I'm having a great deal of problem with the side effects of the Lupron (and the enzalutamide). Besides the heat flashes, I'm completely emotionally overwhelmed, sometimes over something, sometimes over nothing. And a complete lack of motivation. My oncologist has suggested anti-depressant, which I'm resisting, but will likely agree if I can't find another way to manage it. Any suggestions would be appreciated. thanks in advance. By the way, I'm 55, DX two years ago. GS 10, post radical, post-chemo, in a study with NIH that appears to be having a positive effect on the CA, for now at least. But truthfully, I really don't care.
Lupron side effects: I'm having a great... - Advanced Prostate...
Lupron side effects
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Joelhirsch
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•
Joel,
It's easy to slip into the dark side with pca. You need to fight fight fight! That means you try excercise, help groups, this board, and yes, if you need a drug to help, that too!
Best wishes
Hankm
Part of you cares about something. Focus on that part. This may not be the life you envisioned, but there is still light and purpose.
Joel, I did not realize there was so many of us Gleason 10 guys, welcome! It gets better, loss of T can make us emotional as well as a cancer dx, try a fan for the hot flashes, and try to make the most of every day, walk, get out of the house, live your life, try to help others, all these things help. I was dxed as stage 4 witjh GS 10 back in 06. I am very curious what trial you are on that is showing benefit, can you tell us, Thanks
I'm in a study, what comes before a trial. it involves enzalutamide and a series of immunotherapy injections, ongoing. I'm not sure, but if you've already been on the enz you might not be eligible, but I'm not sure. NIH has a website where you can plug in your disease and age and zip code and it gives you a list of studies and trials within a certain distance of you, I think 100 miles. The one I'm in is actually at NIH in Bethesda, but there are a lot of NIH approved hospitals.
Thanks for your reply, and good luck.
Thanks Joel, You are right , I am probably not eligible, but I am always curious about the new immunotherapies as I believe that is the future, and when they get it right , it will benefit all of us.
Dan
I don't know if you're eligible. You should call NIH.
I have used antidepressants. Without them I have mood swings and lash out at people I love. Currently using Cymbalta to good effect.
• in reply toYostConner
Very honest!
Based on my own experience, I would recommend medical marijuana if you are in a state that allows it. I use it for depression when I need to and it works wonderfully with minimal side effects. It also helps with pain relief and insomnia, I've used it for both. Good luck.
Joelhirsch• in reply to
Thanks. Not legal in my state, but I couldn't care less. lol. what are they gonna do to me? I smoke a bit at dinner time or I wouldn't be able to eat. never got my appetite back after the chemo.
Gleason 9 here. I wouldn't be able to eat without the medical cannabinoids. CBD is the substance in marijuana that brings back taste, helps with mood, helps keep down nausea and anxiety. I get it in a 25mg CBD to 1mg THC tincture, so we can administer in a dropper under my tongue. A little THC is necessary for CBD, but with my tincture I don't get high, just relaxed and peaceful. I've fought depression and anxiety. I've been able to relax and conquer with peace - able to breathe without a constant sense of battle. I'd say go for it if you can.
• in reply to
I am partial to 'Blue Dream'. Don't use it often and of course never when I anticipate needing to drive somewhere. It is nice to live in a somewhat enlightened state.
There are a lot of things that can help with hot flashes. The best relief I have received was taking gabapentin. It helps me a lot. Tried accupuncture, but it did not help much.
As for depression, I suppose there are a number of options on a continuum. Exercise and forcing myself to stay active has worked well for me. I just feel better if I walk a few miles, go to the gym or ride my Pelaton. I have to admit I never want to. But I am always glad I did when it's over.
Yoga, meditation and acupuncture may help, too. Or a support group.
But there is also no shame in taking an antidepressant. There is a reason the doctor asks every time we visit if we are having any depression. It's important to answer them truthfully and to get help
Most importantly, don't forget that the purpose of the Lupron is to help us live longer, with some quality of life, so we can spend time doing what we want to and to be with our loved ones.
I do hope you feel better and take the right action for you to get better. PcA is tough enough without another demon to deal with. They can treat this one! 😊
• in reply toJamesAtlanta
Insightful & positive.Thank you!
