Zytiga and Lupron 18 months or 24 - Advanced Prostate...

Advanced Prostate Cancer
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Zytiga and Lupron 18 months or 24

With high risk disease and no known Mets are your doctors recommending 18 or 24 months of ADT. What ability does ADT have as a cure? I know you have been told different things. My MO is choosing 18 months. I’m headed there soon to hear his reasoning.

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If you have brachytherapy, you only need six months. According to this study a longer period will decrease your survival time:

Hormone therapy for longer than 6 months has a negative effect on all-cause survival even in younger patients without an apparent beneficial effect on cause specific survival.

ncbi.nlm.nih.gov/pubmed/246...

Otherwise 18 months should be enough:

europeanurology.com/article...

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Thanks for posting that about BT. My MO is recommending 18 mos, but will ask him to consider this study for 6 mos.

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Forgot to say I had 39 rounds of radiation.

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If you got brachytherapy boost included in your 39 sessions, you could discuss the 6 months with your RO. Otherwise 18 months is supposed to be sufficient.

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No brachytherapy boost. It’s always been 24 months. The 18 months is new.

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ADT alone doesn't cure PC. Adjuvant to high dose radiation, 18 months may be enough.

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Pretty much what he said. He said if it doesn’t get it in12 to 24 months staying on adt won’t kill it in ten years. Sounds like you just find out if the radiation worked 6 months earlier by stopping at 18 months. If it’s in the blood stream now or at the time of radiation is there anything that kills it?

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ADT kills hormone sensitive cancer cells;hopefully all of them are at this stage. There is an abscopal effect.

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It’s just been a year now since starting Zytiga. Lupron started a month earlier. Psa still .03 so time will tell. Not sure I’ll quit until the full 24 months unless he won’t prescribe it. But boy I want to.

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Latest RADAR study indicates a change in adjuvant ADT recommendation. From 24-36 mos to 18. Worth a look and chat with your doc.

EdinBaltimore

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I've had that chat with 3 of my MDs. My urologist still insists on 24 months. My radiation oncologist is willing to consider 18 months. My medical oncologist is perfectly happy with 18 months. He's primarily a researcher, and runs a number of trials. He said there MAY be a 1-2% difference between the long term results, but the difference could be either way depending on the study.

I'm a G9, no Mets, 73 years old, who received 81Gy in a 45 session boosted dose IG/IMRT/Arc radiation treatment. Current T level is 6, last PSA was unmeasurable.

And if humanly possible, my choice will be 18 months of ADT.

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And we hope the 18 months is the correct. Everyone wants off. With each persons case being different I’m getting all the drs together to discuss just me. If we discussed yours and my cancer I’d guess they would be nothing alike.

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Sounds like that’s what they want to do. 6 months to go if I go along with it.

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My guy first said 24, but later said it could be 18, we will discuss that when we get there. I have seen references to studies that supposedly show that 18 months is as good as 24. That could be what he is thinking, I personally will worry about that in about 16 months.

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Where did you see the studies if you remember.

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Thanks

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If PSA tests have been undetectable for 18, 24 or 30 months, selection, is somewhat based on the aggressiveness of the cancer, and the presence, of certain mutations. Gleason 7's you can purpose 18 months, Gleason 10's more like 30 months. I myself was offered 18,24 and 30 by different Docs. I settled on 20 months.

Nalakrats

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Mine was Gleason 8 but unconfirmed because it was inoperable. Chose radiation over surgery. Tumor outside the capsule. Could be more than 8. It was in the nerve bundle but nothing confirmed anywhere else. No Seminal vessels or lymph nodes if they can tell with a t1.5 mri. All I had. I’m sure he’s going to give me the option but said studies show no better results after 18 months. How did you choose 20 months?

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I literally Prayed about it. And I was going to Florida to fish for the Winter, and wanted to have my full strength, and Testosterone return. Got a Year out of the vacation, and could of continued, but decided to go back on, to then go on vacation again---so I am doing Intermittent Vacations---aiming for yearly 12 month turnover.

My Gleason was higher than yours, and I have not so friendly Mutations. But I did open surgery, and My Uro--with 1500 Open RP's under his belt, cleaned up about 99%, took nearby Lymph nodes, seminal Vesicles, even though they showed clean, and we then went after the rest systemically. You cannot see a few cancer cells in a Lymph Node, but a Good Surgeon knows where the cancer will travel to first--so we took them.

