For the record, there is currently NO cure for prostate cancer!!!!
I hate the posts that are being put on this site, including yesterday of " many studies" support this alternative treatment but then fail to provide details on what scientific studies were done, where can we find them, thus it is ALL TOTAL BS to put items like this on this site. It is destructive and cruel to do so! Please think about your posts before you put them on our site.
Most of the current treatments for advanced prostate cancer and those in trials are meant to extend life. Sadly, most of the money is being spent on finding a drug/combo that one can take as with diabetes, making it a chronic disease but we are NOT there yet.
IN terms of alternative drugs of any type, NONE will cure cancer of any type. What some may do is alleviate some symtoms, side effects etc. and in some cases, boost the immune system. The majority are a WASTE of money, time and the mental stresses of looking for the holy grail that does NOT exist.
Common sense is one should stop smoking, drinking alcohol and eat as healthy as possible. ALL of these measures will reduce the pressures on our immune system to be able to fight off the cancer longer with less side effects when one is taking the drugs we need to extent our lives.
We are ALL going to die of something, if we are lucky/or not, we will die of or with prostate cancer. It is a fact, so I strongly recommend that men do NOT spend the rest of their lives looking to find that which does not exist.
I strongly recommend that all advanced PC men do research and find out as much as possible about the current drugs being used for the short term effect they offer, as well as to explore going on drug trials. Sadly, some research is being held up due to not having enough of us going on these various drug trials and as one who has been on four, I urge you to consider getting on one or more if possible. You might not extent your life, but your contribution might pave the way for a cure or drug that lasts longer and help the next generation of men-that might include your son, grandson or others in your life.
DO NOT doctor shop until you have done your own research and are able to converse about treatment options, as this now bad habit of doctor shopping does little but to waste valuable resources and consume your life, instead of coming to peace with the reality of our disease and NOT let it run your life. Knowledge is power, and freedom. DO NOT let prostate cancer dictate or run your life. YOU have little enough time so enjoy what is left.
TRUST ME, IF AND WHEN A CURE IS AVAILABLE, WE WILL ALL KNOW IT WITHIN 24 HOURS!!!!! I personally do not see this happening in the next five years perhaps ten years from now, it will happen. Cancer cells are brilliant beasts, in fact perhaps the perfect soldier of war, except when they kill us, we get the last laugh as they die with us!!!!
I repeat my montra, of
LIVE LARGE, LIVE WELL, MAKE UP A BUCKET LIST AND DO AS MANY AS YOU CAN, LOVE THOSE AROUND YOU??????
Due to many requests, I will provide you with how I managed to stay around after 26 years and as it appears my latest drug of abirterone is working well, might get a few more.
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billyboy3
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I think you should read the comments that have been made on this topic. That said, this site is not mine but one I have supported by many hours of volunteer work going back over 26 years! I have helped to raise millions of dollars plus increase public awareness thru the media I have been engaged in.
Thus, I think I am deserving of a voice in matters involving those inflicted with prostate cancer.
This site has served to support those with advanced prostate cancer, provide insight into the various new drugs and other medical advances and treatments available. It is a great starting point for newbies, as well as those of us entering into uncharted waters.
Those of us on this site are all going to die of or perhaps with this dreaded disease. It is NOT a place for those who wish to exploit or spread rumours and false stories of a cure, and in my view, it should be a criminal offend for anyone to post the rubbish I see to often now, as this creates false hopes, and sadly, to those not yet knowledgeable, that some crazy drug or antidote is available to cure them.
I take great offense at these types of mindless individuals who post trash on our sacred site! To inflict harm on another person in need, is a sin beyond comprehension.
I have lost some dear friends to this curse and will not sit idly by while some come here to harm others through gross negligence and indifference to the effect their words have on the poor souls who come here.
This site is gold to those in need and we should not let it be abused by the Charleston’s who appear, cause needless upset and pain, and leave unchallenged or not made to pay for their serious transgressions against humanity!
And btw, I really like where you are coming from in your post as well. IMHO this site is priceless to men dying from aPCa and their families. For my own perspective, I’d like to see things pretty much as they mostly have been. Keeping it real with T_A’s sound medical advice , discussing current and upcoming legit medical treatments and good camaraderie as the basis for this group. Us Croakers don’t need the misdirecting extraneous flack and discord that lands here sometimes. Croaking IS serious chit, keeping it real works best for me.
