I want to set the stage before I continue this post!! This is not a pity post!!! I recognize that my body and mind have gone through some drastic changes since ADT!! Physically, spiritually, emotionally and mentally but the later two are grinding my gears most of all!!!!! I don’t know if “Anxiety” is emotional or mental but I can honestly say that the only prior memory of my I having an “anxiety attack” was when a crane malfunctioned on my job-site and came crashing down with the boom actually brushing my hand as it crashed to the ground! Nobody got hurt but I was more of a wreck than the boom!!! That only stated to establish my normal threshold!!! Now all it takes is a dog barking, a crowded restaurant, kids playing....... you get it!!!! I always instigated the rowdiness, now I despise it!!!!
I don’t mean to disrespect anyone (there’s a change too, I wouldn’t have given a shit before!!) but I have never had any belief in the mental health profession!! I always felt that ANYONE could be dx’ed as crazy (everyone I know anyway) and you will remain crazy until you doctor says you are no longer!!! No X-rays, blood work.... just opinions!!! A kid acts up, feed him drugs!!!! Sort of “give me a person and I’ll find a crime” and we’ll have drugs in waiting!! What an A$$hole.....right?!!!
Now I find myself relying on them for some sort of return to the old me or better quality in my current ADT soaked life. Tough, tough call on my part I’ll admit!!
I was fortunate enough to hook up with a psychologist who is a PCa surviver so it wasn’t necessary to get into all the physical changes / issues and how (whether you believe, accept, like it or not) they effect you other than physically! He pretty much had been in my shoes!! He quickly pointed out my depression and anxiety symptoms!! Far worse than I ever imagined, but it all made sense!!
Well, talking it out as much as it could be and my PcP handling meds so it was mutually agreed to a “call me if you need me” type of thing (simplified greatly for your reading pleasure)!!!
Now we’re playing around with drugs!!! Unfortunately, he couldn’t prescribe meds (because..... well.... I trust him!!!) and I have to rely on my Primary Care to take care of that!!! She refuses to accept the fact that I know when and why all this started (Eligard / ADT) but wants to reinvent the wheel. My childhood and bla bla bla!!! I keep telling her that I clearly remember the old me!!!! I clearly remember having fun, singing to the radio, doing fun stuff with grandkids.....!! I know / pray that this will pass when the Eligard passed / gets out of my system and my T returns....but!!!!
Anyway, She has tried some drugs (in the lowest dose available) that might have eased my depression and anxiety but worsened my QoL with adverse side effects. I’m already tired of being a guinea pig so I’m (by my choice) in a holding pattern with no drugs while waiting for my next test results ( in 4 weeks (T & PSA levels)) to see if there are any improvements and a light at the end of the tunnel. I don’t feel “ANY” relief in the side effects (last 3mo Eligard Nov 9th 2018)!! It’s thought that it should be weened out of my system by now!!
Anyway, Somewhere in this vent is a question!! I guess the question is “ is this how it works?
*Trial and error?
*If you react to one, will you react to all? Grinning and bearing it with nothing sucks but the side effects suck a little more!!! Before leaving the shrink, he thought it would be a hit or miss thing but “Missing” is the rule not exception!!
*Is this the standard operating procedure?
jc
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Jimhoy
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Psychoactive drugs are hit and miss, trial and error in my experience. I do recommend starting on the lowest possible dose and going up from there if needed, because nothing is worse than having too much antidepressant. Think vomiting in the men's room at the office while it feels like you're having the best day of your life. Vomit and euphoria should never occur at the same time. But I digress.
I've had excellent luck with Clonazepam (as needed for anxiety) and Bupropion (stimulating antidepressant). I've been on both of these drugs for a decade before my cancer diagnosis. The Bupropion is particularly good for offsetting the effects of ADT (excepting hot flashes), and studies hint that it may even improve survival.
I've also tried Cymbalta (see "vomit euphoria" story above), Effexor, and Prozac, and decided that Clonazepam + Bupropion works best for me. My GP is usually willing to write a prescription for a specific drug if I ask, with a few exceptions.