Nalakrats

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I feel like mine is a mean one. Two surgeons saying it would be a bad outcome. Couldn’t tell about the rectum invasion. We waited 8 months shrinking the tumor watching it pull away. Never got a clear indication from either dr of the severity. So if the worse the cancer is determines the length of adt I’m wondering what there thinking is. Going down to discuss it with them.

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That is my thinking the more aggressive the cancer the longer you wait. It may be improper thinking. But it just seems logical.

Nalakrats

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This message from my dr was out of the blue about changing from 24 to 18 months. You would think MD Anderson would not get surprised by anything. I’ll let you know his thinking after aug 1. Or you could take a vacation in Houston and go with me to first hand info.

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Would love to go with you--been asked many times, by others--I think I would scare your Docs. I am very demanding, and do not take will see, or maybe, or any milk toast answers. You either know your stuff or you don't. But sorry I am booked with my wife for the summer.

Nalakrats

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I was kidding. I don’t even let my wife go. I do like your attitude and would pay for training.

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I ask my dr if Zytiga actually killed any cancer cells in the bloodstream. I was surprised he said yes. So that means longer is better. If you choose to believe him.

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Apologies for being blunt but once its outside the prostate then my understanding is its incurable.

I thought ADT was a lifelong help as it keeps testosterone levels down. I know some have ADT holidays.

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Well I’ve seen that incurable part too and you are probably right. The doc I’m working with says otherwise. At least he did before radiation. MO different story but has seen it stopped. We will see.

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If it was still contained in the prostate they would remove it.

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True

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Not a radiation guy.

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That's more or less what my doctor has said. They've given me a cut-off point in a year, but they also say "we'll see."

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What helps them to decide? Have they told you yet.

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My understanding is that they're watching the PSA very carefully. What treatments are administered in the event the numbers begin to rise have not been discussed with me. They sent me to a clinical social worker who has diagnosed me as disabled based on depression and anxiety disorders, which probably means the doctors won't be any more forthcoming with me than they already have been.

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Go to pcri.com

These guys will answer general questions based on what you tell them. Lots of videos for info. Get help with the depression and get back to living.

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Well never know till you try. I stopped after 2 years. Psa shot up to 4 from zero in 6 months. Back on the lupron, and xtandi in the last year or so. It was kind of a bummer i just started to feel good after 6 months. That was 6 years ago.

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Was wondering how long it took after stopping before rising. Thanks for sharing. How is the ADT for you today. Does it ever get easier. Talking about the fatigue.

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Not sure how long didnt get psa test till 6 months. Yes ADT dose get better over time. Kinda learn to live with it. Walking most days 4 miles some days it tires me out others i just keep going. I used to get upset when i was to tired to do something but i just lay down for an hour or so.

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As long as it keeps working.

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I had a metastasis to an inguinal lymph node that was confirmed by biopsy and a GA-68 PSMA PET MR.

My Oncologist is keeping me on Lupron/Zytiga/Prednisone for 24 months.

9 months into treatment I had 9 weeks of radiotherapy to the prostate and pelvic lymph nodes that were treated to 8grey.

I asked my Oncologist why do I need to be on hormones for 2 years?

I was informed that all of the clinical studies had a 2 year duration.

My PSA has be <0.06 for 14 months.

I asked my Oncologist what to expect after coming off all hormones this November. He is hopeful for a cure. The hope is the PSA remains low as the Testosterone recovers.

I was informed that Zytiga clears in a couple of weeks.

I was informed that it could take 6 months to a year to clear the Lupron.

I asked what the outcome for his other patients after they came off this treatment protocol. None of his patients have completed treatment. I will be one of the first.

There is longer term data in Europe but all they are keeping track of is survival not prostate free cancer survival.

So we will see.

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18 months is usually adequate by it is not a cure.

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I have to ask how is that adequate? Little bit of a smart ass here.

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Sorry bad choice of words. Whether or not it’s “ sufficient “ depends on the severity of your PCa. For some six months may do the job. My RO believes 13 months only because ADT is not good for your body so he believes in intermittent ADT. I stopped intermittent ADT and switched to estradiol patches which have fewer side effects yet do the same job. Everyone handles ADT differently.