At the request of the women in my life I am no longer allowed to say "dying of cancer" I am being made to say I am "living with cancer" My life is no longer mine. Hahahaha
Yea that sounds nice , more positive and upbeat. I like that . The hammer doesn’t want me to mention it at all. lol. I’m adjusted to the reality of everything. Over time I got used to it, accepting it somewhat. This is the season to be upbeat and jolly , a family time. What you are doing works seasonally too. Kewl
If suffering is a direct result of a fear of dying as Buddha said I will never suffer. While not welcoming the inevitable I am definitely ready for what is next, and I am as healthy as ever. Except for that damn cancer
I understand where you’re coming from. I am right behind you at 19 years. Everyone’s body reacts differently to treatments. Some of us may be looking for that holy grail - which is not there, but that search can provide the member a much more positive outlook on things. There’s that saying, “Mind over matter”.
If that’s what some members need to do to keep fighting, I think it’s fine for them to post their “discoveries”. You, as a member, can choose not to read that post. You can delete that email and move on. Read my bio. It details all the friggin treatments and meds I have been on. Your bio provides no insight as to how and why you have survived 26 years. I think that would be helpful to others.
Just my thoughts relative to your post and no details of your treatment path in your bio.
Overall, I agree with 98% of what you say!! Should non-SOC treatments be covered here? IMHO, if we know that a substantial number of men are acting against their own interests because of what they read here, then indeed discussion of such non-SOC treatments might need to be limited . 1st priority here should be "do no harm" !!!!
Thus we try other means to limit the harm SOC causes. I myself do non SOC BAT along with my SOC. Just trying to keep my beast addicted to testosterone so it doesn’t find a drug resistant path.
I have an appointment with Sam Denmeade at JH in two weeks. What some forget, including my MO is that one time most of these treatments were non SOC. I am hoping to be able to try BAT.
Thanks for your candidacy. I'm assuming that you are talking about advanced PC and not contained PC, because as far as I understand it, contained PC has quite a high chance of being cured. Unless I've got that wrong. I did hear a report last week saying that no man will die of PC within 10 years - so there's hope - if we are to believe these reports.
Also there is no cure for mortality either, but we can try and mitigate it arriving earlier than it needs to, by making some choices in life.
Finally if there is no cure for advanced PC, then I tell you what, for you to be still with us after 26 years of having this disease almost kind of shoots your statement down in flames. But we are glad you are still with us and hope you are for years to come. Have a great Xmas.
Just a few thoughts on your obvious passionate post:
Regarding cancer, there has to be a definition of "cure" as defined by the medical oncologic community. In the past, for some cancers, oncologists have defined cure as there being no blood test, imaging test and physical exam evidence of residual disease following treatment. The length of time before the oncologist would declare the individual "cured" varied by the type of cancer. Sometimes it was 5 years; for some types of cancer it was longer. If, following treatment, the individual showed no evidence of residual disease but had not yet reached that defined time period, they were said to be in remission.
Prostate cancer confined to the prostate, or with local spread not extending outside the pelvis, can be "cured" as evidenced by long term studies.
There are current aggressive protocols being utilized for oligo metastatic disease (RP or prostate radiation, MDT, triple therapy and additional pelvic radiation ) at COE that have yielded very promising results as to undetectable PSA and absence of disease on imaging for multiple years following the initial treatment. Will some of these men be actually cured? We don't know yet. Not enough time has elapsed to make that determination. What is enough time? 10 years? 15? 20? Who knows. If my oligo metastatic disease remains undetectable for 5 years, I will be very hopeful. 10 years I will dare to believe it is eradicated. But that's me.
Some people need hope. These new aggressive treatments/trials are not false hope. They may work. If the hope of a cure helps someone get through life, great! It's not up to me to tell someone they will never be cured because I don't know.
I am coming up for 10 years since my RP at 58 for my 'contained' but pathologically locally advanced case. G3+4 with tertiary 5. Established EPE and PNI. Clean margins and no svi or lymph involvement. I added adjuvant RP as a belt and braces approach to try and knock out any micromets lurking about. No ADT. Thankfully so far all subsequent PSA tests have been undetectable. Does this mean I consider myself 'cured'? Not 100% but it's looking good so far. I have no idea if my lifestyle changes, improved diet, high levels of exercise, ideal BMI etc have played any part in suppression of any recurrence. But I do know I feel fitter and healthier at 68 than in my 50s!
Ten years post treatment with undetectable PSA I would be living life and not giving much thought to the cancer. Nothing is 100% but it is unlikely to recur and if it does it is likely indolent/non aggressive or it would have presented before now.
