ADT speech problems

[3100connecticut]

Good day all. In that basket of ADT side effects they warn you about, has anybody experienced any speech difficulties? I've been on Firmagon for six months now and I could swear I'm developing a noticeable lisp, noticeable to me, anyhow. My wife says she can't hear anything, but she's not a native English speaker and might not pick up on it. But I definitely feel something there, a sort of numb spot on the tongue that makes it difficult to form certain sounds. Any input welcome.

[FCoffey]

ADT affects the brain in many powerful ways, most of them unwelcome. I didn't experience a lisp, but I did notice a mild kind of aphasia. I would have trouble formulating my speech in ordinary conversations. Part of it was loss of working vocabulary. I could no longer summon the right words without a lot of effort and delay. But I also felt like I wasn't putting my words together correctly.

Part of this too is that ADT affects how one perceives things, especially about yourself. You may not have a lisp that anyone else can notice, but it certainly feels to you like you do.

So yes, I have experienced speech difficulties. My friends said they didn't notice anything, but I did.

[Jimhoy in reply to FCoffey]

Hay F

Can I trouble you for some of your history regarding this?!!! I can’t get squat from my doctors about this subject!!!

As for myself, I’m going on @ 1 year since I started noticing the speech portion of my cognitive decline (2 years +/- since I first complained about any cognitive / executive issues (which was 6 months into my ADT)).

I had my last 3 month Eligard injection in Nov 2018 and in June 2019, was still full blown ADT. Told to wait another 6 months bring us to about now. I find NO relief from my symptoms that are worsening at best!!

I’d like to know if I am chronologically (whoa, where did that come from!!) ahead of, or behind you as well.

Best Regards

Jim C

[FCoffey in reply to Jimhoy]

I'm sorry to hear about your reactions to ADT. I had them too.

Here's what I can tell you, after a LOT of research and talking to both doctors and scientists.

The overwhelming majority of doctors just ignore these effects, or deny them outright. The cognitive issues especially tend to be dismissed out of hand. Your doctors are giving you squat because that is what they know: squat.

The research is extremely bad. The studies are so outrageously poor in their methods that one can't help but think they are deliberately hiding these dreadful effects.

A standard study will test some number of men on some sort of IQ or emotional function test, then repeat the test after a year or two. Then they average all the scores together. What they find are slight but not significant effects.

Because the study was designed to obscure significant effects. If one man in 20 reports completely devastating side effects, that gets averaged away.

The better, more observant doctors told me that most men feel bad on ADT, but some feel really terrible. They told me that my effects were espeically bad but not unheard of. Those research studies cannot pick up men like me. Their design obscures this pattern. It doesn't have to, analysis of outliers is a standard statistical technique. It just isn't done, and it isn't hard to suspect that is because no one wants to admit it.

What I learned from talking with scientists, including one who was on ADT, is that cognitive effects can be severe. What happens is that people who make their living with their brains notice the cognitive effects more. Someone working in sales or driving a truck might notice they are a bit dull, while an engineer or scientist finds they can no longer work.

That's what happened to me. I was unable to solve even simple problems, ones that I used to do in my head. I couldn't even plan out HOW to solve a problem. This is called the executive function, and it gets hit especially hard in me and the others I talked to.

I'm afraid that I can't tell you much about your timeline. In the words of my thankfully compassionate and caring oncologist, after 4 months I was "exhibiting multiple grade 3 and some grade 4 toxicities." I had to look that up. Grade 1 is a significant problem. Grade 5 is dead. Grade 4 is life threatening or incapacitating. Grade 3 requires urgent medical attention.

I was going downhill fast, and after 5 months I stopped ADT and tried BAT. That was an enormous improvement in my quality of life, almost immediately. It was very strange and stressful to be on this huge hormonal roller coaster every month, but it was infinitely better than Lupron. After 5 months on Lupron my thoughts and dreams were filled with images of my own death. Life was not worth living.

So I stopped that. BAT failed after 8 months. Now I take Zytiga, which is far more specific in its method of action, and does not poison the entire brain and endocrine system in the same fashion as Lupron. It's still very hard for me but it is tolerable for a few months at a time.

