I haven't posted my prostate cancer bio here yet but I intend to in the future. I had a prostatectomy along with my seminal vesicles and the left side lymph nodes proximal to the prostate. Gleason 4+3 N0. The cancer had escaped the prostate which could only partial be removed since it was microscopic and only confirmed by a pathologist who reviewed sample slices of my prostate after surgery.
My PSA was about 7 when I went in. My prostate was swollen and every biopsy sample was very positive, in every quadrant which 3 samples from each.
My post is to tell about my history of depression and bipolarII since childhood. It has been a huge QOL issue for me and has always been on a 4-5 week cycle. Major depression for 3-4 weeks followed by a week (or so) of mania which provided some relieve from the overwhelming depression. I still was able to function and got a BS in Chem and an MBA and many job offers and rose to higher management and Fortune 100 consulting on systems and work procedures. I never thought I could do that and considered suicide throughout my life.
I don't think any of this was related to my prostate cancer which was found in 2019 and I was asymptomatic except for the common urination issues which I attributed to my age (69 at the time). I am now 71. I have been on a huge variety of meds since my depression either didn't respond to them or only a small bit. I am now on two that gave me the best relief.
I refused radiation and ADT after surgery because I was very concerned that my depression was caused for the most part in monthly fluctuations in my hormones, as women go through with monthly estrogen changes and mood changes. Since my depression was already at the max that I could tolerate I was worried at what reducing my testosterone would do to me and my depression.
I told my oncologist at every visit about it and how I felt about it. I have a strong interest and background in physiology, biochemistry, and mental health issues. I had a strong basis on which I based my concern. So I was on wait and see basis until my PSA finally rose to over 9. My oncologist, and my wife, finally got me to go for the Lupron.
I had the 3-month Lupron then and my PSA came down in the 0.1-0.3 range within the next 4 weeks. My depression went from manageable with difficulty to completely unmanageable and what I would call catastrophic. I could not get out of bed for 11 months with zero motivation and energy. My suicidal ideation went from often to constant, every day. My mania disappeared so I had no monthly relief from the depression. I went from constantly doing projects, like building a tiny house/shed from scratch with major aesthetic details. From my long history of this condition I know as much about depression as some of you know about prostate cancer details. Projects were my "relief" from the depression. As they were through out my life.
My concerns about the ADT proved to be totally correct. I was a waste of a human being with almost complete loss of QOL. I lost my physical strength and balance as well. I had to have 3 months of PT to regain my ability to walk very far. I have since found out that muscular/skeletal issues have also been seen in those with ADT. I am sure the low testosterone also contributed to that in addition to no exercise other than going to meals and the bathroom. It was during Covid for the most part so that could have contributed by losing outside human interactions as well. But it was the ADT that was the major cause of my major depression.
Two months after my shot and as the depression got worse and worse I kept my oncologist informed about my condition. He never really ever understood or felt worried about it. So I decided to stop the Lupron after the 3 month period and watched my PSA go back up to the 9 range, at which time he pressured me to restart it, along with my wife who was very concerned.
When I went in to (finally) get the next 3 month shot, the RN who was there at my shot appointment asked me how I had done with it. So I told her about it and she told the nurse aide to put the loaded syringe away. She said she would not administer the Lupron until she had informed my oncologist and have him approve the injection despite my complaint. They made me wait a couple of hours and then the urology cancer PA, and the NP, and finally my MD talked to me. The clinic (Seattle Cancer Care Alliance) have a psychiatric department since many cancer patients, obviously, have emotional issues with all the different types and stages of cancer there.
I met with one of the staff sociologists for an hour long interview. And then a half hour with the MD psychiatrist. They recommended that I get professional mental health treatment (which I already had ongoing before and during). They normally would have prescribed the standard meds and counseling. I have seen this is the "normal" response for prostate (and other) cancer patients who develop emotional issues. They told my oncologists that he should not give me another Luron injections for the time being.
My depression did not get better somewhat until 11 months later despite my slowIy increase in testosterone which is now in the "normal" range. I tracked everything in a personal "diary" so I can give the dates pretty accurately. My mania has never come back so I am no longer clinically Bipolar. And when I say my depression got better it still did not get as manageable as before. I still have little to no motivation any more. And very little interest in doing things.
Then my PSA started getting higher and higher and my doc pressured me to continue the ADT. I told him then and have continued to tell him I would rather die the very next day than go back to the depression I had. I didn't think I would survive it the next time. So back to wait and see. My PSA actually leveled out for 6 months which was not expected and then I got an acute, sharp pain in the top of my hip bone. He referred me for a bone scan and a CT with non-PSMA contrast. Nothing found in either.