I tell my wife that there is no such thing as false hope. Hope is hope, nothing more. False expectations however can be something totally different. God bless.
just for the record, this site is for advanced prostate cancer patients. This means to me that any chance of a cure has gone, so my posts are aimed at those of us in this situation. There are lots of things going on so I too expect some drug will be created that will make our cancer a chronic disease as with diabetes, until then, we go from drug to drug in short spurts to the next one/set.
I will not lie or give false hopes to anyone in this stage, that would be gross negligence in my view, and most certainly not right as men are entitled to know the truth of what they face and where they are at. My living some 26 years is proof to not give up the ship!
What advanced prostrate cancer means to one may not mean same to another. The title to this board does not have to exactly match the medical definition. So save it.
Points well taken billybo, people char what they believe the truth may be, can't fault anyone for that, the positive affirmation is that, positive. Cure don't look for a cure, look to put your biological system in balance, That is Dis-Ease Free. We know that ailments are stress based and mineral deficient, so that Is where to start, medicine and science will NEVER cure anyone, it does not make money. Cheers
There is no cure for Prostate Cancer only management. The closest thing to the cure is knowledge of the beast. I was told I had 3 years to live. That was 15 years ago.
You know, it's funny how people view time. If you get in a space rocket and aim to go as fast as possible into outta space, it has the effect of slowing time down. You could live longer - relative to those on earth. To them they see you outliving them, and may consider that as some kind of victory. But relative to you, it will be the same time locally and ot they who aged quickly... relatively.But what would you rather have? Outliving everyone, by yourself in a space rocket? Or living with your friends and family albeit a considerably shorter time.
What you do with your time matters.
The shorter time you have, the more it matters. I think that an alternative you on that rocket would swap in a heartbeat.
Understand and feel much as you have stated. I'm 6 1/2 years in, stage 3aPN1 - Gleason 9. I'm at a point where I am in remission after 2 years of ADT starting just before salvage radiation. I studied medicine for several years on way to being a surgeon (I came to a decision to stop for personal reasons). As a result I have very in depth conversations with my team of doctors. In addition to PC, I also have a Mitral Prolapse/Regurgitation. I try to help others deal with being diagnosed, and yes there are many times I encounter the belief that alternative treatment can somehow "cure" their cancer. It is part of the narrative now in our society that medicine has a "magic pill" or "treatment" that will suddenly change everything. -- The toughest part is to realize that the variables in diagnosis and treatment are numerous. Your prior lifestyle, environment, genetics, etc. There are many buzz words and while they have meaning in their specific context, their application is not universal. In my case - my paternal grandmother died when my father was 12 of ovarian cancer, a paternal uncle & my father both had PC (both lived to 90). Beyond in my case, my father kept journals his entire life and I found out at 50 with the "big physical" that I have had everything my father was diagnosed with up to that point within 3-5 years of my father's diagnosis. Genetic testing showed no mutations and put me in the clear there. -- My response to diagnosis was very different than most, probably my medical background), and I never have looked at it as a "death sentence". I have approached it as a disease/condition that I now live with. We all react differently to medications & treatment, biologically and genetically we have our own unique mechanisms. I have found a major part for me was to change my lifestyle, especially my diet and nutritional balance. I caution anyone about not having conversations with your doctors before taking on alternative treatments. Many are not founded in solid trials or evidence. Many are observational which opens up the Pandora's Box of lifestyle, diet, exercise, environment, genetics and how they impact a treatment or medication. Understand, we all live with cancer, it is matter of if your body/immune response deals with it well. There is little understanding in what causes PC, and this makes a "cure" difficult. ---- I have second opinions with my doctor's blessings, and I ask questions, I keep information open on anything that doesn't feel right. I talk with others and talk about their experience. This forum has been wonderful and helps with information, emotional support and just plain staying in touch with others dealing with cancer. I wish everyone well, and give caution to jumping into any treatment - standard or alternative without being informed, asking questions and realizing that none of them offer guarantees. It is important to understand the path dealt to you and build support by with friends & family, but especially with your doctor's. I have not encountered one who wasn't compassionate and aware of the difficulties cancer presents.
Very good post. I am much more into the scientific and proven medical treatments that can be altered and played with. I have NOT found in over 26 years, anyone who was cured or had dramatic success in any alternative approach, period!! Living a healthy lifestyle no doubt assists the body and immune system to keep at it and be able to take the strong side effects that the drugs have on us.
Living with cancer is the key not having the cancer run your life, a hard thing to do in later stages.
Anyway LIVE large LIVE well , start the bucket list and peddle to the metal!!!
To put it in perspective the reality is that the majority of us will die with PCa not of it.
There is indeed a lot of BS out there which raises false expectations.
