Is there a patient-medic in the house??
I think I’m suffering from a form of dementia called “Lupron Brain.” This is a kind of mental fog that some men on hormone therapy complain about. I thought women were immune, but I guess I was wrong. I recognize the symptoms.
Here are some actual quotes from men suffering from “Lupron Brain”:
* I can’t concentrate
* I can’t multitask
* I’ve lost my organizational ability
* I’ve lost my creative ability
* My short-term memory is impaired
* I lost my car keys
* I don’t remember where I parked the car
* I have forgotten how to drive a car
The medical profession, as usual, lags behind the patient community. They have yet to recognize “Lupron’s” as a legitimate illness. So I have to turn to a patient-advocate named Ralph (pcainz.org) for a possible explanation. *Note, I am not endorsing this theory, I know nothing about the subject.*
“Some experts believe that a decline in hormone concentrations (both in men and women) might cause alterations in brain neurotransmitters, etc.”
So there: Women get “Lupron Brain,” too. I’m not yet menopausal, but maybe the hormones are starting to peter out and are messing with my neurotransmitters.
“Neurotransmitters” are the “messengers” of the brain, as any self-respecting person who’s ever taken Prozac ought to know. So if taking Lupron “alters” them, it’s not hard to see how there could be cognitive problems. To put it simply, your mail isn’t being delivered. Or it’s being delivered to the wrong address. So it’s not all in the head.
Or is it?
May insightful posters have noted that “Lupron Brain” mimics other common syndromes such as anxiety and depression, which are not uncommon in the PC community. So it’s important for any guy who is not feeling like himself mentally (or his partner) to get a good psychiatric evaluation to rule out other causes.
I was reading a post in a PC newsgroup yesterday by a friend who who has advanced disease and was feeling very down. I was impressed with the sentiment in the responses, but was also gratified to see that men are talking to other men about their psychotherapy and psychotropic medications.
So, maybe one more thing has come out of the closet.
If you want to know my gut feeling — I think “Lupron Brain” is real, but that it coexists with depression and anxiety, and it’s hard to tell which is causing the problem.
Either way, ask your doctors. There are things that can be done, if not to cure the problem, than to alleviate the symptoms.
Take care.
I am a 56 year old male with Prostate Cancer and have been on Lupron for
three years. I have have all the symptoms you write about. I have seen it
written that it is similiar to depression and anxiety, common with PC.
I do not believe I am depressed. I have a great faith in a Higher Power and have
had a wonderful journey in the world of cancer. No, I am not glad I have it.
The Lupron has kept me alive and for that I am grateful. I just have to say
the side effects are more than led to believe: loss of muscle mass, extended
belly, sleep disorder, breast growth, hot flashes (which were cured by
accupuncture) and Lupron Brain. It is real!!
i’m on lupron for endometriosis and i feel like i’m losing my damn mind. i’m so glad you gave it a term i can use!
My husband has been on Lupron for four years for PC and he is not the man I married. He definitely has “Lupron brain” is very aggressive and not himself. Has anyone else experienced violent dreams with this medication? His doctor does not agree that Lupron has caused any of these effects.
It’s a relief to find that I’m not imagining or exaggerating the Lupron side effects! I’m living post radiation prostate cancer with lupron, suggested for 3 years. HELP! Has anyone found healthy ways to deal with the mental issues and the fatique? Coffee and sugar are obviously not what my body needs.
Any suggestions or directions, website etc would be greatly appreciated. Doctors totally minimize or brush of the side effects like they are nothing!
Blessings from Hawai’i island.
To Poster Barry:
How often did you receive acupuncture?
My husband, a retired Bank CEO (twice) and CFO who turned his banks and restaurants from “Red” to “Black,” had extremely well organized files regarding banking, bills, etc. dating to approximately 3 months after beginning Lupron injections for prostate cancer. From this time on his files became “suddenly” disorganized . . . . phone bills, TV, water bills, etc mixed together and out of date order. Also, he began increasingly to “forget” things, events, etc. Said “never happened.” Also, he began to slump as never before, leg and upper arm muscles deteriorated rapidly, put fat on mid-section.
I wrote describing all this to his urologist, and asked for mitigation, a balanced treatment. He sent me a cursory 1 sentence note to the effect I didn’t know anything about it.
Only after an accident clearly caused by cognitive disfunction, did the urologist begin testosterone injections. Husband began to improve immediately, but the progress is up and down.
Does anyone have any positive experience with effective reversal of Lupron effects?
