Irrational emotional mood swings on ADT - Advanced Prostate...

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Irrational emotional mood swings on ADT

Scout4answers profile image
112 Replies

I have recently had some irrational emotional mood swings . I had a similar experience about 6 months ago, they went away within the week. I did not equate it then with my total lack of Testosterone but after seeing some discussions on this board I realized that it was my female side in full bloom. Thankfully Coco is very understanding of my situation as we have very open and honest communication. She said " I am a woman I know something about hormonal driven irrationality."

My doc prescribed Lorazapam for anxiety, I filled the prescription but have yet to take any pills I am trying to deal with it using Magic mushrooms in micro doses and High Intensity exercise. So far I am dealing with my emotions well but know that if I can't maintain equanimity I may have to stop ADT

I have been on Lupron / Abi for 21 months, but only 12 post radiation .

A lot of moving pieces and I know I will have to make the decision with out complete knowledge of the potential consequences.

Anyone else experiencing similar emotional swings and what strategies have you used to cope?

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112 Replies
PCaWarrior profile image
PCaWarrior

Major irritability sometimes going into outright hostility and paranoia.

When I see that kind of behavior taking over I use a 0.1 mg/day estrogen patch and it goes away. I got this advice from a guy who used to post on the forum. It works for me.

Scout4answers profile image
Scout4answers in reply toPCaWarrior

Did your MO prescribe or did you have to do it on your own.

PCaWarrior profile image
PCaWarrior in reply toScout4answers

MO.

Scout4answers profile image
Scout4answers in reply toPCaWarrior

Thanks great info.

Do you use it all the time or just when your mood changes?

drmoose profile image
drmoose

I have had similar reactions - have done several rounds of between 2-4 months, and I would get a feeling of hopelessness and start to cry - was worse the first time, but I could feel it on the other rounds and managed it better. I would also guess that the estrogen patches or cream could help, and also the workouts and microdosing are likely helpful too. For me the worst part is "scatter-brained" - I forget things in about 5 seconds if I am not super diligent.

I just stopped ADT after 2.5 months post-SBRT also due to these effects, I figure (for better or worse) I want to see how my PSA is responding now post SBRT. Many docs recommend 6 months or maybe longer, but optionally none, so no clear consensus, although most likely taking ADT does help suppress any left-over micromets. I chose to stop, for better or worse. In any case, if PSA rises at some future time, we go hunting with PSMA PET-CT most likely.

Seasid profile image
Seasid in reply todrmoose

I would also stop. No real overall survival benefit and you may don't gain back your testosterone. Therefore the best if you stop ADT and enjoy life.

Seasid profile image
Seasid in reply toSeasid

I am on Degarelix (Firmagon injections) for more than 5 years now and I have no problems. I actually feel much more calm. I only miss my testosterone but not the cancer.

Seasid profile image
Seasid in reply toSeasid

With Firmagon injections you would gain back your testosterone quickly and you would have less mental side effects. I am on Degarelix for more than 5 years now and I am fine.

Seasid profile image
Seasid in reply toSeasid

Could you ask about bicalutamide? If you don't have a BRCA genetic mutation you could stay on bicalutamide for one year or so as an added insurance? It is only my idea. If you have BRCA genetic mutation than bicalutamide could cause breast cancer.

Seasid profile image
Seasid in reply toSeasid

"Bicalutamide, a nonsteroidal antiandrogen commonly used in the treatment of prostate cancer, has been associated with a risk of gynecomastia (breast enlargement) and breast pain. However, its link to breast cancer is not well-established, even in individuals with BRCA genetic mutations.

For someone with a BRCA mutation, there is an increased risk of developing breast cancer, particularly with BRCA1 or BRCA2 mutations. The concern with bicalutamide would be more related to its potential to cause breast tissue changes, which could theoretically contribute to breast cancer risk, especially in someone already genetically predisposed. However, this link has not been definitively proven.

If you or someone you know has a BRCA mutation and is considering or currently taking bicalutamide, it would be essential to discuss this with a healthcare provider to weigh the benefits and risks, particularly in the context of personal cancer risk factors. Regular monitoring and appropriate screening for breast cancer would be crucial in this scenario."

For the peace of mind do the genetic testing?

Justfor_ profile image
Justfor_ in reply toSeasid

FYI, in 3 months I will celebrate my 3rd Bicalutamide aniversary.

Seasid profile image
Seasid in reply toJustfor_

Great

Seasid profile image
Seasid in reply toJustfor_

Did you test yourself for BRCA genetic mutation so you don't develop breast cancer?

Seasid profile image
Seasid in reply toSeasid

Maybe I should do the same?

Justfor_ profile image
Justfor_ in reply toSeasid

I had the Color genetic test and it didn't find any BRCA mutation.

treedown profile image
treedown

Had it with Xtandi in spades. Feel like a kid again on just Lupron but will have to see how things go when I restart Zytiga soon.

KocoPr profile image
KocoPr

I noticed it recently myself and low and behold after 9 months on ADT my E2 finally went down to <10. I ended up taking KAVAKAVA tincture i make and all anger/anxiety went away within 15 minutes.

I just finished my first High T BAT and I feel much better. My biggest notice was skin health and mental outlook. I am surprised our docs don’t measure E2.