I tried Prozac and Clonazepam (separately) with no luck!!
I’ve settled for Ativan 0.05 (as needed) for the time being!!
My system has always rejected drugs. If my horror with Eligard isn’t enough proof, I have struggled for 12 years trying to find meds that I can tolerate to treat my blood pressure and artery disease. No reason to suspect that psychotic drugs will not be the same issue!!!
Case in point was camping last weekend (haunted campground in Ma.) we had over 40 people in our party, all good friends and family, mixed kids and adults!! At the campfire, a few beers, stories, jokes, a birthday celebration for 3, and I can’t stand it!!!
I’ve like beer, likely more than Justice Kavanaugh and don’t drink to get drunk, but I took 2 Ativan (script is 1-3 as needed) and thought I was going to die. Couldn’t walk straight, slurring......a freaking mess!! Missed the haunted hayride with my grandkids!!! F’ed up!!! So now I don’t even have that (a couple beers) left for fear that I’ll need Ativan. Either that I have to remove myself from the stress (?) like I described above!!
So, if the ADT side effects don’t layoff, I guess I’ll have to see what she has up her sleeve regarding a different med with hopes that I can eliminate the dramatic and unpredictability “as needed” aspect!!! I’ve dealt with Murphy and “her” law, too many times not to suspect that beer will be a thing of the past!!!!
Ativan and clonazepam are anti anxiety meds which temporarily suppress anxiety . When you stop them you go thru severe anxiety and restlessness for few days.
These meds should not be taken long term as they are addicting and can impair your memory.
Wellbutrin (bupropion) is a stimulating anti depressant but it can cause more anxiety and even agitation and sleeplessness.
The meds which work best for people who are on ADT and have chronic anxiety, panic attacks and depression are Serotonin specific meds.. such as Lexapro, Zoloft, Prozac etc.
Effiexor works well but can increase blood pressure at higher dose level. Same thing with Cymbalta.
So choosing some med from SSRI group (serotonin specific) is most effective and safer but they take 4 to 6 weeks to show effect.
Trazodone works well for people with PTSD and tens of thousands of Vietnam vets and gulf war vets have been prescribed this med which reduces anxiety, improves mood and gives solid 6 to 8 hours of deep sleep.
1) The Prozac was one that I took and it did take weeks to take effect. I recalling feeling F&$#ing perfect within a week of starting it and then in a couple days, evil would set in!! Sooooo much worse that without anything!! On and off, good and evil for weeks!!! They said that the good days should start to overtake the bad, but it never did. After several weeks, I think I was feeling better emotionally but the day long migraines were killing me, thus hard to tell and canceling out any benefits!!!
2) I actually do have trazodone 50mg as needed for sleep. It was never addressed to me as anything other than that. She said take up to 200mg and I should experiment to see what works to get some REALLY BADLY NEEDED SLEEP!! So, I take 50, nothing!!! I take 100 (2tabs) and sleep but drag ass most of the next day!!! So, they sit in my med cabinet collecting dust!!!
I am also have a R.I. Medical Marijuana Card and tried a couple recipes. One with high THC that I hated and one with high CBD that proved nothing to me!!!
I told you, I’m a real pain in the ass when it comes to meds!!!!
Thanks again for your input but I think I knew the answer when I posed the question!! I guess I was looking for a beer saving miracle!!!
I guess the best I can hope for is that this life saving crap gets out of my body and I don’t have to put any back in!!!!
Ativan / lorazepam is a dang sedative. I had a prescription for it for insomnia. No wonder you were stumbling around, and you added alcohol to it. I'm a bit jealous that you could get an ativan prescription -- my timid GP refused to renew it for fear that the DEA would bust down his door and take his medical license away. I only wanted it to help with sleep and only took it at bedtime. Now I have an alternative -- an indica gummy. Don't be so judgmental about talk therapy either. I benefited from that after a God awful childhood. They say that depression is anger directed inward. I had plenty of rage I needed to get off my chest. It's not you listening to a therapist. It's a therapist facilitating you unburdening emotions. I wonder how I functioned carrying that baggage. I see that you have access to cannabis. Go on Leafly to investigate strains. The right strain, in the right measure might help. Maybe a nice indica gummy. Start small and try some things. Just don't drive under the influence.
