Please consider the following question that I have been pondering: How would you place a value on a certain number of months or years with restored vitality, virility, strength, both physical and mental, in other words the fullness of life and happiness?
And that weighed against the number of months or years of life diminished, with much lower quality of life (QOL) due to the effects of treatments whose side effects diminish one's capacities. Especially from hormonal treatments, ADT and advanced androgen receptor drugs, as well as from chemotherapy, immunotherapies, radio-ligands, etc. Fighting the progression of cancer, which is exacting its own toll.
Most (not all) treatments have some cost to life quality, sometimes small and acceptable, but many times severe. And at the end, there is (statistically if not individually) the hope for extending survival. More life, a few more months or years.
Note that I am not referring to palliative treatments to reduce pain and prevent more serious complications in advanced disease. Nor treatments given late, approaching life's end to slow the tide and create some respite with family and loved ones.
One's strength, vigor, energy, mental clarity, emotional positivity, stability and joy in life altogether might be weighed against additional months or years of suffering and diminishment. Sometimes years of such treatment produce only months of additional overall survival at the end of life.
For example, it has been recently demonstrated that addition of docetaxel chemotherapy early for APC does not measurably extend overall survival in the long term. Undergoing 6 cycles of the chemo takes about 4 months. Following that are months or even years to fully recover from the toxic effects on the body. For this, the average additional (median) survival was 5.8 months in another long term study, and not considered statistically significant. Worth it?
So what is the equation for you, your calculus? How valuable are months spent now in maximum vitality and capacity verses a possible shortening of life at the end, yet under the weight of relative suffering or diminishment, near term or long term?
Would your trade 4 months of overall survival, perhaps some uncertain years away, for 4 months of restored vitality and maximal functionality in life now? How many, if any? It is certainly a difficult question. For me, one month of the fullness and capacity and joy I experience on my BAT with high testosterone is probably worth more than three month of frailty at the end, at some unknown time in the future. And perhaps that is exactly the sort of trade off I have chosen. Life's candle does become increasingly more precious as the time moves on. All life is precious. More than that I cannot say.
(I do apologize to any who may find this to be too disturbing and conflicting to consider. It is not my intent to add any measure of additional suffering or uncertainty for anyone. Paul /MB)
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You are a great wordsmith incorporating worth while subjects to discuss. I've been on Lupron plus Zytiga for a couple years. Zytiga lost it's effectiveness so just Lupron now while on the LuPSMA177 trial study. I have moments that I hate the feeling from the meds. All I can do to diminish that angst is to stay as busy as possiple in a constructive manner. It's moments like this, reflecting that I find it bothers me. Yet I come here to read the posts for moments of reflection.
I had this discussion with my wife 5 yrs ago when xtandi full dose made me an invalid.... She told me she would rather have me active and alive for 3 yrs rather than an invalid for 10 yrs.. I totally agree. Are you on standard 28 day cycle of BAT or some modification of it?? I started standard BAT late last week.... so far things are great....
I wanted to do a modified BAT with high T for a month or 2 and then quick drop with xtandi added, but my MO isn't going for it. Who is your MO and can he be called to discuss treatments with my MO??
I have concerns about standard 28 day cycle BAT not being optimal. Was going to post specifically about this, but didn’t want to turn it into a rant. 😆I am on longer cycle modified BAT, as others here are also doing, and doing well with it.
I take high T via 400mg T-cypionate every 2 weeks for a 10 to 12 week period. Switching to T-gel to allow the T-cyp to be eliminated.
Then stop that, go to castrate T levels for 4 weeks (minimum) adding Orgovyx for that time.
Rinse and repeat. Will post more on the logic and reasons on more detail in the future. But remember it is experimental and not proven in formal trials. Paul
Well you are fortunate to have support to be on standard BAT. I think you should just go with that for the standard three cycles of 28 days. Then if you have a favorable response (PSA behaving down or steady) then ask about shifting to extended cycles. It took me 6 months and 4 consults to convince my MO to agree for me to try it.