WhatHump profile image
WhatHump

Give the lorazapem a try. My GP gave me a scrip for clonazpem, which I assume is similar. I take one every evening, which is when I'm most vulnerable to difficulties. (It also really helps me sleep through the night.) While my T, post RP is not zero, it is just above 300, which is on the borderline, and I too over the months after surgery just "didn't feel like my old male self.". (My GF likes the new less-aggressive etc me, but I didn't/don't.). Hard to keep muscle mass, tho I ride 17 miles/day and sail small boats almost every day. Am trying small daily doses of Wellbutrin now too, to deal w some mild depression that I think is both biochemical and due to regret that I chose RP instead of another option. (MD GF, GP, and close friend I respect immensely who had RP all really pushed for RP.) I'm not in your world, but I'm not in my old one either.

Scout4answers profile image
Scout4answers in reply toWhatHump

Thanks for sharing your story.

Perhaps having the LORaz in my back pocket has been as helpful as the other things I am doing. Just knowing I can get relief from the irrational thoughts if I need to, may be enough.

Reluctant to add another drug to my menu if I do not absolutely have to.

I have been cruising along at 30000 feet feeling on top of the world, living on Love. I suppose a little turbulence is to be expected.

Seasid profile image
Seasid in reply toScout4answers

Maybe it is not related to the ADT. I am on Degarelix for more than 5 years now and I have no problems with mood swings etc.

Maybe you are forcing yourself too much. Without testosterone it is more difficult to recover physically. I have a friend my age and he is healthy but he never stops and of course even a lion need a rest in order to feel better. Could you slow down and stop forcing yourself?

Carlosbach profile image
Carlosbach

Scout, I’ve been through something similar. I was on the four-month dose of lupron/eligard for over 2 1/2 years. After the first year I noticed that I was having mood swings more in the first few weeks after the Depot was implanted. I initially attributed that ch to the released dosage being higher in the beginning of a cycle.

However, after about 16 months, with each new cycle, the mental symptoms, depression, irritability and anxiety were significantly worse, and these symptoms lasted a little bit longer each time. After my sixth implant these SEs were amped up and I lobbied my providers for E2 patches, to no avail.

My final implant in February of this year just about drove me crazy. I thought I was losing my mind and I would wake up in the morning with a irrational thoughts, anger, etc. I put my poor wife through hell, and ended up pretty much withdrawing from interactions with other people. I also had concerns about road rage and there were times I wouldn’t allow myself to drive because of my extreme irritability. Other times I couldn’t drive because my concentration was so impaired.

When I posted my symptoms on this forum, I got good support. Various solutions were offered, including estrogen patches, antidepressants, changing medication, etc. My MO was reluctant to give me estrogen so I tried E2 creams, but noticed no benefits. I eventually lobbied my MO to change my medication. I was so desperate by that point that I was considering quitting the eligard and taking my chances.

My MO listened and switched me to Firmagon. I’m six weeks into the new med,, and while I have discomfort from the injections, and I don’t like the 28 day cycle, I am feeling much better. I feel like myself again, I wake up clearheaded I am not having the same emotional issues. My outlook has returned to a more normal positive mood, my anxiety is gone, my short term memory has improved, and I am able to concentrate again.

treedown profile image
treedown in reply toCarlosbach

Its amazing we get changes from the different meds when the docs keep telling us it just about the loss of T. I think all PC Dr's should be doing a minimum 3 month stint on ADT .

Carlosbach profile image
Carlosbach in reply totreedown

when I saw my MO he wasn’t surprised at all by my mental health side effects. He said, “Yeah, it (the SEs) don’t occur for everyone, but they do happen and if they ask, I just change them to another med.”Pissed me off that he was so blasé about it, when I was so upset and worried about losing my sanity

treedown profile image
treedown in reply toCarlosbach

My MO seems pretty straight forward in person but then does things I don't expect which makes it clear that he folds to pressures from other sources, i.e. employer, insurance co, etc. I have decided to keep my RO involved from here on out as it seems like a no brainer to have more than one oncologist in my corner and my RO has his own outfit and my MO is part of a larger hospital.

Carlosbach profile image
Carlosbach in reply totreedown

Great that you have a RO on your team. I’m on Kaiser and I have a great primary care doctor, scans and labs are great, and the tumor board has been supportive of my requests. However, I’ve been through 3 MOs (1st retired, 2nd quit due to being over scheduled, and the 3rd strikes me as being from near the bottom of his graduating class. When I have doubts about my treatment I have gone outside Kaiser to specialists at a research hospital.

treedown profile image
treedown in reply toCarlosbach

I am on Kaiser as well. My MO pawned me off on a Nurse Assistant for a couple visits but I am done with that and will wait the longer intervals to see the doctor. I have hopes that things will stabilize and I can go back to 3 month visits, lupron and PSA tests for awhile. I should be there if my PSA has dropped further on my next test in late July/early Aug.

Nfler profile image
Nfler in reply totreedown

I ditto that 💯 and I won’t mention any names but there’s also a guy on here that insists most get on adt though he doesn’t have adv pca or taken adt himself. My opinion is if he’s going to b recommending so much he should try it himself for six months n see if he would still recommend it. Good for you in doing what’s right for you…

Scout4answers profile image
Scout4answers in reply toCarlosbach

Wow Amazing change, Thanks for sharing. So glad you are feeling better. will keep that option on the table when I talk to MO

Kaliber profile image
Kaliber

yep, long term ADT … strong drugs and a lack of male hormones is a volitle combination.. throw in a pinch of “ oh sh*’ I’m croaking “ and whooooooo haaaaaaw .. ride those emotional swings cowboy. Gonna need a bigger storage container for the depression that can arise sometimes.

