No SOC treatment. Metastatic lymph nodes by PSMA-PET. Rising PSA. Bone/CT scans neg. Waiting to die.

[maggiedrum]

The title may seem over-dramatic. It does, however, present the present state of my PCa. I have written more than once about being Lupron ADT sensitive but stopped after first shot due to severe intolerable increase in depression.

I am not eligible (SOC) for other therapies because they all require (by my oncologist, FDA, insurance) castration-resistance. My doc says he will prescribe chemo if I choose, which I think I will not. I had a radical prostatectomy early but not radiation or ADT. I worried about the side effects of ADT in particular, which turned out to be warranted.

I had my third bone scan and a new CT scan two weeks ago. Both unremarkable with no cancer identified. A previous PSMA-PET/CT scan showed lymph node involvement (minor to moderate) from my neck to my pelvis. Not eligible for radiation because of multiple/scattered mets. Not eligible for any known trials due to ADT status and excessive number of mets.

My doc said this week that all he can suggest is that we continue to monitor my rising PSA (5.2 month doubling), currently 16.5 and to have every 3 month bone/CT scans. No PSMA-PET scans which I have requested. He says that all that is necessary is to watch PSA rise and wait for mets to show in bone and/or CT scans. He expects that to happen by summer if not sooner.

He says that I can still opt for chemo at any time. Radiation for large and/or painful bone mets. Radiation or surgery not recommended for any tissue tumors or hot spots.

I would like to get another or multiple new PSMA-PET scans just to see how the cancer is progressing in addition to the bone and CT scans. Not knowing more is causing some anxiety.

I view this as waiting to die. I am going through the checklist of preparing for not being here for my wife - financial, cremation, powers of attorney to make medical decisions if I am incapable, power of attorney for all other issues, and may be a will (except for my spouse getting everything if I go anyway). We have major assets as joint ownership with survivorship. A checklist for her to identify urgent or need to do acts such as notify Social Security, banks, driver license agency, etc. etc.

I am monitoring this site and trying to follow any new research, trial, or other information on new treatments that I might qualify for and which may potentially be helpful. To tell you the truth I am a bit fatigued in trying to do the research that I used to routinely do. I'm not afraid of dying per se but there are things I would like to do with my wife or just undone on my bucket list.

One particularly unhelpful item that occurred early in this year: I decided I would change docs but stay with the well-respected cancer care center. The new doc was given my records and talked with my current doc, and she said she would only agree to take me if I promised not to lobby for any of the treatments that have already been discussed and ruled out. I don't distrust my current doc but at times he has not been as proactive in giving me information on the current state of the art for therapies. I have to pull his teeth out sometimes. But in all fairness he seems to have given me the bare bone essentials. He disputes that some of the things I have read here would be appropriate of helpful.

Of course, I will keep on monitoring this very helpful and interesting forum. Thank you to all the ones who ask questions and get new info out from the better informed or just to instigate more helpful discussion.

[Tall_Allen]

There is no need for a PSMA PET/CT if it makes no difference in your therapy. There is a lot of misinformation on this forum.

[maggiedrum in reply to Tall_Allen]

I agree as to it helping my diagnosis and treatment. I view knowing what is happening at better detail, and more proactively, for my own emotional health. Primarily to get a better sense of how fast and how wide it is progressing. You may disagree with how I feel but that is what is going through my head.

[Tall_Allen in reply to maggiedrum]

IMO you are only fueling anxiety. What is in your head is not helping you. I practice mindfulness to get me out of my head.

[maggiedrum in reply to Tall_Allen]

Agree. But anxiety is not causing my cancer to get worse, nor causing my reaction to low T. I have tried mind-fullness a couple of times in the past. I'm happy it worked for you but it never did for me. I certainly would like to lower my anxiety. When it is bad I resort (reluctantly) to meds, which do work. And, my anxiety definitely is, and has always been, off and on. It tends to follow the same cyclical pattern that my testosterone level does. That means my depression is bad for 3 weeks and really bad for the middle of those weeks, and dramatically gets better for about one week. So, it is on a monthly cycle, my period if you will. Classical bipolar.

Thanks for the suggestion. Working on projects was my best way to get my head calmed down, and/or, learning new things and/or traveling. I do what I can.

