When treatment stops working, why do we allow ourselves to become experimental lab rats? Where's the dignity? Are we not at peace with our maker, are we afraid to meet him? I feel as though we've been lab rats to Permanent Washington for the past 2 years, and it's sucked. Maybe it's just me, but I read everyone's horror stories regarding trial and failures after original treatment fails....I don't want to live like that, false hope, after false hope only to end up where we were headed anyway.
When Treatment Stops Working - Advanced Prostate...
When Treatment Stops Working
81 Replies
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That’s why our disease is INCURABLE! We have a handful of meds shown to be effective in slowing down the progression. When those stop working most of us are willing to try other options to try and prolong our lives. I’m in that group. My QOL, so far, ain’t to bad.
Agreed. Well put. Knock on wood I too am happy to see, smell, touch, hear (not necessarily in that order lol).
Men who challenged the unknown or with known risk treatment trials are why I didnt die within 3 to 6 months of my diagnosis.
The 2 1/2 years of life since dx afforded to my family and I has been a time to plan and reflect.
Those before us in trials will be looked upon favorably by "their maker".
The 1, 2 and 8 cranial nerves with some GSS, general, somatic sensory in there too.
Stop reflecting and keep planning CAMPSOUPS. Remember the AMG 509 post this week. Hang in there Soupy!
Currumpaw
I agree, I was DX 65 months ago, still rockin and rollin. I feel better now, than I did 2 years ago, and definitely better than the first year after diagnosis. Some of my mets have gone away for 2 straight scans/yrs, quite a few are smaller or don't show on the scans. My PSA is 0.017 on Zytiga, after Abiraterone quit working so well about 8 months ago. One piece of wisdom I would give to those who are beyond removal of the prostate and a chance at a life without recurrence. Get the testes removed, I pushed for it, but not hard enough with my MO. I didn't know that you can go for quite a while without taking drugs and keep the cancer from growing with surgery. I have been taking meds for all but 6 months, when I went on a vacation from it. That was heavenly BTW. I am left wondering if castrate resistance would have been delayed a measurable amount of time, if I was castrated, and didn't take Bicalumatide for that amount of time. FIND OUT...ask questions
Re: “That’s why our disease is INCURABLE! ”Much prefer “That’s why the (Majority) find this disease to be INCURABLE.
With the right circumstances and Medical treatments a few have had success beating this disease. I think I’m one of those blessed few. I wait for my 2 year mark with no signs of PC and being completely off treatments and medications. To soon for me to yell from the roof tops. It’s become very promising for myself. I will continue to pray for others who fight this horrific disease. Cheers 🍻 Bud Zero
I stay alive and go through this hell for the women in my life. They say "we are not done with you yet" They are keeping me young and keeping me alive, I trust they will tell me when it is time.
I have debated with myself over your name, is it mrsc Ruffy? or even Mrs Cruffy?, but now I know for sure it is Mr. Scruffy!
We go through this hell for the women in our life."
Well said!
and I would add ... for our enjoyment of them as well.
As a wife, we thank you❤️❤️
It all seems to hinge on the human experience … and on this group you see the entire breadth and width. Some guys simply cannot tolerate ADT SEs , for example , and quit early and wait for the need for hospice to take over. Some guys fly through every treatment on the planet, seemingly easily and are ready for more. Me , I have a very powerful desire to live at any costs. My first offer of care was hospice ….. I would have gleefully been a lab rat to keep from croaking….. and I was … So far I’ve gotten nearly 45 months “ post hospice “ extra life …from trying. Its been hell at times, and those the good times. I don’t care , I’ve got a full basket of dignity here, but I want a bigger tub of life.
Some guys just want a comfortable dignity….hospice … having had every nasty treatment under the sun and are sick of it all. They can’t can’t take it anymore. Other guys have no choice … “ their body “ has collapsed and there is no way to keep going.