This is just my own IMHO and antidotal perview but :

It gets worse , more powerful over time , just keep reminding yourself it’s mostly the drugs that are the foundation.

Keeping yourself busy , doing things you like , definitely helps keep your mind off our self pity

Delta-8 laugh factory hemp extract ( legal federally and in all 50 states , buy it thru the mail delivered to your door ) works miracles busting up the doom and gloom.

Everyone experiences ups and down ,….. some downs are quite normal and healthy. Good to remember our brains are soaked in powerful expensive drugs.

Probably the most, easily obtainable from our doctors for guys like us , drug that helps are the benzos … you mentioned one,…Xanax the most common…. Clonazpam another. Benzos, however , are great but addictive. Stopping a significant use of a benzo is “ extremely “ , worse than opiates … and sometimes needs a short stay in rehab. In other words be careful and respectful of benzos.

Just my 2 cents worth buddy …

Scout4answers profile image
Scout4answers in reply toKaliber

My Brain chemistry is clearly being altered by Lupron. When my female side starts thinking and acting irrationally I call her Lupy or Lulu, now that I know where she is coming from.

Ordered Delta 8 will give it a try Thanks

dockam profile image
dockam in reply toScout4answers

I love my Delta 8 THC vaper and use it as a sleep aid.

Oh oh Lulu youtu.be/EV1qmmMwc9M

Luv ya Brother💙

Nfler profile image
Nfler in reply toScout4answers

my female boxer’s name is Lulu and I try not to take her name 😁🐶 but know how you feel and was the main reason I got off adt after 7 months. Started the ivermectin, added cbd oil, curcurmin and zinc w great results thus far. Just started doing a lot of cherries 🍒 n eating 2-3 pits a day for the Laetrile, testing next week n see what the psa looks like but I can tell you I feel a whole lot better getting off the expensive n powerful pharmaceuticals that r being pushed n don’t even actually cure the disease…

dockam profile image
dockam

Oh dang my Brother, so sorry to hear that :-(.

Those are nasty ADT SEs and add that to scanxiety makes for the "Crazy Train" that we're on

I hope that you're able to get some helpful tips from the others here.

Awesome about the micro dosing of magic shrooms

Fortunately, I'm not having severe mood swings, despite being on Lupron since 2015.

Big hug for you my Brother💙

When pts ask about how I'm doing, I say that I'm a menopausal woman now and may sing to them:

youtu.be/DVDCNmdi7QI

Fight on. QoL on

Randy

Scout4answers profile image
Scout4answers in reply todockam

Thanks Randy

I am sure that all your running keeps your brain bathed in serotonin.

Song is right on, great choice my menopausal sister.

dockam profile image
dockam in reply toScout4answers

Yea, maybe the perfusion of O2 from workouts/hiking helps

youtu.be/zRgWvvkSvfk

CAMPSOUPS profile image
CAMPSOUPS

Sorry your experiencing this.

Do you notice any triggers that start the avalanche of irrationality?

My SE's were worst about a year into Lupron/Eligard. I think similar to Carlos's SE's.

And there are kind of two categories I think. The irrational, angry, lash out SE's which I think come from the ADT and the depression etc. coming from our lot in life having this DX combined with no T.

A year into this after living in Chicago land for 23 years we dropped everything and moved to the twin cities. Very chaotic. My wife and I especially me had screaming matches. I am known as very chilled.

The move was over and I thought they did everything wrong here in the twin cities. I yelled at a drive thru workers. Had road rage. Still occasionally yelled at my wife.

I've mellowed out since then but what I notice is I cant deal with multi-tasking or any change to a plan. I have to have everything planned out simply and don't you dare throw a change in there. I might have a anxiety attack or lash out at you. Triggers.

Cannabis has always and continues to be a great relief of these and most all SE's for me. Recently I added Venlafaxine daily and I believe it added another layer of mental zen. It also reduced in frequency and intensity hot flashes.

Scout4answers profile image
Scout4answers in reply toCAMPSOUPS

Talking with my GP he said I am not depressed, (I agree) just having spells of anxiety. There is a part of my brain (Scout) who says stop acting like this you are being irrational yet the (Lulu) part of my brain gets obsessed about irrational negative thoughts and continues to act out.

CAMPSOUPS profile image
CAMPSOUPS in reply toScout4answers

The anxiety aspect interests me. Its something I started to recognize as a trigger.

I looked back at the first couple months after DX and I recall being happy ( I wasn't going to die in 3 months ) and also out of left field having anxiety and butterflies in my chest. I used to wonder if it was from nerves over being diagnosed stage 4 but I know now its the ADT.

It took me a couple years to be focused enough but realized anxiety pours over me just within seconds of hot flashes coming on. The laymen in me sure feels there's a connection between all things ADT.

I wonder how many have anxiety but haven't recognized it.

Maybe lashing out against the anxiety. Anyway I won't be able to talk this one out, I need a psychiatrist for that lol.