[Hidden]

There is a member here that uses estrogen gel instead of lupron with good results. Good results being undetectable psa without lupron side effects.

Read some of this guys posts

healthunlocked.com/user/ron...

[FormulaRob]

please don’t just give up.. we only live once why not go through with treatment and extend your life likely many years considering you have no bone Mets ?

This is a terrible disease and I can’t pretend I understand what it’s like.. I’m here because my father has it. I’m here to learn as much as I can for him.

It’s your life and your decision but maybe some people here can change your mind.

[maggiedrum in reply to FormulaRob]

Just so you know - I am not giving up. I am actively looking for other options. It's great you are looking at the forum. You get much more focus when you are looking down the tunnel yourself. If you can point to the one thing that will give me even two more years with QOL that will not threaten me with being bed-ridden for twelve months, please do. I do hope someone on here will have the silver bullet. Lots of wishful thinking based on limited knowledge of my specific biochemistry and efforts to date. And, the informed opinion of a very experienced oncologist who has a reasonable reply to everything I have brought up to date that I have seen on this forum. That's not to say there will be something. My doc is actively looking for trials I might be accepted for. One close but no for two reasons.

I am hopeful. I am sorry I gave you the impression that I have given up. I am discouraged, yes. A lot of suggestions that I get on here are not approved by the FDA or SOC and therefore insurance companies. I'll fight even those if something looks very promising. I have to make choices based on my limited knowledge too. Just because you read something that someone on here thinks I should try doesn't make it work. Being hormone sensitive and not able to tolerate ADT is not a good place to be. And I truly get angry if anyone (not meaning you) downplays the effects of severe depression.

[Vynbal]

To smurtaw's suggestion I would just add that Orgovyx, instead of a 1 month shot, will get to work faster, and can be stopped quickly, as it is a daily pill with a quick recovery time. Best of luck. I know a friend who has has been on ADT (followed by orchiectomy) and estradiol patch. He says he feels fantastic - no ADT side effects (well, except for gynecomastia).

[maggiedrum in reply to Vynbal]

I guess I am lucky to have a serious side effect. My apology for being sarcastic. It gets to me sometimes.

[maggiedrum in reply to Vynbal]

I finally did some research on Orgovyx. It works by decreasing T. That is what is causing my problem. It just works differently.

[Vynbal in reply to maggiedrum]

Then I have failed to explain properly. My friend also suffered terrible SE from T loss (hot flashes, fatigue, etc.) until his doctor put him on the Estradiol patch. With the patch, he still has no T, but all of the low T SE that caused loss of QOL are gone. He says he feels great.

My point with Orgovyx is that it will quickly flush from your system. Orgovyx will quickly drop your T to near 0. If you find that the Estradiol does not relieve the depression, then stopping Orgovyx will allow your T to recover much quicker than with a Lupron injection. This would minimize the risk of trying to treat your PCa with T reduction As well as maintain mental health by replacing T with Estradiol.

I wish you well.

[maggiedrum in reply to Vynbal]

Thanks Vynbal. I understand your reasoning and suggestion. My doc, and I, have decided that the risk, however small, of having the severe negative side effect from even a small and "reversible" effect is dangerous. I had a problem with the widely used antibiotic, sulfa, a few years ago. I did not die obviously but the type of reaction I had was serious and enough to prevent any doctors now or in the future from prescribing it. ADT and the depression it caused was so traumatic and painful that I am scared to death of any chance of repeating that, ever. That is similar to sticking your hand on a hot stove. It is short and it is reversible but I wouldn't repeat it for anything. I wish everyone on here stop trying to get me to repeat any form of ADT. It will not happen. As I told my oncologist, I would rather die the next day than go through any form of that again.

[babychi]

Are you in pain? I live with pain and I still manage to do most stuff. Why are you waiting? Do the stuff on the bucket list. You could get run over this arvo.

[maggiedrum in reply to babychi]

No pain.

[Grandpa4]

instead of thinking about it as waiting to die, try and think about making sure you enjoy every last minute of the time you have left. This has helped me and might help you. Also you have probably heard this before but aerobic exercise is a very effective antidepressant and is very effective a countering Lupron side effects. Finally have you seen a psychiatrist about treating the depression while on Lupron. They are definitely better at treating depression than GPS.

