checked every 3 months. He's very positive and happy to have a break. I pray his psa stays at 0.1 for a long time. The best to you.

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Your current status is just shy of my husbands. He's been on Zytiga for 18 mos, completed Lupron, Jevtana and Radium 223 (last treatment was 3/28/19). PSA has held at 0.01 for 6+ months. MO wants him to continue reduced dose (down to 1 pill a day, from 4) thru August. Unfortunately he was hit w/penomia TWICE, but like his MO, his lung Dr is AMAZING and has pulled him thru. We got the ok from MO to take a 30day break from Zytiga and concentrate on lungs (no mets to lungs thank GOD). He is very excited and looking forward to these next 30 days.

STAY STRONG ♡

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I'm glad he's doing ok and having a little break. Everything counts. A hug to you. You are not alone.🙏💛

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Did he have a RP, too?

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He had Prostatectomy in February 2011 psa remained undetectable for almost 3 years. 2014 he had radiation to prostate bed 37 total with a 0.5 PSA.

PSA continued to rise slowly. On July 2017 after Axumin pet scan and with a 8.7 PSA , it showed 2 metastatic lymph nodes in pelvis. He began ADT, Zytiga, Predisone plus 6 round of chemotherapy, when he finished chemo the 2 lymph nodes were radiated🙄 His Psa has been at >0.1 for 16 months🙏

It has been a long journey but, trying to get the best out of it and enjoying every single day. Looking forward for retirement in August 9, and to celebrate his 60 birthday on the 10. God is good. I hope this helps. You are not alone.

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Since I'm castrate-resistant, I don't see any value to me to continue lupron except it is considered a baseline for a clinical trial that I'm starting. "But even if you're castrate-resistant, it is keeping your testosterone down."

Whoop-de-do. I don't give a damn about my testosterone level - it's the stinking cancer that I'm concerned with and it doesn't seem to be doing squat for that. I haven't had any effective therapy since I finished docetaxel a year ago and my PSA keeps going merrily up in spite of the lupron, the Xtandi and the rucaparib. Just more side effects.

Once these quacks prescribe something, they will continue it until the cows come home.

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On the ball, Stego :-) Quacks will quack till the cows come home :-)

At least chemo worked for you. It did sweet fa for me :-(

Maybe, you could look at Lu-177 ??

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Sorry, I just read that you are indeed going to be doing Lu-177.

All the very best, Stego. Its been 22 days since my first Lu-177 infusion and I am feeling good. So far, so good.

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I get my first Lu-177 infusion day after tomorrow.

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All the very best, Stego.

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Just came back from my UCSF check up and review with my MO today. My lung nodules are shrinking. I have monthly PSA and all blood work. If next CT scan in 3 months as good as last weeks and PSA is still undetectable he will already consider a break. His words " you and your body need it". HIS suggestion .

That will be my 10+month mark for Zytiga/Prednisone/Lupron. We see movement in PSA or nodule growth from scans after we start again. He wants me to have quality of life too.

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I like the way your MO thinks

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Great post. I don't suppose that there are insurance implications, i.e., penalties for not "sticking with the program"? This would require a level of Health Big Brother that would border on tin-foil hat conspiracy....wouldn't it?

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I suspect that there would be "insurance implications". Good point, Seosam :-)

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My insurance authorized 12 months of Xtandi. I am currently into my 6th month and if I decide to take a break, my plan was to just keep getting the Xtandi refilled, and save it for when I come off the drug holiday. If I stay the course for another 6 months as some have recommended, I suspect I will be forced into a drug holiday by the insurance company anyway, as I do not see them paying $12,000 per month for another 12 months of Xtandi when my PSA is at zero.

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I’d think your insurance will pay if your Dr prescribes it. Mine has been0.0 for a few months and I don’t get an option for stopping for another year. They better keep the money rolling in. If they could just defeat the fatigue. That’s what I hate most.

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I read a report that concluded OAS was the same whether on ADT or iADT just that QoL was better on iADT. Too bad that I can't locate that study.

Mike P.

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I remember seeing the same study, but my recollection is that the QoL advantage was only significant for the first break from treatment. One of the problems with these studies is that they vary wildly on the criteria for stopping and restarting treatment.

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As far as the "jury being out", that's exactly what always concerns me in making my own decisions regarding this issue. Kinda like sports gambling...it's a 50/50 shot and the house always wins. If it comes down to going broke to continue down that path, it's one thing. If you can afford it, I'd personally choose to deal with the side effects a bit longer.