Seasid profile image
Seasid in reply toCAMPSOUPS

Could you try Degarelix? I am on Firmagon injections for more than 5 years now and I have no problems with mood swings etc. It is very effective.

kainasar profile image
kainasar

I prefer the SSRI's to Benzodiazepines, such as Lorazapam. And SSRI's are said to interfere with PC growth, in theory.

Some help with both anxiety and depression, such as zoloft, and can be used in combination with Wellbutrin, if major depression is a problem. Venlaxafine is a SSNRI but is most often recommended for hot flushes, along with anxiety and depression.

A drawback of Ssri and Ssnri and wellbutrin is insomnia, where a benzodiazepine, will induce sleep, but isnt an antidepressant; and their's constipation, and addiction risk.

Hope this helps.

Scout4answers profile image
Scout4answers in reply tokainasar

Thanks it does, see my reply to Campsoups above

K-xo profile image
K-xo

Finally, a symptom most women can relate to. I just want to say, “Coco you stated that perfectly. You go girl” Lol. Hope you find a solution, Scout! I have no medical advice, but here’s what helps me with any negative emotion — put on some headphones, jam your favorite tunes and dance like no one is watching. Alternatively, dance with Coco. Wishing you two the best.

Scout4answers profile image
Scout4answers

Thanks I danced with her at breakfast when "I Got you Under My Skin " sung by Sinatra came on our sound system. I will get the headphones out ready for a future episode which I hope will not occur

Scout4answers profile image
Scout4answers

LOL

mind blowing it is…

The bottom line, even before Lupron I had more shoes than Coco.

Part of that was because when I would find tennis shoes that fit very well I would buy 5 pairs at a time. Nike and their ilk are known for changing styles every few years.

No high Heels … Yet😎

Kaliber profile image
Kaliber in reply toScout4answers

some of those tennis shoes became a kind of cult. I saw an article where a guy bought over $20,000 worth ( you might have seen the article ) and the kind he bought were made of materials that disintegrated and crumbled apart after a few years. I wear/ like Nike as well.

❤️❤️❤️

addicted2cycling profile image
addicted2cycling in reply toScout4answers

Always bothers me when reading about the SE's from ADT and for those reasons, plus I didn't want more drugs in me, I simply chose to remove the main source. Thankfully I have no problems with constant shoe updating. 😀

youtube.com/watch?v=ZJL4UGS...

Scout4answers profile image
Scout4answers in reply toaddicted2cycling

If I looked like her maybe this whole female experience would not be so bad.

Seebs9 profile image
Seebs9 in reply toScout4answers

No reason to leave home!

addicted2cycling profile image
addicted2cycling in reply toScout4answers

Plus you could Play Vegas making the Big Buck$ !!! 😁

timotur profile image
timotur

Lorazepam is a great low-level valium for anxiety. I use it occasionally to take the edge off when things get tough emotionally, but it never gave me bad dreams. The one thing that did give me bad dreams though was melatonin-- that combined with Lupron gave me some weird thoughts and voices as soon as I closed my eyes!

Scout4answers profile image
Scout4answers in reply totimotur

interesting… what dose of melatonin are you taking?

timotur profile image
timotur in reply toScout4answers

I was taking 3mg, but stopped because of the vivid dreams. It’s a hormone with a feedback loop, the more you take the less effective it is and the less your body makes naturally, so one can get dependent on it. My 2c is, take it sparingly, if at all. There’s other ways to induce a good night’s sleep.

Scout4answers profile image
Scout4answers in reply totimotur

I have been taking 30 meg and recently started adding an extra 30 every other day.

Patrick has done a deep dive and has been taking 30 meg for many years. Have been having some beautiful dream lately 😎

Baldylocks profile image
Baldylocks

I have a friend who experienced very nearly all you describe some ten to twelve years ago but once he was declared in remission eight to ten years now and taken off a boat load of cancer meds the mood swings subsided. I was firsthand witness to how bad they’d gotten and yes had my feelings hurt as only family and friends can but once explained to me I was able to help our friendship survive it and we and his family are good. He is traveling the country now in isolation but when he’s out of blackout and in touch I will share this post with him and get his feedback. Perhaps it will be helpful.

Scout4answers profile image
Scout4answers in reply toBaldylocks

thanks for sharing the story, very helpful to hear this. Would love to hear you friend’s perspective.

Baldylocks profile image
Baldylocks in reply toScout4answers

As soon as I hear from him I will put the question to him and reply with his answer. His base is Texas but last I heard he was south atlantic coast and headed north.

Baldylocks profile image
Baldylocks in reply toBaldylocks

Scout sadly your patience with me hasn’t earned any reward. About a month ago you posted your ongoing dilemma with the drugs and your emotional coaster ride. I immediately recognized it as very similar to that of my friend and promised to get back once I’d spoken with him again.

Yesterday was his first time checking in with me since starting out on his national travel about the country. I shared your query with him but to my surprise he had zero answers for me. He has been in remission for some time and is and has been off medications for some time as well. I asked if he could remember any of the meds and he assures me he could not. His words were “l just took what was pushed blindly without question and without fail”

In his defense he was hit hard with multiple hardships and deaths of loved ones that hit all at once. I also detect when speaking with him some memory issues. He had excellent home nursing care after discharge from hospital.