[maggiedrum in reply to Grandpa4]

I have a life long history with depression. Even though, I was able to have a very successful career and marriage. I got a B.S. in chemistry and a Masters in International Business. I got half way through a Masters program in Adult Education and an TESOL certificate 5 years ago. I dropped this only because Washington state dramatically cut back funding for community colleges where I wanted to teach. I already was accepted to do that and then they started letting go tenured professors, and everyone below them. I did have many setbacks along the way when my problems would flare.

I have been under psychiatric care on a routine basis for the last ten years and have been through every class of med and am "treatment resistant". I even tried Transcranial Magnetic Stimulation at great expense and housing away from home. It didn't work. I take a handful of anti-depression meds every day along with some others for major anxiety disorder. I told my shrink this week that my anxiety was peaking and he said that would be very understandable given my PC prognosis.

I was so freaked out, and completely 100%, disabled by the ADT induced treatment, that I would just commit suicide rather than go through a year of agony, fatigue, suicidal thoughts every day, all which gave me a beyond negative QOL. If any of you think you understand depression and think it is always treatable to a tolerable level, all I can say is you have never experienced anything like this. I do wish I had been offered a shorter term dose of Lupron or some other med or plus estrogen or something else but my doc follows the standard SOC and ADT has been shown to be the best overall, from what I can see. Not every doc will automatically add on estrogen or other additional med unless they have reason to think it is necessary. It has side effects too.

It is quite obvious that not everyone who is on or has been on ADT has the same side effects. And the degree of a side effect is always different. I actually get somewhat angry when someone tells me it can't be that bad or that it was easily fixed by doing this, that, or the other thing. I value my remaining QOL very much. I intend to use my remaining time doing fun and exciting things, especially travel. I have never recovered my pre-ADT energy level. There have definitely been some lingering, long term, side effects.

My previous, best, therapy was doing projects - woodworking and building while learning new things. Learning new things has been the salvation of my life. I don't seem to have the interest or focus or enjoyment that I previously had. Pre-diagnosis I built a tiny-house shed from the foundation up when I did not have many of the skills, nor some of the tools, required. I learned via books and questions to skilled friends. I put in every fastener, even cedar plank, every shingle, every stain, while following the strict building codes in my town. Made and recovered from small and big mistakes. Completely "stick built". It also kept me in top physical condition. I was having so much fun I would have to be called in at night. It was an intense six month project and my neighbors bring visitors over to just see it. Now, I have a list of small projects that I am too tired to finish. On good days I put in 2-3 hours. I still do some hiking and long walks when I can get motivated.

I am trying to do all the things I am "supposed to do". I eat well. I still am trying to keep my mind stimulated. I am half way through a graduate level current biochemistry text. It actually has parts of chapters on how ADT works the context of cell biology and chemistry. I have a curious mind. It pains me to have lost some of the motivation I once had to motor through things like this. I was very good at all in school. I had teaching or research assistantships from my senior year and all of my graduate years.

I am not going in to my cocoon waiting to die. You can't just will away biochemically induced side effects though. Hormones are a critical driver of al the biochemistry of your life. Testosterone, and estrogen, and most other hormones are systemic. I don't view just trying out different meds of dubious value which may screw up the rest of my life (QOL). I did that with anti-depression meds for years. Just one vial of a new med may give you bad side effects for many months. I'm willing to try something else if it looks very promising, even it has some documented side effects, but I won't try something at this point where the side effects can have major negative impact.

I didn't mention that I have also had my DNA analyzed. I would try one of the meds that help counteract gene defects but no mutations found.

I think I am sounding overly defensive here. QOL is my primary concern over all others right now. I won't trade 12 extra months of poor QOL for three months of good QOL. I lost twelve months and counting with ADT. I am somewhat risk adverse right now. I have been researching trials but so far I am disqualified routinely by them requiring demonstrated castration resistance and some of them only when you have exhausted every other therapy in the known SOC cascade, that is, when you have one foot in the grave and only missing a morphine drip by luck.

I do appreciate the suggestions for things to try though. I am happy to hear when something has worked for some of you. I wish I had a better crystal ball to evaluate the different options. I've had a reasonably good life, even with my life long serious depression, and, at 72 I am not desperate to live to 75 let alone 80.