These posts are very concerning. My Husband has been on Lupron for 2 yrs and also received 44 radiation treatments during that time. He received his last injection in December and is still experiencing all of the side effects you are talking about. His muscles are very weak and painful and the fatique has not subsided at all and has “Lupron brain”.
What concerns me is nobody has any answers or suggestions. How long will the side effects last? Are they reversible?
Did the acupuncture only help the hotflashs?
Any help would be greatly appreciated.
Dear Susan,
I’m sorry that you and your husband are in this difficult situation. I would suggest that you ask these questions of my colleague, Joel Nowak, who writes the advanced cancer blog for Malecare (advancedcancerblog.net). He also runs an online support group for advanced PC. You can e-mail Joel @ Joel@malecare.com.
I wish you the best.
Leah
I started on Lucrin Mar 2007. We were informed at the start that weight gain and muscle loss would probably be a side effect. The staff at the hospital administering my case were wonderful and the Oncolgist advised at the beginning to seek out a good pysche straight away. His nurse also advised my wife to accompany me on those visits as it could be a rough time on her.
The cancer has reappeared and I am back on hormone treatment. I don’t handle the side effects well and “melt downs” occur.
I participated in a gym exercise program for research and that is the best thing I have done. I have been going to the gym twice a week under supervison with big weghts for 15 months and my muscle content (measured) has remained constant and my strength has been maintained.
I play gof twice a week.
The biggest plus is that the endorphins produced by the exercise are mood changing for the better.
Hi Guys i am a new kid on the block. Surgey
what tragic stories. for men 65 and over, scientific research indicates few if any lives are saved by prostate cancer surgery or radiation. prostate cancer treatment harms a substantial number of men and provides no life saving benefit. for the truly unfortunate men with cancer that’s incurable, measures like lupron with horrific side effects seem to be the only approach medicine has to offer. my heart goes out to all the guys suffering from either the side effects of treatment or side effects of the medicines used to prolong life.
I am not aware of any memory side effects from the two Lupron shots I received but maybe I forgot? I went through Proton Therapy for my Prostate Cancer and it worked. Unfortunately, the doctors recommended a Lupron shot to shrink my prostate. My last test results were; PSA “<.1" and Testerone "0". Although I'm 66 years old and a widower of 10 years I still had an active sex life. Not anymore. My side effects from Lupron are: hot flashes, a lot of weight gain, mini boobs, chest pain on occasion, easily fatigued and the worst part… turning into a woman. Everything down there has shrunk to practically nothing and is only for urination. In my mind I want what I had before, sexually, but no matter what happens there is no such thing as arousal. In general, life for me has stopped and if any one tells me I need another shot… forget it. I don't care anymore. I would rather die and be with my wife than go through life this way.
I’ve had all the symptoms too. I had pencil beam proton therapy for prostate cancer. It is four months since my last – truly my last – Lupron shot. I had 6 regular injections as part of my treatment, with the last one August 8. The side effects are just now starting to go. I actually had two full days with a single hot flash! I’m believing the side effects are temporary. And yes, Lupron Brain is a good name for it. I’ve used the excuse for every “brain fade” I’ve had in the past year.
very good explanation at all, with a discussion that talks directly to the core, this is very inspiring to me.
Hello to All the Brave Warriors on this site!
My husband made the (brave) decision to end his Lupron treatment. Last June was his final injection. We shared his (our) decision with the Team Inspire website and were amazed by all the comments. So many people were intrigued by Rommie’s decision. It wasn’t made overnight, as everyone knows those side effects have taken a huge toll on his body. We are not advocating this decision for anyone else, this is ours, alone. I have to say, just watching my husband smile again, and regain his desires for everything, not just intimacy, but playing his guitar, laughing and feeling part of life again, is priceless. As a spouse, it is wonderful. There is hope in his treatment, and for now it’s diet, and exercise. Frankly, we just want to be together, enjoy life and hold one another for as long as we have. The thought of him living such a sub standard life, with such gross side effects, just to keep his T levels lower, was such a contradiction for being free from cancer, when all along the treatments keep you less healthy. He did 42 treatments of radiation and Lupron. If the radiation didn’t do enough to be worried over, lupron just about wore him down completely. Immune system impaired and isn’t that what a cancer patient needs to fight this darn thing? Anemia, foggy thinking, disorientation, growing breasts, lack of sexual desire, loss of muscle, osteoporosis, threat of stroke, heart attack, increased cholesterol, visual disturbances, severe fatigue and depression. One night Rommie held me and asked: Am I selfish for wanting my life back? No, I told him, you are human and you have the right to question your treatments. Hormone therapy won’t cure prostate cancer, he is stage 3 Gleason 8. We were told he had an aggressive, growing cancer. So now what? We have new bicycles, he plays guitar with a new group of guys, we are trying to put together a Band of PC survivors, and we are sexual again. There is hope in his eyes again, and I love that look, something we have missed for a very long time. For however long we have together, I couldn’t be happier with where we are now. Tomorrow is a new day. God Bless you all and our thoughts and love go out to you too. Love Laurie and Rommie.