I’m glad his recovery has been successful but sorry the wait was fruitless on helpful information for you. Please stay strong.

dmt1121 profile image
dmt1121

I have had similar episodes with ADT but they have passed over time, for the most part. I do take Clonazepam for anxiety but that predates my PCa diagnosis. I have found that mediation can also be helpful to acknowledge the emotions and ground and clear myself of it. Also, just letting the emotion pass without fighting it. Breathing through it, rather than trying to shut it down may give you more real control than medicinal approaches.

It can be a bumpy ride but we have many tools in our tool chest and we should use whatever works best.

Good luck.

Scout4answers profile image
Scout4answers in reply todmt1121

thanks for sharing your story. When Lulu gets control of my mind and emotions not sure breathing her away would be that easy.

CurrentSEO profile image
CurrentSEO

Scout,

Can I tempt you to think not how to extra medicate yourself ... but step up from micro-dosing to really diving deep into plant medicine and preferable together with Coco?

This can bring more or less long lasting or even permanent solution to your worries and mood swings. Why not to have a nice one week holistic plant medicine retreat with your wife?

It is good sometime to think outside the box and try to take out root of the problematic tree than just trying to cut branches with extra medication. Of course that have to be conscious choice and nothing wrong to go medication road if one chooses it as well.

I can suggest to research master plants and toad medicine such as... Ayahuasca, San Pedro, Bufo Alvarius, Iboga. Magic mushrooms can work as well as a start in a setting of shamanic journey.

Johnkelsey profile image
Johnkelsey in reply toCurrentSEO

I’ve been on Eligard and Zytiga since 2018. At first I cried every day, bemoaning my victimhood, gonna die soon, boohoo. I went on a week-long ayahuasca retreat, couldn’t handle the puking, but did see the possibilities. Then I met a bufo shaman, the toad Medecine. I experienced my own death and the universe without me in it. After one session I was so far down I pulled the blankets over my head for two days. Then the sunshine broke through … and I haven’t had a down ride since.

Western Medicine is amazing but they don’t know everything. Yes indeed, consult the master plants.

CurrentSEO profile image
CurrentSEO in reply toJohnkelsey

I second that Bufo is easiest, fastest and very often transforming experience to realize that physical body is just a temporary shell.

With Aya purging part can be hard to handle initially, because it cleans you besides your energetical and spiritual levels in your physical level as well. And if person goes there after plenty of previous medications and treatments - Ayahuasca will have a lot of work to do, that translates into some heavy purging sometimes.

I agree western medicine is amazing to treat psychological and emotional symptoms (!), but unable to go to the root of the issue. Master plants can accomplish in a week, what psychologist/psychiatrists and western drugs will not be able to accomplish in years.

Many master plants and toad medicine are there and available and waiting to help those who are ready to seek the truth beyond just physical world.

I hope, that in the future first thing after diagnosis , person instead of running to different doctors… take a deep breath and go for one week master-plant retreat (preferably with some members of the family)and then coming from there with different set of mind and without despair and panic consult with doctors, seek second opinions and make treatments decisions.

It is never too late of course almost in any stage of the disease to use some master plants … but sometime person can be too far gone on painkillers and becomes impossible to use most of master plants or magic toads beneficially then.

Using it with family is also highly appropriate, because otherwise explaining family how you feel and why you do different treatment decisions and why your outlook on how to live adjusted… why you not afraid to die… and why you are not desperate anymore to prolong life in your physical body by any means available could be a challenge…

I hope more people will read your testimonial about Bufo and consider that there are options to really cure yourself from depression and terrible mood swings that does not involve another bunch of pills and becoming medicated sometime to feel like half zombie.

Of course everyone is right whatever path they choose, because it is their choice after all.

Scout4answers profile image
Scout4answers in reply toJohnkelsey

Interesting experience. Thanks for sharing.

How do I find a bufo shaman, the toad Medecine.?

CurrentSEO profile image
CurrentSEO in reply toScout4answers

it is one of the “search engines” retreat.guru/be/bufo-retreats for retreats, many others are there as well.

I personally used for Bufo retreat in Spain, if you are ready to travel there, I can PM you there website.

You can find much closer to your location.

Scout4answers profile image
Scout4answers in reply toCurrentSEO

Thanks for the thoughtful response. We had talked about going to a retreat just as you described, more for recreational purposes.

I will bring it up with her in this new light.

CurrentSEO profile image
CurrentSEO in reply toScout4answers

I’m glad you will consider it and discuss with Coco. If you need some retreat recommendations, you can private message me.

Just keep in mind it is not really recreational …. It is more could be described as transformational and requires some internal work, processing and integration after that.

In my humble opinion such retreats are the best gift in life that you can give it to yourself or to your family member.

dhccpa profile image
dhccpa

I've avoided mood swings totally, fortunately, after almost 5 years on Lupron.

Concerned-wife profile image
Concerned-wife

is your MO considering a vacation from these drugs after 24 months? Many specialists are doing this now. In which case, you are nearly there!

Scout4answers profile image
Scout4answers in reply toConcerned-wife

he said I can take a vacation when ever I am ready. I am hoping to do 24 months post radiation, I am only @ 12 months post because I started Lupron 9 months before radiation to shrink my prostate which was 5 x normal.

LongevityAT profile image
LongevityAT

Scout - first I love your description of "cruising along at 30000 feet feeling on top of the world, living on Love" and can relate. My mood swings don't happen often and are more of a sneak attack. Totally unexpected.