DUI, Thats a point that I missed when talking about medical marijuana was the driving! With the passing of another summer and the grandkids back in school, I think I will experiment a little!! I was always on call to shuffle them around to sports and stuff while their parents worked!!
I remember my mother had to be hospitalized for depression before they were able to find the right antidepressant for her. As I recall, they had to cycle her on and off three before they found one that worked for her. And this was 25 years ago - before the bewildering array of meds that are available now. My ex found that a combination worked better than one alone, but some people get seratonin syndrome from adding them together. I think it's as individual as a fingerprint. This is something that a psychiatrist, rather than a psychologist or GP, would have more experience with.
It sounds like you're suffering from PTSD from the crane incident. I think that clinical trials for guided therapy using MDMA look interesting:
I don’t think it matters who prescribe these medications, I’m pretty sure I know the outcome!!! As I stated to LearnAll, I appreciate the input. I will Use it at my upcoming appointment with Dr’s to speak and listen a bit more intelligently! I am left hoping that the elimination of ADT will eliminate the anxiety too or at least eliminate the urgency of my issue for now!!! PTSD, I kind of thought that using the crane experience as a gauge might not be the best choice but I was just expressing what it took (before ADT) to get the same result as a barking dog does now!! Was not a long term, traumatic event. Thank you for the observation though!
ADT by itself is not the cause of anxiety and depression. Its the whole sense of loss, impairment and feelings of vulnerability which comes with being diagnosed with metastatic Prostate cancer .
The uncertainty, insecurity, threat to our manhood , treatments and financial issues...all of these factors combined put a lot of stress on our minds. This illness brings us face to face with ultimate reality...that life is limited.
For many people, trazodone 100 to 150 mg at bedtime does a fantastic job of reducing anxiety, elevating depressed mood and giving 8 hours of deep, refreshing sleep. 3 birds with one stone . Discuss with your psychiatrist your various options.
Very good point but In my case, I feel that ADT caused my condition.I don’t consider my dx to be lethal (at this point) so not preoccupied or obsessed with it. So the side effects of ADT (or side effects from the actual drug (Eligard)) are clearly my cause. Caused by or part of....semantics!!!
I’ll talk to my PcP (until determined its still necessary) I consider yours and Tall_Allan’s advice and seek the input from a psychiatrist to take over any needed treatment.
I'd be a bit wary with the trazadone dosage. I was prescribed 50 mg for insomnia. I started with a half tablet and was treated to the 'traza-boner' effect. One time I took 3/4 of a tablet and was starting to really wonder if I had crossed the priapism threshold. 100 mg or more and I'm sure I'd have had an embarrassing visit to the ER. Oh the other thing is that trazadone gave me horrible dry mouth too, which wasn't conducive to sleep.
I always kid around when the commercial says “If you have an erection that last more than 4 hours........ nope, the last person I call will be my doctor!!!
Anyway, didn’t encounter that condition but, I didn’t stay with it either!!! When I found it went from nothing to zombie, I stopped it!!
Maybe I act to abruptly but I am not interested in being buzzed or dragging a$$ all day. I may have a “triggered” episode once a day, week or month...... who knows!! If that is a byproduct of the all of the meds, then I need to treat anxiety on an as needed basis I guess!!!
Very cool link, thanks. I have an interest in MDMA enhanced psychotherapy after hearing about it in a documentary. I might want to investigate this further. Previous attempts to explore it drew a blank. From the testimonials given in that documentary this could be a very helpful tool to go mainstream.