It is a conundrum... and a cliff we all face! It isn't easy either, but I think early on, we all grasp for extending as long as we can go. I think, but don't know, only in late stages could we really assess the viability of making this type of decision. We can think or say whatever we might think or say, NOW, but later... It may all change! Some find peace and are ok submitting to it all, and some fight to their last breath. I'm not sure I've considered this all really fully, I'm just throwing whatever is within my reach at it and see what happens really, I limit my expectations either way. Maybe because besides a persistent and determined disease as it's presenting itself in my case, I haven't really suffered much in the way of side effects. Could this be indicative that the therapies aren't working on my body much, so I haven't been labored with the side effects? And subsequently, those therapies aren't effecting the cancer much either? Who knows really ... And until I get to the point where I need to make that decision, whether or not the cure is worse than the disease, I'll reserve judgement. Don't get me wrong, even midway through Chemo, I still thought I was returning to work when done! It wasn't until finishing Chemo the new reality of "why waste time working for a living" when battling this. Because that's not much living! Live while living is good! Lol... So in a roundabout way, maybe I already know what path I would take later if faced with this question. But again, until facing that cliff! I don't think any of us really know, I know I don't!
Always a conundrum this rollercoaster ride we are on!
I would be glad to survive longer with side effects but there is no guarantee for that.
Therefore I would steer far away from therapies which promise long survivor especially if it is not a standard of care (in short experimental).
My plan is to start Enzalutamide when my PSA goes up to 2. (Sorry but I didn't do further reasurch.)
I just know that I am not eligible for Xofigo or Pluvicto just right now as I don't have bone pain and my mets are not visible on PSMA PET scans four years after starting ADT.
My PSA is 0.9 and I started 4 years ago ADT. After 8 weeks on ADT when I was deeply castrated i received an upfront chemotherapy, 6 cycles of Docetaxel chemotherapy 75mg/m2 every 3 Weeks
About one year ago my PSA started to rise from 0.2 and now it is 0.9.
ADT alone is not easy for me.
I don't want to be pushed into any clinical trial until enzalutamide fails.
During Enzalutamide the cancer will mutate further. And when Enza fails i will do a liquid biopsy at PSA 10 and decide about my next treatment.
Methinks we speak the same language. I started a response similar to the one below to NP's post a week or so back. I see Cooolone has responded here and it was his comment on the earlier post I was intending to respond to. What follows is a very personal account, as I have a LOT of experience with cancer, even well beyond that outlined below.
* * *
As a certified n=1 outlier for both my cancers, I cannot begin to speak for the majority of cancer patients reading here. What I can do is share my personal experience with cancer and the toll it takes on QOL. Having been bedside for the death of both parents and two siblings, I have seen the grim reaper in action. My two remaining siblings have both had cancer, each with a second recurrence. One is currently on treatment and the other is in long-term durable remission/possible cure.
I have spent extensive time with each family member (living and dead) during the course of their disease. Most have/had extensive treatments, while one was given palliative care starting from the initial diagnosis. While every case was individually unique, each provided insights into the realities of SOC treatments and the impacts they have on QOL. Four of my relatives have/had long treatment periods (surgical, RT, & chemo) that extended over a decade in length. The two others were of short duration, from time of diagnosis to death. These crash and burn cancer cases serve as diametrically opposed terminal QOL contrasts. The prognosis of 6 months was the same in both cases, but the treatments were at opposite ends of the spectrum. In one case the impacts to QOL were immediate and severe, robbing the person of at least several months of relatively good QOL that would have allowed some travel or other bucket-list activities. In the other, it was palliative care from the start with the preservation of good QOL up until the last month or so of life. To be witness to these two extremes is the sort of experience we all need to be exposed to during our lives. It provides the insight essential for weighing the difficult treatment decisions that come with any cancer diagnosis - and in spades with one of an advanced disease state.
Being myself a 2 x cancer patient (PCa + CLL) with a 16 years history with CLL and 12 years with PCa, I have had plenty of time to consider the SOC vs QOL issues. In the case of CLL, I have never been treated and now have near normal blood labs suggesting I am less likely to need it any time soon. PCa is a bit different, since I am still hormone-sensitive, but have metastatic disease in a location that makes it basically untreatable with RT. Having been able to get my PSA to remain at undetectable levels with a single 3-mo Lupron treatment back in 2017, I was able to stay that way until mid-2021 - with normal T levels and excellent QOL throughout. Due to last year's second BCR, I have just completed a subsequent 2 mo Lupron treatment with similar response "on" (PSA <0.04 & T=8) and "off" (five weeks later, non-ultra PSA= <0.1 & T = 530) treatment. I test again in 2 weeks to confirm the "durability" of my response.
What does this have to do with QOL? Well, had I not broken with the SOC protocol of a 12-18 month induction period of ADT back in 2017, I would have not known that as a "good responder" I could have 4+ years of normal T levels and resulting excellent QOL, The continuous ADT would also have surely driven more mutations and my PCa closer to CR status. I am chancing a repeat of that QOL benefit with my current test for the durability of a short-term ADT#2 under the auspices of the proverb: "nothing ventured, nothing gained".
