I was diagnosed on June 2019 with PSA... - Advanced Prostate...

Advanced Prostate Cancer

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I was diagnosed on June 2019 with PSA at 166, I'm 48 about to start Zytiga next week, hopefully not a lot of side effects combin with Lupron

Redskins1971 profile image
61 Replies

How long can you be on Zytiga and does it effect your relationship with your spouse

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Redskins1971
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LearnAll profile image
LearnAll

Zytiga blocks testosterone production in all three sites.viz. Testicles..Adrenal glands and cancer cells themselves. So Zytiga is broad spectrum testosterone blocker.

Relationship with wife does not get affected by Zytiga...its only physical sex that gets affected. And you know well..relationship is much more than just physical sex.

Redskins1971 profile image
Redskins1971 in reply toLearnAll

Thanks

tom67inMA profile image
tom67inMA in reply toLearnAll

Great response!

DarkEnergy profile image
DarkEnergy in reply toLearnAll

"Relationship with wife does not get affected by Zytiga..."

Well, Relationship with Zytiga does not get affected by Wife, sorry couldn't resist.

I'm blessed with a wonderful loving wife, she always tells me, PCa and its treatment, vis a vis -side effects does nothing to impair our relationship whatsoever.

In fact, I've been surprised that with some extra (wife) effort, physical sex can occur, with some help from Sildenafil and patience.

LearnAll profile image
LearnAll in reply toDarkEnergy

Just like your wife, my wife is a sweetheart..a true lover who does not care about anything as long as its for my well being. Only women can sacrifice so much. I salute the better gender.

tom67inMA profile image
tom67inMA

Stay as active as you can. I'm on Zytiga + Lupron + Xgeva and last fall I was working full time and ran a half marathon. I recall taking about a month for the body to adjust to it.

LearnAll profile image
LearnAll in reply totom67inMA

Hey Tom, I got a new idea about walking I am using Ankle weights and wrist weights for walking to increase its weight bearing part for muscle strenghth. Going to Gym every day is difficult.

tom67inMA profile image
tom67inMA in reply toLearnAll

I always found walking with ankle weights felt strange and hard on the tendons, but if it works for you then great! If you can manage it, running up hills will also build muscle strength, and running down hills will build bone strength due to the impacts. But it's not something everybody can or wants to do.

The real key point is do whatever you can to get off the couch (said the guy laying on the couch typing on his tablet) :-)

LearnAll profile image
LearnAll in reply totom67inMA

But In Florida, we do not have Hills...we just have long flat landscape with lot of sunlight.

tom67inMA profile image
tom67inMA in reply toLearnAll

So ankle weights work really well for you :-) I forget that not everybody has to deal with snow covered hills, shovelling, and sub-zero wind chills. Remind me why I live here... :-)

depotdoug profile image
depotdoug in reply totom67inMA

We got a snow job last eve right smack dab during church. Got cardio weight training exercising shoveling snow for 40 min. Felt great!!!!

Soccermom28 profile image
Soccermom28 in reply totom67inMA

So you can root for the Patriots?!? 😉

tom67inMA profile image
tom67inMA in reply toSoccermom28

The Patriots were fun to cheer for when they were a sad sack team with a who-dat QB named Tom Brady and through a series of unlikely events (remember the tuck rule in the snow game?) won the Super Bowl. Now they are the New York Yankees of the NFL. Of course, as a kid growing up in CT I was a Yankee fan.

monte1111 profile image
monte1111 in reply totom67inMA

I used to root for the Patriots because everyone I knew just hated Tom Brady. I rooted for the old man and drove everyone crazy. So sad he will not be there Sunday. Anyone not rooting for the 49ers will most definitely be thrown over the balcony railing. Sad to see the Oakland Raiders will be no more. I'm sure they will now be known, and you heard it here first, as the Las Vegas Losers.

Currumpaw profile image
Currumpaw in reply toLearnAll

Hey LearnAll!

Steve Reeves and Power Walking--use your search bar.

Many years ago I would run a short course wearing paratrooper boots, and a 2.5 pound weight on each ankle and wrist. I'd do a sprint to exhaustion after completing the run and stripping off the weights. Ahh to be in my 20's again!

Try picking up the pace at the end your walk and I think you will find it beneficial. Start easy.