[Grandpa4 in reply to maggiedrum]

So sorry. That does sound awful. Weird how these chemicals control how are minds think. I did not believe that removing testosterone would eliminate my sex drive until it happened. I wonder if the depression is drug specific or is it from the lack of testosterone? Is it worth trying the other drugs that block testosterone.

[maggiedrum in reply to Grandpa4]

Lack of testosterone. The effect of varying levels of hormones is well documented.

[maley2711]

Lazy right now..... I see several folks mentioning SARMS ...what is it???

[maley2711]

Men here have made some great suggestions re dealing with/minimizing depression while giving yourself much better odds of extending your life before PCa becomes severely symptomatic... I'm thinking that will be even more depressing than the impact of ADT. None of your Docs has mentioned any of these ideas for lowering your T while taking other actions to help reduce depression?? I'm sorry that has been your experience, and equally as sad about the state of care for so many men...we shouldn't feel the need to seek help from amateurs on an internet forum...that situation depresses me!!!

[maggiedrum in reply to maley2711]

Maley2711 - sorry to say but you don't have any idea how bad untreatable depression can be. Treatment resistant depression is very common. Very, very common. It is one of the things that I also continuously research.

[maley2711 in reply to maggiedrum]

You are right> i have rejected the suggestion that I might try an anti-depressant, as I didn't feel I was suffering from anything other than the normal ups and downs of life.

Again, I agree no one but other folks who suffer the same malady can know the impact of that malady, including your untreatable depression. All I said is that it seems as men here are totally sympathetic to your situation and, in good faith, suggesting things that they believe might be options for you..but only you know if that might be true for you. Maybe you didn't post with the expectation that some here would make suggestions?

[maggiedrum in reply to maley2711]

Maley, I have been following this excellent forum for a while now. Everyone's posts are well-intentioned. What I have seen, too often, are posts with well-intentioned suggestions when the posters really don't understand the body of information on whatever they are posting about. Much of the posts concern what has been helpful to them, or to others they may know, or just from picking up "information" from this site and others. The point I am making is that much of this advice, while well-intentioned, can actually be harmful to others whose biology and conditions are not comparable.

Even some posters have gone and reviewed the scientific research articles or received information from other reliable sources. What is missing is all the constraints that were explicit or implicit in those pieces of information. I have seen a few, only a few, articles which mention depression as a significant side effect of ADT.

For someone whose worst side effect is depression that is a problem. From what I have seen, and which is supported by some posts on this forum, is that many men do not associate their mild depression to ADT. I understand that since depression is a wide problem and there are many causes, some temporary and some not.

Only a relatively small subset of those with depression resort to clinical therapy. And depression is viewed as a weakness of the mind by some and perhaps embarrassing for real men to fess up to. It is a co-morbidity that causes an extreme side effect for me.

And, just like other well-intentioned suggestions on here, those which should work for me since it works for them, concern my depression. Things like eating right, mind-fullness (I have CD's and book after book and actual coaching by psychotherapists on this), exercise, or just "decide to stop being depressed" should work. So it is my lack of will power which is the problem rather than a true imbalance in my molecular, cellular, and body systems. Exercise does seem to be the best all-around therapy. I personally don't think it works on the cancer but it does work with endorphins and taking your mind off of the condition. It can't make an epithelial cell resist turning cancerous.

[Leader4077]

I can understand your comments about depression……but I think you now might consider going in a different direction. Chemotherapy (Docetaxel) can be given in different dosages…..I have gone through 14 infusions with 3 week cycles in 2021-2022 and it lowered my PSA every single time. Sorry, but I think a “poor me” attitude seems stronger for you now than “I’ve things to do attitude”.

Explore………chemo, Pluvicto, BAT…….what’s to lose? It’s Christmas, the JOY is everywhere and I hope you can find some.

Mike

[maggiedrum in reply to Leader4077]

Mike - there is lots to lose. Thank you for trying to help. JOY to you. I'm enjoying the season except for our horrible weather. But even all the snow and ice gave me good exercise with the shoveling. My back says otherwise but I'll take what I can get. It was worth it. Listening to "what's to lose" doesn't make me feel better. Signed - Poor Me

[StePeteMN]

Can you share your reason for declining chemotherapy? Docetaxal and Cabazataxal are well tolerated, even carboplatin isn't so bad for many and they can be very effective.