However, what is most confounding to me, is why such a durability test is not SOC for all low-burden disease patients. As all forms of ADT are basically palliative care from the start and offers no curative benefit, I am curious that similar good ADT responders are not tested (@ say 3 mos out) for a durable response. Extended vacations, like mine, offer significant QOL benefits vs. even a defined 12-18 month SOC induction period (with its progressive impacts to overall health & vitality) not to mention even longer treatment periods. It is difficult for me to imagine any significant loss of long-term efficacy for someone with a quick PSA rise who then needs to return to ADT. After all, at most they would miss only several months in testing for a durable response. For those other "good responders", it offers not only the advantage of a return to "normal" hormone-supportive QOL, but an extension of the time to CR status as well. One can't help but wonder how many patients, never given the chance to test that possibility, are over-treated straight from diagnosis through to CR-status?
Patient Advocacy is Job 1 for all of us. Stay Well & Be Positive,
Yes Paul. I get it. I discuss this with my wife at least once per month. These are clearly early days for BAT/mBAT. So many variations yet the perfect combo for each Man may be slightly different. I personally have fear of not wanting to turn the T off at the end of each cycle. Seems it will be difficult to go back to the ADT cycle. Some Men here have gone 10 yrs, even 15 yrs without Resistance. Others are nearly crippled by its effects.
I am clearly in the camp of quality over quantity.
The broad question you pose Paul is a fundamental one and there is little doubt, that for many, it is one that is reflected on and considered, not once but a number of times during the course of their condition. Not only by the person themselves but also by those close to them.
Just speaking from personal experience, it is one that in my opinion, should be raised and thoroughly discussed at diagnosis and then at various opportunities along the way to re-engage with the discussion when changes arise. Almost a specialty in its own right, as from what I read on this forum and other forums, many people have to gather this information from other members rather than from the various specialists that might be involved in their care.
How much better would it be, if once diagnosed...from the very start and continuing along the way, there was the opportunity to discuss all the various options for treatment and with a well-informed medical specialist who had no vested interest in what choices a person made. While some cancers are short term, as cujoe has shared in his response from his own experience and the outcome usually is fairly clear, it seems to me that with prostate cancer, for many men, it’s more like a chronic condition, often long term to be lived with and managed.
The question of quality of life was one that permeated most of 2022 for our family. The question you raise – essentially quality v quantity - became one that dominated many conversations and considerations. I say our family, not my husband, because his general preference is not to know anything much about PC and certainly nothing that might challenge his specialists’ opinions. Yet his treatment on Enzalutamide impacted so heavily on his functioning across all levels – intellectually, physically, emotionally and socially that it was very clear to those of us who knew him well that there was very little QOL.
A recent change to Abiraterone has made a world of difference.
What was really interesting for me today was when I shared your post with Ron and read to him the various responses. I asked him what he would have replied, his answer was very different to what I expected and caused me to reflect and perhaps challenge my role in orchestrating the change of medication. While he resonated with many of the comments made by Cooolone, he said he’d put up with anything to extend his life to be around those who are important to him. He really believes he’s always had quality of life all along the way even on enzalutamide. He says the next doctor, and there have been a few, who says anything to him about QOL won’t have any! Yes he’s regained his sense of humour.
In thinking about his response and on reflection it shouldn’t have surprised me. With everything that he has had to endure since day one…and there have been many issues that have been so challenging, upsetting and life changing…. he’s never once complained, never mentions the impact of the various side effects from the medications and has undergone numerous procedures without comment. The only concern he expresses is the effects and limitations his condition puts on those close to him.
It has really made me aware too of how important it is for those of us in people’s lives with influence not to assume…as a friend on this hub sometimes reminds me. Nor to judge according to how we’d react in the same circumstances.
At the end of your post, in your usual caring way and concern for others, you apologised if your post was disturbing and conflicting to consider. While that might be the case for some, for me, it provided the opportunity to explore this issue with Ron. It also gave me some direction for the future because I’m aware of the influence I can have over what choices he makes. In hindsight I would think very carefully about influencing him away from the traditional standard of care…plus some…regardless of any pressures from family or my own personal beliefs of what might be in his best interest.
Thank you Paul for posting…I know you and other close contacts on this hub are very aware of the nuances of our ‘story’ but I reiterate for those not so familiar.
ps...his comment from the bedroom as I type was to tell you that actually he'd quite like QOL plus longevity...and could I ask if you have a pill for that!!!
