Fifth year of my battle: As the heading... - Advanced Prostate...

Advanced Prostate Cancer

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Fifth year of my battle

harryb48 profile image
23 Replies

As the heading states; I'm in my fifth year of this battle and frankly getting a little tired. I had Da Vinci surgery, 39 radiation treatments, been on Eligard since the fall of 2016, Provenge in the spring of 2018 and now on Xytiga and prednisone. What a ride! My reason for posting today; Does anyone else get an increased level of anxiety following the Eligard injections? I walk and stay pretty active, live in the country and garden, maintain a large yard, stream fish, and still burn wood as a supplemental heat source. I'm 70 years young and just can't figure out why I'm so damn mad at the world after the injections, seems to subside after a week or ten days, but wears on my family.

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harryb48
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23 Replies
Monkeymamma profile image
Monkeymamma

My husband gets anxious and weepy after his injections. He also sleeps a lot for the first week after a shot.

Tall_Allen profile image
Tall_Allen

Mood swings are a common side effect. As one man in my support group put it,"it's as if a menopausal woman has moved in."

MMMayhem profile image
MMMayhem in reply toTall_Allen

My wife is jealous because I'm getting to go through the menopause that she so badly wants.

Ldb01 profile image
Ldb01

I believe the hormones you are receiving put you in an almost "menopausal" state. Like us women go through at certain times of the month and also when going through menopause. My husband gets Suprefact every three months and his moods have not been good. Also has made him very emotional at times and he will suddenly yell at everyone but calms down a bit afterwards. On top of that all the other treatments add to the mood swings.

MMMayhem profile image
MMMayhem

Everyone reacts differently. I just got my 3rd 3 month injection of Lupron yesterday. I do sometimes have a shorter fuse and less patience. Weirdly, my side effects seem to pop up near the end of my treatments rather than the beginning. I didn't get any hot flashes or mood swings til 2 weeks before my 2nd injection. A few weeks ago before yesterday's, I started crying over little things like tv commercials.

EricE profile image
EricE in reply toMMMayhem

Yes I am on Lupron and I have good days and bad days. The bad days, I am moody and somewhat weepy (In a manly way of course! :) )

Shooter1 profile image
Shooter1 in reply toEricE

Definitely effect emotional state. Weepy sure beats getting mad......just as alcohol effects a lot of people differently, so do our toxic cocktail of cancer drugs.

CalBear74 profile image
CalBear74

Norman Cousins wrote an excellent book many years ago about laughter/comedy as a therapeutic means for alleviating depression while ill (based on his own experiences battling a chronic illness). This has become a popular approach for altering the brain chemistry that contributes to depression. Pacifica has published the following list if you are ready for some binge-streaming of movies: (excerpt below)

"19 Movies for Anxiety and Depression

Inside Out. “Inside Out was amazing. ...

The Perks of Being a Wallflower. “The Perks of Being a Wallflower. ...

Big Hero 6. “I absolutely love watching Big Hero 6! ...

Silver Linings Playbook. ...

Ferris Bueller's Day Off. ...

It's Kind of a Funny Story. ...

The Secret Life of Walter Mitty. ...

Good Will Hunting.

thinkpacifica.com/blog/19-m...

And there may be other resources available online to help manage negative mood states.

EricE profile image
EricE

Doesn't Prednisone have a reputation for this. Just thinking out loud.

j-o-h-n profile image
j-o-h-n

Just stub your toe and believe me you'll forget everything else for awhile. Actually, Laugh as much as you can. Have a real pillow fight with your spouse (hit hard like you mean it).

And if you buy on ebay here's a song that will make you smile.

youtube.com/watch?v=YKtlK7s...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 01/04/2019 5:26 PM EST

harryb48 profile image
harryb48 in reply toj-o-h-n

Thanks; I needed that!!

Bebby1 profile image
Bebby1 in reply toj-o-h-n

Still make me laugh 😉😉😉😉

monte1111 profile image
monte1111

Get my 6 mo. lupron injection in about a week. Alexa is sure to ask me "Monte, why are you so pissed off." "Monte, why are you crying?" And the cats will be sure to keep a wary, wary eye out. Which is really difficult and at times quite hysterical for the one eyed cat.

Jimhoy profile image
Jimhoy

Good Morning Harry

I’m sorry to hear about your symptom but honestly, I’m equally glad!! I spend a good deal of my day wondering if I’m losing what’s left of my mind after ending up with (full blown) Lipron Brain Fog shortly after starting Eligard 18mo’s ago. I find justification when I come across a post such as yours by learning these things are real!!! I don’t get this from my Doctors!!!

Cutting to the chase, I too, inexplicably, find myself enraged! (Woke up this AM with it!!!) Usually at my wife of 45 years!!! FOR NO APARENT REASON!!! On ocasion, I am as short tempered with the grandkids, family and friends (but not as bad as with my wife) but I have been able to swollow all of it but am a miserable SoB in doing so!!! I would rip my boss and co-workers new a$$holes regularly when I had them!! Yup, got fired!!! I now can see it coming on as they are accompanied with very strange dreams!!! Not nightmares per say just out of the ordinary, very vivid, strange dreams!!!! I tell my wife that I’m having one of those days and it’s understood. I’m given some distance!! Some times it lasts for days! I am sure it’s not a feeling of grief or self-sympathy, it just plain old MAD!!! I know it’s the DRUGS...SIMPLE AS THAT!!!!