[maggiedrum in reply to StePeteMN]

I am considering it. I have seen where it has fewer, and better tolerated, side effects for some. I have seen it completely destroy others. My biggest concern is a dramatic lowering of my QOL which I have personally observed in everyone on chemo. I need to pay better attention to the variety of different combinations and specific meds. Docetaxal is well tolerated by some and not by others. And going through it definitely prevents freedom for travel and other activities. This is the one avenue which might help but one which I have real reservations about. I would like to stop or really slow down the cancer but my priorities may be different than some.

[StePeteMN in reply to maggiedrum]

"My biggest concern is a dramatic lowering of my QOL which I have personally observed in everyone on chemo. I need to pay better attention to the variety of different combinations and specific meds."...Yes. cytotoxic chemotherapies are different from each other and, fortunately for us, those specific for prostate cancer are easier to live with than others. I've had Docetaxal, Cabazataxal, and Carboplatin. It's not "fun". But never caused me to quit living, or even working for that matter. I don't diminish the seriousness of depression, I know it's real and debilitating. Is yours caused by a lack of testosterone? Or caused by Lupron? Not the same thing. If it's from Lupron, I see others in this thread have discussed orchiectomy. I've also heard of at least one doctor who has prescribed Abiraterone without Lupron or other ADT underneath.

[Joeym1040]

I used estrgel for 1 year in a clinical trial. All my Lupron side effects went away. Only issues was hair loss on my body below my neck. Another is breast sensitivity but you can have some minor radiation before hand to prevent that. I felt great that entire year! Give it a try.

[maggiedrum]

Thanks for sharing. I was not offered that trial or the med after. I won't risk taking Lupron again under any circumstances. It scared me. Real bad. Poor pitiful me.

[maley2711 in reply to maggiedrum]

That makes sense..burnt once, and not again!!!

[maggiedrum]

I haven't looked at these papers nor seen the trials. I have not found even one trial that I can qualify for, even though where I would have to fly across the country to get the treatments and checkups. I can certainly see the promise of this type of med for PC. I believe it is not SOC unless you have demonstrated castration-resistance. I really love understanding the biochemical and physiological mechanisms of this.

[TJS-1]

I don’t do well on ADT either. Substituted Durolutamide as a monotherapy which so far (only 3.5 months in) has had same efficacy but for me, virtually no side effects. Certainly none that I experienced on ADT (Lupron and Degarelix injections, plus Abiraterone). And my naturally produced Testosterone has remained above 900; low/no T is the cause of most adverse ADT side effects. Maybe something for you to consider?

[Leader4077 in reply to TJS-1]

Is your medical team ok with 900 testosterone? Anyway, Noel to you!

[TJS-1 in reply to Leader4077]

Yes, that is one indication the drug is working. Nubeqa is an AR inhibitor (not and anti-androgen like lupron) so T is not absorbed by cells (including PCa cells) while it remains effective. As a result T accumulates to high levels in your system. Similar mechanism as Xtandi but for some like me even fewer side effects. No brain fog or fatigue, and no weight gain since metabolism remains high with the high T; also able to increase muscle mass with weight training.

Happy holidays to you and everyone as well!

[gsun in reply to TJS-1]

If your cells don't absorb the T, how can it help with muscle mass and maybe libido?

[TJS-1 in reply to gsun]

That’s what is so interesting, and confounding, about systemic treatments. I have ongoing conversations with my UC Health MO/team (center of excellence and research hospital) about this all the time, and it seems the simple but unsatisfying answer for us laymen is that the COMPLETE pharmacology of many drugs we use is simply not well understood. Not a surprise given how extremely complex our hormonal/ endocrine system is; and because the forms of cancer we suffer, and efficacy of treatments we elect, are mostly heterogenous. Also, the drugs are developed to treat PCa in a mostly clinical vacuum, without much regard for other effects except toxicity and mortality.