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Hi joeguy,

I have been on this ADT for about 6 years and the side effects do get to you after a while. I am now on Zytiga, Prednisone and a 6 monthly injection of Enantone, we must be tough to be castrate resistant ;-D. The P.S.A, is down to 0.05, naturally I am very happy, but when I asked the doc if we could now lower the dose, he said "no". But he unlike you and everyone else hasn't a clue about what we feel like and how much a break would help.

So I made my own decision, 500mg of Zytiga a day instead of 1000mg and 10mg of Prednisone every other day instead of everyday, after 6 day's I feel less tired. I have another injection in July, then I will get a P.S.A. check it out and then if needs be, before I see him again, I'll up the dose.

I don't understand why the school of thought is to throw everything at it and continue too, when there is some leeway. Have a crack at it and monitor yourself, if you like I'll keep you posted.

This is a great forum, we are all in this together and if we can learn by sharing our experiences and therefore help one another, what could be better.

Stock pile the drugs you don't use, DON'T put them on ebay :-D.

Best regards.

Phil

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Yes, I keep hearing from my doctor, and from some on here, that if I take a break after only 6 months at zero PSA, some of the cancer cells might have a chance to regroup and attack. I am now considering giving it until November, which will be 1 year on Xtandi, and if Im still at PSA 0.00, Im definitely taking that break. I personally don't see the difference in taking a break now at 6 months 0.00 PSA, or taking a break 6 months from now at 12 months 0.00 PSA....... Im mean after all, zero is zero, and time is relative....

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Yes, I am not sure about dropping the treatment altogether, cancer cells remain, they don't normally disappear. But if you could find a level of keeping the cells at bay which was tolerable, that has to be the answer for us all.

Hope it goes well for RonnyBaby.

Phil

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I've been giving this a fair amount of thought, as taking a break from treatment sounds good to me. My theory is that hormone therapy puts a lot of the cancer into a dormant state instead of killing it. Stop treatment and the cancer wakes up. Continue treatment and it will gradually atrophy and die.

The problem is dormant cells don't emit PSA and don't show up on scans that rely on tracer uptake by active cells.

Just my mental model. Would love to hear other theories!

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My Urologist worries about stopping ADT (even though Ive been at 0.00 for 6 months) because he says that it might give little colonies of cancer cells a chance to regroup and form new mets....... I respond with "well yeah, but what if the damn drugs kill me before the cancer gets a chance to"?

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I'm not a doctor, but if the side effects are bothering you, then taking a break makes sense. First, you may want to make sure your blood sugar and cholesterol are in order, and make any diet and exercise changes you've been putting off. Anything to give you an advantage over the cancer during the break.

Wow, I have put way too much thought into this considering I just started Zytiga yesterday :-)

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re "I don't understand why the school of thought is to throw everything at it..", my guess is because overall survival is the easiest thing to measure, so that's what the majority of the studies look at. QoL and cost/benefit are largely ignored.

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Guess you're correct, it stinks doesn't it 😞

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I personally quit my ADT treatment after 16 months, due to the well known side effects.

I suffered the symptoms you list. but it was the hot flashes that really upset my apple cart.

My move to arbitrarily 'quit' is considered a roll of the dice by some, I couldn't continue while taking this stuff. I was absolutely devastated by ADT.

I am in withdrawal, which is going to take at least 1.5 years (back-dated) to hopefully find my new normal. NEXT spring will be the anticipated time to rejoice.

That is assuming that I can stay off the stuff without recurrence.

Today, thank God, I'm at <0.02 PSA (for 1 year now).

Was tested 2 weeks ago to confirm.

Now I watch and wait .....

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Ahhhh yes, the hot flashes..... how could I forget to mention those :) .....

What was your PSA level when you decided for a drug holiday at 16 months?

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< 0.02 = undetectable - have been this way since late April of LAST year.

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Wow....yer a PSA hero to me, RB!

