Hi all, my father is on his 5th month with Zytiga and his latest PSA was 1.92, the PSA keeps going down month after month but the MO states that when it'll drop to 0 he plans to pause the treatment for a while. I don't think it's a good idea and I dunno why he wants to do that.
Dad was diagnosed 18 months ago with a PSA of 95 and a G9 (5+4), got surgery 2 months after and the cancer was actually downgraded to a G7 (4+3).
He had 6 cycles of Docetaxel (low dose) and is currently on Lupron alongside Zytiga.
No mets so far, he only a few lymph nodes but they shrank with the chemo regimen.
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Dalph87
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Intermittent hormone therapy when there are already detectable mets is controversial. In the big study they did, the could not rule out that it is an inferior strategy. I can see it if your father wants a break from those medications.
Currently side effects of Zytiga - Prednisone - Lupron combo are hot flashes and slight fatigue, alongside lack of libido of course but these things don't really bother him at all so I really dunno why the MO insists about this, he believes the Zytiga will last more taking this approach.
My father is only annoyed by the weight gain caused by the Prednisone in actual, he claims it makes him feel swollen but I think there's no solution to fight this, except going to the gym and exercise but he refuses to do that, good thing he walks a lot everyday at least.
He is around 5'11 and over 100kg currently, very healthy if you don't count this disease.
I'm going to have a talk to the MO and tell him to not stop the Zytiga, he predicts it might work for one year, but nobody knows for sure since for some it lasted less and for others much more.
I was hoping you would reply, thank you very much and please continue doing what you're doing here, your knowledge is invaluable.
How much prednisone is he taking? I was taking 5mg twice a day and my cheeks were filling in. My MO said new studies showed 2.5mg twice a day was effective. Since I switched to the lower dose, weight gain has stopped. My PSA has been undetectable for eight months and my MO is keeping me on Zytiga.
It does that, but it is the WAY it does that GnRH agonism that may create side effects. GnRH agonists stimulate " the release of the pituitary hormones follicle-stimulating hormone (FSH) and luteinizing hormone (LH). However, after the initial "flare" response, continued stimulation with GnRH agonists desensitizes the pituitary gland (by causing GnRH receptor downregulation) to GnRH. Pituitary desensitization reduces the secretion of LH and FSH and thus induces a state of hypogonadotropic hypogonadal anovulation, sometimes referred to as “pseudomenopause” or “medical oophorectomy.”
So the reduction of LH and FSH may induce side effects too.
Instead of getting injections at certain intervals such as 1,3 or 6 months why not wait until the testosterone level go above a certain level, such as 20 ng/dL. My MO commented when I ask about adding testosterone to my quarterly blood labs that it wasn't necessary. From what I have read on these post I think it is.
What's the difference between shots every 3 months and shots when your T level goes above 20? Either way you get all of the side effects of castration levels of testosterone. Maybe it can save you some money.
I agree that it's a good idea to monitor T levels along with PSA and ALP. Or you can wait for PSA/ALP to rise and check T then.
My MO is no fan of intermittent ADT ..He says once you have the cancer under control, it's better to keep the pressure on and not let it out of the bag again when it might be difficult to get it back under control...
look i have been on zytiga for about a year until i can't get the drug. now 5 months my psa went from 11-28-60 now with the lupron/eliguard shot it dropped to 31. so let it go have a psa test every month and see how its working
if the numbers are around 4.0 average for males why risk keeping on it till it stays for months and the quits working.your decision read up get tons of on line suggestions and then u make the best decision u can and live with it
I think the chance of the disease morphing into small cell is around 17% (that's what I read here at least), pretty low but hopefully that will never be the case for my father.
Thank you very much for your input and for sharing the article, I will show it to our MO.