So from my n=1 and anecdotal experience only, the T deprivation drugs compromised my metabolism, mental acuity and muscular strength significantly over a relatively short time. Even with attempted regular weight training I got to the point I couldn’t do even 1/2 of my pre-PCa treatment regimen. Was not able to trigger endorphine response either, and slid into mild depression.

After a couple ADT “vacations” and restarting systemic treatment with Nubeqa only, I’m back to pre PCa performance (allowing modest compromise for 8 years of aging), trigger endorphine rush at most every work out, and generally very happy. Supposition is that PCa cell ARs are adequately compromised by the drug, but other healthy cells perhaps not so much, or in a different manner, for reasons not fully understood. That’s my MOs conclusion 🙂.

Am fully aware this Tx regimen is still new as indicated in my profile, and favorable response may not last long. But I do think there is value in sharing our different experiences concerning degree and timing of various side effects on this forum. I’ve been taking cues from many others who post here frequently for years. All things considered, this is a much better treatment for me at this point in time than we’re the anti-androgens.

[Leader4077 in reply to TJS-1]

You have definitely opened a new idea for my treatment……….Nubequa as a monotherapy with not T reduction as a primary effect. On this basis, one wouldn’t need Lupron, Firmagon, Orgovyx, etc. Merry Christmas!

Mike

[lokibear0803]

hi smurtaw- is rad140 also an antagonist in metastatic cells? Thanks!

[NRoundy1]

Anti androgen monotherapy could be helpful. Bicalutamide used to be used. Now we have better ... amides such as enzalutamide, apalutamide, and daralutamide. sciencedirect.com/science/a...

Breast swelling and nipple pain can often be prevented with low dose radiation to the breasts prior to starting. Dr. Mark Scholz is reported to use Femara to prevent breast pain while on antiandrogen.

There are lots of lifestyle things that may help....exercise and diet.

If testosterone is not suppressed, dutasteride is a good way to slow down progression. Make certain your doctors are aware of the published research that it is safe and effective.

Find help for your depression. I have it also, and it can make life miserable.

You still have years to go. Take steps now to make every day count.

Nathan

[Doseydoe in reply to NRoundy1]

Hey NR1, I kinda follow the SOC you mention. That being 50mg Bicalutamide plus half a Tamoxifen tab for the breast pain. It's keeping my PSA low while I enjoy the benefits from Testosterone. As for my low days, I find a few beers help, cheers 🍻 DD 😎

[maggiedrum]

Thanks for your reply. I can't take all the meds you mentioned. They are not available to anyone who is hormone-sensitive. I am getting the highest level of therapy for my depression. I try to do all the things that are recommended in addition to the meds, which don't work. Dutasteride is only for benign prostate enlargement. It has been shown to be contraindicated for cancer as it can actually increase the cancer risk. Whether that is true or not, it is definitely not SOC for PC.

[maggiedrum]

Also, an androgen-receptor blocking med will give the same effects to my system as a lowering of testosterone since cells in the body which need testosterone , or which act differently without it, will have the same problem. To a cell it doesn't really matter how it doesn't get the testosterone. It is only for use for hormone sensitive men when combined with docetaxal. The dosage must be halved for anyone with bad liver damage, which is a co-morbidity I have (not from alcohol). My doc has never suggested it but I can ask him next time. The real issue is the systemic effect of messing with the testosterone regulation and use in cells.

[Grumpyswife in reply to maggiedrum]

My mother was bipolar and used lithium successfully for over 30 years. It made her almost normal but eventually it poisoned her and she almost died from the toxicity. Over her lifetime I witnessed her severe depression in an almost catatonic state. She also benefited from ECT although many feel it’s barbaric. Perhaps you’ve considered that as well.

[maggiedrum in reply to Grumpyswife]

Thanks for your thoughts. I am sorry to hear about your loss and the reason for it. I have considered ECT and have discussed it several times with two different psychiatrists. I know it is not as barbaric as commonly believed. Depression is far worse. Lithium is indeed toxic and not recommended for long term use. Your mother was unfortunate to be one of the examples of why it is carefully prescribed. It is one of the mainstay meds for those who are very close to suicide, as in a medical emergency closeness. I didn't find it helped me at any time for any dose though. It did have a narcotic effect at higher doses though which is counterproductive for me. After discussing the pros and cons of ECT I decided to not do it, primarily for the loss of some memory. You seem to only lose the important or happy memories and not the bad ones (I'm joking).