Equip yourself with reliable information from clinical trials and well conducted reviews in the literature. Google is pretty good. Being well informed helps you to have intelligent conversations with your physician.
Now to those starting on ADT there is an important MRC trial called PATCH from UCL in the UK comparing standard ADT with HRT (Estradiol) patches. HRT is just as effective but prevents bone loss and metabolic problems, and gives better QOL. The downside is breast enlargement but that can be dealt with. Look it up snd read all about it.
HRT is now with the regulators for approval of new indication.
I’ve been on estradiol patches since 2019. I do have man boobs but I’m going on 81 so who cares? The patches are way better than Lupron et al as you say.
billyboy3, we can tell you are an intelligent wordsmith but many of us here understand the meds we are taking may kill us but we want live as long as we can, so stop throwing cold water on our prays , hopes and dreams.
my aim was not to have one give up hope, I have not survived this long because I gave up. I just cannot stand the false crap that some post here as it causes great pain and suffering g for those not yet knowledgable about the realities of this war!
Congratulations on your 26 years! Wishing you many more milestones ahead. Personally, I will always hold out hope for a cure. However, if a durable remission comes my way, I'll embrace it wholeheartedly. To me, a durable remission is just as significant as a cure. Warm regards.
While I fully agree with much of you, extremely lengthy, post it seems like you got out of the wrong side of bed and hit you head creating a angry message of a dismal outlook. Often emphasized with CAPITALS!!!
I personally know if several cured, based on the standard of no reoccurrence in 5 years, men first diagnosed with prostate cancer.
A few were Stage 3 most 2 and one 4.
My experience with cancer started with testicular in 1974 - obviously cured. However even for that Cancer there isn't a treatment that claims to cure.
In 2015 I was diagnosed with aggressive, G9 prostate cancer.
My history is not part of this but message me if you must know.
I was told that I would die with not of this Cancer Not a death sentence BUT a LIVING sentence.
Very easily you could have made you point in less words, no hostility, and no CAPITALS!
all of my posts relate to Advanced prostate cancer that has escaped the prostate and spread into other areas of the body. For your information, I was having an MRI done last night as I responded and memories of my best friends dying with pc came to mind-as it does when I go into a hosptial. The suffering they went thru during their last days is beyond words to describe. Thus, when I see stupid, uneducated posts making false claims, you are 100% correct that get upset. During my many hundreds of hours of volunteer work with pc patients, I have seen far too many who waited to get proper treatment because they believed the wild storied they read, and sadly, by the time they realized they had been fooled, it was too late for any long term treatment, so they died FAR TOO EARLY.
Anyone who thinks I am mean, I say, go spend a few days at any cancer hospital, then come back and tell me that we should not ban, remove or otherwise NOT allow those who speak. nonsense to post on our site. MY best friend would not listen to me and stayed on mono therapy for too long, instead of my three drug regime, and he died after only 6 years. His last words were, ' I WISH I HAD LISTENED TO YOU", he died the next day. I am still heartbroken over his demise, because he could have had more time if he had started on the proper meds early on.
Well, that's certainly the case. Indeed about 50% of lukemia cases are cured as you suggest. Its a special case, compared to other cancers. It can be treated differently due to various factors that make it more difficult for other cancers.
I think its worth noting that lukemia accounts for about 3% of all cancers. So roughly you're looking at 1.5% of all cancer cases are cured for that specifically. Something like that?
I'm not splitting hairs. Any cure is a welcome as I'm sure that those 1.5% of people will agree. But IMO it's not comparable in terms of possible treatments.
Could be......... But back in those days smart guys would tie a string to them when the wife was setting the table. So during dinner they would swallow the mushroom whole and when the wife wasn't looking just pull them back out before they hit bottom. And this was way before A.I.
Three years ago my urologist told me of a farmer who was his patient. He was diagnosed with Pca and had a RP. Few years later his Psa is climbing and doc says he needs radiation and farmer says no. Few years after that the farmer comes back with horrible pain in back and hips. Psa of over 7000 and Mets everywhere. Doc gives him a 3 mo Lupron injection and his Psa drops to 4. Gives him another and Psa drops to 1. Doc doesn’t see him for several years because he has hip pain and figured the cancer was back. Nope, cancer free. He did however need a hip replacement which he got and went back to farming. Doc says that is a 1 in a thousand case. I told my new urologist this story and said I figure it is a one in one case. He smiled and said” excellent observation, but we’ll never know because few have the courage to try something like this.”