You've stuck it out far longer than I did. All I can advise is to pay attention to your experiences, and don't let truly ignorant doctors casually destroy your life. Find ones who know something, fire the ignorant fools, and build a team you can trust. I had to fire half a dozen before I found the ones I have now.

Quality of life matters, and cognitive impairment can be devastating.

Good luck!

[Jimhoy in reply to FCoffey]

Good read, going to take a number of passes to completely digest it but, thank you!!

Hit home on soooo many levels! Wondering, how many more are out there like us?!!! I don’t know about you but I went through LIVING HELL to literally watch (as if out of body) as I was losing my mind!!!! No drama!!!!! No sympathy!!!! Facts!!!

So many examples but not going there now!!! I know you get it!!!

Going to do my best to put some thoughts together and create a separate / new post to spread this!!!!

I hope 3100 Ct gets this copy but not sure who gets copied at this level of chat. Speech was my last symptom but seems to be his first!!!

Thanks again

Jc

[FCoffey in reply to Jimhoy]

Yeah, losing my mind was the worst. That really hurt.

I used to joke that I lost my mind all the time, but it was so sick it never got very far. That joke isn't funny for me anymore.

[mababa in reply to FCoffey]

FCoffey, I’ve been on Orgovyx for 2 1/2 mos. and am having the very same SEs. More difficult to start my sentences and the vocabulary has gaps. Sort of like experiencing advanced aging. Looking forward to my ADT holiday post RT.

[Tippler]

I received injections of Firmagon, Lupron, Eligard since July 2018 and I have been on Zytiga(2x500) for the last year. Months ago I noticed being annoyed by fricative speech sounds(s, sh, ch, etc) in church, watching TV, radio. Now I am not annoyed anymore, but I do not perceive those sounds the way I used to. Also, I have the same problems as those described by FCoffey. English is my third language and lately I noticed that in a conversation I use a Romanian word here and there, things that happened to me 30 years ago when I was tired! I don't worry about it, because so many things are different now. I am 69, licensed professional, however, I do not feel capable of doing what I did for more than 20 years. I work part-time two days a week as a gate attendant and volunteer once a week as a kitchen helper, which gives me great satisfaction(God is too good to me and promised to praise HIS name). I have difficulty calling my pigeons(whistling), due to muscle wastage, most likely. Life is good, but the Best is yet to come. I am in remission NOW, as my MO tells me. You are GOOD, NOW! Nothing lasts forever here.

[Dostoevsky in reply to Tippler]

Well spoken Tippler. What ‘language’ do your thoughts speak?

[Tippler in reply to Dostoevsky]

Mostly English after 35 years in this(our) country. 36 years ago I spent four months with Hungarian speaking people. I was counting, thinking and dreaming in Hungarian. That's what you can call immersion. My primary language is Romanian. However, in so many instances I find it to be easier to express myself in English.

[William123Cooper123]

Yes. Staggered speech (speaking sentences awkward). Unable at times to recall words I want to use. Coordination of mouth parts for speech awkward at times.

A lot of relationships to stress and speech issues.

[Hurling24]

Thats something my husband has noticed over the pasted six weeks. problem with tongue numbness and a lisp. {s, sh, ch, etc) He has had an MRI and this showed a new site in the brain so I was putting the speech problem down to this. He is now on steroid dexamethasone to reduce the swelling. The lisp has not improved but the pain behind his ear is gone. Having new scans done on Oct 10th to see if swelling has decreased.

[RonnyBaby]

I experienced some of what you are wondering about. I attribute it to 'brain fog' and hormonal side effects (loss of) plus fatigue that had me stuttering and looking for lost words. It seemed that my speech and brain couldn't react fast enough to continue to be the 'old me'.

Once I stopped ADT (took it for approx 16 months) my speech and brain functions began to recover.

After being 'off' ADT for a year, I am back to my more normal state, so the good news is that it was temporary for me and I suspect many others.