Not really enough information to go on. What was his PSA after surgery? How old is your dad? Why did he recommend surgery? Most wont do surgery after the horse has left the barn. Many men find each round of therapy is tougher than the previous, so when he gets to .01 he might want to get a QOL break. Tall A is right that the reviews are mixed about intermittent, but that you have to remember we are people not stats. As the patient you have to ask lots of questions then let the oncologist give you their reasoning. It is a conversation you need to have and then agree as a team and move forward.
Dad is 65y but a very healthy man, he doesn't have any other conditions.
The cancer never reached the bones, it was always in lymph nodes only.
Urologist claimed he could get it all and reccomended surgery despite local lymph nodes involment, despite the outcomes, both him and MO still claim the surgery really helped managing the disease (debulking the main tumor slowed down everything) and it also greatly improved dad's urinary function.
While it's true that the cancer uses the lymph system to travel around the body, scientific studies state that pc patients with lymph nodes mets only have the best outcomes and longest surival rates, mets to the bones are somewhere in the middle and mets to the organs have poorer outcomes. Our MO agrees with this.
Lymph is not blood. Blood is propelled quickly around the body by the heart pumping and is kept flowing back to the heart by valves in the veins and muscle contractions. Lymphatic vessels are networked without propulsion or valves and the nodes collect lymph, slowing the flow still further. Because lymph moves slowly, cancer cells and other detritus are trapped in the nodes. That's why cancer that's only in pelvic lymph nodes may still be curable.
No man can ever assume the Pca has gone if Psa goes to very low levels while having any form of ADT and I was told in 2012 that I'd have to have ADT for the rest of my life. No man could ever say it is a great delight to be chemically castrated but the alternative is Pca progression and an earlier time to depart from Earth. I have kept cycling right through all treartment including the present course of Docetexal infusions each 3 weeks, averaging 24km per day, about 65minutes of hard slog, so I maintain fitness and reduce side effects of all treats to minimum. BMI = 25, waist 99cm, weight is 83Kg, same now as at 40 when I had best fitness and raced on bicycles. But at 71, some muscle has turned into fat, so I am slower, but hey, I am alive, and fairly well, despite having bones riddled with countless mets and while I await Lu177 sometime soon, its being arranged now, because chemo is not yet giving any reduction of Psa from the 12.0 I had at chemo start about 13 weeks ago.
There's no easy escape from Pca, and a low Psa sometimes fools a man into thinking all is OK, but even if scans don't show mets, there may be hundreds that are just so small the scans can't see them. But from little things, big thing grow.
I don't much like Pca and I have lived with it since diagnosis which was too late in 2009 because Psa was only 6, but PG tumor was Gleason 9, 9 live samples, and PG was found to be inoperable when they tried to remove it. So I had RT and ADT and a fight until death do us part. Hardly a week goes by without seeing one doctor or another, but I have grown to like them because at my age I find the ppl who work at the hospital are the only ppl who care about me, apart from myself.
I've had a lot of good life though, and I cycled 40km today, life is just fine.
But my fight is just a series of choices, and I cannot win forever, but I can savour the last years. I will be starting Lu177 soon.
Things could be worse, and I could be cycling up and down the steep hills in Heaven trying to carry a large harp, then being forced to learn to play it. Or even worse, be Down Below, and being forced to shovel coal into large fires.....
I jest of course, because I see no reason to believe in God, or anything supernatural, because for me, Nature appears with greater wonder than anything we collectively can imagine, with some attached label like God, etc.
We are just here short while, and we should be good to each other to make our time enjoyable, and the time of others. We may have to defend Goodness, and existence poses dilemnas, and we have big enough brains to make this a most vexing problem.........
I assume that someone [possibly NASA] is still looking for The Fountain of Youth! If they find it and we get a taste, maybe we can hold on long enough for a miracle cure for this retched disease! So till then, we just need to try to find some happiness in each day.
NASA? is it the Non Angelic Silly Association? Some quite odd ppl hang out there, all searching for summink, while the wiser ones tell the dumber ones "there's no use searching for esoteric stuff, OK"
The more they search for a cancer cure, the harder and more complex it becomes, and some think its foolish to try because its God's will, youse done bad, so He gives you summink in response.