The point being , imho …it’s all about what do “ you “ want for yourself … it’s your life , it’s your choice in death if need be. The variations are as many as there are men to experience them. I just think we should strongly support the choice each of us makes for our life …. Even if what “ he “ chooses , strongly contradicts “ my “ own view. ( and there have been many examples of that here, for me ). Ultimately, all of us stage four guys are going to end things dead, some sooner than others …we’re all going to end up the same no matter what path we take. We’re all going to traumatize our loved ones and nothing we can do about it ultimately. There are a lot of great guys here supporting each other , it takes a “ croaker “ to fully realize the eventuality of another croaker. I’d like to see all of us beat this disease and live out the “ normal “ lifespan we have …. That’s what I’d like to see …. I’m just one conscious perspective in an unfortunate sea of other perspectives here …. Still that’s what I’d want, but …. I would and do still strongly support anyone else’s choice , even if “ death now “ is what they wanted. We often use the descriptor brothers …. We are brothers and should be brothers for each outer … that’s just IMHO.
Having said that …. Sometimes I might think “ quit being a whiny little be-atch , grow a pair , and cinch up that jockstrap and be a man “ …. Yayahahahaya yayahahahaya of course “ that “ falls “ short “ in so many ways , here , you can’t say them all yayahahahaya yayahahahaya. All the tired clichés aside …. I’ll stick with the caring supportive brothers one as being most appropriate for me.
Just say’in ❤️❤️❤️
You know you hit it with "choice". (well you hit it all actually lol). It is personal and needs to be respected.
My close family and I were just discussing recently (my dad passed in hospice 6 months ago my mom same 12 years ago).
We discussed/questioned the approach here in the U.S.
"why couldn't we say goodbyes while he could still speak enough or nod his head".
Conversely we went thru the same with both parents of limited consciousness, organs shutting down, lungs being suctioned, just all in all keeping life going albeit the lowest form of life, for hours to 2 days longer than would have been natural.
So choice is important.
We did get the wink and nod from the hospice workers for my dad but didnt realize it until reflecting a couple months later. There came a point when she said well he doesn't really need Oxygen any longer. Shall I turn it off. We thought it was a medical/physical thing but in retrospect she was helping to minimize the continued primitive life form.
BTW he had said when he could still speak a little bit he was ready to see my mom.
He passed away 3 days later at 87 years old. (not my biological father so I'm not looking at that kind of life expectancy even if I didnt have PC lol).
Yes sir buddy … exactly perfect example. It’s all about choice. I cringe when I hear another brother hang up his spurs and go into hospice…. I almost cry ( I do cry some ) … but , ultimately it’s their choice, we have to respect that.
❤️❤️❤️
Don't tell anyone but on news of hospice or passing I gulp, can't swallow, tears well up and it takes me a few days to be able to muster some words/thoughts.❤️❤️❤️
It seems like so many are passing in recent months …that’d bum out about anyone ….. in their shoes ( like us ). No one lasts very long in hospice … and that wife that gave us the moment by moment look ( at where we are eventually going ) in hospice was extremely kind in her time of sorrow. Gut wrenching doesn’t say enough. I’m trying to focus on more upbeat stuff now …. My time will be here soon enough. No need to fecal focus on it right now. My glass still half full ….
❤️❤️❤️❤️
Fecal focus lol.
Yea we've had an inkling to our demise from some very kind spouses and brothers themselves this recent past.
I've had to look away sometimes as it is can put a cloud over me.
Sometimes have to walk away, smoke a bowl and sit on the deck to try and get my head right after being witness here. Go fishing etc. Get my head into the work I do from home.
I knew little to nothing of PC when diagnosed and I laugh when I remember a couple months into it I said to my wife " at least with prostate cancer you don't die painfully".
She quickly and forcefully said "wrong"! "No one goes without pain"!
Oh. Shit. I said.
Im keeping that glass half full though like you. Gotta live in the moment.
Still to this day more concerned about wife and family when I go.
Had a good talk with my son a week ago and it was really good as we found good future for my wife. She'll be ok. Minus the overwhelming grief.
Sorry about the morbid talk.
You hang in there too man. Hopin the new Dr. and treatment approach makes these moments good ones for ya.