I could sense that mild depression was messing up my relationships with my family and friends. I found the mild anti-depressant, "Wellbutrin" helped me quite a bit to even out y emotional swings. Also I strongly urge you to get into an exercise regimen, join a gym or find others you can work out with on a regular basis to give you the umph to walk or work out. There is a certain level of lack of inertia that PCa and it's various treatments places on all of us and whatever we can do to overcome this deadening lack of inertia is valuable. I have chosen to not go the medical marijuana route because I recall from my "hippie" days that the drug did not help me overcome the state of rest.
Pkafka
I'm older (72), but otherwise in a similar situation (GS 10, post radical, etc). Started Lupron 12/1/2014 and now on Zytiga and Prednisone, too. Mood swings into bad depression started for me about two years ago and my spouse who's a therapist suggested Celexa. Been taking it daily ever since. No side effects at all and after an initial couple of weeks, I don't even notice it anymore. I still get to feeling hopeless sometimes and sad about having CA, but I'm not having crying jags like I used to. My sense is that psychotropic drugs have come a long way from the early days and that you can get some emotional ease without feeling dopey and numb.
Hi Joel,
A lot of options from guys who have been there. I didn't realize the severe headaches I was having were from depression. My primary put me on Cymbalta, and just like that I was felling better. I also take a marijuana product daily, since my diagnosis, and I believe this is causing my mets to be painless. I'm 58, mine was aggressive G9, but I spit at it. Seven and a half years gets you pretty fed up with the side effects, but they do subside. Except the hot flashes, ugh. Do yourself a big favor, and try to care. Laugh a little. I make fun of my girly boobs, it's just a fact of life now. Good Luck.
Joe
Diagnosed in 2000. Gleason 9. Currently on Xtandi after many other therapies. I've had good success using Gabapentin to combat the hot flashes and night sweats.
thanks. I was on gabapentin for the peripheral neuropathy that came with the chemo. only stayed on it a couple months. didn't like how it affected my thinking process. my docs are talking to each other now to try and figure out what to give me.
I have been using a mixture of almond oil and peppermint oil on the inside of my wrists and the back of my neck at night. Seems to work. Recommended by a menopausal lady friend for hot flashes. Exercise beats the fatigue, ironically. Helps on the weight gain and the mood swings, too.
I appreciate all of your replies, truly. Some of the suggestions I've already tried, some are not really feasible to me, as I have not retired yet (I expect to medically retire the end of this year). it's nice to know there's more than a handful of GS 9 plus that keep stayin alive. as i'm sure each of you have experienced, it's just very overwhelming at times. and I've barely touched on the pretty bad other side effects I've had/have. glad I'm a member of this group, although as they say, I wouldn't want to be a member of any club that would be willing to have me as a member 
• in reply toJoelhirsch
Me neither..You have a great spirit..Keep it up !
It's official! Welcome to the club. Most of us have these symptoms.I do. .I m on treatments for just 2 yrs. I was having a bad time emotionally a yr. ago .An onocology phycatrist told me Kalonapin for 2 wks then lexipro for a month then he would talk to me. I was having suicidal thoughts and taking it all out on my passive wife.Im so hesitant to take any more chemicals ..So I refused under strong advice from my wife. Skip forward another yr and now I still fight heavy emotional surges.Some days none, sometimes feeling bad for weeks at a time..This for sure for me is a battle.. I'm told by many " Yes, take the phycho tropic drugs" and others say "Don't do it " Keeping around positive people and situations is my best way to keep my spirits up. Now if one gets trapped in a suicidal or destructive state of mind ,seek help .Hang in there and know that you are not alone in this at 55.Im 2yrs ahead of you and that's not much ..But I've read here of men in their 40's , so we ar not the youngest nor do we have the worst cases ....Most of us can get depressed.. don't get caught there. Find some happiness each day ..Give and receive love. ... may sound corny ,but for me it's the best med. We got a puppy ..Hard for me to be sad or depressed when I'm with 8month old Lulu.. I'm also on a test drug , Tak -700... yah! We know how to have fun ..Good luck!
ctarleton• in reply to
Walking the dog in the park definitely has some healing qualities about it, with the added benefit of getting out into the beautiful real world instead of so wrapped up inside one's head.