Ron is a modern practitioner of Stoicism it appears to me. A true “Stoic” is not one who embraces silent suffering, as many misunderstand. Rather they craft an approach to life and experiences for wisdom, peace and imperturbable happiness regardless of life’s challenges. By cultivating gratitude, compassion, forgiveness and equanimity. They are true lovers of life. Great books on stoicism include the much treasured classic “Meditations” by Marcus Aurelius. And my own favorite is “A Guide to the Good Life” by William Irvine, a thoroughly modern view.
Being uncomplaining in the face of suffering in the face of unavoidable suffering is one thing. And I honor that. But it is something more to minimize one’s own suffering however possible, in order to bring one’s best self and gifts forward to share with family and other loved ones.
Tell Ron I am happy he made the switch to abiraterone from enzalutamide, which was not the best choice. We each respond differently. For now, it appears he has found his best pill. 💕 Paul
I second Marnie's comment, Paul. As I have been reading along with Ryan Holiday's "The Daily Stoic" this year, you picked up in Ron what I completely missed - I can see more clearly now that you have blown away the fog. Grazie, for the laser-focused insight.
MateoBeach wrote --- " ... One's strength, vigor, energy, mental clarity, emotional positivity, stability and joy in life altogether might be weighed against additional months or years of suffering and diminishment. Sometimes years of such treatment produce only months of additional overall survival at the end of life. ........................
........................So what is the equation for you, your calculus? How valuable are months spent now in maximum vitality and capacity verses a possible shortening of life at the end, yet under the weight of relative suffering or diminishment, near term or long term? ... "
IN 2015 my biopsy was GLEASON 10 right half of prostate. Research convinced my that ADT WAS OUT (chemical side effects????) so castration (simple surgery to remove offending *T* production) was the way with the added benefit of making my numerous 100+ mile bicycle rides and hill climbing much more enjoyable!!!
SOC was out so CRYOABLATION by the Grandfather of PCa CRYO was the way to go along with his experimental 3 DRUG COMBO IMMUNO INJECTION along with the reintroduction of Testosterone via bi-weekly Cypionate injections (had another one yesterday) to return some of the added benefits of *T*.
My scans at time of diagnosis showed no mets. but they were not of today's quality so I was always skeptical and I was not sure that my path for treatment was THE WISEST but it was the one that ALLOWED me the greatest Quality of Life for whatever time frame I had left.
As I type this reply I ask, "How many other 72yo men do you-all know who are 7 years into GL10 and at this moment are recovering with a fractured tibia from being T-boned by a 200+ pound wild hog 3 weeks ago this morning at 3am at mile 30.4 of a planned overnight 100 mile ride that was meant to honor the life of a bicycling friend who was hit by a semi and killed 10 years ago as he a 2 friends began their last week of riding from Prudhoe Bay Alaska to Key West FL?"
In other words -- QUALITY OF LIFE -- is imperative to me and I have the means at my disposal (and have had before PCa) to end it all when I feel my quality is not livable. My wife of approaching 50 years and kids have been aware of my choice and totally understand. Being under Orthopedic orders of NO PRESSURE on leg I of course continue to mow the grass, do the house cleaning, the laundry, the cooking and clean-up, food shopping with wife's transport to the food store and other NORMAL stuff that I feel are required to continue my QUALITY and thanks to my choice of treatment protocol I believe I have years to continue.
I no longer am confined by religious beliefs so am free to do as I please and not as had been dictated to me by parents from the time of my birth. Do as you see fit and be at peace.
After watching my Father slowly die from PCa, I vowed to never, ever, let that happen to me. His treatments took him from a bright, happy, energetic life of the party loving man to a beaten shell of a human, who got an Orchiectomy when it was way too late without even being asked. Weeks of lying in bed in intractable spinal pain. Not living by any measure, just existing, getting fed by tubes and watered by IVs like a large plant.
I was Dx’d in 1995, surgery in 1996. Current PSA (few months ago) was 0.74. No other treatments, none. Would rather have the better days now.
How my journey ends is MY decision when it is time to decide.
Like everyone, I have my own n=1, and I have done 22 months of treatment, and then off for 22 months... Interestingly, this time my MO is planning 1 year of treatment only, if my PSA remains undetectable post SBRT.... C'mon undetectable, baby..