Then he ordered a PSMA-PET/CT scan (18F contrast). It showed nine positive lymph nodes from moderate to mild, with three in my ilia area, three in my periaortic area, and the rest in the supraclavicular area. So I am now metastatic. And I can't tolerate any ADT meds, either Lupron or any of the newer hormone drugs. He said he didn't think any of the other treatments, such as PSMA radiation or immune approaches. He says they have basically shown to be not very effective. (I am sure there will be numerous comments from you all who believe that is not true.).
The mortality tables from research are most all done for patients who are on long term ADT or had long term prior. Since I won't be I suspect that my odds are less than the ranges given in these tables. My PC has not gone to my bones or other organs but it would be a miracle if that is not the next step. Then it would be palliative radiation and perhaps chemo.
I am not a basket case emotionally. I am at peace with this. I've lived an interesting and long life and am not going to travel the world looking for a therapy that might prolong my life an extra four months. Especially if it worsens my QOL.
My apologies for this huge post. My objective is to tell you all that, for some people, their mental health is directly associated with testosterone. I forcefully told my doc that any ADT prospects be screened for depression, and, if possible, given a short acting ADT before going for the longer shots. And, you should all know that the effects of the ADT may go over the given time range, e.g. 3 months. I.e. the half-life of the side effects can be very long indeed.
I do hope some other non-hormone successful therapies are developed. Ones that can actually extend lives with good QOL, and for more than a small handful of months.
I reserve the right to be wrong about specific dates and blood levels. It is all substantially correct but I don't have my detailed, more accurate, notes with me. I can give those should anyone insist.
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They can do whole Pelvic radiation without the ADT. It just works better with it but that doesn't mean you have to do it. Some people get many years of relief from just radiation.
I'm a year out from radiation like that and I didn't find it to be any big deal but the Lupron, yes, that does cause problems.
Thanks for your story. Initially I was turned off by the strong feeling that I was being sold on the radiation by a “used car” salesman. (Apologies to any car salesmen on here. I have worked with numerous honest and reputable car salespersons.). It was a high pressure “sell”. I also was put off in that they did not offer radiation alone saying that it would not work alone. They also said that one reason for that was the large extent of the cancer outside of my prostate involving the seminal vesicles and proximal lymph nodes. Plus, that my PSA was at the limit at which radiation would be successful.
I wanted to get a second opinion about both the radiation and ADT. I got the second option from the chief of the urology radiation department at the University of Washington medical school and hospital. He concurred about that to irradiate the entire pelvic floor would entail a much higher risk of potentially serious damage to surrounding tissues, e.g. large and small intestines, bladder and bladder neck, fascia in the whole area.
Your experience was wonderful. It would have been nice if I had been a better candidate for radiation. I made a personal decision that it was not right for me, completely understanding how well it works to delay progression and even possibly providing a complete cure.
While I appreciate your thoughts and experience, everyone of us have different bodies and different conditions. I have seen, and heard, many, many suggestions that “if only” I had done XYZ, I would have had the same outcomes as you had. I spent weeks diving into the scientific and medical literature, both at the lay and professional levels. I made what I thought was a very informed decision. My oncologist from the prestigious SCCA concurred. Actually, the one suggestion that I undergo ADT by him despite my “informed” concern that ADT was the way to go. That was the real disaster for me (personally) when I listened to him and started the Lupron, also knowing how well it works for the majority of those with PC.
My mother suffered from depression for which she was once hospitalized. It was awful and we all felt so helpless. Thank God, they finally found some meds that worked for her. I wish you were as fortunate. I think I read that about 30% of intractable bipolars commit suicide, so I understand the dangerous nature of your illness.
You mentioned SCCA. One of their oncologists is Michael Schweizer. He was one of the original researchers at Johns Hopkins who explored Bipolar Androgen Therapy (different "bipolar"... or maybe not). The therapy consists of ADT followed by monthly supraphysiological doses of testosterone. It may bring back your hypomanic episodes once a month at least. It may also allow for improved results from radiotherapy, thus extending survival. It may be worth a consultation.