Currumpaw

monte1111 profile image
monte1111 in reply toCurrumpaw

At granddaughters 7th birthday I said to Grandpa, who was in his 80's, it sure would be nice to be 7 again. He just said, "Ahh, to be 70 again."

depotdoug profile image
depotdoug in reply totom67inMA

One half marathon what a goal tom67inMA

tom67inMA profile image
tom67inMA in reply todepotdoug

The footnote is that I ran 6 of them prior to diagnosis so it really was a return to prior form, but still it was everything I could have hoped for at diagnosis. A full marathon is also in my plans but got to deal with another unrelated cancer first.

depotdoug profile image
depotdoug in reply totom67inMA

Thanks. I’m striving to do interval run/jogging just on treadmill Hills or Random settings. Not sure if marathons or in my life future.

Maybe a 5K or short jogging jaunts.

Never ever thought that would be a goal 8yrs 9months post Sudden Cardiac Arrest. Plus Advanced PCa attacking meds. Trying to stay strong ...

tom67inMA profile image
tom67inMA in reply todepotdoug

The important part is to get out and get moving and see what works for you and what you enjoy. I do a handful of 5Ks each year but to me they're social occasions with my running club friends. One of my half marathons was in Indianapolis and the route included a lap of the speedway, so I can honestly say I've raced at Indy.

On the other hand, I have no desire to run Western States: wser.org/

depotdoug profile image
depotdoug in reply totom67inMA

I’m an IU Health Simon Cancer Center patient guy since last Aug..

Live in Ft Wayne.

dockam profile image
dockam in reply totom67inMA

Maybe someday we can do this together: philadelphiamarathon.com/

I'm 2 weeks into Zytiga - 1/4 dose with yogurt when I break fast at 1pm.

Have Surf City marathon on Super Sunday. Will see how I do :-)

tom67inMA profile image
tom67inMA in reply todockam

I'd like that, but have to get my new cancer figured out first. :-(

dockam profile image
dockam in reply totom67inMA

My sincerest prayers for you my Brother. Fight On

Tall_Allen profile image
Tall_Allen

You can be on Zytiga for as long as it keeps working - a median of about 3 years for men with mHSPC. Because of the Lupron, you will have little libido - you may be able to get an erection, but your desire for sex will be much diminished. You should make sure your spouse is aware that it's the meds, not her.

LearnAll profile image
LearnAll in reply toTall_Allen

So Median effective time for Zytiga is 3 years so in remaining 50% people Zytiga can remain effective for 4 ,5 6 or even 7 years. Right ?

Tall_Allen profile image
Tall_Allen in reply toLearnAll

Right - for newly diagnosed men.

depotdoug profile image
depotdoug in reply toTall_Allen

Guess that leaves me out of the median. I’m not newly Dx’d. 3rd time recurrence, 1st IMRT. 2nd ADHT LUPRON/casodex 3rd time now Lupron- (since) 9/10 Abiraterone- Prednisone combo(since 12/10). Correct Tall_Allen?

Tall_Allen profile image
Tall_Allen in reply todepotdoug

You are saying you are already castration resistant? Then that doesn't apply to you.

dougnola profile image
dougnola in reply toTall_Allen

Dear TA. Can you define “newly diagnosed” in this context? For example, I was put on Zytiga just six months after stage 4 diagnosis (once they finished chemo and radiation). But given my 500 psa and numerous bone nets (Gleason 9), I clearly had this in me for awhile. I’ve just seen this Reference before and I’m not sure I understand it. Thanks! Doug

Tall_Allen profile image
Tall_Allen in reply todougnola

In STAMPEDE, "newly diagnosed" metastatic hormone-sensitive meant treatment naive also. In LATITUDE, they were given abiraterone within 3 months of starting hormone therapy.

dougnola profile image
dougnola in reply toTall_Allen

That’s good to know. Thank you, TA. My dx coincided with stampede and latitude publication (with zytiga use almost the whole time) so I’ve just hit the 3 year median mark...let the games begin to see how far I can take this. ✌️

LearnAll profile image
LearnAll

Zytiga side effects are easily manageable.

(1) High Blood pressure: Prednisone controls it..and the remaining BP can be controlled by Losarta and/or Atenolol. Note that Losartan and Atenolol themselves contributes to slowing growth of cancer.

(2) Low serum Potassium: can be managed by eating vegetables and fruits which are high in Potassium. Banana, Dates, citrus fruits, lentils are all rich in Potassium.

(3) High Blood Sugar: Weight reduction and minimize use of sugar, carbs and daily long walks can stop increase in blood sugar.