QOL has been good because of the break... During tx, I suffer from anemia, lack of energy, Forgetting things, hot flashes, loss of libido, etc... During the 22 months of tx, I was a mess by the end... Two months in and I am feeling it... This disease just sucks for QOL...It is why I am considering BAT and will discuss with my MO at Cleveland Clinic...
I had my SBRT in June... I haven't looked in depth at the trial to see time frame for tx post SBRT... I never rule anything out when it comes to getting off the hell ship for some QOL... The 22 months was real living...
Like most that have responded to Mateo Beach, Quantity of life means nothing if life is not worth living. I was struck by Cancer 2x's post. I am 86 and by any measure have been blessed throught my life. I am ready to check out. I will do anything in my power to avoid a similar fate to that of Cancer 2x's father. Earlier this year, I created an advance Directive with an End of Life Option. If need be, after saying my good byes, I think that I will be ready for that cocktail.
My wife and I both find solace in knowing we have the prescribed cocktail, graceful exit, option here in Oregon. We do as much for our dogs when the time arrives.
It is a compelling option! Readily available for animals... But for us mere humans, not so much!
Can't understand why every State doesn't have this. Of course it's repulsive to some, but the fact it exists and should be available to those who've been through the ringer and want as peaceful an exit as available, should all have that option and dignity!
Im sorry I haven’t responded to this but I have read almost all of them. Im really not ready to make this decision at my stage, but i am doing things that are not SOC like SARMs to mitigate the ADT. So far so good but it is a risk i am willing to take, so QOL is very important to me at this stage. Im 64 and i have plenty of SOC options left. I am not ready to think about checking out YET, but I also feel for all of you who are going through what I will be going through to soon for me. For me now, as Clint Eastwood said “dying ain’t much of a living son”
One of my siblings gave me Elisabeth Kübler-Ross' book, "On Death & Dying", when my dad was dying of cancer back when the book was maybe 10 years old. It was a great aid in helping me understand the stages of death for the person going through it and as a guide for the family, loved ones, friends, and care-givers who are witness to it. The book is as relevant today as when it was first published in 1969.
Incorporating the reality of death into our lives is a potential source of deeper meaning and an embrace of what we will all eventually face. The harsh reality is that none of us is getting out of here alive, so let's all live our lives accordingly.
Live It Large & Keep It Well,
Paz - Capt'n K9
They are just going to have to figure out a way to treat prostate cancer without depriving men of testosterone. Period. End of story. I'm not doing it
Anomalous wrote --- "They are just going to have to figure out a way to treat prostate cancer without depriving men of testosterone. Period. End of story. I'm not doing it"
I AM DOING IT!!!!! in my OWN WAY
As I've posted -- In 2015 dx Gleason 10 began with a Bilateral Orchiectomy before RIGHT HALF of GL10 prostate was cryoablated. THEN had a Keytruda+Opdivo+Yervoy in-situ injection 7 months later WITH CYPIONATE (Testosterone) injected bi-weekly beginning 1 month later. Had injection last week and next one is next week and then another and another and ----
So many beautiful things said here that apply in interesting ways to those of us without cancer. Am I enjoying my QOL and precious health every day? Am I making my days count enough? Even though I’ve lived one more year than Paul, it seems he might have lived more. (?) I recognize a lot of Ron in me. (Maybe?) I often relax into life as it comes to me, going with the flow. I see my brothers (you, Paul) as reaching out to grab all the best — seek, find, devour, do! Ron wants to be with family; me too, but if I no longer knew who they were, I’d want that potion…well, unless my relaxed flowing self was having a great old time in that memory care unit. HU makes nights when I can’t sleep kind of special. Love you, Paul, and your friends too. I’m going to read that book you mentioned and “live like Paul” tomorrow, well at least a little bit. 😘
So kind that you think of me that way, Big Sis. Thank you, it is humbling.Even I don’t “live like me” these days. Though I try, treasuring every day as the gift that it truly is. And doing just what I can do. Learned that going through chemotherapy.
What used to be easy and natural, such as running up Six Mile Trail from Yosemite Valley to Glacier point and immediately back down, without thought or planning. Taking my road bike to Maui to ride from sea level to 10,000 feet on Haleakala every other day. And so forth.
Now my daily is also a walk in the neighborhood, though that in the forest. And prefer not suffering on my e-bike to Everest Challenge rides.
The JMT sections were not always fully successful and could not complete what I had hoped. But I do try. That is the important thing. I go into the mountains, forests and beaches for the beauty, not to conquer.