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I believe your Dr. Basically what my dr said but the plan was to hit it hard the first time. ADT is bad for your body but it’s all we have. Especially since we are all at different stages in the cancer I find it hard to believe they can say how long to be on it. One and done is what they preached originally.

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18 for me, but we are taking it one day at a time and will reevaluate as things proceed. I think there were two different studies both showing that the longer duration performed better but there wasn’t a comparison of 18 against 24 directly. All our situations are different so let us know the basis for your plan. In my case I had GS 4+3 and then surgery, and then afterwords discovered lymph node invasion and a persistent PSA of 4.2. Radiation and ADT brought the disease to an undetectable status and I am now nine months in. Good luck

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Gleason 8 but no surgery so really unknown. I have a tumor out of the capsule and and nerve bundle involved. Nothing else confirmed but I only had a t1.5 mri and bone scan. Hopeful but skeptical. Been on lupron and Zytiga for one year with psa at .03 continuous. The reason I started this discussion was to find out how the doctors decide for each person when to go off.

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I did 18 months ADT2 with salvage radiation (whole pelvic). For me Stanford U recommended 4 months and UCSF 18 months so there’s some different schools of thought on duration. It would be very good if you can get your PSA undetectable and then do min 12 months ADT in my opinion. Remember it will take your T equal time to recover that you were in ADT in most cases. Best of luck.

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Thanks. Sad to hear it will take so long to wake up but I guess it’s also good news if it doesn’t come back before then. Can’t have everything.

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I think you'll do fine with Radiation and ADT for the duration you pick. While on ADT you will need to exercise daily if you have time. That will greatly help from the SE's of the ADT. I am also a GS 8 so you can beat this. I'm also undetectable today after discontinuing the 18 mths of ADT in Apr 2014. Good luck.

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That’s great news. I’ll make the 18 months. I’m not doing all the exercise I need to. I do work but I know it’s not the same because the fatigue slows me down.

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My husband has been on it for 25 months..(He has Neuroendocrine PCa) As far as we know they have no intention on stopping.

Should we discuss stopping hormone treatment ? The docs have not mentioned stopping it EVER.

I feel blessed that he is doing so well.

Sending you all hugs, prayers, and love!

Softwaremom

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Wrong guy to ask that. I’m just beginning. There are people here that can answer that question. My guess is that if we come off it is short lived because of the aggressive type we have on this site. I would tell you to ask your Dr but I don’t get many answers myself. Good luck.

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Thanks! Good Luck to you too!

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Has your husband had side effects from the Lupron?

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Mostly the fatique.. I think the Zytiga causes it more so.. now that he is back on steroids he has a lot more energy.(He also did a lot of chemo during the first 6 months of treatment.. )

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Adt can work . I’ve been on it over four years ,31/2 clear of all visible signs . It s the drug of choice amigo . Causing castration . Welcome to the club , For me its a choice of life or death.. No one wants adt ... it extends life ..I had an aggressive pc shutting down my urethra causing kidney failure . I wouldn’t be here without ADT .. don’t fear it ,it can save your life . No cures once stage#4 .. we will be in a diminished status but we can live ...

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Took me a year to realize exactly that. The docs know very little until it is detectable and metastasized. They guess like us. How are your stats on heart disease and bone density.

My MO’s first thought to me since finishing radiation is I need to come off ADT in 18 months because it is bad for me. I’m thinking like you death is worth fighting off.

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After more than four years on adt constant and no testasterone ,my mo is now talking prolia for the osteopenia. I hate taking any of these pharma drugs. They all have so many side effects , but if needed I’ll do it . Congrats on getting thru the first rounds. Many do not . We are the lucky ones .. It’s no cake walk but it beats the alternative . We all will submit when the suffering totally outweighs any joy of living . Until that day we should drive this car like we stole it . Live for the moment. Peace Carlo ..🙏😎

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Well, Lupron does not treat or destroy the cancer at least directly...it starves it so that if it does not become resistant to it then eventually the cancer could die thru apoptosis..I'm on lupron now and j know it does put the breast to sleep but I'm also going thru proton beam therapy to destroy it

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I did the same George. Was it contained. Where are you getting the proton radiation.

Mike

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Go proton beam! Good luck!