I know this will be hard to do, but read this and try not to reject it as total BS that works only for wackos. Many years ago way before my PCa dx, I had another medical issue that caused me lots of mental distress. My GP MD eventually recommended an approach that can best be described as meditation if I had to pick one word. He "prescribed" two books: "Wherever You Go There You Are", by Jon Kabat-Zinn, and "Mindfulness in Plain English", by B. H. Gunaratana. My doctor's recommendation/explanation and these books helped me slightly at that time (because my instinct is to dismiss this sort of stuff), but the principles have helped me a bit more now that I have Stage IV PCa and ADT issues.
It's not accurate or fair to try to summarize this approach in a few words, but I can't resist trying. Meditation and related strategies often teach one to live in and enjoy the present moment. Not the past and not the future. This is the new you. Don't fixate on comparing the new you with the old you. Don't worry so much about the future. Enjoy your life right now.
I'm being a bit hypocritical here, because this doesn't completely work for me. But reading about all that you are going through, I thought I would put it out as an option for you to consider. Compared to pharmaceuticals, trying it has little downside.
I have read some about meditation but don’t think its in my DNA!!! Too high strung and I know that, even if I could cross my legs and sit on the floor and relax, a frigging dog would start barking (I went from no neighbors to shitty neighbors!!!). I try not to disregard any suggestions that I get from my or other post I read on HU. So, I will order the books one at a time!! If it touches me, I’ll get the other!!! Its got to be short money and if I can make it work, freaking great!!!! The closest I have come to this is that I ordered the the Calm sounds (rain, water trickling down a brook.....) which only made me have to piss more!!!
Hearing that too, brotha. I’m still too antsy to meditate...just gives me more time to observe all these shit that needs doing in that particular room.
I'm sure meditation does help and works for some people, but on the other hand... ADT causes depression at a chemical level. For many people, they will need a medicinal solution to a medicinal-caused problem.
The same thing goes for exercise, where my personal experience is that one pill is about as effective as running 10 miles a day and is much easier on my joints.
Every brain/mind is different so it can take trying several meds b4 finding one that works for you. If you haven't tried it consider escitalopram (Lexapro) starting with 5 mg a day.
Below is an excerpt from a chat I was recently involved in. Besides being lethargic, ADT has left me with debilitating joint pain in my left knee, hip and shoulder......so no, I do not not exercise like I would like to!!
I will guarantee that you are correct. As well as staying fit, I was ALWAYS involved in my kids sports, played adult league sports and was very involved with my 6 grand kids sports (baseball, softball, football and basketball (not so much field hockey (don’t really get that one!!)) now I’m just a spectator!!! That sucks in itself!!!!! As stated below, I do look forward to getting some relief and get my mobility back with rehab.
Thank you
Jc
ADT rode me hard and put me away wet! Physically, emotionally, spiritually and worst of all MENTALLY!!!! I appreciate the blog comments that say just exercise exercise exercise!! I was unstoppable prior to ADT. Working full time and my house and property was impeccable. Now.....not so much!!! The form of retardation that Eligard has left me with includes being sooooooo terribly lethargic that I can’t stand it!!!! I have always stayed as fit as possible (have plenty of dusty equipment in the man (right!!!!) cave), everything within acres of me, that I built with my two hands was well maintained and up to date!!! I was forced to retire after loosing my mind (and my job (and left unemployable)) while on ADT so I have plenty time and items on the honey do list, I have enough money to complete them too, but yet I sit there!!! I tell myself “get up and do this or that, even little things but I just sit there! I get so pissed off at my self and ashamed but........just sit there!!!! I see the disgust in my wife's face when she gets home from work and asks if I did anything today, I just sit there!!! I get up early and have breakfast with my wife every day and tell myself “don’t sit on that couch” but I just do anyway and just sit there!!! I’m on my second 6 month wait and see when the first in June showed I was still full blown ADT. With feeling absolutely no relief from the side effects (my list written by Steven King) I have little faith that the Eligard is out of my system thus, getting up and do stuff including some sort of self designed rehabilitation if I can get the will to do so!!!!