I feel like my husband and I are newbies at this, given his diagnosis was just two months ago. He had no symptoms other than a rising PSA. Finding out he has PCa was shock, though perhaps not altogether a total surprise; what was the real kick in the gut was being told he had a VERY high grade, aggressive type of PCa (Gleason 10, w/about 80% involvement). He was told he didn’t have the luxury of taking all the time he might want to decide on treatment.
Hubby is 72, and has many complicating conditions (COPD& diabetes among them). He’s decided on IMRT & hormone therapy. He just started the Caspdex and will get his first Lipton shot next week. I am worried about the side effects.
Does anyone have any figures on the percentage of men who suffer serious cognitive/emotional or other brain related side effects
Thanks!
I am thrilled that I found this site! My husband gained weight, seems to not remember things that I know he did know, and has extreme muscle weakness.
He needs to hold on to something to step up. We had to put some rails in our yard where the steps are. If he ends up on the floor, he cannot get up. With a chair and a huge effort, he can lift himself by leaning on the chair with his upper body.
He is grumpier to me than he has ever been. I felt that some stretching or exercise would at least maintain the muscle that he has, but he refuses, I am so sad that he is not even trying. He works hard and long as a physician everyday and takes overtime when it is available. His prostate cancer was outside the prostate. He was radiated at UCSF and had a series of Lupron shots. Shouldn’t we all be reporting these side effects to the FDA? The treatment ended about 4 years ago. How can we read about it if we don’t report it? Someone needs to research and study these affects. Please tell me if there are other sites that deal with this issue.
I’ve been on and off lupron for 11 years now. I get pretty sick for the 5 days after my 3 month shot…..I’m fatigued and use dexadrine, ritalin, espresso and 5 hr energy drinks to help the fatigue. I take very low dose effexor for the hot flashes (it cuts them to less than 1/2) I have gained weight and to try and work out is impossible…..I can walk the dog for a ways very slowly and that’s about it…..luckily I can still ride my Harley…..
After being on it for a long period you lose all your body hair…..gain weight and lose muscle…..get breasts……lose your mental abilities. (I had to retire from the tax business- I just couldn’t do the work any more)……and you have to watch the depression…..gratitude fights it best….
I’m now on Lupron and dexamethasone and my psa is steady at 40. down from 66 about 7 months ago. Originally it was 72 when I started this in 2001 with a gleason of 7. so 11 years and counting but sometimes it really really sucks.
Hello. I’m french. My father took Lupron (Enantone in french) for 1,5 years ! Very quickly, my father became strange, very tired, with a very white face. Before this, he used to make a lot of things, he was full of energy. And after one year of lupron’s treatment, he started to have Alzheimer disease. All the symptoms you discribed, my father had it. He was a very good cars driver, and stopped to drive after several months of Lupron’s treatment.
I am 77 years old and have been on lupron shots 5 years. I had a radical prostatectomy almost 12 years ago and a few months later had 34 radiation treatments. I did pretty good for almost 7 years and then my PSA began going up again. I began 3 month lupron injections for a year and then went a year without any.After the year I had to begin the shots again and now am getting 6 month injections. I have all the side effects mentioned. I exercise and brisk walk, watch my diet, but still gain weight easily and still have all the above mentioned side effects.
Because of the radiation I ended up with severe hematuria approximately 8 years after the treatments. After 4 ER visits I had 40 Hyperbaric Oxygen treatments. None of this was as bad as the side effects of the lupron shots. Are any of you on the 6 month shots? Are your side effects including lupron brain worse for a few weeks after the injection? Thanks.
diagnosed with prostate bone metastases two months ago and have been
on Casodex for six weeks. Had my first Lupron shot Monday and by
Saturday was up five pounds with no change in eating habits. Ocasional sweats mostly through my scalp, fatigue, soreness, but so far nothing else. I am worried about the weight gain as I am overweight to begin with. Any ideas?