❤️❤️❤️
Well said buddy …. Love ya ❤️❤️😢
I hear ya my brother. I’ve been on this road 10 + years and am very grateful for those years. Like most of us in this battle I think back to the diagnosis and how I vowed to fight for every breath not yet realizing what Gleason 9 and local mets was all about. Now I understand it meant “uphill all the way” and maybe not reaching the top. I’m a believer in Christ and not afraid to die but would rather hang around to spend time with and help my wife, kids, grand and great grandchildren. I am so thankful to have found this group to read about and trade out strategies and battle stories. .
My progression appears to be ramping up a bit with my latest PSMA Scan uptake to my supraclavicular nodes so I’m thinking some new drug(s) will soon be added to my ATD regiment but that’s just another hurdle. I am ok being the test rat for future med protocols but so far MD Anderson hasn’t had one to join. I will do my part for me, my brothers in Pc and all those not yet diagnosed. I too enjoy a nice bowl of bud to calm me down especially at night when my mind try’s to run rampant with all those shoulda, coulda, woulda thoughts going off in my head. My mets are small and not yet obstructive or intrusive so cancer pain has yet to hit me but those brutal ADT SE can drag me down really bad and a bud bowl really helps me with that. If anyone has recommendations or suggestions I’m all ears.
Stay strong my brothers.
Right on. Im with ya too.
I’ve got a full basket of dignity here, but I want a bigger tub of life.
Right On!
A basket of dignity, bigger tub of life …… and a jumbo tube of skin wrinkle cream …
Just say’in 😂😂😂
Well said brother, all I want is a peaceful end that doesn’t add anymore hurt to my loved ones. Not sure how my wife has taken all the ups and downs so far but she has. God knows I love her so much. Fight on warriors 🙏🙏
Are you talking about cinical trials? If so, keep in mind that every successful medication to extend the lives of the advanced prostate cancer patients was once experimental and access was limited to those on clinical trials. I got over 4 years on Zytiga but at one time, only clinical trial participants could get it. Many of the "guinea pigs" that tried Zytiga and other successful drugs, got quite a bit of time out them.
Because so many of us (including myself) have volunteered for clinical trials, there has been an unprecedented increase in new medicines and treatments that have extended life and quality of life. Many do not work, and researchers learn from those "failures" too - improving medicines and therapies. I put "failures" in quotes, because the only trials where we learn nothing are those in which the trial couldn't recruit enough patients for the statistical proof.
I am not afraid of death, but I'm in no rush for it either, and I prefer to enjoy as much of it as I can. If you mean NCI by "permanent Washington" I certainly hope it remains permanent and well-funded - they have saved many lives and added immeasurably to our quality of life.
In 2015, when I was diagnosed with #stageivpca at age 57, my MO said I was hit at the perfect time as the data from the CHAARTED trial was starting to drop. That clinical trial demonstrated the efficacy of adding a concurrent chemo to ADT with the men getting 17 more months!
nejm.org/doi/full/10.1056/n...
So, had ADT (Lupron/Casodex) in 01/2015 and the started Taxotere a few weeks later. MO added 9 more Taxoteres to the 6 protocol, as my PSA wasn't responding as he thought about 4 chemos in.
He told me" I will give you more chemos until you tell me to stop or the #s plateau"
PSA went from 840.2 to 0.7 in 12/2015, and a nadir of 0.1 in the Summer of 2017.
So, the CHAARTED clinical trial got me the best treatment at that time.
Despite 15 Taxotere sessions in 2015, and 6 more in 2020, after Abiraterone/Xtandi failed, and 13 Cabazitaxels so far with 5 more, my PSA is still ticking up :-(.
In my case, I'm still here cuz of that data from the CHAARTED trial
It is always a tough call to endure treatments and the side effects vs your QoL.
I'm am so very grateful to still be upright even tho the 5 yr survival data said only a 28% chance
Fight On
Randy
I did the CHAARTED trial at University of MN
Thank you for being involved in such a profound trial that totally saved many lives
What you call lab rats, I call heroes. A lot of us are alive today because men last year, 5 years, 10 years + ago agreed to participate in clinical trials.