Overall, Zytiga isb a great medicine. I take 250 mg of Zytiga a day with a full cup of full fat yogurt and so far its working well.

All adt is aimed to castrate us.. so , yes it strikes down the libido . I’m mad as hell for you at 48 . This is a slap in the face with a big fish .. just not fair. I was angry at self and the entire world as I was 53 myself upon dx. Why me? Poor me? I put my beautiful wife thru hello for over two years of self loathing . All got nothing. In time my friend you can adjust to just about anything in order to survive. It ain’t fun it ain’t pretty . You need strong reasons to ensue the bs. Other things will take priority such as surviving this bitch of a disease. Think about getting through the here and now . Until you get to clear status is all a white buckle ride . Adt can work . But it has many side effects .Muscle and bone loss and cognition too can be lessened. We need to be happy with less. Daily happiness promotes health. Anxiety , anger , stress and depression all feed into pc’s hand. Go on and enjoy what you can in life..Kerp intimacy alive .. don’t take anger out on your partner like I did for too long . Despite my behavior she is my savior. You early age just might help you make it over the hurdles to recovery and remission . T_A days 3 yrs medium on zytiga. Go for it ! And don’t look back . I’m into all of the natural stuff like healthy . Please don’t take to heart anyone saying you’re fine. You have no expiration date stamped on your ass. Live healthy . Being optimistic is good ! It’s all horrifying at first . By this time next year you’ll know more than you ever wanted to know about hormone therapy . 😂You can do this . We all have ..✌️

Redskins1971 profile image
Redskins1971 in reply to

Thanks

in reply toRedskins1971

You’ll find what’s best for you .😎

Joes-dad profile image
Joes-dad in reply to

Very well put Scott!

dougnola profile image
dougnola

Hang in there, Redskins! I was diagnosed at 50 (psa 500 and oodles of bone mets). After radiation, taxotere, and carboplatin, went on Eligaard and Zytiga 7/17 and am still at it. It’s not easy at first but you’re not alone and you get used to it. My quality of life is awesome these days and I take it day by day. ✌️ Doug

depotdoug profile image
depotdoug in reply todougnola

From one DOUG to another DOUG. Wow 500 PSA &50 and still a smack at your life. But you took hold of your life and lived it are living it. Awesome DOUG. I’m 67 will be 68 March 10. Dx’d 06/15/2005. Thanks for inspiration...

dougnola profile image
dougnola in reply todepotdoug

I’ve never met a Doug I didn’t like. Hang tight! :)

depotdoug profile image
depotdoug in reply todougnola

Need one more DOUG. Then 3 DOUG night.

in reply todougnola

🕊🕊🕊🕊👏🏼👏🏼

Longterm101 profile image
Longterm101

Do u live in dc area or just a redskin fan ?

What was your Gleason score? Any bone Mets?

Redskins1971 profile image
Redskins1971 in reply toLongterm101

Yes I live in DC area. My Gleason score is 9, no bone Mets.

Longterm101 profile image
Longterm101 in reply toRedskins1971

me too.... Fairfax.

Any lymph node involvement?

Redskins1971 profile image
Redskins1971 in reply toLongterm101

I work in Faifax

in reply toRedskins1971

Good no bone mets. 👏🏼

Patrick-Turner profile image
Patrick-Turner

Well, if you have had ADT ( Lupron etc ) since June 2019, I suspect that Rodger is well on the way to becoming dysfunctional. I was diagnosed at 62 with Gleason 9 inoperable Pca and Psa only 6 in late 2009, when I was 62. I was fully sexually functional but I never had any long term success with shielas because they seemed to want me to be a perfect man, even though that were very imperfect. So I never could keep a shiela "on the porch" and they enjoyed my werk as functioning fahking expert, until the idea of commitment crept up in their minds as it always does, and I was never to leave my house, so they vamoosed in flood of tears and I wondered why, never got answers, so by age 62, could not care less about having sex or having any relationship because experience told me it would never work out. So when Pca came along, the Pca at PG made it impossible for docs to proceed after opening me. So my primary treatment in 2012 was to be 2 years ADT plus 70 Grey EBRT after first 6 months of ADT.

I had the EBRT at 8 months into ADT, and Psa went from 8 to 0.08 at after EBRT.