Very sorry you’re experiencing wicked side effects. I’m pretty much crippled with arthritis. I find pool walks help me. I hope you get some relief soon. Your wife might understand! It’s my dog’s name! 😜😜🥰🥰
When I was DX with APC 23 years ago a social worker interviewed me after a radiation session and and told me I have symptons of depression and see my PCP for medication. PCP prescribed Zoloft and within two weeks I felt like I was reborn. I could now sleep at night, head was no longer spinning with all the possible outcomes just repeating itself hundreds of times. After completing ERBT and Brachy I was able to wean off Zoloft in six months.
Now 23 years later I had my usual BS and CT scans to check for mets.. MO said there was a mass on one rib and had a biopsy. MO said the mass wasn't PCa but Multiple Myeloma. I almost fell off the table. There is NO cure for MM. This time I went back to same PCP and asked about getting Zoloft again. How things have changed. Everyone has their hands in the pie. I must first talk with a therapist (2 months to get an appointment) see her twice before I can be referred to a phychiatrist. Again the wait, six weeks for an appointment. Phychiatrist had no problem prescribing Zoloft. Again Zoloft worked like a charm. sorry about the length of this reply.
That rang a bell!!!! I now remember when this started, I had what
turned out to be a panic attach. Not really knowing where to start or what to do, I went to my PcP who prescribed 5 pills of (I don’t recall the med) and would not renew until I found and talked to a therapist!! That took months and I believe that aggravation compounded the problem. A catch 22!!!
Jim. Same here ,never believed that a shrink could help me. I’m already crazy. I suffered with depression and anxiety after the chemo and Adt. Finally the oncologist put me on Effexor twice a day, it settled me down ,also helped with the hot flushes. Good luck with the monster 🙏🙏
I just checked out your profile....I'm the same age. The symptoms you describe are all real. I have taken no drugs...but every time I feel "down"...I just make more lemonade.
It's what I've always done...may not work forever...as (unlike you) I will be taking (because of being stage 4) Lupron (castration/same as Eligard) until I'm no longer with "us"...
The joy of thinking that something might be temporary should help in your fight with the battles of no testosterone...I do know from friends around me with "depression" ...that it takes a while to find the right "bullet" to help. Being in a holding pattern...sounds like the plan I would take....and just make lemonade and ride out the few more months of symptoms that you feel.
You use terminology in your post that I often use. "The old me" etc. My stress triggers are also children, dogs barking, loud restaurants...AND hot rodding cars....
Wether I’m an optimist or a fool is yet to be determined!! I’m told that my cancer was limited to a portion of my prostrate with no signs of mets to bone or other glans! 45 ERT should have took care of that (for now) and 18mo of ADT should have iced the cake!! That was the plan!!! Thats what I paid for sooo if that not the case, I want my money back!!!!!!
As I write this I can recall the old me!! I was sharp as a tack and ADT has made me sharp as a sack full of bowling balls, so I have to believe this will pass. However, I fully understand the reality of a new normal or worse!! Thus the aligning of my ducks!!!
This is the part of ADT that is so painful to many men. I have written (perhaps too often) about how some MOs (including mine) are dismissive of/ignore/play down the fatigue, brain fog, etc. that SOME men experience with ADT. Not all men. I pushed back and said no. He very pointedly said, "THAT is the standard of care" as if the SOC was some sort of law. Well, yes, to him it is some sort of law. Not one that I must follow. And I had good reasons why I was not going to choose to follow the SOC. He was free to disagree; so was I. I live with that decision, the best I could make at the time. Now, 11 months after RP it is holding up as a valid decision. I declined RT and I declined ADT. That could change next year if my next PSA is not non-detectable.
I hear / read that the improved survival rate of adding ADT to ERT is from 0 to 5%?!!! Knowing that and knowing what ADT would do to my QoL, 2 years ago I would have DRASTICALLY changed my tact!!
I have also become wicked smot regarding SoC. I learned that a 3mo deposit of Eligard keeps me castrated for WELL over 6 months.
Q- Why would I want twice the poison in my body.
A- Because thats what the manufacturer recommends!!!