• in reply toAlturia
I think you misunderstood my post. "Heroes" to our fellow sufferers desperate for a cure, or simply afraid to die. "Lab Rats" to (many of) the mad scientists. I'm grateful to those who were willing to try Lupron + Zytiga + Prednisone.......I think it's helped keep the cancer in check, but has brought on obesity, heart disease, and various other "Potential Killers". QOL is decent, but living with no testosterone and the feeling of a chronic flu induced fever and constant flu like symptoms is not an ideal existence.......I try to make the most of every day, I stay upbeat, have fun, and get out and fish as often as possible. My point was when hormone therapy stops working, and my choices are various chemo therapies that will likely make me sickly, weak and frail, to extend life 4-5 months......no thanks. I also think of my Wife, Children and Loved one's, I'm not going to put them through the burden of caring for me when the end is obvious. If a new trial promises 12+ months with a possibility of a cure, I'd volunteer. Otherwise I'm not interested in leading everyone around me down a dead end road.
None of us know the future Tommy.
It is only false hope when it does not work. Many guys on here have far exceeded their expiration dates when first diagnosed.
It is always a balancing act between QOL and therapies. / risk vs. reward.
None of us will reach escape velocity on this trip. Do it with dignity regardless of the hand you are dealt.
Love it ….❤️❤️❤️
Hey, when both MO and Ro told me they could do no more for me, I talked them into a Modified BAT and hope it will work.. New studies show it helps about 70 % of the guys on it... Darned good odds if you ask me.... At this pt. I still feel fine, but PSA and alk/phos are both climbing exponentially. Life Is Good until it isn't,,,then off to Heaven I go....
ShooterDid you try the LU 177? Might buy you another couple years.
We all meet our maker at some stage. If we can do some good on the way, all the better... I think it is good to advance treatment options for others by participating in trials towards the end of our journey. In the end it is a personal decision, and one made with those who are close to us..
The false hope is the one thing that will prevent me from doing a Trial when my treatment is no longer working. I’ve had a good no great 6 years of this battle, don’t want to make my family suffer anymore.
Maybe you could still find a promising phase III trial?
I believe that you should just avoid the phase I and maybe phase Ii trials and talk to some competent oncologist for opinion.
I personally would like also to avoid going into a clinical trial until I have a standard of care option.
Some places are trying to force you into a clinical trial before you used up all your standard of care options.
I was told 14 years ago to get my affairs in order. Still here.
We do it so that those who come after us might benefit. Eventually there will be a solution but for now we are the guinea pigs. We will all die eventually but some do not wish to die in vain when we can help others who will follow this well trodden path after we are gone.
TommyC - haven’t read through all the responses, but a number of states have passed Death with Dignity laws. Where implemented and a person is at end stage, doctors can prescribe medications to help end suffering.
Killing yourself is not dying with dignity. It's committing an unforgiveable sin for your last act on earth prior to meeting God face to face.
Sorry Chuck, I can't let that pass. Unforgivable sins are not real; inside of Christianity or outside of it. Your faith is a blessing. To you. And I'm so glad it is. I honor you and your faith. I really do. Faith is amazing and wonderful. I know because I am man of faith myself.
But.
It is not an excuse for judging the acts of others outside of one's own faith. Tread lightly on others lives my friend. Life is hard enough as it is.
Suicide is a final act of despair and almost all the religions of the world condemn it because we murder ourselves thus showing no faith in God to help us in our suffering. We are not allowed to take our life because God is the giver of life, and only He can decide its end. I judge no person as only God can know our will and the depths of our soul, but an evil act cannot be called good or acceptable and should never be encouraged or consented to. Fight the good fight, brother. We must not take the easy way out.
I get it Chuck, I really do . You make perfect sense. If one believes as you do.
Faith is not off topic here because we are all dealing with death. And all faiths must be respected here.
God truly does mean different things to different people though!
Me, I'm just starting this journey. And euthanasia is as much a possibility as endless clinical trials and SOC, and all the other choices on offer.
Your view is yours and might have been mine a few years ago. I value you way. But it is no longer mine, or everybody's here. All I'm asking is be gentle. We are all in this together.
Christian Faith is the Holy Spirit's job. Witness if you are called to do so, but please leave sin and guilt to those in the Faith. The rest of us are not going to be saved by them.
God bless you. And your journey. Which we all share.