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Let me confuse the issue further. I am or rather was a GS6 22 yrs ago. External beam plus Pd seeds failed to kill it and I went on intermittent Lupron (plus casodex and avodart) in 2001. Repeat biopsies in 2001 were unclear. After about 15 yrs, my psa now failed to go to 0.0 but it has plateaued at ~0.4. My MO says I'll stay on Lupron forever...which doesn't bother me at all. Sure I'm weak, but I'm 83 and still playing racquetball. I also had a heart attack at 81, but my dad died of one at 48. So who's setting the rules and why? I suspect this new discussion is really looking at all cause mortality...which is fine for you younger guys.

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Playing racket ball at 83 on adt , wow! You’re my hero . Keep rolling herb1...😎

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You win. So you still have a prostate I’m guessing. I’m told that my psa will not go to 0.0 because I also had radiation and still have my prostate. Sounds like you are going to 100

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I still have my prostate and I’ve been undetectable for 31/2 yrs out of four living with our little friend inside . It is possible even with a prostate . I’m under no guise that APC is done with me . Keeping it on a short leash is my hope .. take care carlito.

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I have been on IHT for 19 years now, usually go for 3 or 4 months, then take a break. I do a three drug combo, so really cuts down the testosterone but has proven effective. I would always recommend doing a 3 month, stop test the psa every month and wait until it jumps up. That way you keep the cancer cells from mutating for a longer period and working around the HT. I am against longer term due to the increase in side effects and dramatic lowering of quality of life. Live large with cancer becomes as or more important as how long survives with it. This last round really beat my brain, heart and lungs up but that is the nature of the beast we fight. Live well, live large, get on with making a bucket list and spend your money by doing good things for those who you love!!

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My wife is doing a good job on the money part. She must think I’m going to be healed and go back to work

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Good thing that you have love ..

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19 years? I salute you! Great advice .. Thank you Sir. You inspire me .. 😎

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THE CURE.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 07/17/2019 6:46 PM DST

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John you are one sick puppy. She does do the national anthem great. Second only to Whitney Houston.

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Unfortunately we're all sick puppies...🤢

I second your comment..... That Whitney had some voice...

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 07/17/2019 7:44 PM DST

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What a voice!!

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I am offering my opinion only of course, BUT .....

I was faced with a timeline decision of my own.

How long on ADT ?

From what I've read and seen, there is no agreement amongst a lot of doctors and specialists.

MY understanding about ADT (Lupron refers) - IF you go past two years of consecutive use / consumption, there is a chance that you will never recover - the 'damage' or worst of the long term side effects MAY become permanent. Your nuts will be the size of raisins and you'll be hot flashing too often and your mind / spirit will be affected in an occassional fog. It seems that in some cases, the cure is worse than the disease. For me, quality of life is HUGE and will drive my decision(s) moving forward.

The problem with this timeline / duration scenario is who is the authority, where are the concrete stats, who can point to a series of clinical trials where a consensus can be reached ?

In MY case, it was possible that I could have stayed on ADT for a lifetime. That would certainly help with some statistics, but was it really needed ? The RO was non-committal so I had to take the bull by the horns.

NO said my inner self, yet, ADT forever was a 'maybe', unless something happened to change the script. - but was everlasting ADT desirable ? Depends on who you talk to.

I was a G9 - node positive -T3B Dx - about 2 years ago. Hi risk / advanced and aggressive they said. Could I be cured ? Was that a possibility ?

I was fortunate enough to get to an undetectable PSA (<0.02) number for at least 3 consecutive 3 month cycles. During that time, I spent 16 months on ADT and had every bad side effect you could describe. Of course, everyone is different - not everyone goes thru the hell I experienced. Clearly, I have a bias NOW after what I went thru.

So my advise is as follows - get to a good nadir and stay there (undetectable) for awhile then take a holiday, hope that the cancer is in remission and keep closely monitoring your status.

IF things are good, you're clear and recovering (over time) to your new normal - whatever that will be and live your life to the fullest.

IF you require further treatment in the future, then so be it and roll with the punches and live your life to the fullest.

Once you've been diagnosed with Cancer, your life is changed forever, regardless of the facts that medical intervention has its highs and lows.

Just hope you catch the right waves and take care of the caregivers and partners because they have to adjust as well.