Wow! Dr. Schweizer is my oncologist. I hit him up every single visit over two+ years about my concern about my bipolar disease and he never once mentioned that he was on a team studying alternating ADTwith supplemental testosterone. It had actually occurred to me that might be a workable protocol. I have a lot of respect for him. I will ask him about it in August at my next session. After what happened to me with the crippling depression I expressed multiple times how I wished I had never did ADT. At my last session (three weeks ago) I strongly suggested that he start anyone with a history of depression, unipolar or bipolar, on a short term ADT. He stated that until very recently no short term med was available. He stated the name of the one med but I don’t remember what it was. I will look that up. It’s proprietary name started with an “R”.
It's Orgovyx (relugolix). It's a pill one takes everyday and is completely out of your system in days, and testosterone returns quickly. However, for BAT to work, I think you need a shot to shut off your own endogenous testosterone production. You get an exogenous shot once a month to get to a supraphysiological level. When it wears off in a couple of weeks, you are back down to no testosterone in your system. Then, 2 weeks later, you get another shot of T and the cycle continues. That's what makes it "bipolar."
I'd be very interested in hearing his response to your suggestion. He may want a psychiatrist closely monitoring you, which seems prudent. I've heard great things about him.
I just looked up the research that you mentioned done, in part, by Schweizer. The term "bipolar" in the paper refers to the type of hormone therapy done, i.e. the use to two different meds at the same time. I can only look at a limited abstract and I cannot fine the "Patients Guide" to the therapy so I didn't find anymore details. I will ask my doc next time. This would fit right in to his recommendations, with my concurral, on not pursuing single or bipolar hormone therapy. I am sure it would slow the cancer down but I won't do it at the cost of the depression it gave me.
I read your detailed post with utmost interest and would like to share what I think . First of all, People with Bipolar disorder are generally higher than average intelligence and accomplish great success in occupations provided they are on proper medical treatment for Bipolar disorder. I have met Doctors, Scientists, Accountants, Businessmen, Nurses who performed fine in life in spite of having Bipolar disorder. To be truthful, Once Bipolar disorder is correctly diagnosed, it is a life long condition. In younger years, the cycles of mania and depression come at regular intervals but in later years manic episodes become less frequent and less intense. Depressive episodes become deeper and longer. But the treatment remains the same..i.e. a mood stabilizer med along with an anti depressant med.There is no connection between Bipolar disorder and presence of prostate cancer other than that the extra stress of this scary diagnosis can bring more depressive episodes .
So bottomline is that Bipolar disorder MUST be treated with right meds...PCa or No Pca !
Coming to testosterone and depression...yes there is a connection ..and that is that low T can make you vulnerable to worse depression episodes.
Choosing carefully the right treatment is complicated in your situation. Remember, the androgen receptor meds such as Bicalutamide, Enzalutamide and others control cancer cell growth WITHOUT lowering testosterone. So, at least starting with Anti Androgen meds can be good start and then. you possibly can add lower dose of lupron type meds or use them intermittently...Something to discuss with your Doctor.
Once again, perfect medical treatment of Bipolar disorder is utmost important and add on Cognitive behavioral therapy can be icing on the cake. Your condition is like a man walking on tightrope and balancing Bipolar disorder and Prostate Cancer.. and that is not an easy task.
Samnabe56, you are spot on in describing my experience with Bipolar and the progression to less mania. I currently am taking bupropion and lamotrigine, just as you mentioned. They only provide minimal help but far better than other better known SSRI’s, tricyclics, and other. I tried them all. And, you described my personal experience of being very successful in every thing I have decided to do. While I don’t agree all my friends say I am very, very intelligent. I have always been goal-driven. You should see the wall full of degrees and professional certificates. What really made my Lupron depression so bad is that I could no longer do projects and learn new subjects.
But right now I am studying a graduate level textbook on Biochemistry. I have learned a lot about how cells function in exquisite details. Including, specifically how testosterone causes a cascade of biochemical reactions, including turning on specific genes to create specific RNA molecules that cause the mitochondria to produce proteins that regulate cell growth and the uptake of testosterone at the cell membrane. When the wrong genes are turned on or any of the dozens of regulated proteins and enzymes, cancer can result.
Cancer cells can become castration resistant when the whole process is activated internally and doesn’t require testosterone. This happens much the same way as viruses mutate to resist vaccines, such as Covid. What specifically causes depression is not really understood at the cellular level. The concern about using the new classes of castration resistant meds is that they will screw up the cell processes internally that may actually lead to depression. Dr. Schweizer specifically ruled out trying these meds. He may know more about this whole process than I am aware of.
Thanks for letting me know about his previous work. I will be looking that up later today and quiz him about it next time. Znow I am experiencing my first big help from joining your group!