Surviving long with cancer requires surviving. Living well for as long as possible and fighting senescence, frailty, sarcopenia, obesity, depression and despair, as well as slowing or halting the cancer. So my study and program involves the science and pathways of longevity, as we have been exploring recently. Exercise including a strength / resistance training regimen are so necessary to that equation. We should talk about that soon.
For now, Johane, Mateo and I are in Idaho and arriving in Jackson, WY this morning. We have three backpacks of three days each planned: one in Grand Tetons, one in Yellowstone and one in the Sawtooths. And permission to ourselves to modify or reduce them as necessary.
I have a recent and definitive answer for myself and my QOL versus time to death. Lupron gave me the worst depression of my life, and that is really saying something since I have had chronic severe depression for all of my conscious years in my 72 year lifespan. It put me in bed, took away ALL motivation to do anything, made it almost impossible to do anything, took away all muscle tone, and made me think of offing myself every single day. You might say that my QOL for those 11 months (after a 3 month shot of Lupron).
My doc still wanted me to continue with Lupron. I told him, and have since told him several times, that I would rather die tomorrow than to do Lupron again. What I went through was living unless you call living as a suicidal vegetable living.
Before that though, I had given considerable thought to what I might give up for QOL if I gained a couple of extra months, or half a year, a year, or more years. Having seen more than one friend, and my brother, go through living hell with chemo, I have very close personal experience seeing what that meant to others. My brother had chemo several times and a few surgeries and he is glad he made the tradeoffs. One other friend refused to get a second round of chemo and started making end of life plans. She died not long after that.
One of the factors I have noticed in trial after trial is the minuscule additional life that is gained from some of these "successful" therapies. Many of them claim success if the mean benefit is in the order of a couple of months. I would have to be very aware of the potential side effects and what they would do to QOL before making that decision. With the experiences I have had with doctors saying that side effects are minimal, or "tolerable" for XYZ treatment, I have very low confidence in those statements.
For my particular issue with ADT I made the only choice I felt I could make. I do know that there are many men out there who can tolerate more than I can. You also need to look at the impact on your close family and friends. I would not want to make their lives miserable so that I could live a few more weeks.
Thank you for your very well considered reply. I understand well, as I too am completely intolerant of Lupron/Eligard ADT. Although most of the adverse side effects are due to the absence of testosterone, and not the specific drug. I also have had a long history with severe depression, though not as bad as yours sounds.
A few things to consider that might be Acceptable ways to slow cancer progression: I did try ADT using the high-dose estradiol patches alone after a round of radiation and found it to be considerably more acceptable. Easy to try and it doesn’t persist long if you decide to stop.
Lu-PSMA treatments are available for HSPC in several other AA countries if one can afford to travel and pay. I had treatments in Australia last May with good results so far. India is probably the least expensive. Much info and experiences reported on this site.
Several of us are using experimental modified BAT treatments while still HSPC. Really good effects on improving QOL. New trials are expanding the role and variations of BAT, including a few for HSPC. I do 3 months of very high testosterone, then I cruise through just one month of ADT using Orgovyx to control the cancer. After 18 months it is still working quite well for me.
Best regards to you, whatever you, whatever path you choose. Paul
Thanks for your history post-Lupron. For some reason my MO (oncologist) has never mentioned estradiol either as a sole med nor in conjunction with Lupron to make the side effects more tolerable. I don't think BAT would help me. My intolerable depression immediately (within 2 weeks) kicked in. My doc initially planned one 3-month Lupron injection followed by a second and then go on and off and see how that worked.
For me, I will never, ever do anything that would lower my testosterone whether with adjunct estradiol or not. Just the possibility is a no-go for me. I asked him about the Lu-PSMA therapy (and other radiation sources) and he point blank said that the evidence is very poor that it works and that it works only with a small sub-set of men. He strongly recommended not starting it: not SOC and not covered by insurance. It is extremely expensive. (I'm in the US and have what is considered top insurance).
Traveling out of country to do any therapy is something I have decided not to do. The initial consultation and treatment is just the start of a course of treatment with followups required (or they should be and if not suggested I would question the expertise of the docs). I used to travel extensively by air and I put air travel as a strong deterrent to good QOL. That may seem silly to some but it is what it is for me.
I am very willing to be part of a promising trial and my doc is constantly reviewing those in progress or proposed. I follow trials my self, at least the ones in the US on the NIH reports. I almost met the requirements for one but a strict requirement was for fewer mets than I have. And it would have been cross country for me to NYC with required followups in person.
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