Hi...my husband stopped taking zytiga... - Advanced Prostate...

Advanced Prostate Cancer

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Hi...my husband stopped taking zytiga/pred. due to a long story...been 3 months now...he's at .01 psa though is stage 4

Sunnyby11 profile image
44 Replies

any words of wisdom?? He's 75 , lost muscle and bone mass I'm sure...almost 2 yrs since diagnosis ...still on lupron...scan shows mets throughout skeleton but have decreased...he now has an almost recognizable personality since coming off...sigh...I do worry though...he won't tell the MO and not sure when next blood test might be...thanks

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Sunnyby11 profile image
Sunnyby11
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44 Replies
Tall_Allen profile image
Tall_Allen

Has he had docetaxel yet? It's just six 3-week cycles. He should talk to his oncologist about it. If he can make the case that there have been personality changes, he might be able to get Nubeqa.

Sunnyby11 profile image
Sunnyby11 in reply to Tall_Allen

I'll check this out and get back to you...he's asleep ie up at night sleeps in day a lot...still...we are in Canada...

Sunnyby11 profile image
Sunnyby11 in reply to Tall_Allen

The MO said NO chemo ever...

Tall_Allen profile image
Tall_Allen in reply to Sunnyby11

Why?

Sunnyby11 profile image
Sunnyby11 in reply to Tall_Allen

She's a "piece of work" ...maybe since he was so frail at the start ??

Tall_Allen profile image
Tall_Allen in reply to Sunnyby11

Up at night, sleeping during the day is a symptom of depression. That is common in cancer patients. He should talk to his doctor about taking an antidepressant.

Laddy45 profile image
Laddy45 in reply to Tall_Allen

yes the MD put him on one...before he came off the zytiga...it really did very little if anything...but he was sick at the time as well so...

Tall_Allen profile image
Tall_Allen in reply to Laddy45

There are so many different ones to choose from. My mother tried 3 before she found one that worked for her. Some may take a couple of weeks to kick in and for the initial side effects to disappear. They can also do "cocktails" with lower doses of each one.

TheTopBanana profile image
TheTopBanana in reply to Sunnyby11

My father has been taking an antidepressant because I convinced him and even though he still has his dark moments is has helped ALOT! At the start of the diagnosis he could not sleep, could cry multiple times during a day and felt that everything was meaningless etc. Now he can talk about something else, for the first time. I would highly recommend it.

depotdoug profile image
depotdoug in reply to TheTopBanana

What is his anti-depressants name?

TheTopBanana profile image
TheTopBanana in reply to depotdoug

Venlafaxine

TheTopBanana profile image
TheTopBanana in reply to Sunnyby11

Also, perhaps a strange recommendation since I am a psychologist myself, but I would not recommend therapy at this point. When there is acute chrisis it's better to get the basic functions working first (eating, sleeping, being able to get distractions from the sickness etc.) But only my two cents. I really hope it's turns around for the better for both of you!

LearnAll profile image
LearnAll in reply to TheTopBanana

Therapy can still help up to a point, It has to be centered around getting him to explore his various options and deciding use of medication to restore his sleep, food intake, reduce pessimism etc. Goal of therapy can be to develop enough insight about his depressive symptoms so that he can make informed decisions about his treatment.

Laddy45 profile image
Laddy45 in reply to LearnAll

we shall see re that...good advice...just enjoying getting my Guy back a little bit right now...thanks ...

in reply to Laddy45

❤️🙏

in reply to TheTopBanana

Your two cents hold much weight! Thanks

dhccpa profile image
dhccpa in reply to Tall_Allen

Doesn't one habe to wait a long time before doing Docetaxel after Zytiga?

Tall_Allen profile image
Tall_Allen in reply to dhccpa

No, why? My friend went straight from cabazitaxel+carboplatin to Zytiga after his 6th infusion. Some on this forum combined docetaxel and Zytiga.

dhccpa profile image
dhccpa in reply to Tall_Allen

You posted a paper on proper sequencing of treatment a month or so ago. I thought it said that

I'll double check.