I know far more about mental health, specifically bipolar and depression, than I do about prostate cancer. I have doing research on it for many more years unfortunately. When it is bad it is worse than dying. And I am the poster child for biochemically driven depression, something which many laymen don't understand and seemingly cannot be taught. People don't want to talk about Aunt Sally who killed herself because of her depression. Cancer is easy to talk about, at least in these days.

Mental illness is a taboo subject for most. Even many of those who have it will not discuss it with their spouses or close friends let alone publicly. I have decided a few years ago that it is more helpful to tell people although I still have to be careful and selective. It is a "good" reason to be denied employment by many hiring companies for example. The Army was OK with it for some reason. I think because mentally ill people are thought to make good killers.

[timotur in reply to Grumpyswife]

My mother was bipolar as well, and she was near-normal on lithium, but at times, she didn't take her dosage, and would go into manic states. A newer drug called Depakote gave her a 2nd lease on life, as it was more tolerable and effective. I understand there are even better drugs today.

[Grumpyswife in reply to timotur]

Yes eventually my Mom was put on Depakote and had some normal years.

[maggiedrum]

My reaction to my doc when he said "it was my decision to not do ADT" causes my blood to boil. I didn't take that the wrong way from him since that is what he meant, meaning I could do it if I wanted to. If I do ADT I am no longer a living, breathing, useful human being. Just because depression doesn't put my blood chems into death mode does not mean it is not harmful in the worst way possible. I may have read too much in to what you said. It is a sensitive topic for me since I have faced that all my life. People just don't understand how debilitating and tortuous it is when severe. Mine is not moderate. I have been wondering if I should quit talking about it on here since the issue is widely misunderstood. I do appreciate your reply.

[maggiedrum]

Every person is different. Depression can be mild, moderate, or severe. Mine is on the severe side, unfortunately. I don't find anyone who has not experienced that who can appreciate what that is like.

[gsun]

So, orchiectomy would be no different?

[maggiedrum]

Lupron and other ADT meds are really chemical orchiectomies. Both lower testosterone.

[maggiedrum]

My issue with ADT and meds with similar uses is definitely not money. It would hurt but not as bad as dying from PC. Trying to get my doc to repeat what I went through and the strong possibility of being charged with malpractice is enough to prevent restarting any form of hormone therapy - anti or agonist.

[maggiedrum in reply to maggiedrum]

I know you all mean well, but trying to get me to retry ADT with or without any form of estrogen is not helpful at this point. I appreciate that it worked fine for you. Please don't assume that it is okay for me because of your limited experience or your reading of any trial reports. The science and medicine articles can never list, nor try, all the conditions found it the real world.

[Bspouse]

I cant tell how your health is other than the Pca, but I suggest the chemo if they think it will know down your PSA and your bloodwork is good - since you cant take ADT. Chemo is difficult but not as bad as your experience with ADT. My husband had no nausea during chemo because of the steroids and anti-nausea meds they give with the chemo. Just fatigue and some stomach issues which might have been helped if we had asked the MO. The chemo will fight the cancer and give you more time. He got one chemo session every 3 weeks --- if you cant tolerate it, you can stop after the first session.

[Seasid]

Go to India and pay for lutetium infusion if you want. After lutetium come home and do chemotherapy.

[maggiedrum]

My MO has already told me that chemo is my last line of defense. He does not believe that the lutetium infusion therapy works as well as some think. And it would cause me some other side effects such as degradation of salivary gland tissue since I already don't have enough saliva to even swallow my food some of the time. I do not know if the salivary glands would be damaged enough to be a problem. It's just what he said and I have not bothered to research it since I have no intention to travel to India for any treatment. Or to Turkey or other places. My insurance won't cover it and my MO does not believe the therapy is effective (using fairly strong language). I am sure there will be many here who think that this would be a bad decision on my part. I'm just telling you what I have been told and I have not seen enough evidence to dispute it nor to rule out serious side effects. My QoL decision is to not get chemo. I have many relatives and friends who have suffered through it. It seems that not everyone thinks chemo is all that bad. That is their decision and I wholeheartedly believe they are allowed to make their own decisions regarding all therapies that they will do.