For someone on ongoing ADT treatment, I believe an awareness is needed to maintain a more sharper version of oneself. I know that I understood what was happening to me and I chose to slow down and be more deliberate in my communications and interactions with others. It did work most of the time - just back off the mental accelerator and try to relax more seeing as it can be stressful and frustrating just being yourself.

[Tjc1]

All of the above!

[Sunnyby11]

My husbands voice has become thinner and has to clear his throat often...that's worse when he's tired but basically intermittent...we laugh and say "he sounds like an old guy..." well we try to laugh this stuff off anyway...

Plus he finds it takes an inordinate amount of energy to be "his old self"...teaching a large class of music 3 days a week...sigh...

[DoggieDaddy]

Yes, my situation has produced a “ Delayed Speech Pattern “ people have noticed that after I respond they think I’m finished with my talk; and then I start speaking again after a delay. Sometimes when a discussion is in progress, someone will ask my opinion and I just watch, stare, and listen...but I sometimes, cannot speak right away...this is actually annoying.

[Garbonzeaux]

Yes, I frequently have problems coming up with a word or even names of people I know well, but not sure I can blame this on ADT, because:

1) I've been this way since I was in my 20s; likely overindulgence of adult beverages (never did recreational drugs).

2) Many friends about my age who are not on ADT complain of it also, including my wife.

3) It doesn't seem to be much worse since I started ADT ~2yrs ago, nor did chemo make much difference.

So aside from zapping some brain cells with ethanol in my youth, I imagine in my case, it's just a natural consequence of aging. Your mileage may vary.

[monte1111]

2 and a half years lupron and aging, 2 years Xtandi. Often cannot find the word I am looking for or remember the fact I am trying to retrieve. The other day I noticed I was using the wrong words at times. Maybe because I just started trying cbd oil. Anyone heard from g-e-o-r-g-e today?

[j-o-h-n in reply to monte1111]

N-o-t y-e-t....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 09/29/2019 6:42 PM DST

[Kaliber in reply to monte1111]

Yea same here .... I’ve been having a noticeable kinda slur of my speech and trouble with words too. I thought it was related to the mandible pain / inflammation I have .... but sounds like maybe not. I had it before I started cbd oil in serious use tho .... the cbd doesn’t seem to related in my case. Only 11 months on lupron- xtandi here.

[j-o-h-n]

All of the same symptoms mentioned above.... But I was attributing all of those symptoms to my big tits....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 09/29/2019 6:40 PM DST

[Kaliber in reply to j-o-h-n]

Probably go away if you stopped admiring them in a mirror and fondling ( or worse ) them.

It might be worth considering starting up a “ manzier “ undergarments company for men on adt . Possibly add in a line of prosthetic men’s shorts ... kinda like available for women with a mastectomy ... just say’in

[j-o-h-n in reply to Kaliber]

Ya know..... you're always ahead of the curve..... so how about we go into business together and manufacture "manzier" undergarments, e.g. "BRA FOR PA" and "CHOPPER BOXER"...

Ya know I don't know what I like best, "looking or fondling"...

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 09/30/2019 2:54 PM DST

[Kaliber in reply to j-o-h-n]

Yayahahahaya yayahahahaya .... “ bra for pa “ ... priceless. I laughed at “ chopper boxer “ for a minute before ewwwwwwwwwww took over. Yayahahahaya. Really funny.

[j-o-h-n in reply to Kaliber]

Really funny Huh?

Well, after Charles Manson you're my inspiration.. when I grow up I wanna be like the two of you👀

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 09/30/2019 7:51 PM DST

[Kaliber in reply to j-o-h-n]

Hey , old Charlie was a talented guy on the box guitar. I actually met him and his band of merry makers in a evening camp on the banks of the Colorado outside Needles , Ca. one summer evening Back in the ole Route 66 days. There were 20 -30 of them ( in 8 - 10 vehicles) camping there enroute to the desert someplace. I was stopped and resting with a group of my ... er ... ah ... motorcycle associates ( riding from a Las Vegas motorcycle poker run , back to Berdoo ). Most of Charlie’s group were ladies and he sent some of them over to keep us company when they returned from panhandling and a food run in Needles. Charlie sang and played a mean guitar , the girls danced and sang ... played tambourines etc. ... and we roasted marshmallows around the campfire. ( yayahahaha) Charlie was a gracious host and put on a great campfire show ... and I guess was a stone cold psychotic killer. go figure. Yayahahaha