Over the past few years through practicing the Wim Hof Method (breath work and cold exposure) I've learned to live consciously, be in the present moment. The WHM is great for controlling stress and anxiety but is was also good training for living consciously and has been my greatest weapon against these mood swings. When they happen, I am able to quiet that inner voice that is driving my anger, or whatever emotion I'm experiencing. However, it doesn't always have the instant results I expect and then I'll go off by myself. After a few minutes I generally am able to get back to being self aware and in the present moment.

I'm very interested in some of the "tools" described in the above responses to you and am open to exploring other techniques.

In a weird way it takes my mind off the PC and lets me focus on something I can be in control of.

Scout4answers profile image
Scout4answers in reply toLongevityAT

I am familiar with WMH method, cannot remember if I read the book or saw a video on U-Tube. Will revisit the idea. Your last sentence tells me you have read the Stoic’s

LongevityAT profile image
LongevityAT in reply toScout4answers

I have, guess I learned something!

jtspitfire profile image
jtspitfire

Lexapro generic 10 mg daily has helped me.

SteveTheJ profile image
SteveTheJ

No, this has not happened to me in 3+ years. What you're doing sounds reasonable but other men reading this should not hesitate to start ADT for fear of having the same reaction.

People react to medications in all kinds of ways.

Scout4answers profile image
Scout4answers in reply toSteveTheJ

I agree, the benefits of Lupron far outweigh the risks, but learning to recognize the side effect and cope with them is equally important.

Seebs9 profile image
Seebs9

I had such bad reactions to Lupron I had to quit. even after skipping my 2nd shot mood tantrams continued for 6 months. If it wasn't for lorazapam id be dead.

pjd55d profile image
pjd55d

early on I was told that ADT would put me in menopause - and it did - and still is - though either side effects are subsiding or I am used to it ? What DID happen for me, is that I became much more aware and supportive of what women go through. Chemistry in the body is very interesting - not always fun - but definitely interesting

best

Scout4answers profile image
Scout4answers in reply topjd55d

Yes...that is the upside of Lulu's presence in my mind; I am more Empathetic, Supportive and Understanding.

Shotgun2322 profile image
Shotgun2322

On top of the mood swings, it caused my blood sugar to spike and my usually low blood pressure to go up. On the good side, my type A male side fueled by testosterone completely subsided. Cut off in traffic? No problem. Difficult clients? Just relax.

What really helped was getting to the gym which is a good idea anyway since there are some muscle wasting on Elegard as well as the mood swings. And also getting on a bike and going hell-bent. Not gentle rides but flat-out. I like riding outside, not on an indoor bike, it seems like being outside doing something hard really helps. For whatever reason, it seemed to rearrange my hormones and some of the side effects, like hot flashes disappeared. Will something like this help you? I don't know, it seems like everyone's experience on this drug is different.

Scout4answers profile image
Scout4answers in reply toShotgun2322

Did an HIIT ride on my indoor recumbent bike this morning and I feel great. Best Medicine available and the side effect are so positive.

Shotgun2322 profile image
Shotgun2322 in reply toScout4answers

it seemed to me the harder the ride the better I felt. HIIT training is the right tempo.

London441 profile image
London441

You really touched a nerve with this post, and I think that’s good. Even though ADT behavioral changes are a popular subject and vexing issue for so many, your vulnerability and eloquence makes a difference. Well done!

You now have a trove of replies with empathy and no shortage of advice, to which I’ll add nothing. I’ll only say that I identify with your reluctance to turn to medications. I take nothing but strong relationships, work I adore, spiritual endeavors and more exercise than most would want to attempt.

However, no doubt everything probably needs to be ‘on the table’. For undeniably we on ADT are swimming upstream daily in a manner no one can truly understand, not even the most loving female friends and partners. This despite the fabled ‘parallel’ between our plight and female menopause.

My wife has been the ultimate game changer in so many beautiful ways since I met her. She says she knows the plight exactly. But female menopause, despite all its challenges, is not the same. Nothing else is like this. It’s not worse, but it is definitely different.

We have each other though, and it’s life giving. You made a fine contribution here. My belief is that the goal of ‘amor fati’ (embracing or at least accepting one’s fate completely) should dominate my life and thinking. With the full understanding that I will fail on a regular basis and forgive myself accordingly.

We all have our methods for coping. Now you have more than ever. Great luck to you!

Scout4answers profile image
Scout4answers in reply toLondon441

Thanks for the kind words and for sharing your experience.

RE: ‘amor fati’ - aahhh another Stoic brother. We keep this coin on our kitchen table to remind us of the Stoic principals.

London441 profile image
London441 in reply toScout4answers

You're welcome! Maybe keep it on the table next to that familiar coin of yours, gratitude.

in reply toLondon441

💯

Rocketman1960 profile image
Rocketman1960

I find Lorazepam in the lowest dose does take the edge off when I start feeling super emotional. Don't take it very often but it is in my war chest. Good Luck!

Scout4answers profile image
Scout4answers in reply toRocketman1960

My intention as well Thanks for sharing

swwags profile image
swwags in reply toScout4answers

problem with it is that it's not immediate, it takes 45 minutes to kick in. Pot would solve for that but I'm not advocating that. When I'm home, an ice cold shower helps and sure beats apologizing to my wife for the 1599th time. Exercise is an outstanding release. I do deep dives in the moment, especially on a run. I stop in my tracks to find the trigger. Then I do everything in my power to remove the trigger from my life. Gratitude is hugely powerful in helping me move away from the unwelcome rage.

