A decision to be made....: My Uro at my... - Advanced Prostate...

Advanced Prostate Cancer

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A decision to be made....

MrDon2 profile image

My Uro at my last appointment (Feb. 2022) told me I may have a decision to make on this coming visit (end May 2022) if my numbers continue to be good. I have been on Zytiga (1000mg daily), Prednisone (10mg daily) and Eligard (quarterly) since I started this journey in May of 2020. My PSA result have been <0.1 June 2020, and since 8/2021 its been <0.04. Should I take time off from the Eligard injection. Not sure what to do. I have good result with the meds I on so do I want to risk the change? All bloodwork have come back with good (normal ranges) result. Appreciate any comments or suggestions.

57 Replies

If a treatment is working, stay the course.

MrDon2 profile image
MrDon2 in reply to Magnus1964

I am thinking along the same lines of thought. I feel very fortunate that everything is going my way right now.

I've never heard of taking a vacation from Eligard+Zytiga. One usually stays on it until Zytiga stops working.

Why are you taking 10mg prednisone instead of 5mg? Did you have low potassium/highBP/edema when taking 5 mg?

MrDon2 profile image
MrDon2 in reply to Tall_Allen

ThanksTall_Allen for your response. Just time off from Eligard. Since having high BP and taking the 1000mg of Zytiga, it was recommended to take 5 mg in am and pm. No other issues.

Tall_Allen profile image
Tall_Allen in reply to MrDon2

There was a small retrospective study of Zytiga without ADT among mCRPC patients:

ascopubs.org/doi/abs/10.120...

Makes sense to increase prednisone if high BP on Zytiga.

MrDon2 profile image
MrDon2 in reply to Tall_Allen

I respect your response and including the study.

6357axbz profile image
6357axbz in reply to Tall_Allen

I wonder if the same can be said for mCSPC?

MrDon2 profile image
MrDon2 in reply to 6357axbz

Maybe someone on this site that has much more knowledge on this disase than I do can answer that question for you.

I would look at a vacation as a chance to see if it is cured, if PSA rises go back on drugs. I would only go off drugs if QOL is an important issue for you.

I am sure that TA can site a study that compares results on intermittent ADT and life long ADT, as I recall the results gave an extra couple of months to life long term over a 10 year period. Your mileage may vary

Some context: I have been a high stakes speculator all of my adult life.

I am currently on ADT and Zytiga and can not wait to get off them and improve my QOL.

None of these decisions are easy.

As Socrates said; Know thyself.

MrDon2 profile image
MrDon2 in reply to Scout4answers

Thank you. As you stated, there are very few studies.

Quality of Life has become my main focus now. I have been doing Eligard for the past year and a half. The side effects are crippling to me in all aspects. I have become a very weak, very grumpy, very tired 68 year-old fat guy. It is becoming a problem with my marriage to my very best friend....my decision is to stop the Eligard at my upcoming appointment in June. I am giving it up to God at this point. I have no desire to live with these horrific side effects and give it up to God at this point. See you all at the beach enjoying what's left.......not being pissed off at everything in the world. God Bless you all..........

I can identify with a little Grumpy behavior, although Coco , angel that she is, ignores it.

Thanks for speaking the truth....i mirror your expierience.....down the road could take god out of the equation.....but thats my choice....

JJUl profile image
JJUl in reply to eddieboy52

Dear Eddie Q0L certainly an overlooked aspect of treatment. Hubby decided to put to oncologist to reduce his maximum daily dose of Xtandi (40mg) by 1/2 for a break from side effects. UNfortunately after a few months his PSA is creeping up- still minimally but concerning. So last appt. Increase from 2 tabs to 3. Hoping as he increases- (maybe have to go back up to full dose )- hisPSA will drop to previous level. If this fails and he has become resistant to this drug we don't think chemo is really an option(again) as nearly killed him last time after he got cystic pneumonia- certainly possibly tough decisions ahead. 🤔

cancerfox profile image
cancerfox in reply to eddieboy52

I told my general practice physician that before the Eligard and radiation treatments I received for prostate cancer, I felt like I was 25 years younger than my actual age. Now I often feel 20 years older than I actually am. I also told him that if you don't treat prostate cancer it will eventually kill you, but if you do treat it there are a lot of times that you wish it had.