Tall_Allen profile image
Tall_Allen in reply to dhccpa

This one?

prostatecancer.news/2019/12...

dhccpa profile image
dhccpa in reply to Tall_Allen

Yes

dhccpa profile image
dhccpa in reply to Tall_Allen

I believe it was in Prostate Cancer News and said if one starts with docetaxel, one can use Zytiga after 15 weeks, but if doing Zytiga first, one may have to wait much longer before starting Docetaxel. Still trying to find the link, though.

Tall_Allen profile image
Tall_Allen in reply to dhccpa

"For logistical reasons, it may be useful to start with six cycles of docetaxel, which would take 15 weeks. In this way, Zytiga, Erleada or Xtandi can begin 15 weeks later. If one starts with Zytiga, it may take three or more years before it stops working and docetaxel can be tried (Among metastatic men, failure-free survival was about 4 years in STAMPEDE, radiographic progression-free survival was 33 months in LATITUDE). It seems that one can receive more therapies in less time if a patient begins with docetaxel.

It is possible that concomitant early use of Zytiga and docetaxel may have a synergistic effect on the cancer, and in preventing the onset of Zytiga resistance. This is pure conjecture and would have to be proved in a clinical trial. The downside is the cumulative side effects."

prostatecancer.news/2017/06...

dhccpa profile image
dhccpa in reply to Tall_Allen

I see your point, since they've already done Zytiga.

dhccpa profile image
dhccpa in reply to Tall_Allen

prostatecancer.news/2019/12...

Here it is.

Laddy45 profile image
Laddy45

might add here that my concern is - coming off zytiga - big risk or just go back on if psa goes up in increments of concern... ??

Tall_Allen profile image
Tall_Allen in reply to Laddy45

Make sure he slowly ramps down from the prednisone - that is the main danger for stopping abruptly.

Laddy45 profile image
Laddy45 in reply to Tall_Allen

ya too late now...

Laddy45 profile image
Laddy45

...and thank you Gentlemen for your insightful replies...

An almost recognizable personality sounds like a plus ? And Maybe the Lupron can help on its own .? So he isn’t telling his MO that he’s stopping these? I don’t understand? Why not?

Laddy45 profile image
Laddy45 in reply to

Well I'm not sure...he's funny like that...sigh...if I ask he just says he's just waiting for a bit - end of discussion...funny boy...

in reply to Laddy45

Hang in there ! He needs you so . Love is the answer . This disease is so dam brutal on all involved . One day at a time sweet Jesus ! Keep the faith . 🙏

depotdoug profile image
depotdoug in reply to

One day at a time, where have i heard that before. Oh Celebrate Recovery now almost 10 years 9 months no alcohol.

Sunnyby11 profile image
Sunnyby11 in reply to

Thank you...yes love is...best to you...

Golfnow profile image
Golfnow in reply to

It is brutal ...and add Covid to the mix!🙏

Patrick-Turner profile image
Patrick-Turner

Gee, a man who does not tell his doctor that he is not continuing with treatment runs a risk of the doctor not wanting to treat the man further and the Pca may soon give a lot of trouble. A man either wants to maximize his time alive or maybe not, I guess that depends on his perceived quality of life. The type of scan used to understand Pca status is important, and my guess is that if Psa = 0.01 which is very low, the size of all mets must be low, thus not causing diminished QOL.

I would say this will not continue and Psa will rise without treatment and a plan to prevent Pca increase will be needed. Chemo could be used, but where a man finds ADT is intolerable, he will find chemo a whole lot worse, and it may have no long term benefit effect if any at all.

I've been fighting Pca since diagnosis in 2009 with Gleason 9, and got used to ADT without any major personality change, and now have had 6 doses Lu177 since Nov 2018, and for me, keeping Psa below 5 means I have Pca that does not cause any aches or pains from the remaining mets in my bones. I have no idea how long I can keep my Pca under control but I do like living, so I don't do anything the doctors would not like me doing, such as quitting ADT because it may allow Testosterone to increase and fast growth of Pca mets.

I face having low bone density due to 10 years of ADT so may I have a shot of Xgeva soon, if results of recent bone density scan indicate I should. But I am cycling 200km a week at age 73, and am able to care for myself without a wife and do all the house work and yard work.