But I can't see there is a God, but if there is one, and if he did design life, then about the only way he could have manufactured life after the design phase was to start with simple cells and leave them alone for about 4 million years, and look how that turned out. People having wars and shooting each other up, getting sick and dying, arguing over different Gods, doctors charging too much, and I reckon the Designer gets pissed off every time he pokes his nose around on Earth and the other billions of life rich planets to see how the original invention turned out. This Designer entity tried to hire ppl to help him figure out biochemistry and quantum physics and no matter how many work on all this, the design problems keep arising, and now he has suffer the indignity of ppl not believing in Him, and never praying to Him,
and instead going online about all things, looking for a cure, money, and more time to spend it. Now there's a big row going on in Heaven where Adam and Eve live in a special mansion for the First Couple. There are all these monkeys who won the right to go to Heaven. And they are campaigning to get mansions because they evolved before Adam and Eve and have 95% of the same DNA as we do, hence the basis of their noisy claims. And just what happens when the legions of male angels get Pca?
And what about the female angels with Bca?
None get NSSD because they are not allowed make whoopee. Its like a bunch of priests and nuns Up There, nobody gets born there, so there's no children's toy factories in Heaven. Most don't want to bonk because some are 3,950,000 years old.
Yes, but my Lu177 is not available here locally, and I have to travel 300km to get it.
I'm lucky its only 300km, because 2 years it was only available 3,000km away.
There are not many places in Australia where I could get it, but at least it is available, and first Lu177 is on 9 November, so it is soon, and maybe I get Psa low, and unlike ADT which just puts Pca cells to sleep, the Lu177 kills Pca cells. So the lower Psa after Lu177 means a reduction of cancer. A man can have a very low Psa but his Pca is in many places and many mets.
Good luck Patrick-Turner....Lu-177 is supposed to work really well on bone mets... I am new here with a Gleason 8 and one bone met...stories like yours give me hope...
Yes, maybe the scans can see only 1 bone met so far, but I have had 4 x PsMa Ga68 PET scans so far since mid 2016 when first mets showed up some 7 years after diagnosis with Gleason 9, and 9 positive biopsy samples. So you cannot ever assume there is one bone met because there may be hundreds, most far too small to be seen yet by any type of scan. Only the passing years will show what is really there. Early mets are suppressed with ADT like the primary site, so the cancer hides for a long time, but from little things, big things grow, and that's my experience.
Mine was found by auxumin scan, could not be found by bone scan or CT scan....I know that I can't rely on that to be the only lesion ....they started me on zytiga, prednisone and Lupron... I am hopeful about trials with TRC253, TAS3681, and development of cyclic peptoids that may help with the issue of castrate resistance....for now, I watch clinical trials, pray, exercise, follow a low meat, low carb diet...lots of veggies, and will be starting a curcumin supplement.... Good luck to you...
all treatment for prostrate cancer the meds will stop working. so by keeping ones psa very low like your dad stop the treatment until it starts to grow with numbers. the longer u can keep off of it the longer the drug will do it treatment fairley will. the longer without it the longer it will do the job right.
your psa isn't in the normal range. average male without cancer is 9-4.0 so stop worrying, relax your doing fine. not sure how long u have be dx with it. me its been 10 yrs so relax have a drink and have it check every month.
I was on Zytiga + P for 7 months the last 6 months PSA was undetectable. MY MO and I decided to take a holiday from all treatment. Holiday lasted for two and a half years then PSA climbed to 2.0 and restarted hormone therapy with Erleada and Eligard. Now 1 month out PSA undetectable. MO says I am on Erleada until it fails but agrees to holiday if I want it. At this time I am thinking about a holiday if PSA is undetectable for a total of 6 months. My PCa history is much longer but I am responding only to taking a holiday. If I remember correctly OAS is the same whether on continuous HT or intermittent HT. QOL is the difference!