maley2711 profile image
maley2711 in reply to cancerfox

Having experienced what you have experienced, would you undergo the RT + ADT if given a 2nd chance at the starting line today? For me, MSK's life expectancy nomogram indicates 25% probability of PCa death in next 15 years with no initial treatment, vs very little probability of PCa death with surgery, and apparently similar success with RT + ADT. At age 74, concerned about tradeoff of currently good QOL for the apparently near certainty of QOL reduction with treatment.

Docs have all but ignored the negative QOL considerations ???

cancerfox profile image
cancerfox in reply to maley2711

My doctors definitely seem unconcerned with the negative effects of ADT + RT. My general practitioner physician actually proscribed venlafaxine hydrochloride, an anti-depressant, for me to take "to feel better," but it just turned me into a zombie and gave me nightmares, so I quit taking it. If I could be guaranteed in advance that I wouldn't need ADT + RT after having my prostate removed, I would seriously consider going that route if I had it to do all over again instead of the ADT + RT. I seriously underestimated the effects that having no testosterone in my body would have on me. I'm developing a theory that the better shape you are in physically when you start ADT, the worse the effects are on you. If I had been an overweight couch potato whose main physical activity was lifting tallboys of beer, I don't think that I would have noticed the loss of strength, energy, and stamina that I have experienced nearly as much. A lifetime of taking care of my body has been crushed in 16 months' time.

VCinTx profile image
VCinTx in reply to Scout4answers

I'm going on vacation on June 2nd. I have been on Lupron 18 months and my QOL needs help. I could not tolerate Zytiga and have <0.05 ng/mL PSA results for 16 months. Good luck on your journey.

MrDon2 profile image
MrDon2 in reply to VCinTx

The best of luck to you.

I understand, but it would be nice to get away from that shot for at least a while.

Two years on zytiga is great. You are responding well.

MrDon2 profile image
MrDon2 in reply to Magnus1964

Yes I am, Thank you. I just don't to mess it up.

You may think about intermittent-ADT (iADT) as a way to extend the time to castration-resistance, which is discussed a lot on this forum. Search on iADT under the Posts heading above, and you'll see a lot of threads about it, e.g., and of course, discuss with your MO:

healthunlocked.com/advanced...

MrDon2 profile image
MrDon2 in reply to timotur

Thank you for your response and I have been reading up on iADT.

There are other options that the usual ordinary doc can't envisage. Instead of stopping, tapper off. You will first have to switch to daily oral Orgovix and monitor your PSA frequently. As long as it stays within your acceptable upper limit, reduce gradually your dose. It's a proportional world we live in. Single bit binary is only good for the initiation to digital. No practical uses. Morse code devised 1.5 centuries ago is a 4 state code (dit, dash, short pose, long pose). Traffic lights ditto (red, orange/flashing, green, no light).

Intermittent ADT is done to improve the quality of life of the patient. If you are fine with the side effects of the current therapy there is no need to interrupt the treatment.

Not necessarily. Per the study TA provided abiraterone acetate alone is effective for mCRPC…

I did read it and certainly don’t take it as gospel. Treatment options have been changing rapidly since my diagnosis in July 2018. My highly respected MO, and others, seem to be of an opinion that SOC ain’t gonna cure you and while there are many exceptions most men with initial dx of Stage IV mPC don’t live very long so there is room, DEPENDING ON A PATIENTS INDIVIDUAL cancer characteristics, for non-SOC treatments that may both improve QOL but also lifespan.

I want to let you know that the side effects for me of Zytiga and Lupron were very difficult. You can look at my history to see what I've done. I developed severe neuropathy and still have it. In 2018 I did the trial Ga68 PSMA trial. After detection of metastasis in my lungs only I started immediately on Zytiga and Lupron. Have stayed on them for 2 years into 2020. At the consultation of my UCSF oncologist and my local resident oncologist I took a vacation. I have always talked about quality of life versus quantity. Depending on what labs did my PSA test I was/have always been less than 0.006 to 0.014. My nodules showed no growth just subsistence from scans I do. Truly undetectable.So to this day and hopefully when I take my blood work next month it still is at less than 0.014.