Regardless of what religion dictates, I will always support Death with Dignity laws. We need to be able to think for ourselves, even when trying to live a faith based life. If you have taken care of a relative who went through the slow march to death - watched unthinkable pain envelope every single breath they take, for weeks on end, there is little chance you could reasonably conclude that such suffering is of God. From where I sit, it is a far greater sin to allow humans to gravely suffer while putting people in jail for animal cruelty when they can't afford to take a sick dog to the vet to be put down. People should, at a minimum, have greater value than an animal.
Compassion causes us to contribute handsomely to cancer research - compassion causes us to contribute to food banks, to contribute to relief efforts following natural disasters, even to help pay for funerals for the many thousands killed yearly by crazed individuals whose rights to a gun far exceeds another's right to life. Compassion dictates that we support the end of needless suffering because some choose to define this act as suicide. It is impossible for me to equate such a decision with a person jumping off a bridge because of a failed relationship, the loss of a job, etc. Death with Dignity and suicide have no business being used in the same sentence.
Tommy, you ask or state that it might just be you... And it is, a personal viewpoint and attestation to your experience and impression of SOC and treatment for your condition. What you might be dismissing though is the possibility of being impacted by a very real and disabling side effect of it all... That of having also experience with depression. It is real and effects many who have developed PCa and suffer through it's garage of therapies. Because your post lays with sounds of desperation, in my opinion, and also a sense of hopelessness. Acceptance and submission. Maybe a little spice of denial. These are all real, and they're all yours, not everyone goes through this experience.
When my RP failed (immediate persistent PSA) and I got into the weeds with my MO in discussion about possible paths forward, kicking every stone... None of my thoughts centered in hopelessness or when offered a chance to participate in a trial (drugs adding a 3rd to SOC double drug therapy), I gladly accepted, but not entirely for my own benefit. I accepted knowing somehow it might help not me, but those who come behind me. Unfortunately I didn't get selected for the agressive arm of the study, but I still participated and moved forward.
Two treatment lines later, and I'm once again shows signs that the dastardly disease is active only one year post chemo... Who knows what's going on?. We don't know yet... But I'm not running a white flag up the pole just yet!
I've stepped in line and will hold steady arm locked side by side with those around me who are fighting too! Step in step we walk toward the unknown, but neither right or left want to break ranks, we all know what happens in a fight when ranks scatter and run, and it's not pretty! Sure... Some fall out of line, whether succumbed to the fight, or loss of nerve, or just because... It's all good, but we remain strong because the gap is usually filled immediately with another able bodied warrior joining the fight. It's a personal decision for sure, and nobody can say what is right or wrong, we each have to choose. We each have only ourselves to look at in the mirror. No explanation needed for anyone on the outside. But to be sure, those standing in line, locked arm in arm, do so, that they might see another sunrise, share another laugh or two, enjoy another moment that makes it all worth it, the existence of the "momment"... But none of that, not one bit, is taking away because they've submitted themselves to medicines best guesses as to how to fix things, even if it's just for a time. And even when the cure, sometimes, is worse than the condition!
So we focus and center on "self"... You could counter your question with a simpler one... "Why do we eat?" Or even breathe? The answer is the same that would apply to your question, because we can! Because we want to...
There's an old sayin, trying to remember where I seen it or read it, it heard it first... But "Everyone wants to go to Heaven, but nobody wants to die!". And that's one of the most poignant and spot on statement I think applies here. There's so much to living, it makes sense so many would want to hold onto it, for as long as we can. Of course there are those that are ok to just submitting to the nature of things, and that's ok too!
But we do what we do, for all our own reasons! Nobody is a lab rat, the condescension thought towards that reveals a personal aversion to modern medicine, and that's ok too. But it doesn't reflect the mood of many who throw themselves into the fight, to fight the good fight, and walk beside death, rather than submit to it.