Agree with others here that the depression and PCa both have to be treated. Prostate cancer is more treatable at stage 4 than many other cancers, only because it's hormone sensitive. Without hormone suppression, the options become limited.
Although it's not SOC, androgen blockers such as Bicalutamide or the much stronger Enzalutamide have been used as monotherapy as LearnAll pointed out. Bicalutamide would have to be used with more caution since it can eventually feed the cancer. Both these drugs do not lower testosterone like primary ADT does.
Bipolar condition is tough to deal with even without complicating factors such as PCa. My mother had it, and was on lithium for years until she developed an arrhythmia and had a nervous breakdown. But what changed her life and allowed her to live normally into her 80’s was a magical drug— Depakote. I think there are even better drugs now, but if you can find the right one, it makes all the difference. Also, worth exploring are less offensive forms of ADT, like Casodex, or try time-dosing Lupron to lower the serum concentration and keep your T around 20 ng/ml or below. I took monthly Lupron shots at six week intervals and effectively kept T below 12. There’s no way around it— Lupron is like a lead blanket— mentally and physically— but try that and exercise a lot and see if it helps.
One thing that was immediately noticeable when I took Lupron was how immediate the depression came on and crushed me. One of the things I have wondered about is how the actual time-released dosage works. I was on lithium about 8 months and it provided no help. I have been through seven psych docs so far and none have suggested Depacote.
I just finished a Transcranial Magnetic Stimulaton therapy. I noticed a distinct lessening in my depression. It is a pain to go through 35 daily sessions. And then my older brother died and I was declared metastatic. This certainly challenged my depression but I think the TMS was helpful. It is not a snake oil therapy. FDA approved with a very high documented success rate. Not cheap though so insurance helps.
The first three days after a Lupron shot were the worst for me-- felt like an anvil was dropped on my head. I looked at the serum concentrations for 1- and 3-month doses, and the one-month was significantly lower.
LUPRON DEPOT 7.5 mg for 1-Month Administration
Following a single injection of LUPRON DEPOT 7.5 mg for 1-month administration to patients, mean plasma measured concentrations were 20 ng/mL at 4 hours and 0.36 ng/mL at 4 weeks. However, intact leuprolide and an inactive major metabolite could not be distinguished by the assay which was employed in the study.
LUPRON DEPOT 22.5 mg for 3-Month Administration
Following a single injection of LUPRON DEPOT 22.5 mg for 3-month administration in patients, mean peak plasma concentrations were 48.9 ng/mL at 4 hours and then declined to 0.67 ng/mL at 12 weeks. Leuprolide appeared to be released at a constant rate following the onset of steady-state concentrations during the third week after dosing, providing steady plasma concentrations through the 12-week dosing interval. However, intact leuprolide and an inactive major metabolite could not be distinguished by the assay which was employed in the study. The initial burst, followed by a decline to a steady-state concentration, was similar to the release pattern seen with the monthly formulation.
Depakote may be considered an older drug now, possibly replaced by the following:
I was never prescribed Depakote nor do I remember discussing it with any of the docs I have seen. One reason is that I had Hepatitis C for many years (now completely cured with no virus) and it damaged my liver pretty much. I see from the drug notes that that is a big contraindication for Depakote.
Both my Mom and my Dad suffered from terrible depression and each died at a very early age because of it. To this day, I get upset when any friend or relative mentions being depressed. You have gotten some very good suggestions and I hope you will search for a solution, or at least a partial solution. I'm no expert but I would think BAT would be something to explore. I know, depression is devastating. All the best to you, my friend.
Thank you for sharing your painful journey. Life is NOT about quantity…it is for sure quality. Perhaps your docs don’t see this and your wife loves you so much, she doesn’t want to lose you. I have seen sickness, mental health issues and suicide in a loved one…trust me, guard your mental health before anything else. Best of luck to you. Amy
I experienced severe depression as well, though yours sounds more profound.
I'm amazed that any doctor or Earth would encourage you to go back on Lupron knowing what it did to you the first time. My MO wasn't a very sympathetic guy, but when I told him I was quitting halfway through because I desperately wanted to blow my brains out, he backed down immediately. Now, my clinical condition wasn't as severe as yours, but all I can say is WOW and leave it at that.
Eventually a psychiatrist prescribed an anti-depressant (Viibryd) that worked very well for me. I later got a DNA test, and it turns out that Viibryd was one of 3 out of a total of 25+ that would have been effective given my genetic make-up. I.e., we simply got lucky.