No. I was on Lupron when taking Zytiga. I had a two and a half year holiday from both Lupron and Zytiga. When my PSA started to rise my new MO started me on Eligard. After several months I became castrate resistant then MO added Erleada. That is where I am today hoping to get 6 months of blood work showing PSA undetectavle.
I took Zytiga for 8 months and discontinued because the prednisone caused a huge duedonal ulcer. My PSA is 0.03 (never was more than 1.7) . I'm hoping to get a year or two reprieve and almost certainly I will need some form of ADT after that.
GS 4+3, stage 4, surgery + radiation for oligometastic disease, age 80, very fit except for the Pca. Originally diagnosed in 1999.
Never been castrate resistant. My latest PSA was less than 0.015 (not detectible on ultrasensitive test) and my testosterone is back to 456. I've been here before after treatment for oligometastic disease, but have failed every time after about 16 months. Meanwhile, life is good. If the dreaded PCa reves up in another year, I just hope it will again be oligometastic and I can get it treated again and maybe get another repreive after radiation. Is there anyone out there who has found a way to take Zytiga without Prednisone?
I know many have mentioned halving the prednisone and tall Allen mentioned another drug to try with Zytiga if it becomes ineffective at lowering psa but I don’t think the one he mentioned replaced prednisone.
Please keep posting with your unusual results which are very interesting due to your QOL, duration and longevity.
There has been a lot of discussion on the intermittent therapy here on this forum. I think you should familiarize yourself with it. My MO at MSK (who is very aggressive) is also recommending to take me off. It's a question of delaying early resistance, vs. potential complications of not using the medicine. There has been a Canadian study that concluded:
"CONCLUSIONS AND RELEVANCE:
Intermittent androgen deprivation was not inferior to continuous therapy with respect to the overall survival. Some quality-of-life criteria seemed improved with intermittent therapy. Intermittent androgen deprivation can be considered as an alternative option in patients with recurrent or metastatic prostate cancer."
It seems to me that there is some confusion. One thing is ADT (continuous vs intermittent) and other thing is ADT+Zytiga. The trials showing a benefit of Zytiga used continuous ADT+ Zytiga. I never heard of a study of ADT+zytiga continuous vs intermittent. I may be wrong but IMHO the SOC with ADT+Zytiga is continuous therapy.
I understand your criteria of intermittent ADT+Zytiga. There are not data for a direct comparison of ADT (Lupron or similar) + Zytiga continuous vs intermittent. The data are that ADT+Zytiga is a continuous therapy until failure or intolerance of the treatment. We can not extrapolate from the studies of ADT (lupron or similar) continuous vs intermittent. There is not controversy. The SOC from ADT+Zytiga is continuous therapy. Doctors doing intermittent therapy of ADT+Zytiga are experimenting outside a clinical trial.
like all drugs if u or dad is below the average numbers then stop. the worst thing one can do is have the drug not to work anymore then u have to find another med that either your insurange or ss will pay. u can stop all drug for your time. have the doc do psa's every month and if it goes past the normal rate 4.0 then start up again. remember all meds will stop working so if u monitor them just relax and watch
your .o3-.o5 average males is 0-4.0 so whats your problem u basically don't have cancer u are below the average numbers in makes who don't have cancer. u know how many out there with psa at 30,90,600 and higher when yours isn't at 1.0 get a drink and forget it for months dude
I had radiation as primary treatment, so my PSA of 0.1 is excellent, as is anything under 0.5.
After prostatectomy, PSA should quickly become undetectable. if it doesn't, then it is from cancer left behind, probably not due to benign causes. It can take a long while for metastases to become detectable and PSA to rise appreciably because of that.
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Reaching Castrate Resistance? Increase in PSA,ALP.
PSA Rising While on Lupron and Zytiga
Has anyone experienced a significant decrease in PSA on Zytiga and then an increase 
PSA doubled, MO has had little input