Best Regards
Nicely said Cooolone. I am locked arm-in-arm with you in your fight, as I am with the others here. In life lived as full as is possible day by day. Honoring the gift of life is certainly a high dignity. So, I wake up every morning and ask: “What can I, what am I able to do today?” Be that much or be that very little, there is so much beauty and splendor.One day pain may eclipse that and the options have gone? Then my wife will know to mix the contents of a prescribed solution, as we have discussed. (We are in Oregon.) As I have quoted before “A life well lived is long enough.” But not yet for me, I am still here, so that proves I still have more to do. Paul
• in reply toCooolone
I'm not running up a white flag, I'm enjoying each day I have, and I'm thankful for the therapy that's holding off further progression......it's not a cure, everyone knows metastatic prostate cancer has no cure, and so far the most effective way to delay it from winning, is the hormone therapy I'm currently on, and I'm okay with that. So, if the doctors told me at diagnosis, you have 5 -6 years if we do nothing, OR 6-7 years if you begin hormone therapy, but here are the risks, ( coronary artery disease, heart failure, obesity, osteoporosis, etc.) I would probably take the 5-6 year option and not subject my body to those side effects.
MrG68• in reply to
I’ve experienced a lot of what you’re referring to. This disease plagues my family. For me it’s not even a question - it’s the 5-6 years option all the way. I wouldn’t even consider putting my family through what I’ve experienced - not even for a nanosecond.
You could apply this logic to many things. It's as if you are watching the Wright Brothers flying a plane for the first time and saying "What a waste of time, nothing will ever come of it!" The human spirit is one of seeking knowledge to better our lives. In my view, God would be pleased with this adventure into the unknown . He is with me every step of the way.
Started on being told I'd die in 6 years if I'm lucky. I'm now 10 years out. Started knowing my PSA was 31. Then the rest of the info. You know Gleason 9, doubling every 5 months. Stage M1 was a nice slam, so I was given Lupron and 2 weeks of casodex, after this Lupron, Lupron Lupron, 2.5 years later PSA started to rise, went in clinical trial at NIH. Now, they're scratching their heads why I'm still around 10 years later. I did aspirin, supplements, anti depressants, retired early, because I read what doctors did to lengthen their' lives who had the disease. I looked at their pictures. Their muscles wasted, that furlong look on their' face. I was scared. But I did allopathic and complementary together, (allopathic is Lupron and Xtandi 7 years on that combo and still going). Besides fatigue I'm still coming down for breakfast. NIH still carrying my ass. Blood counts normal, cat scans, pet and bone scans normal except for arthritis. They're tired of looking at me over there. I don't exercise much, when they fly me there I have to walk through the airport every 3 months dragging my ass while everyone passes me lol. I'm almost 70 , diagnosed at 59. Right now my legs and feet throb from the walk. I see things at NIH I don't want to see, kids with leukemia, sometimes I go in the bathroom to weep at the human condition. I saw a kid last week hitting himself because he had to have a bone marrow. Glass panels has been installed in the atrium to prevent suicide. I think geez I have side effects but I'm alive. Should I be greatful ? My wife has hairy cell leukemia diagnosed in 1995 a long term rare leukemia. She's no stranger to NIH either. So there you have it, bad luck? Fate, destiny, I won't know until I meet the great spirit. I've learned a lot though and I don't know if I'd change anything. I see how people truly are some helpful other reluctantly helpful, some avoid me, I'm a reminder of our ubiquitous fate. I hope everyone keeps their chin up...
A testament to the human spirit, thanks for sharing.
Thanks Kevin, that is a fantastic story that gives me immense strength and hope.
Good for you sir. Hope you get another 10 years.
Yes, when you read the stories and experiences it is truly horrific. Heartbreaking really. Even the more tolerated side effects like incontinence, for example, is still horrific to me. It may be considered as tolerable to begin with, but after 1 or 2 years it’s effects magnify. Add additional other treatment effects to that and it becomes a serious QOL issue.You have to seriously consider your QOL and weigh up what’s acceptable to you personally wrt your treatments.
This is why I continuously point these type of things out. Not because I’m being anti treatment or trying to prove some point. People seriously need to understand what QOL is acceptable to them so have to be presented with as much info as possible to make a better informed choice. Yes, you may live longer, but at what cost?
This is why this site is superb. You get to see all the issues and problems people experience. So although they are horrific, they give you really good idea of what’s in store from any treatment you are considering.