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I have been treated at MSKCC for almost 7 years now for metastatic PC. The urologist who treated me for the first 6 years is a world leader in the field and was very aggressive in my treatment. He recommended removing my prostate, which I did, which was almost unheard of at that time. Prostate removal in metastatic diagnosis has been gaining in acceptance since. He also had me taking ADT intermittently- initially along with zytiga and towards the end, without the zytiga. The first time I went off the ADT my PSA remained at an undetectable level for 20 months; the 2nd time for about 12 months or so.....He treated me this way, in part, because of my young age at diagnosis (54). Another urologist at MSKCC took over my care a year or so ago. She has me taking the ADT continuously. She is NOT giving me zytiga , which is also the way my initial doctor was treating me towards the end of the 6 year period he treated me. My understanding of the studies indicates intermittent ADT MAY be beneficial for localized PC, but does not appear to be beneficial in metastatic PC. But- I also don't think intermittent treatment for metastatic PC has clearly been shown to be "significantly" detrimental. And- it was nice to get the return of testosterone during the periods of time that I was "off" of ADT. Keep in mind however, my "man boobs" never went away. I am glad I was treated intermittently for 6 years and have no disagreement with being treated continuously now. It's hard to conduct scientific studies and a lot of the information regarding best treatment remains a bit unclear. I guess we have to understand things as best we can, but also find doctors we trust. I trust my doctors 100% and the thought that some people have about doctors making decisions based upon what benefits THEM the most financially, makes me sick. Of course, that is true for some, but not for the vast majority of doctors.

Good luck in your decision and your treatment.

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I am a patient at MSK. Can you give us the name of your MO's? Thanks

(MY MO is doctor Michael Morris).

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 05/15/2019 6:41 PM DST

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Howard Scher treated me for my first 5-6 years. Dana Rathkoph took over when he was promoted.

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Heard of him..... not her.... Thanks for the info

Is she at the Kimmel center on 68th street?

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 05/15/2019 7:51 PM DST

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Yes- Dana Rathkoph is at Kimmel.

Best to you also.

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I was also young at DX (53 yrs)....... am I correct in assuming that you are not yet "castrate resistant"?

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Not sure you were asking about me. But, yes ADT is still working for me.

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I was on IADT for five years but psadt was two months when I stopped so the holidays weren’t very long. I’m still castrate sensitive however which is great. I hate LHRH agonists ( Lupron trelstar whatever) so I switched to estradiol patches which are much less harmful to your body, much less costly, and have fewer side effects. See my profile.

Bob

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That's great that you are still castrate sensitive after 5 years. I went resistant at about 20 months, so Lupron and firmagon don't do it for me any longer. We are also having a hard time keeping my T down with either Firmagon or Eligard. My T has been staying around 65 since starting Xtandi, even with monthly injections of Firmagon. Maybe I need to consider estradiol like you did. Is there any down side to the patches?

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See trial results of reactions from the patches as well as the upsides:

ctu.mrc.ac.uk/media/1282/c-...

Clearly the pros outweigh the cons.

Bob

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Brother,

Yea verily thou dost speak the truth. My journey is similar to yours, only mine started in 2009.

Right now I'm on a 10 month break from Xtandi, but still on Lupron. I work as a planner for a large multi national, and find the brain fog, and pain, the confounded pain in my feet, hips, knees, shoulders were excruciating on the Xtandi. I know now that some percentage of us on Xtandi experience this pain.

It's funny because I didn't have the pain on Zytiga and Prednasone. It wasn't until the start of Xtandi that it flared to a point, well I was in tears at my last meeting with my Doc.

The brain fog is a constant battle. I lose focus so darned easily, and energy is at a premium cost. I find that by mid afternoon I crave my bed and a nap, and can't seem to finish anything I start.

I had more to say, but I'll be damned if I can remember it now...

Hang in there, after all the alternative is a nonstarter.

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Do you do regular exercise?

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I get in about 20 minutes of power walking by doing laps around my workplace every day at break...... if that counts as exercise...... it doesn't seem to be slowing or reversing the weight gain :(

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My Oncologist tells me the same thing when I ask to take a break (zytiga 1000mg + Prednisone 5mg + Lupron saying you are better to stay on it for two years. (It is now one year). After reading many of these comments, it seems that taking a break is reasonable as long as monitoring continues.

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I have now been on Eligard (Lupron) and Firmagon for 2.5 yrs. The addition of Xtandi is only 6 months old. I have a 1 year prescription for the Xtandi, so I think I will stick it out for 6 more months, and if Im still at zero come November, I will say ENOUGH. But, yes.... I will continue to check PSA and T levels every month or so.

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Sounds like a plan. I intend to stop both Zytiga and Lupron at the end of the year if my status holds. by then, I will have been on Lupron for 18 months and Zytiga for 17 months.

Enough is enough. Of course, will keep monitoring.

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