I had a radical prostatectomy. I'm 68 years old and after a year of being off of these drugs my testosterone is back in the 650 area. I feel better in SO MANY ways for taking this vacation. How long it will last I don't know. I can honestly tell you that I feel stimulus "down there" again. And honestly dry ejaculation can happen from stimulation. I'm back to shaving again everyday. Only downfall. I don't tell this story to many because it's anti everybody on this group. But for me, two great oncologists that I have and my spouse this is what I decided was best for me now. Use this for what it's worth. Best to you on your journey...

Miomarrito profile image
Miomarrito in reply to MichaelDD

Good for you, keep us posted! There are alternative treatments that are not hard to live with without the side effects. If you are watching your numbers, getting blood work done regularly, you are in control of your life. 👏🙏❤️

eddieboy52 profile image
eddieboy52 in reply to MichaelDD

THANK YOU......Quality of Life is EVERYTHING........what's quantity without quality....In God's hands.........I pray for everyone on these pages.......

I’m very similar PSA results to you on 500gms zytiga and 5gms prednisone daily since Dec 2020 for past year > 0.01 as well as quarterly H T injection but discussing with my Urologist next video call going to 250gm as slight liver toxicity /stomach discomforts !!

I have been on Eligard and Zytiga for two years. Bad fatigue and muscle loss as well as brain fog. I am 79. PSA is undetectable. Testosterone way down too. In hope of a QOL improvement, I went off Eligard 2 months ago, then off Zytiga last month. Still taking drugs for high blood pressure and bone density loss. Sadly, the fatigue and muscle loss as well as brain fog is still with me, although slightly better. Blood test due in another week. If PSA is rising, I will go back on Zytiga at least. Maybe both. My oncologist did not discourage me from giving a vacation a try. I also had a consultation with BATman at Hopkins. He did not think what I am doing was bad, but cautioned that testosterone could be a long time coming back (withou injections). It’s a crap shoot.

MrDon2 profile image
MrDon2 in reply to EchoII

Wish you the best of luck.

EchoII profile image
EchoII in reply to MrDon2

Its a personal decision and a difficult one. If i stay the course as most do, my life is really so diminished by the treatment, and then the chemo and radiation to come, that I would prefer dying young (80).

You know what they say “if it is not broken don’t fix it”. You are doing well with your current meds and tolerating the side effects. Good luck

I’m like you, stage 4 in 2016, been on the same treatment since 12/16. I’m not about to change to something that might work .

MrDon2 profile image
MrDon2 in reply to larry_dammit

Understand completely

Thanks to all who had suggestions and commented.

Yes not worth it to stop just to ‘get away from the shot for awhile’. If the side effects are overwhelming that’s another matter.

Don't do it! Stay the course.

Dont rock the boat. The meds are working. Also at this point, recommend adding a MO to your care team.

Like Magnus said, stay the course. I've been on lupron from the get go in March 2017, did 6 rounds of chemo and been on Xtandi for 25 months and my SPA remains undetectable. My Onc said no vacation for me. Nick- I get treated at MD Anderson in Camden, NJ

Been on the same medication for four years now no vacation and 0.1 PSA. My Doctor never mentioned a vacation but at my second year cut down my Zytiga to three pills a day and just recently cut down my Prendisone from 1000 then 750 now 500 due to sugar spikes. Other than that numbers are good . I've also had Provenge infusions at my second year. Never give up Never surrender. Leo

Good morning MrDon2. Nice to hear you are doing well.Even though we have our opinions and experiences, I would suggest talking to your MD on this issue.

It is very important and deserves a medical professional.

Good luck.

MrDon2 profile image
MrDon2 in reply to Alice85

Thanks for your comment. I have spoken to my MD, MO, and my Urologist.