Tommy life is so itself unpredictable and facing unfortunate and unforeseen circumstances. Life is a privilege and never written in the ten commands that we will be here tomorrow and not a guarantee written anywhere. If I could wake up everyday with all difficulties life throws at me and just say thank you for what I have to see what’s unfolding I am truly grateful. I say all the compassionate things today that could help anyone in time is distress hopefully out of all that make sense not they have to listen but I may not to be here to say it again tomorrow. Love yourself and others for what is the person or purpose of this life but too exchange so others can be benefited a choice we we make…
Love all brothers and warriors who can still be blessed
Well that's certainly incoherent. You want to die? That's your choice.
my dignity never recovered after feeling that first prostate biopsy stab, lying on my side on a paper covered doctor's couch with a probe stuck up my ass. APC with mets is one humiliation after another (on the exam room table, in the bedroom, in the mirror, etc.), until you don't notice humiliation anymore.
I don't want to leave this life with a fogged brain and in pain, but at this moment in time I would like my epitath to read "We tried everything". if someone in the future benefits from my experience, then i will be a lab rat. And, I am hoping my MO can summarize my file with the same 'We tried everything' before he closes it for the last time.
Well said friend.
Meaning and purpose can be hard to find in anyone's life. Sometimes it comes as it does with us, in the face of suffering. Even death. Each of us responds as we do. And no one has a right to judge. We are all on a hero's journey when it comes to how we face our mortality.
Kitchen Sink : Holistic protocol, Piperlongumine, 2k mg daily , get Nitazoxonide, 1000 mg 21 says, Get Nitroxoline , go to europe if you have to 750 mg 14 days. Fenbendozole , 220mg. 4 days a week,. Amur Cork Bark extract 1 ml daily, Modified Citrus Pectin, 5 grams daily powder in smoothie, through all that at it for 3 -6 months see it if helps the integrative kitchen sink. Go keto no red meat, fried, no sugar, lose weight. exercise. suana 20 min 3 x weekly.
“Sometimes I go about pitying myself. And all the while I am being carried on Great Wings, across the sky.” - The Sayings of White Eagle
I for one offer my thanks for those who have gone before and signed up for clinical trials to help blase a path of treatment for something we know that there is no "cure" at this time. Feel free not to participate and possibly help yourself....or those who will be diagnosed in the future. I personally do volunteer work to help ensure that these studies are well designed from a patient perspective and that we make certain that we do the outreach that allows all of those who wish to be are included and can enroll. You do you.....
Tommy brings up a very good point. At a certain point, it's time to go home. I said no to hormone therapy because I'm not going to live that way. I've talked to men who are on this treatment, and all of them said it sucks and that they often wish they were dead. What's the point of that? My wife even commented that many of these guys who are enduring endless treatments just to stay alive don't really consider how hard this is on their wives and children dealing with this gross, new castrated version of their mate on a daily basis. She said that many guys use the wife and kids as an excuse whereas the real reason for the ongoing suffering and nonsense is their own fear of death and judgement. Get in the state of grace and pray with faith and confidence for healing and trust in the Good Jesus to do with you as He will.
As ever, that is a personal view based on personnel experience. For me, I've never been highly sexed and have had a plutonic (and very happy) relationship with my wife for 10 years already. Being the "castrated version" is of no consequence, but as I say, we are all individuals. I truly have no fear of death, but do have a desire to help others that come after me. Maybe others don't feel that way - that is their choice.
Does hormone therapy beat dying? I can only say for me, I love seeing my grandchildren. I teach them martial arts, we work with microscopes, go to watch them in sporting events. Sex isn't everything. You may even have time to concentrate on spiritual matters. People who go through a prostatectomy have the same trouble. If you don't wanna hang around then , choose what's best for you. No one can make that choice for you. Yes hormone treatment has side effects, many can be controlled some can't. You can learn to live with them. There are a few antidepressants that can stop the sweats and lift your mood. There are reduced dosages some choose to do. Whatever it is I think life is worth living so I take what works, for now.
Amen. A reasoned and experienced judgement for yourself. Mine might be the opposite, and I won't know for some time! But I honor your wisdom.
What a wonderful and insightful number of responses to your post.
There will probably come a time for most of us when we have exhausted most/all SOC treatment options.