If my PSA continues to rise, I'm going to use high-dose transdermal estradiol (tE2) as ADT. It's believed that the horrific SEs that some people experience derive from low E, not low T. It's not SoC in the U.S., not that I could possibly give a s***, given my initial experience.
I'm told that some people in your position choose to move directly to chemo (docetaxel), but tE2 sounds far better.
Thanks for sharing. I will follow up about the other treatments for depression. This may sound very weird and perhaps self-destructive but I am getting fatalistic about how much energy I want to put in to new mental health therapies. I am pretty pessimistic about finding a new one, especially since you usually have to stop your current meds to try new ones. I can very well understand how Estradiol might be useful to treat PC though. Worth exploring.
I agree with you 100% regarding using tE2. I've been using it for over 4 years now with zero depression, mood swings, bone density loss, and I'm still doing pretty well for a 79 year old buzzard in the gym. I've also installed a chin-up bar on my balcony and do 16 to 18 bicep chin-ups, and 16 to 18 tricep chin-ups (my palms facing away from me with my arms about two feet apart) every day. Prior to starting applying the E2 gel I had one Lupron jab which was absolutely devastating! I would rather let my PCa take its course than to get another Lupron shot.
Even though my PSAs are still undetectable, my T for the last year has been well above castrate level...(57, 231, 341). I don't know why since I apply the E2 gel daily?
Hello maggiedrum! This is an open and honest talk about how some of us are wiped out emotionally by adt! I was myself leveled by it over 7 yrs ago . I was suicidal and went to the cancer shrink . He told me Kalonapin for two weeks then lexipro for a month , then and only then , we can talk . I tossed the scripts . We didnt want any more big pharma on my plate . I started Sam- e and it helped energy and lethargy a lot . Ive been on adt over 7 yrs with 3. T.. This is a problem . In every way for a man .But No signs of pc is a good thing . It’s all about trade offs . I hope that you can find some relief from depression? I feel that most men don’t talk about It much! 1/2 of pc for me is trying to keep myself out of the dark moods … Good luck to you Sir!
Thanks for your thoughts Lulu. I think all therapies are about tradeoffs but especially with all the "typical" cancer therapies, whether PC or others. Some of them may seem catastrophic. My depression felt that way. I'm a believer in modern medicine overall. But I don't think the way that drug companies and many doctors act is in the best interests of their patients. I could, but I won't, say that many doctors are in it for the money, or just looking for easy out therapies. I am disheartened by what I have experienced, and am now seeing from so many others that they have been too. Evidently a LOT of doctors don't really prepare their patients for the true issues with immediate or down the road side effects and odds of benefits versus those side effects. I'm still thinking it through. I certainly don't believe everything I read or hear from the drug manufacturers. And, it is exceedingly hard to get the info you really want to get. I can't believe the amount of time I have spent just trying to get the most basic, and most important, info about ADT.
They treat us and it’s up to us to deal with the fallout afterwards. If we are so lucky? More than half of us are on mood med and or pain meds. Luckily I’m on neither. I use sam— , and many nutrients. I’ve taken Homemade high thc oil daily seven years .. i smoke on occasion some strong indica. I think you each man admitting depression there are many in the closet. Men don’t talk of this much. When I was livid with suicidal ideations I didn’t share it then . Embarrassing we they feel. Stay up amigo. Fighting self is now a waste of limited energy for me.. My depression was self loathing blame turned into frustration . Now I accept my lot , my weakness and my limited affairs . I’m into nature and hiking and a simple life now . A small income and poverty have taught me much. I’m not complaining. I have a roof and food .. God Bless you Sir! Enjoy your day!! We just keep chipping at life. 🤙🏽😎🙏
Have you explored counseling options for your condition, in addition to meds? My depression benefited from such counseling and I'm glad I pursued that. I'm not bipolar so my condition was not as serious as yours.
I've tried counseling for years. I don't think, for me personally, it was helpful enough to continue. I do try to incorporate some of the approaches I did learn in to my everyday life.
Hi ! For me the psychology the moods and bad emotions rocked me negatively for three solid yrs . I can relate to any man in this boat . “ The beatings will continue until morale improves” this was a pirate saying but it applies to us all now . This is a fight for survival against a silent internal beast that can hide for years if one is lucky enough . Some men don’t make it past the first round . Men in their forties . This is madness and a crying shame .. Heal yourself and pluck each day brother. In This first round you can put it down . Put that pc to sleep for many years!🙏✌️
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