I paused from ADT at end of 2 years of ADT in late 2012, and testosterone returned to a high normal figure and so did desire for sex which could only be with myself because me having a partner was so impossible for my 50s and 60s, and because most shielas have paused from men by that age, ie, got their menopause from hormone changes, unless they put themselves on HRT, hormone replacement therapy that keeps then alive sexually as long as their man at least.

But anyway, during the first 2 years of ADT I could still please any shiela who wanted to engage the process of temporary pussy destruction ( TPD ) for purpose of general increase in sense of well being. But the intensity of orgasms was not as strong. But after pausing ADT in 2012, within 6 months Psa went from 0.08 to 8.9 in 6 months, the treatment was declared to be a failure, as it so often is, in 90% of cases with a high Gleason score of 9 to begin with.

I re-commenced ADT. Psa dropped to 0.2 fast, then during next years to 2015 Psa slowly rose, and these 3 more years of ADT completely exterminated any capability that Rodger ever had, the sponge tissues within Rodger that fill with blood for an erection didn't work well, and Rodger didn't get much longer, but got a permanent bend towards ground, and became impossible to use for penetration of any Fanny Hottly. Without testosterone Rodger atrophies, and gets fibroid tissues forming in erectile tissue, preventing a good hard-on. The skin joining head to shaft became fragile and sometimes would tear, and bleed a bit, and all sensation of pleasure from any stimulation ceased and orgasms went to zero. The only useful thing I might do now to please a sheila who is hot and needs a fix from a man is to wield a dildo or just do a very job of Muff Diving, but Rodger has no place at all now, but I find at 72 that the opportunities for Vibrant Intimacy with any shiela just don't happen, and will never ever happen again in my life; women are now all untouchable with very many having become allergic to anything male.

I like to ride a bicycle and this morning I cycled 60km from 6:30am to 9:30am to avoid the heat of a day when it was 35C in the afternoon. I have never ever found any shiela who likes riding bicycles as much as I do. I can say that I prefer to ride a bicycle for 2 hours than ride a shiela for 2 hours. If I ever met a possible partner who was "equal to me" she would have been also de-sexed by her medical treatments and come to terms with it and would be able to have a sexless relationship with me. But no, most women are quite destroyed by being altered by doctors, and their self esteem is doomed after a double mastectomy etc. I have a sister who was very hot at 64 and then she got Brca. She now can't talk about sex. But she got remission.

I had chemo in 2018, and while getting it, there was a man in next chair along who told me that when he was diagnosed with Pca his wife vamoosed real fast, leaving him to cope alone with all his troubles. He may have been 50, he looked OK, but was sad about losing his wife. So some relationships cannot withstand the loss of ordinary fulfilling sex, and muff diving just does not satisfy like a man with a good working Rodger. The fact a partner gets a fatal disease is too hard for many partners to cope with, better to leave, and hope the docs will provide the fix until death.

But I found relationships with women in their 20s when I was also that age could founder on unknown flippant reasons; I was never told why, oh no, women are NOT always nurturing and caring or communicative or loving, or permanently interested in sex, and despite their efforts to be with me, I was never ever able to find out why they wanted to stay, or why they really left, and I know they had much to gain by staying, but basically they hated love. I just continued onwards, paying off the house loan, finishing house extensions and really, having a woman as a partner wasn't something I needed. It was complete bliss while it happened, until the novelty wore off, then they'd flee overseas on yet another useless effort to "find themselves" or whatever. So I have zero female friends, except many of the nurses who have cared for me at Canberra Hospital in past years. I shared my house in a group-house arrangement from 1979 to 2014. No sex involved with nearly all shielas who thought I offered a good deal on the rent. But a couple wanted bonk me, and did, then things went to bits, and when they wanted to leave, I opened the door, closed it gently, and never saw any of them again. It was impossible to be friends after a breakup. One told me that she was so guilty just phoning me 10 years later to see if I was alive, and she feared the horrid temper of her jealous controlling husband. He carefully read the numbers phoned on the telephone bill.

So its awkward for me to talk about sex and women and Pca without feeling pain of the past.

I have no tribe, no family, no kids, and no sense of belonging with another human, and I have gotten use to that since well before Pca diagnosis and yet I ain't depressed. Life goes on until it don't.

Patrick Turner.

Grumpyswife profile image
Grumpyswife in reply toPatrick-Turner

Geez Patrick-Turner I forgot how.....interesting your life observances can be. My man has never shared his inner most feelings the way you do and I have to pry everything out of him.