[j-o-h-n in reply to Kaliber]

See what an adventurous youth you had, and that's why I envy you and consider you my hero. Unfortunately I spent my youth at a boring job working for a local newspaper "The Brooklyn Eagle"...My daily job was to take the eagle out for a walk....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 09/30/2019 9:55 PM DST

[Jimhoy]

Short answer is.......Yes!

ADT kicked the crap out of my cognitive and executive abilities!!!

The most prevalent is my speech where I either use the wrong words or a word will fall out of my head in the middle of a sentence!! I think they are both related!! I really only associate with my close friends and family who I ended up call their attention to my problem because (prior to my realizing what was going on!!!) I was letting them think it was the wine which began to bother me more and more!!!!

I prefer to write my conversations and have replace drive by’s and tel-cons with texts and e-mails. I’m able to proof read and correct statements. Thank god for spell check because I can no longer spell worth a shit!!! Reading is painful too!!

Until today, I really thought I was on this path alone!! You really hear little to nothing about what ADT does to the brain!!! I’m sorry to hear that others are having these issues (of which NONE of my Dr’s acknowledge) but equally relieved to hear I’m not alone and am not actually losing my mind!!!

It was also relieving to read that some are recovering once off ADT a year. Thats where I am now and find no change in my condition yet!!!

My last 3mo Eligard injection was Nov 2018 and in June 2019, I was still full blown ADT. Bloodwork due next month but all side-effect are still hanging in there which I believe is keeping me in my fog!!!!

Jc!

[j-o-h-n in reply to Jimhoy]

Ahoy Jim,

"I’m not alone and am not actually losing my mind!!!"

You're definitely not alone cause we're also losing our balls...

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 09/30/2019 8:04 PM DST

[Jimhoy in reply to j-o-h-n]

I keep checking my wife’s purse but.... nothing!!! She’s getting pretty sly in her old age!!

[j-o-h-n in reply to Jimhoy]

Oboyahoy,

You can say SLY again.... I checked my wife's purse and nothing there... then I realized she made her purse out of them.....So I scratched the purse just for old time sake.....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 10/01/2019 12:08 PM DST

[Kaliber in reply to j-o-h-n]

Yayahahaha yayahahaha bet it felt good too ..

[j-o-h-n in reply to Kaliber]

It was ecstacy....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 10/06/2019 4:24 PM DST

[Kaliber in reply to j-o-h-n]

Lol .....

Just started up the nasty Zometa infusions again, psa still undetectable ... for 5 months in a row now.

That’s a good thing ...things should be looking up , and technically they probably are .... but I don’t feel like they are. Instead seems like I’m sick a lot ( most ) of the time ... I’m tired of being sick, sick of opiates, sick of cookies, sick of the pain , sick of all the side effects ...sick of all of it . yuck. Oncologist gave me some daily Xanax which helps. Locally I have a PCa friend that points out that I’m doing pretty well considering what could be ( way better than he is , he says ) that .... pretty much .... these are my remaining good times and I’m lucky to have this. He thinks I should try to see the upside more and enjoy the times I have. I know that emotional issues and anxiety are predictable common side effects of all the hormone changes I have .... but after nearly a year of this it gets really old ... and worse I know it’s not going to ever be better. It’s hard to keep in mind how lucky I am when all the alligators are constantly biting my a$$ . I can’t imagine how all of you guys cope after years and years of this crap. Kinda puts the damper on my sense of humor lately too yayahahaha.