O.F. from Corona
My 40 yr study in JNMA,v93,490-93 “Albumin Concentration Controls Cancer” and my NHF study “Understanding and Preventing Alzheimer’s” 2012 may answer the “Brain Fog” that surronds use of Lupron Depot. My findings uncovers that serum albumin levels often fall to less than 40g/L (4%) due to lupron depot and that leads to not enough purified super serum albumin in the CSF to clean the brain of the toxic wastes such as Amyloid and tau also maintains optimal mental potential. Remember that serum albumin is the “Life Factor” and levels higher than 47g/L are needed to clean and optimize the amazing computer we call the human brain. Hygiene more than diet controls serum albumin levels because it prevents infections, inflammation and stress. See “Breaking the Devil’s Circle” 1989.
Though my 13 yr. old son does not have PC, he was given Lupron for precocious puberty. His symptoms are identical to those described in this website. His injections were for 1.5 years and his side effects continue though they were given nearly three years ago. His depression is worsening as is his cognitive ability. What have we don in allowing our child to be given this drug?
Hi my name is warren I have been on Lupron since 2006 my Gleason score is a 9 in last 3 months zytiga has been added with the Lupron and it seems my mental capabilities have dwindle even farther . Memory is very bad to the point I cry with frustration .i can barely carry on a conversation then 10 minutes later can’t even remember what I was talikng about . My wife or someone will mention something that happened in the past and strain but can’t remeber sometimes I just pretend I do .also stay fatigued no energy also stay very emotional and cry a lot. We tried getting off Lupron one time but in 4 moths without the Lupron psa went from 4 to 22.5. God knows I don’t mean to complain and I am grateful for still being here after 12 yrs but sometimes I miss my old self so bad it makes me very depressed .and yes I do have all the other symptoms private parts almost nonexistent no sex drive at all aching bones
Headaches .But the main thing is I miss my mind going away in other words I miss my old self . Sorry for such a long letter God Bless Waren
Thank you all for your honest sharing. This has been one of the most helpful articles and comment set I have read since my diagnosis back in February. 44 sessions of Beam Radiation and now well into my 2nd Lupron shot 4 month shots… I have headaches and hot flashes galore. I am tired all the time and I have lost some of my coordination. I don’t know that I am unable to drive into or across town as much as it just plain hurts to do so, especially at night. Moving fast is just such a chore, I’d rather have my wife drive for me. Radiation made it hurt to facilitate all of my bathroom duties, but so far I still can. Yet the other night I was in a small group of maybe 20 guys and gals to talk about our experience and not one of them regretted Lupron. It kept them alive and close to their families. I thought as I listened that this was the reason we toughed it out when we were wimps and didn’t understand how important our marriage would be later on. To a man these men wanted to be with their wives if they had one and their children and one guy who was alone just wanted to be with us. We are by genetics social creatures and while we may suffer terribly from our treatment. I for one am willing to do so to be close to my family, my classmates (we are GI BRATS) My Extended family and my friends and neighbors. My Brat Brothers and Sisters keep reminding me to be tough. Well we are tough, We faced down the Russians with our parents and lived in both strange and hostile countries. We live in the most wonderful place on earth and through this Lupron Fog, we can even enjoy it in the midst of the pain. I have Diabetes (since I was 28) a crumbling spine, nerve damage from a,” whoops,” from an operation and Nerve damage from the diabetes. I have Diabetic Retinopathy. I have severe Asthma from my time in Europe during the 60’s and the cigarette smoke I breathed as a kid, in a house of chain smokers. Lupron is the pits, it hurst all the time, I can’t think or remember like I did just 6 months ago, but it seems to me if I can connect with those who care, if I try to find them, and I have been trying… I can catch the infection of hope around me. If I hug, I can be hugged, If I warn people that want to go to a ball game with me, that I am incredibly slooooooowwww. They seem to slow down for me. If I take a chance… sometimes people will take a chance on me. Yes, I am getting ugly and old and slow and fat and my bladder hurts so I don’t drink as much in public…(The days of rolling out the barrel have rolled right past means I didn’t even notice until it was too late.) Right now my doctors are trying to treat my whole body inflammation in hope of helping my heart and lunges… yet they are doing so for my benefit. They haven’t kicked me to the gutter as of yet. I remember when I was a child in Turkey and I saw children orphaned because the parents couldn’t carry their load… So they begged from the gutter… and yet they had hope. You folk give me hope because I am not alone.. We are by writing here, a part of a community. No ones mad the right decision or a wrong decision, we just made the best decision we could figure out at the time… So I salute you, my brothers in pain,.. Live long though you do suffer. You have made my life better today and I am grateful. Now… I came into this room for something and I can’t remember what it was…Oh, well..What was that…. I know it was important…. the fog has come again…. Sigh…
PC diagnosis 3/2014 , aggressive, Gleason 9
Radical prostatectomy, 35 radiation treatments, 26 months of lupron shots, all the usual sides I’ve read about. Osteoporosis, hot flashes, muscle/joint pain, sex drive flat zero, sleep issues, memory problems, breast growth, impotence and complete urinary incontinence from surgery. Had an artificial urinary sphincter implant after 2 years of 100% urinary incontinence. I could go on about brain fog, depression, anxiety and any number of woe is me declarations, but the truth is that I’ve had an incredible personal relationship with Jesus Christ for many years and His companionship, comfort, strength,love, grace, mercy, provision,have overshadowed these cancer related issues to the point that I had not had them on my radar until reading these testimonials. Yes this 70 year old body has been through it but I like what C.S. Lewis said. “You don’t have a soul, you are a soul, you have a body”. None of these bodies are forever. All of our souls are.