My scans to assess Pca status are PSMa Ga68 PET+CT. At the moment docs say I only have Pca in my bones.

Regardless of what Pca status is and what treatment I get for it, I am getting old and losing bone density and my average speed on my bike is going down. I just ain't young any longer, and the older I get, the better I was. But I rarely ever get overtaken during my 70km cycle rides by anyone over 55yo, so regular exercise is keeping me in good working order despite the Pca.

Patrick Turner.

Sunnyby11 profile image
Sunnyby11 in reply to Patrick-Turner

Good for you Patrick...keep it up :)

He's still on lupron so we shall see...

Patrick-Turner profile image
Patrick-Turner in reply to Sunnyby11

So the Lupron is suppressing the production of Psa, but his Pca is at stage 4, which means Pca has spread widely and in his bones. My Pca spread into many lymph nodes and bones, and did all this despite ADT and Cosadex and Zytiga keeping Psa low.

Chemo did almost nothing. We think it may have made my Pca sensitive to having more Zytiga again. But after 5 chemo shots I went to Lu177, and after 3 doses began taking Xtandi, which was thought to make Lu177 more effective. Psa went from 25 to 0.32 from before Lu177 to 12 months after first dose. I think that was mainly due to Xtandi, which like so many drugs has only a short time of keeping Psa low. Once Psa got down to 0.32 last November, it went back up to 30 by last July, so I have had 2 more doses of Lu177, and Psa is now about 5. I am having PsMa scan soon to see what has really happened to met size in and number in bones. The Psa can be a poor indicator for what is really happening with Pca and its spread. I want my doctors to know all about what I am doing, and want them to be able offer me something that will extend my life. It seems that a cure is quite impossible, but I'll try anything they want me to if they have enough reasons to believe it might help. The other thing about Pca spread is that there can be spread from the mets, so that the original mets from PG produce spread, and from those there is more spread, so a man ends up with thousands of mets, and they can be hard to treat, even though Psa is low.

Its not raining here today, but overcast and cold like winter. It should be like spring. It was for awhile. Instead of very dry weather and hot weather and raging bushfires we had this time last year, the land it soaked with rain, and all is green and its cool.

But I'll get on bike for a 70km ride if I can when it warms up a little bit.

Patrick Turner.

mcp1941 profile image
mcp1941

23 years ago when I was DX with PCa I became a zombie. No pleasure in anything, showing up for work and not accomplishing anything.My PCP put me on Zoloft and within two weeks I was a new man. stayed on Zoloft for 6 months till I finished treatment. I was fine until last year when I was DX with Multiple Myeloma. Started zoloft again and this drug worked another miracle. I would be off it now except I was DX with PCa to the bladder last month and still need it.

j-o-h-n profile image
j-o-h-n in reply to mcp1941

You deserve a medal.................for what you've been through and for being born in that infamous year 1941.... Keep on keeping on....... 🎊 🥇🎊

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 10/26/2020 5:25 PM DST

mcp1941 profile image
mcp1941 in reply to j-o-h-n

thank you j-o-h-n. Also married on Dec. 7th 1968.

MikeP

j-o-h-n profile image
j-o-h-n in reply to mcp1941

A glutten for punishment.....Hmmmm (a two war baby LOL)

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 10/27/2020 4:57 PM DST

Sunnyby11 profile image
Sunnyby11 in reply to j-o-h-n

You are so right!!

Blue1123 profile image
Blue1123

Initially PSA 615. One year later on A-acetate/ Prednisone. Now 1.38. My depression is compounded by the breakup with fiancé.

My prescription is work. I am 78. I work seven days/week. Mowing, cutting down trees and maintaining 8 properties. Sometimes I have to work past the aches and fatigue. I believe this activity diminishes anxiety and depression. I’ve used that activity to combat depression all my life. Before my diagnosis I didn’t take pills. I did have bouts of depression in the past and addressed it with more work. These new situation(s) have called for doubling down on work and I firmly believe it is the activity helps with my depression. So I might add to

“ fight on” with “work on”! just sayin’

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