Today, my 'T' is still low, but almost normal again (at low end of scale) and my PSA is slowly rising (0.04). The doc and I BOTH understand that I might be playing with fire, BUT there's also a good chance that I dodged a bullet and I'm getting back to my new normal again.

There's a little while ball out there with a golf course staring me in the face.

FORE !!!!!

It's time to play whack$%ck again. The swing is coming back - now if I could only PUT *^%#&()%# ! better !

After all, I couldn't golf last year.

Good luck and may God bless ....

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Inspiring message. My psa has been that .04/.03 since it dropped from 4.20. I guess it’s been a year and a couple of months.

I can’t play golf yet. Wait, I never could. Frustrating game. Maybe it’s time to try again.

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FOURrrrrrr, enjoy the greens.

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Just finished 24 months and am adding one more year. Gleason 9 and had 39 radiation treatments. PSA has been undetectable for 2 years and Testosterone is 2.5. I felt it was worth the extra year of treatment even though the side effects are really unpleasant.

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Was your choice Dr recommended? That’s where my concern lies. Every case is different how do they decide?

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Jointly I would say. He assumed I was frustrated by side effects but I was more than willing to continue for better results.

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My dr has told me if it didn’t work in 24 months it never will. Frustrated by the side effects is putting it lightly. I would do the same as you did if it would work.

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I had high risk Gleason 9 in 2009, docs found RP was not possible when they opened me up. I had 2 years ADT, and 70Grey EBRT at 6 months after attempted surgery.

Then I paused ADT, and Psa sprung back up from 0.08 to 8.8 in 6 months and I've been forced to stay on ADT ever since. I doubt the ADT killed many Pca cells, just made them sleepy. The EBRT appears to have just tickled them pink, and so the EBRT + ADT was a failing therapy for me. I met other men who said that all worked just fine, ten years after they had that treatment.

We are all different.

Patrick Turner.

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It’s all in the stage the cancer has progressed. When the psa is low they know nothing.

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This posting has had a huge response, and all over the map, which is in and of itself frightening. There is no magic pill, once the cancer has returned you will die of it or with it or because of the negative impact of the various drug modalities. That is a fact.

Also, all drug treatments have side effects, that is also the reality.

At some point in time, there is no point, for the quality of life has gone, and that is a very tough road ending point for those of us who battle onwards.

In terms of ADT, I am shocked to find that some many guys are going on continuous treatment of lupron and or a combo of it and casodex , and maybe one or two others, all meant to reduce the level of testosterone, which our PC lives off it, until it becomes hormone resistant, at which point, it is speculated that it will live off the drugs.

My own treatment set up by some brilliant experimental types, was to go on the AHT until my psa hit nadir-which will vary with every guy, got another month, then go off and do monthly psa until it raise to a max of 4. This cycle can be repeated, in my case, try some 19 times now.

Side effect are minimized but acceptable, better to see the grass from this side, than from down under. I have trouble riding my big bike now, but still take it on short trips, finally got a hot rod done and while I race like the old man that I am, am still going as hard as I can.

This last round had me so sick that I almost ended my life, but in going thru this so many times, know that the sun will still shine when I am off again, so one has to stay strong, keep as healthy as you can, but also to live life LARGE.

There was a group of us guys who started multi drugs and I am the last surivor. I own to those who came before me, to do my best to keep it, and I think it also up to all of us to do what we can. We may not prolong or save our lives but our passing serves to help those who have yet to be hit with this scourge.

In regards to some of the testing etc. it all is short term pain-I got quite used to the bum deal, but hey, these tests give the brains the information they need to keep you alive, so buck up and take it!!!! them!!!!

Again, live large boys, for we are all going to die, and for me, now 14 years beyond the wildest predictions made, am still here, yes I have lost some brain cells, lost much muscle mass and yes, am one step from the end, in terms of what the drug treatments have done to me, but, I am still here, the flowers-although my sense of smell has also left me, still look pretty good, as do the girls who swung along on the beach walks.

My balls, god, I still have two raisins, but who cares, there is still much to do boys, so do not let the little things get to you!!!

Ok, stay well for as long as you can and God bless you guys for making a difference.

Billyblastoff

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The responses are important to me because aug 1 I have to decide to go with my doc and stop in 18 months or 24 Lomé was discussed initially. 18 months is next January. Fear controls everything we do because they really have no idea. I’ve learned that much.

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