I hate crouds and noise and I now swear like a trouper too!! The swearing is what prompted my wife to tell me to look around to see if I can find what is causing it!! Got me to your post! Where you can pinpoint the timing of when your can expect this side effect to rear its ugly head (@ injection time), is proof enough for me. I can not!, It’s starting today and I am 1 &1/2 months into my 3 month shot. I would love to keep an eye on it in the future but I am going on a “quality of life” vacation in lieu of my next Eligard injection in February. This with hopes that “this”, along with ALL the other side effects will soon subside!

The one thing in common.....THE DRUG! It’s not a cure, its a treatment so I have decided to modify it! Hopefully, the PSA will stay down and I can look back at this as a victory. If not, I’ll deal with it! Possibly with surgical castration in lieu of chemical!! Same net result...no drugs!!!

Anyway, in summary I guess, we’re not losing our minds, they’re taking it!!!

But at least we are alive to complain about it!!!!

Best Regards

Jim

harryb48 profile image
harryb48 in reply toJimhoy

Like you said; I'm glad I'm not the only one. My "flairs seem to come post injection, last three to four weeks then I mellow out a little. I need to mention that my injections are every six months and dread getting them.

Bebby1 profile image
Bebby1 in reply toJimhoy

Good on you Jim

I find the hardest thing in life is to admit to any behaviour

I salute you

Damn those drugs that keep us kicking !!!

All the very best

Shorttimer profile image
Shorttimer

Had been taking Eligard every 3 months for 15 months. PSA was way down. Last shot in Feb 2019. Didn’t like the anger that raged inside. Doc said skip shot and evaluate condition in November. Anger has subsided but tired easily and aching feet and calves. Taking Eligard is a huge toll taken to maintain a physical presence.

Bebby1 profile image
Bebby1

My husband recently changed (DR advice)

From zoladex to Eligard

First shot no problem

Last one he felt anxious agitated and generally unwell for the following week

He also noticed a lump where the injection was given

Same subsided after about a week

Interesting how the same but different drug gives different side effects albeit short lived

Jimhoy profile image
Jimhoy in reply toBebby1

The bump is the delivery agent that the Eligard is mixed with! It should take 1, 3, 6 months to dissolve (depending on the dosage / interval that he is on)!

I so disagree with getting the “check up from the neck up” with my deep rooted thought that you are sick until “THEY” say that you’re not any longer. Kind of a cash cow!!!! However, keep an eye on his feelings!!! I never dreamed that I would be treated for anxiety and depression and it has taken a while to (somewhat) accept that fact!!!

By the way, I’ve been off Eligard (QoL Vacation) for 9 months now with no relief in sight!!! I’ve settled into popping an Ativan when I feel something coming on and take one with me if we go out. Noisy crowds, really grind my gears now where a couple years ago, I looked forward to it!!!! Yup, just before Eligard!!!!!!

Best of luck

Jc

Bebby1 profile image
Bebby1 in reply toJimhoy

Thanks for the reply

I half figured the lump was there as a slow release

However he did not get this with zoladex

Ativan is a lovely drug

I mean I’ve seen great results with anxiety ( nurse)

Need to check the journal before accepting invites !!! We tend to enjoy the very quiet life these days

Take care

lincolnj8 profile image
lincolnj8

I'm in my fifth year also and mad at the world. Never a PSA test. They said it was a miracle tat lived through 3 days in the hospital. We live in the woods in Ohio, also and burn firewood in our wood stove. Still on Zytiga but it is starting to fail. So not right!!

harryb48 profile image
harryb48 in reply tolincolnj8

I believe my Eligard is starting to fail, slow increase in PSA. Weight gain that I can’t shed and the mood swings are getting harder to control. I finally gave up on the wood heat as my physical condition has made falling trees a little dangerous and New York has a new proposal concerning fossil fuel burning. I do what I can, plow snow, smaller garden, and thinking about letting some of the lawn go natural. All we can do is fight the good fight!

lincolnj8 profile image
lincolnj8 in reply toharryb48

The yard work and burning wood is becoming a challenge. I'm in the same boat as you are. Honestly, I'm hoping for one more good year. I used to be so strong, but now a 40 pound bag of bird seed is a challenge. Wood stoves today burn cleaner than they ever have. Big business is squeezing out every nickel they can out of the little guy in America. They're the ones that told doctors back around 2012-2014 to stop doing so many PSA tests due to added costs of follow-up procedures that ran into millions of dollars. I've done a lot of research on this and now the cat is out of the bag. I had zero symptoms until about 2 months before being hospitalized. Extensive yearly physicals for 15 years and never a PSA test. I hope someone is held accountable. Like you I will keep fighting!

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