That will change should the I be faced with considering the resuming of my treatment!! Not going to be an easy call on my part!!
And this too shall pass. I find solace in those words. I fight and grind daily against all my caregivers as my way of coping although sometimes. I find my self at a crossroads of desperation and absolute despair dwelling on dark thoughts and anger, my Hope's a cure being dashed, it's like putting your finger in a dike, nothing holds after a while. A side from this fight I once, about 20 years ago went through a living nightmare unrelated to health issues, it taught me a lesson that carries me through the dark and hopeless times. A. It could always be worse. B. Tough times never last. C. Learn to get out you head and into your body as ravished as it may be and move on. The final helpful thought that drug me out of my depths of anguish and despair was I learned to resign myself of the things I cant control, the ugly and terrifying momentum of life's curve balls. Beyond the disease and through the fear you are still you, and nothing nor anybody can take that away.
trial and error/hit and miss? yes. everyone is different in his metabolism and in the mixture of the psychoactive drugs with any med/supplement/chemo he is taking. Meditation is hit and miss/trial and error, too. Cancer chemotherapy ditto. The point is to start on the journey, wherever it may lead you.
Well, I started the journey, and pulled into the rest area!!!
I’m admittedly am one stubborn “mick” and have it in my head to wait it out until I see where I am with ADT. At my 6mo check up (last June) I was still full blown ADT so now I’m closing in on the 2nd 6mo. wait and see!!! If there are significant signs of the return of testosterone, I’ll play that card (see if I heal naturally) if not, well.... I’m learning my options here!!
I too feel major mental side effects from ADT therapy.
I try to not do the drug leapfrog thing.
Through trial and error the only relief I found was 100-200mg a day of CBD oil drops I put on 1/2 oyster cracker under tongue. I dose every 6 hrs for consistently. NO side effects I can judge except significantly less pain, more relaxed, less anxiety, more sleep. It has helped MY cancer friends improve QOL.
Xanax..I couldn't have lasted these 8 years without it. Actually has been proven to lower PSA levels too. They gave me 3 months of Lupron in 2011 and I refused to do any more. My PSA rose to 59. Now has stabilized to 4.5 for 5 years with PCSPES and intermittent Bicalutimide.
Wow Victory, I've been on PCSPES for about 8 months and it has lowered my PSA from 14 down to 6. I'm going to look into the Bicalutimide with it too as I know it works with it many guys are saying. Thanks
Hi Victory, just wondering if you have a link to back up the Xanax/PSA connection. I'm on clonazepam myself and have found mixed results when trying to research the effect of benzos on cancer. It's great for anxiety but I worry that it may be counter-productive to fighting cancer. There's some irony in my previous sentence.
I remember "getting the blues" when I was a teenager. But then I became a drunkard, and it was full speed ahead. I always think of the people who have things so much worse than me. Taking granddaughter to THE MALL gives me a rush. I do reach out and help others a little more than I used to. Wife used to call me The Grinch. Not so much anymore. Enjoy.
Hey .... being the ever inventive engineer that I am ( well, used to be ) ... I’m thinking :
1. Install and modify one of those air pumps used on those Christmas yard dead Santas and get some “ action “ out of patty other than letting you down.
2 . 12’ X 12’ supple black plastic tarp and a gallon jar of mayo. ( half pound of talcum powder for chafing optional ) ( chain saw - catsup optional for an ex wife fantasy scenario )
3. Get one of those motion detecting recorders that allow you to add scare messages for burglars, but instead record a few “ lady “ sounds . Keep it near patty.
A: optional instead of lady sounds, my favorite , the growling - snarling dog sound effects ( reminds me of one of my ex’es ). Or change to your preference.
If you want to get real fancy , add an air switch and install a second pump .... of one of those advertising sky dancer pumps ... and flip the switch when you’re ready to flip your switch .....
OMFG, this is why I can't stay away from this forum. The dark humor is just too funny and irresistible.
While we're on the topic, I'm sure if I got a blow-up doll my wife would put small pinholes in it, just so that I could never quite get it fully inflated.
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