My husband’s (72 yrs young) MO had told us that at some point ( probably in more distant future) if PSA remained low ( now 0.01 on every 3 month Lupron and daily Zytiga and 5mg Prednisone) she might suggest a vacation for QOL based on current studies. So far side effects hv been tolerable, but concerning. It’s a tough decision. Wishing you all the best. I so appreciate this site and the comments and suggestions from all traveling this journey. You all remain in our prayers.

MrDon2 profile image
MrDon2 in reply to Duk26

Thank you, it positively is a tough decision.

Scary decision that I believe has no correct answer. The basis for my statement is that prostate cancer is the poster child for a heterogenous or multiclonal cancer. The polar opposite of CML and the Philadelphia Chromosome. The question is even when you fail a treatment are you still suppressing some clones. The attached paper touches on the complexity of this disease and drug resistance. Wish you well in you decision. If you stop be vigilant even if it means paying for few extra PSA values. ncbi.nlm.nih.gov/pmc/articl...

Regarding prednisone dose, there is support in the literature for both 5mg prednisone once and twice a day. People on Zytiga should probably also be evaluated by and endocrinologist and have a Cortrosyn Stimulation Test. My CRT is totally flat and based on my endocrinology consult I supplement addition prednisone when I am backpacking, backcountry skiing or other high stress activity based on his recommendations. It appears clinically to help. You should probably also be evaluated by an endocrinologist when and if you stop Zytiga/Prednisone to see how well your adrenal suppression resolves. Adrenal recovery is not a sure thing and residual hypofunction my lead to continued lower energy and ability to respond to stress. It is entirely possible our quality of life would be improved by more endocrinology input in our care.

This conversation has confused me a bit. I had radical prostatectomy Jun 2020, with apparent spread into the margins. PSA was 1.58 in Aug & 2.32 in Sep , so started Eligard Oct, and radiation treatment the following May. PSA since Oct 2020 has been "<0.1".

Doctor plan has always been 2 years of Eligard (now Orgovyx), then stop that and see if the PSA remains undetectable.

This conversation makes it sound like once you start Eligard, you stay on Eligard. Is this the general case?

MrDon2 profile image
MrDon2 in reply to Mischa3

From what I have read a couple years ago, yes, for life. A lot of meds, studies and clinical trails have come out with different conclusions in recent years. Of course with each one of our bodies being different who knows what is right.

Here I go again (sorry folks).I had a Lung Melanoma and was treated with Keytruda and it Worked!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 05/11/2022 6:55 PM DST

I WOULD NOT GIVE PROSTATE CANCER A CHANCE TO SNEAK BACK!!!!!!!!!!!!!!!!!!!NO WAY!!!!!!!!!!!!!!!!!!!!!!!!!

Yes it's a risk to stop Eligard but that's where blood tests come in. After 12 months on Eligard (4 shots) I delayed having another injection until my PSA began to rise consistently. That took twelve months. In that time my body and mind began to heal. Nothing drastic happened but slowly I began to feel better and stronger as my body detoxed and my testosterone increased. Then as my blood tests returned three PSA increases (0.02, 0.14, 0.33 & 0.77) I had another shot of Eligard. My PSA returned to 0.02 and that was 10 months ago. My latest PSA was 0.13 so it seems it's on the rise. I have a little testosterone again and overall I feel pretty good but it's crunch time again. My Oncologist suggested trying a daily 50mg dose of Bicalutamide to see if it stabilises my PSA and testosterone. Kinda like finding a happy median or sweet spot. Not undetectable but a compromise where I have some quality of life and it still starves any PCa cells lurking. Sounds good to me. Everyone is different and what works for one may not work for another. To me it's not a big risk as I use regular PSA tests as my guide. All the best brother 😎 DD.

MrDon2 profile image
MrDon2 in reply to Doseydoe

Wish you the best of luck. I still have not convince myself one way or the other..

MrDon2 profile image
MrDon2 in reply to Doseydoe

I had my last Eligard shot three months ago (Feb.) and my recent blood result was PSA 0.04 and the T was <10. I hope it will stay around those numbers. Best of luck.

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