Jesus is still the answer to all these problems.
Give Him a try when you’re out of all your other options. Merry Christmas everyone. Wise men still seek Him,
This is an under the radar sort of website and that is good. Real people telling real stories. It is rare that you will see “Lupron Brain” in side effects lit, but it is the real deal. I have been taking Lupron for ten years for a rare form of metastatic pc along with other meds. I had to retire from my own company because I couldn’t do my job effectively. I became very efficient at moving files from one side of my desk to the other. Lupron side effects wear many faces but I can’t wait to get my injection every three months because it helps keep me alive. I have found that doing other things that do not require the mental acuity that I have lost is a partial remedy for any depression from Lupron Brain. Other helpful things are excercise, mediteranian diet, acupuncture, meditation and just plain having fun. It took me a long time to laugh at some of the goofy stuff I do instead of getting frustrated. Chin up!
It would be nice if everyone could give their age original PSA score and how many radiation treatments and how many Lupron shots.
I am 68 and was diagnosed in February 2018 with Stage II prostate cancer with a 14.1 PSA.
I did 45 radiation treatments and on my 4th and last 6 month Lupron treatment. My PSA for the last is is <0 or not detectable. My Dr said I have an 80% possibility of complete cure.
Hot flashes, terrible weakness, weight gain, joint issues. No mind or serious memory or mind issues. I can still do my CPA work.
I take Vitamin D3 25 mg or 1,000 units and 25 mg of magnesium for my muscles and bones.
I am hoping once this last 6 month shot wears out I will get my sexual functions back and no more hot flashes.
This is so sad for all who have posted. Let me add by saying there are thousands of women who have been destroyed by Lupron. It is also used for children with same kind of damage and results. I have been care taker of my daughter for 15years and can not begin to write here the damage to her body, damage to her reputation as a critical nurse of 20 years, her loss of a QH farm she established AND the horror this mother has lived with for 15 years. I have contacted all so call political representative for the people in my district of Georgia and can get no help let alone an answer. I was band from FDA when I sent a copy of a HHS report stating that Obama and Podesta were involved in upper management of FDA. go to web site written by women who got Lupron many years ago and wrote the truths about the long hidden events. The trials for the drug were done by a doctor who lost his license as he state 80% of information is falsified. The results are still sealed unlike many companies that, published their results. of medication..
I am a wife of an 83 year old who was diagnosed almost 2 years ago with Gleason 8, 3 out of 4 corres, and outside of the prostate. He has had 4 Lupron shots with the 5th scheduled for Feb. 2020. The Lupron shot plus 2 months on Xtandi (got off of that because he was sleeping all the time) reduced the tumor where he could have a channel turp surgery to just to be able to urniate.
Lupron Brain is a reality – it has taken over a once vibrant, young acting and looking to an old man. I am 10 years younger and still work in a professional position. I think of retiring but the office is the one place I do not have to think about home situation. I don’t have a husband anymore. I moved upstairs as far as sleeping is concerned. He says he has been castrated and we had an active sexual lfe. No one told us about the side effects of this drug.
We are not discussing stopping the Lupron shots. Only God knows our time, and if it sooner than later, at least we will be a couple again (or hope to be). Thank you for letting me share my experience of what it has been like to live with a man going through this horrible disease and it has only been a total of 3 years for me.
I meant to say “we are now” thinking of stopping the shots.