Scout4answers profile image
Scout4answers in reply toswwags

Thanks for sharing

Miccoman profile image
Miccoman

After 7 years on Lupron (3 month dose) I couldn't take it any more and just had the boys cut off. Once the source of testosterone is gone (testes make testosterone) you no longer have to take Lupron -- but I'm years ahead of you on this journey and nearing the end, so it made most sense to me. Now, although my testosterone is below 12 (no better measure any more at URMC) the tumors are making what they need themselves, just as they did after a few years on Lupron with testosterone below 5.

Scout4answers profile image
Scout4answers in reply toMiccoman

Thanks Sorry to hear your tumors are growing. Not ready to chop my guys yet, will try to deal with it using some of the other ideas shared,.

GoBucks profile image
GoBucks

In the middle of 4.5 years of lupron & zytiga my wife started calling me "Dick". At the 3 year mark I tried venlafaxine for hot flashes. It helped and I wasn't a "Dick" as much. I have been on a med vacation now for a year and my name is back to "Honey".

Scout4answers profile image
Scout4answers in reply toGoBucks

Honey is the right pronoun

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

Only time I fall off the wagon is when I think of my ex-wife..... and then I calm down by slapping the shit out of my blowup doll......

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 07/14/2023 2:31 PM DST

Horse12888 profile image
Horse12888

My life on ADT was essentially sitting in my home office all day and crying like a small child. I quit ADT half way through my 24 month sentence because I simply couldn't stand it any longer. I told my MO that I desperately want to die, and that he shouldn't be surprised to learn that a self-inflicted gunshot wound finally got me.

Scout4answers profile image
Scout4answers in reply toHorse12888

I told my MO that I desperately want to die

This sounds serious is there anything I can do to help? Sounds like talking to a professional might be be helpful.

CountryJoe profile image
CountryJoe

Hey Scout. After my first year on Zoladex I became aware of waking up deeply depressed each morning. I start each day with exercise, so that helped some. With time, I also noticed the mood swings. I am now on ADT vacatión (1 yr) with low T and the mood swings continúe. I take 10mg of oxicodone each day for a fractured back from a motor cycle crash, and that helps cheer me up some, but I do worry about using opiates to help my mood. It aint easy Magee, as my old grammy used to say. Hang in there, my friend and listen to the advise of the wonderful Coco.

Scout4answers profile image
Scout4answers in reply toCountryJoe

Thanks for sharing your experience. I do listen to Coco, she is a great asset in this battle.

CountryJoe profile image
CountryJoe in reply toScout4answers

Just remember that you are Never alone in this battle, Scout. We all suffer from depresion and hard to understand mood swings. Not one of us is. really "doing fine", like some like to say. Its all relative, amigo.

DSJo profile image
DSJo

To answer your question, yes. It's called emotional lability and you can find more details on the internet. It's not uncommon for men on Eligard to experience this. I've just finished two years on Eligard and getting back to being who I used to be.

While I was on Eligard, I nearly drove my wife crazy especially the first 3 - 4 weeks following an injection. We decided to stay away from each other during that time and it helped. Not every man responds the same to Eligard which explains why some people report no problem.

And no, you don't turn into a woman because all of our estrogen is produced from testosterone so there is no estrogen to turn you into a woman. Eligard turns us into some kind of asexual eunuch with a myriad of side effects that most doctors have no knowledge of. For me, the best counter to Eligard was exercise - resistance training and aerobics. Meanwhile we have to educate our GP's because Eligard is effing nasty stuff.

MateoBeach profile image
MateoBeach

Broad discussion, Scout. I would just point out that there is inevitably a mountain of emotional issues accompanying the journey of this disease. Much of it we bury or sublimate, but it is there and bubbles up. It can be extremely valuable to have a skilled and trusted therapist or counselor to check in with from time to time. Best, Paul

Scout4answers profile image
Scout4answers in reply toMateoBeach

Thanks Paul as always I value your input, any thoughts on how to find a good therapist, knowledgeable about PCa ?

I am about 3 weeks into the Body by Science work-out protocol that you recommended, still too early to see results but I definitely feel great after taking muscles to failure. I applied it to my regular lifting but soon realized that I needed to be using the machines in order to go to complete failure safely. I am also applying it to my indoor recumbent bike routine (HIIT) going to failure, or at least serious muscle burn, on the last high load spin. (Max resistance on the machine)

Love and Respect

Scout

MateoBeach profile image
MateoBeach in reply toScout4answers

I would ask at your local cancer center about a therapist/counsellor referral. Very personal decision so personal recommendations from friends etc are invaluable. Maybe a prelim get-acquainted sessions to see if a good fit. Though must leave any ego or defensiveness at the door and trust.