What's next? We each need to answer this question on our own, with guidance from our medical team and where ever else information is available. Knowledge is power. Don't miss out on a potential lost opportunity by ruling out participating in a clinical trial.
Thanks Hoping, I have been wavering over joining a clinical trial based on possible SE but if I'm eligible (and there is only a 6% chance of that), I will join it for the benefit of others (and hopefully me!)
Great to hear. I have participated in 3 clinical trials, none of which resulted in any serious side effects for me. Unfortunately, none of them benefited me either. But, I am glad to have participated in these cutting edge trials. I would do it again at the appropriate time.
Hopefully each person knows and feels when it’s time to stop. I also think they do the experimental medicine if not to help themselves to help others. I’ve had people that were Dying say I’m at peace and I fought a good fight,It’s time to MoveOn.
Because it is our chance to give back. What a gift we are giving those that follow us. Then there is that small chance we will get better or even cured. Just look at the recent post of a guy that responded remarkably to AMG 509.
It all depends on the person l think my husband had pancreatic cancer and went through horrendous surgery lost so much weight, no one recognised him but me ,and was told he had 3 months that was 30 years ago. I have incurable cancer ovarian but l will try anything to keep me well and have a good quality of life which l have ,I know we have both been very lucky l also have a brain tumour thats managed with a programmable valve. But l love life & will try trials or chemo whatever it takes were all different hopefully lm not going anywhere apart from holidays hopefully but ld dont feel ill so lm very lucky & my heart goes out to those who are in pain. My love & positive ❤ thoughts to you all yipeeee we've actually had a heatwave
In the northwest of England this week. SheilaFxxx
Your life, do whatever.I tend to believe as you do.
Tommy. This thread is a testimony to how valuable a post like yours is. A vulnerable and exposed humanity, such as what you posted, calls us all out of our private struggles and into our deepest shared humanity; how we face our loves and our lives when death is stalking us. Thank you for your humanity, your vulnerability, and your wisdom.
As a friend wisely said when we parted; " suffer well my friend!"
Thanks to all of you for your replies. It is great to hear about your experiences, your thought processes through this journey and your faith/hope/love.
Despite the cancer (stage 4, distant mets) I consider myself fortunate. Initially I was miserable, I was told to expect to live only 18-24 months, the hormone therapy was kicking my ass, and I was planning on getting an orchiectomy.
Now, 22 months post diagnosis, life is mostly good. My wife and I were blessed to find our way back to each other and the last year with her has been one of the best years we’ve had (in 43 years of marriage). I can’t do a lot of the things I used to do, but I stay fit and active. I enjoy my kids and grandkids, and our extended family. This summer I have danced at the wedding of my favorite niece, camped (several times) with my grandson and with my son’s family. I’ve hiked new trails, tried new foods, enjoyed art, music and play. I’m heading out again next week for some camping and all day tube floats with the grandkids.
The end will come soon enough, and at some point any hope of QOL will be unsustainable, but until then I’m going to keep moving ahead and looking for and sharing delight. I’m open to being studied if it helps others, and finally, when the pain overrides the joy of living - I plan to dance with death at my own time and on my own terms.
Hi Tommy - Unfortuntely without trials no new treatments - as you say shame we are the ones leading the way so to speak - another new trial in the UK looking favourable ACE trial kindest Raoul - P.s. I am 5 years to go diagnosed so I dont expect anything to work but will be pleased if does - glass half empty approach <- ex military !
After being diagnosed as BRAC2+, I started on Lynparza. At the time it was only available via clinical trial participation, not yet FDA approved. My MO was able to get off-label approval for the drug. I was on it for close to 2 years, with PSA undetectable, until it ran its course. Hoping it will work for you too.
I am currently on a combo chemo therapy of Carboplatin and Cabazetaxel. 10 rounds so far. Have not had Docetaxel previously.
Also looked into BAT, even traveling to Johns Hopkins in Baltimore for a consult, where Dr Denmeade practices. Was told it would not benefit me. In addition, they have no current BAT trials.
I hope that one of the new PARP combo trials will be a possible available option for me, when needed. Have identified one each at Johns Hopkins and Dana Farber.
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