I think I need to get out more and push myself to do it. It’s a major effort for me to get my clothes on and walk outside to just climb up into my truck ... I’m huffing and puffing, turning red and exhausted just doing that ( plus sick ) ... I have to sit there and collect myself just for that little amount of effort. I want to ride my Harley but my hands , arms , shoulders get very uncomfortable ( pain ) after just a few minutes of riding .. even with pain management it hurts. I’m not inclined - encouraged to do things when they hurt , if I don’t have to. Whatever.

Ok , I guess I feel better now that I have spewed and vented yayahahahaya yayahahahaya And. got that out ( like spitting out a lugie ) ....

I was really happy when I started getting all the <0.1s ... guess the shiny wears off everything after a while. This chit can really mess with you .... it certainly gets to me at times.

Think I’ll drive down to Mickey Ds and buy myself a happy meal. Yayahahahaya

[j-o-h-n in reply to Kaliber]

Nutting like a happy meal to make you happy. I hear your plight and mine too but we gotta keep gottaring. You have had an interesting life that you can be proud of and reminisce about. Just keep the faith and your humor and remember that we all enjoy your posts. As far as venting is concerned it's part of our fight to smother those little dirty bastards that decided to mess up our cells. I will leave you with one good one:

You know what they say about cliffhangers....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 10/06/2019 8:44 PM DST

[Kaliber in reply to j-o-h-n]

Yayahahahaya yayahahahaya that really is a good one . Classic.

You’re right ... it’s “ all “ of us here. You , me everybody metastatic. I have lots of company. Without doubt, all of us feel like this now and then. Like gas ... It’ll pass

Thanks brother

[Jimhoy in reply to j-o-h-n]

You disappointed me a bit!!

Thought I’ll lead you into “Family Stones” with my “Sly”!!!!

Don’t fail me now!!!!

Jc

[j-o-h-n in reply to Jimhoy]

okay... Sly and the family JEWELS....

youtube.com/watch?v=JJt-C6I...(Not working as expected?)

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 10/06/2019 4:36 PM DST

[westof]

Hmm... Here is a thought. If you have a smart phone, record your post and listen to it with your wife (or a friend). It may put your mind at rest.

Best

[j-o-h-n]

Definitely not TMI.... Very very interesting... I think you should write a book. If I were stranded on a deserted island I would like you to be stranded with me..... You've got lots of stories and experiences and laughs that would be entertaining.... Plus I could also burn you if we ever ran out of firewood.,,,👀

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 10/01/2019 5:00 PM DST

[Kaliber in reply to j-o-h-n]

Yayahahaha yayahahahaya yayahahahaya .... man I like your sense of humor. Don’t even really know what exactly .... but it’s twisted in a way that is really funny to me. I see that post is gone now. Think my caregiver also gets a check from “ the boys “ or something... she probably got on here and 86ed it ... too much personal information.

I can see that you’re the kinda guy that would appreciate a shiny new 12’ X 12’ black rubber tarp, a chainsaw and a restaurant sized jar of mayonnaise. ..... just say’in

[j-o-h-n in reply to Kaliber]

Wow.... your post was gone faster than a a cat in a Taco Bell kitchen. Shame cause it was quite interesting and amusing.

The only thing I would change in the list of supplies is a chainsaw with every other tooth of the chain missing. It would give sort of rhythmic cutting beat between horrific screams.... 😈

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 10/01/2019 7:01 PM DST

[Kaliber in reply to j-o-h-n]

Cat in Taco Bell kitchen yayahahahaya yayahahaha... no kidding .... I’m pretty sure you nailed that . Sometimes that so called Taco “ mystery meat “ is real squirrelly ( yayahahaha).

I like that every other tooth idea.... long as you kept the rpms up , that’d work. I just unscrew that little muffler and the resulting noise drowns any other undesirable noise out ( screams )....

[Kaliber in reply to j-o-h-n]

Yea my ole lady is pretty squirrelly about my posting personal info on the web. Now and then she catches me putting out info beyond what she is comfortable with ... what I said wasn’t all that . Whatever. I wonder how she knows ... maybe has a key logger yayahahahaya. She kills stuff I post now and then. It’d probably irritate me in another lifetime.... not so much these days. Gotta keep the better half happy. Happy wife ...less strife ...lol.