Been on Lupron for a little over a year. Have issues thinking clear and get flustered over the smallest of things. What is worse I have very major emotional swings. Talked to a therapist over the phone that works for the insurance company. That did not go well. She focused on if I am suicidal. If I was, I simply would stop the Lupron shots. Started Zytiga on top of Lupron about two weeks ago. Now every night I am having very weird dreams (not always bad dreams, just weird). Thinking about the dreams during the day is making the other symptoms just that much worce.
Oh well....
• in reply toDr_WHO
I'm with ya! It's a roller coaster to be stripped of your hormones..Most men don't function well , including me..What a party..Take care Dr.!
If you are taking the Zytiga with the prescribed Prednisone (or a similar corticosteroid drug), that could be the cause of the weird dreams and thoughts. It is a common side effect. (Some have suggested perhaps taking it in the morning to lessen such sleep-related effects.)
I'm off the Lupron, but I still see blood in my urine and stool. Does that seem normal?
Consult with a urologist and oncologist for this. It's an important issue. Not sure it is related to Lupron but any blood in urine or stool is a definite followup.
• in reply topcb17
Does not seem normal at all!
I had the same experience with Lupron. In addition to being over-emotional I definitely found my brain functions slowing down and becoming very forgetful (wouldn't remember what I had for breakfast!) and so on.
I switched to Firmagon (Degarelix) and found that to help quite a bit. Even though I have a lot of pain (injection site) for a couple of days I still prefer it to Lupron.
Best wishes
Terje
Try the antidepressant. My husband finally decided he needed this and it made a HUGE difference! He had to try two. The first one just didn't sit well (this is a typical thing with anti-depressants). He is now taking Lexapro at a low dose. He feels much better and I feel a LOT better. He is just more even, more resilient in dealing with things, much less swing on the moods, not taking anger out on me as much. The prostate drugs cause a male version of menopause, which includes a strong emotional component. (Ask any woman who's endured menopause.) I would urge you to at least try some medication for depression (and try another one if the first one doesn't fit right), for your own sake (so that you can care) and also for the sake of anyone close to you.
I was so happy (ok, I almost fell over) when my husband said he wanted to get a psychiatrist referral to try some antidepressant treatment. (I was thinking this really hard but not telling him to do it.) And the results have been really good. He's not any different, just able to "roll with things" and not get overwrought about things (little things), able to let go, has some more empathy for me, doesn't get as angry (a depression symptom), enjoying life more. BTW - his situation is quite similar to yours -- dx at age 52, stage 4, distant mets (no surgery for him), did chemo early (CHAARTED protocol), ran through Casodex pretty quickly, now on Lupron and Xtandi for testerone blocking. Also did Xofigo and Provenge. Great that you are in a study that is working physically. So try to get some help so you can enjoy this benefit more.
What is the study you are in?
Best wishes.
• in reply toCaring7
Thank you. we are debating anti-depressants or not.Glad that you had good results.
To all who posted about emotional states on these drugs. Thank you!!!
I posted a reply to help others but got some myself. The descriptions here match what my husband was doing (lashing out , uneven mood, etc.) so reading these posts helped me feel not alone and reassured my perceptions. It's hard as the partner bec one is not going through this but one is also the closest target and when it's persistent and bad I start thinking that maybe I am a bad person who is torturing my husband by my mere presence.
This thread will help remind me - it's not me. Thanks everyone!!
• in reply toCaring7
Innocent bystanders = it is not you. Why do we take it out on those that we love ?Dont know, but pray for you and all of our families that witness the weirdness of APC's harshness.
In my mind we all need to give all of our caregivers a big hug. They have an unbelievable hard job. I just wish that more caregivers post their concerns so that the group could help with the burden.
Please know that we are all there for you. It is a fact that the burden on family and caregivers goes well beyond the physical needs. Unfortunately it also covers the emotional. For me the since of frustration, fear and anger I feel is made a hundred times worce do to Lupron and similar drugs. To be honest, I do not know how the caregivers do it. I am so thankful that I have the cancer and not my wife. I am not strong enough to be a caregiver.
At National Cancer Center/National Institute of Health, Bethesda, MD. The study includes enzalutamide (Xtandi) and an ongoing series of live virus immunotherapy injections. Also, still on Lupron. I'm not sure if the study is still open, but I believe if you're already on enzalutamide then you're not eligible, but not sure. Best to call NIH and/or visit their website. not sure where you're from but some of their studies are available only there, and some at NIH approved facilities.
