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.
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.
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.
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