You probably just never ran into the right Sheila.

Patrick-Turner profile image
Patrick-Turner in reply toGrumpyswife

I didn't run into the right sheila. But I walked over to them in a bar and offered to buy a drink. They knew what they were looking for, but vaguely, and then after exchanges of light hearted bundles of words, I'd take them on a date later, and see what happened, and tried to be honest and humorous.

That worked out for awhile, but sometimes didn't, so I could not easily realize what my general plan for future existence with any female would be or should be and I knew a wish list was deadly, and all I could do was adapt to who I found available.

Most sheilas, aka Australian Ladies, cannot be fully understood. In fact, all ppl under 30 have difficulty knowing each other or themselves, but the force of attraction is a mighty force because Rodger and Fanny have evolved to not stay separated for long or else ppl get mightily upset, sad, depressed, maybe suicidal, and the brains of two young ppl cannot really explain in words to each other properly what Rodger and Fanny really want.

Between "successful couples" both realize soon that finding better than what they have found would he hard and looking for better would be stupid, so some stay happily close for 50 years, even though Rodger and Fanny die slowly, or are killed off by eager doctors offering Pca treatments or hysterectomies, and then aging also kills off R+F and kills off the other party included, Desire, so was life ever simple? No it was not, All discussions of emotional things seemed to lead to dead ends of mis-understanding, or fractured or broken resolutions of problems, so success with anyone else means working within limitations of other and yourself and having Desire wisper in your ear, "go for that person...."

We become distorted character types of the marvellously attractive ppl we once were, and more critical as we age, and seeing less benefits of togetherness and more benefits of independence. We begin to fear the commitments, and the responsibility of living with another as we age.

With the right person we don't. But the right person is so rare......

Its too hot here now, and there's no more typing room for issues about love.

Patrick Turner.

45yrsDenmark profile image
45yrsDenmark

Am only 45 and I am also on Eligard and Zytiga... cannot get erection anymore... and not even got radiation yet. Viagra has no effect. Will try vakuum pump... too early this BS hit me ...

in reply to45yrsDenmark

It’s a crying shame under 50 .. I feel ya.., Hang in there ......

Irun profile image
Irun

I was diagnosed at 49 PSA 342. Been on zytiga for 4 years now, aged 54.

I have ru. Ultramarathons all over the world , 150 miles plus each time. Last year I ran over 3000 miles, I have run every day since 23rd December . I only ran occasionally before cancer . You can do anything you believe in , as for sex , does not exist but I live my wife more than ever.

in reply toIrun

My hat off to you Irun. You are an amazing human ... Inspirational . .. Thanks🌵

timotur profile image
timotur in reply toIrun

Keep on running, Irun, that’s great. Best of luck.

Raymonda100 profile image
Raymonda100

What was your Gleason score and Stage? That will determine a lot of how you respond to Zytiga. My husband was Stage IV at diagnosis - 74 y.o. significant widespread mets to skeleton. Zytiga worked for about 9 months, then the mets started spreading. Live with hope that you will be on the right side of the median years of effectiveness distribution, but understand you may not and research and be prepared for next steps in treatment, e.g., chemo. With regard to your sexual relationship, it will definitely change (no libido/ED); how you and your wife navigate the change will depend on your overall relationship. My husband said ADT gave him a sex change operation - he cries easily, feels anxiety and fear--emotions that he never allowed himself to experience pre-ADT. In my view, that has helped him to cope with cancer, rather than burying those feelings and having them expressed as anger.

I hope Zytiga works for many years for you.

Break60 profile image
Break60

Tough to hear of getting this Disease so young! Your sex drive and ability will dry up which could effect your marriage and self esteem if you or she lets it happen . You need to adjust to a new normal!

Chugach profile image
Chugach

I was diagnosed at 46, with Gleason 10 stage 4 PC, I’ve been through about everything now. Zytiga only helped me for a year before it failed, but I didn’t really notice any side effects from it. Just force yourself to exercise every day. I’ve been on Lupron for 4 years. Those two were not too hard on me. Regarding relationships find other ways to connect and be close.

Sorry you’re here skins, but welcome!

As you can tell by your 50+ replies, this is a great forum. I wish you the best! ✌🏻❤️

Redskins1971 profile image
Redskins1971 in reply to

Thanks

I just saw a guy that was on it for 8 years . That’s pretty good. No cookie cutter . One size doesn’t fit all .. Good luck.🍀

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