Thanks. We heard something like this might be evolving so do well for future patients! We will be sure to at least ask about this. We work with a research oncologist in San Francisco so he will be aware of the possibilities but good to know some of the details for when we talk to him.
Good luck!
Hot flashes have been controlled with Effexor XL 37.5 to 75 mg once daily.
I tried Gabapentin titated up to 300 mg once daily but not as good and I stopped when I got swelling to one leg that was not due to a DVT.
Well I have been going thrum this going on 13 years now. I'm 63. Last five state 4 bone cancer. Yea we have emotional swings. I cry at the movies and just out of the blue. Just is part of who we are now. Motivation is just you make your self do stuff. Join a gym and go. Take the dog for a walk. Work around the house doing small chores. Right now I'm painting the inside of my house. Very slowly but it is getting done. Staying active I very important. I think that is the real key and it helps me with my emotional swings. I also take anxiety medication, lorazepam helps the most. 2 mg twice a day works for me. Best of luck to you.
• in reply toRexwayne
Good attitude!
Hi, I understand how you feel, please keep fighting, my husband just turn 62 end of May and was diagnosed with PC malignant neoplasms 2013- any ways he was using Lupron, he was in this Meds for about 2 yrs, but as you he could not deal with the side effects mood changes, hot flashes after a talk with the Dr he decide to change it to Zolodex he's. Also taking Xtandi, just in March he was diagnosed with stage IV mets in the lungs, the only issue with zolodex is just from time to time he sweats, but no hot flashes, and not other side effects, taking both medicines his PSA .14 and TTRNE is a 40. Hope this help you,
I'm in a simalar state of being as you and I understand completely how you feel..
After reading these my only advice is to get an orchiectomy. I'm a little light downstairs but have bypassed all the Lupron side effects mentioned. (no one knows unless you take your britches down or your wife tells them!)
• in reply toBobChanin
I also chose orchiectomy..This is an option that made sense for me..Not putting any more pharmaceuticals in me then absolutely nessasary is a better way for me. .I understand that for many this is a taboo subject. Faced with an ugly diagnosis we all make hard choices to extend our quality of life for as long as possible. With APC the male ego in some ways must go by the wayside..in order to survive we have many other ways to self identify besides our sexually ID. Pride,self indulgence , ego all Must die to live with APC. There are many positive attributes in our feminine side..Compassion and love are the top two ,in my book.Good luck with your journey and thank you for your honesty,,
I have been on Cymbalta for the 18 years for depression and bone pain .I have been living with Pca and on Lupron continuously as well all that time. I have been on Xtandi now for 3 years at a 1/2 dose. Without the anti-depressant I don't think I would be here. Get exercise as well whatever it takes. Last night I watched Johnathan Winter's clips and Robin Williams for about 90 minutes my facial cheeks hurt and my ribs were sore but Boy did I have a good time!
My Solution: Orchiectomy. . . . I had many of the symptoms you have with mets all over and over 4 years post diagnosis. Your situation sounds like "what have you got to loose?" My wife of 41 years was very encouraging and I understand younger men and their wives are hesitant. Thought I would share as this has been a positive experience for us. Good luck.
BobChanin
I don't understand how that would make a difference. I thought the symptoms were from the lack of hormones.
• in reply toBobChanin
A choice that we've made that most men fear immeasurably..We chose life over ego ..Bless you and your wife!!!
I had hot flashes from hell for over a year until I found this solution: estradiol and progesterone. Estradiol by itself did not work for me. I am using transdermal creams in the evening. Hot flashes disappeared. Changed my life. The products I use are Estrogel in 32 dose container, and Now brand natural progesterone cream, available over the counter. This has been a miracle for me.
Hi Joel, the hot flashes are annoying, but I figure it's a small price to pay. I seem to get hot flashes when i have the urge to urinate. I don't want to take another med. I've tried black cohash, it did nothing. Now for mood swings, I take Vitamin B12 and B6. This combo really seems to be beneficial fot me. It's cheap enough to try for a month. God bless. Richard
The same for me always gotta pee hot flash that my formula also.
Any cbd’s Tout many benifits. I’ve taken them for 3yrs. I also done strength thx oil for the same time. Anything that helps...
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