My wife started the Body by Science workout this last week too! We have a great trainer who uses the concepts but also adds a few extra exercises (low back extension machine, biceps curl machine and pulley core rotations). It took me about 8 weeks to really start to see big gains coming (4 weeks on my own then another month with the trainer). I seem to have regained about 10 lbs of muscle mass since coming out of sarcopenia. Now around 10 months of the weekly and see surprising gains almost every week. I know it will level off at some point. Love those MedX machines. Don't overdo the HIIT or you can fall off a cliff of overtraining. 4 Reps of 4 minutes to 90% of max heart rate is sufficient as a tested formula and only once per week. But you should be able to maintain cadence and load to the end of the interval even though it will be hard, especially the last 30 seconds. I need to get a cycle trainer to do the same as I used to when training for racing (long ago). Now I just do pick up sprints on my runs (1 min), or hill repeats of 2-3 min. That's my view, Scout. Take good care of yourself and Coco.

Scout4answers profile image
Scout4answers in reply toMateoBeach

Thanks Paul for the color on your program ...bike I do 3 to 4, 30 second HIITs sandwiched between 3 minutes of easy (mid level resistance) My plan is to continue doing the biking 3 x per week as it really clears my mind (Endorphin flood)

Coco has seen the book but really likes her almost daily hot yoga practice. Maybe when she sees some results on me, she will change her mind.

mrscruffy profile image
mrscruffy

Yes mine made me suicidal, Psych put me on meds to keep me sane. Here is a crazy one for you. I have a female friend that is 25 years younger than me and lives an hour away so when we see each other it is a weekend at a time and we are inseparable. When she ovulates or menstruates my mood darkens and I double up on meds. Usually I am miles away when this happens but I know it. MO thinks that with no T I am linking with her cycle

Horse12888 profile image
Horse12888

Sorry to hear what you're going through.

Mood swings are an extremely common SE of ADT. I spend 18 months of my life bursting into tears at the drop of a hat. I spent most of my days in my home office with the door closed because it was so pathetic and I felt ashamed to inflict my emotional torture on the people around me, and they clearly had gotten tired of hearing how desperately I wanted to kill myself.

Oncologists understand three things: 1) ADT is likely (though not certain) to prolong the patient's life , 2) It will cause an immense diminution in his QoL, especially if he has been sexually active, and 3) They don't have to experience the misery themselves.

Scout4answers profile image
Scout4answers in reply toHorse12888

# 1 is working according to the plan; PSA undetectable at 21 months

#2 we are still sexually active; 3 nights in a row this last weekend . 😎

Life is good overall. Dancing multiple time per week. Getting plenty of resistance exercise plus heavy duty yard work. I know I am luckier than most.

Now that I understand where the negative thoughts are coming from and have some strategies to deal with them, I hope to keep them from getting me off track. Only time will tell.

Thanks for reaching out

Derf4223 profile image
Derf4223

Cannabis can _cause_ impulsivity, hostility, paranoia _independent_ of frequency of use.

The effects accumulate over time. I wonder if they can't be _unleashed_ by being on ADT.

I totally agree with the post that said mood swings come out of the blue, randomly almost. Music has helped me a lot. The tension of being in ADT limbo playing PCa whack-a-mole is hard on all of us.

Excerpt from ncbi.nlm.nih.gov/pmc/articl...

RESULTS

Marijuana use was associated with increased impulsivity on the same day and the following day relative to days when marijuana was not used, independent of alcohol use. Marijuana was also associated with increased hostile behaviors and perceptions of hostility in others on the same day when compared to days when marijuana was not used. These effects were independent of frequency of marijuana use or alcohol use. There were no significant effects of alcohol consumption on impulsivity or interpersonal hostility.

CONCLUSIONS

Marijuana use is associated with changes in impulse control and hostility in daily life. This may be one route by which deleterious effects of marijuana are observed for mental health and psychosocial functioning. Given the increasing prevalence of recreational marijuana use and the potential legalization in some states, further research on the potential consequences of marijuana use in young adults’ day-to-day life is warranted.

PrettyUnhappyGuy profile image
PrettyUnhappyGuy

I see that this post is old and I hope things are going better for you, but wanted to thank you for writing it. Your post describes me to a T. After three months on Lupron and Casodex I started to have suicidal ideations and days where I would not get out of bed AT ALL if my spouse didn't make me. I started neglecting all my responsibilities because "what's the point?"

I started seeing a therapist who is helping me somewhat, and the doctor is stopping Casodex and just keeping me on Lupron so we'll see if that makes any difference. I know in my head that these feelings are just due to the drug but that doesn't really help.

Scout4answers profile image
Scout4answers

One of the things that has helped me is SAM-e , it is a mood enhancer and in my opinion works much better than the SSRI drugs. Google has lots of info on it.

There is light at the end of the tunnel, hang in there. If we can live for 5 years I believe a cure or permanent remission that is renewable will come out of all the RCTs that are on going.

jimg51 profile image
jimg51

yes and it has been hell.

jimg51 profile image
jimg51

I have been on Lupron/Abiraterone/Prednisone for a little over two years now. It was not too bad until after just short of two years when I started crying a lot, having recurring unwanted thoughts and depression. Physically, I had.frequent hot flashes, insomnia, high blood pressure, high blood sugar, osteoporosis, ED and occasional fatigue. I went off Abiraterone/Prednisone two months ago and will go off the Lupron when it wears out in five days. The side effects are rough and get worse over time, but if you can hang in there, it may kill your cancer or at least stop the growth and spread. If your PSA remains undetectable, you can probably go off ADT after 18 to 36 months. Ask your doctor. The best remedies for the side effects are exercise and meditation or breathing exercises.

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