It’s interesting that some people call my decision 24 years ago foolish and yet a few will call it courageous. The guys that seek out alternatives have my admiration. Something to think about almost 25 years ago I was diagnosed Gleason 3+3 and refused treatment because QOL trumps LOL in my book every day and there are guys who took the SOC route with similar 3+3 Gleason and got here in half the time.
The possibility of 3+3 spreading was about 2% according to some reports. Pca Gleason scores can change. When I was diagnosed the consensus was it remains the same. Mine was going ok until I had a bout with Covid.
Lot of wisdom here K. I'm with you, as long as i don't have to adopt your, "It's just a flesh wound" approach.
Seriously, as long as I can enjoy life, without inflicting suffering on others, I'm good to go. Yesterday was a tough day, today is a good day. So who knows about tomorrow.
Rotflol …… “ flesh wound “ …love it. Well it’s kinda what I have to work with sometimes. No biggie. That’s pretty funny … I know you and I have considerable similarities buddy. Both have been and are …. thru the wringer now and then but here we are never the less. Still looking ahead with a positive mind set. Yessiree….. my friend. I’m pretty upbeat and feeling it today. Things I’ve been trying to get reset / normalized again have actually responded the way I hoped. Thumbs up . Big morale boost.
do your best, if in pain, try other meds, oxy codeine immediate release works for me. Do not let yourself suffer if drugs will take away the pain. Even if you left stoned little, better than trying to keep your head from exploding from unchecked pain!
I take oxycodone 20 mg immediate release and chew it like chiclets, 5 mg at a time throughout the day. The immediate release knocks the pain off in 15/20 min so is ideal for us!
A fight to get here now but I would not relent until I got it as it works great for me!!!
Oxy is pretty good. Much more effective than norco imho. I get Vicodin 15mg X four times a day. I can add up to 20 more mg per dose if I feel like I need or want more. Kaiser is endlessly trying to go to take my pain meds back. I also had a script for 20mg hydromorphone for break thru pain but they took that back. Later they are going to switch me to time delay morphine when things click up a notch or two.
I do not like time release, for a number of reasons but whatever works to allow you to function and have quality of life is what you should take. I found it shocking how I had to fight to get the immediate release-as is supposed to be addictive, but is not in my case, after years of use. What it does for me, is to live and only when the pain hits and is about to take top of my head, do I chew on my pain saviour. I sometime wait to long to take that hit as I have a very high pain tolerance. but so far, It has worked and within 20 min, I can run around again-ha ha, and not end up in my bed.
Sadly, for those of us who end stage disease, I fail to understand that even if our pain drugs make us addicts, like who cares??? Why would they want us to suffer is beyond me, but such is the medical system where I live.
The only side effect I have from immediate release oxy is constipation, which I can control by taking more fluids and the occasional suppository.
Well clearly you have a good grasp on managing your pain and good tools to manage it with. I like your approach.
In a discussion about my pain meds, recently, with my palliative care doctor, she said medical caregivers don’t like to empower their patients with addiction. About her reluctance to keep my pain meds going. I told her that she didn’t do it, I’ve been on opiates for over 6 years….this for meds that were expected to be needed for a couple - few weeks , or less, before I croaked. In a shock / surprise to everyone, I’m still here 6 years later and still wracked with met caused bone pains. That if I quit right now and went back to hospice, in hospice they would just load me up with opiates anyway lol. addicted wise, I asked her if she can she say that , in her medical opinion, that I’ll actually make it just to Christmas ??? What is the likelihood. She didn’t - wouldn’t answer that question. We , all my medical team, “ know “ the answer to that question. Plus taking my opiates away would leave me writhing in 4-6 level general pain with 10+ breakthroughs. Just keeping me comfortable, at this point in time, that is the main point.
It’s exactly like you say, “ who cares “….. what’s the most important / appropriate direction . Taking our pain meds isn’t the moral high ground or appropriate for a dying cancer patient. Seriously. lol
great post, please set it up as a new post. I would like to see some of these docs go thru the pain we do and then come back and tell us, sorry we will not let you get relief!!, like hellm, no in my lifetime!!! I would not last a week if I could not get pain relief that works! just for information sake, there are days I do not have to take any!! whereas when on oxycontin with its hard shell, had to take daily in order to survive but in the process this is where-my opinion, the addiction starts, but for us guys, do whatever it takes to make it thru the day!!!!
Totally get what you are saying. I think I have everything ready for my next phase which hopefully won't be for a while even my "euthanasia Kit" If you haven't read the book Being Mortal it help addresses some medical things like your knees and how Doctors think about medical treatments when cancer is in the picture. For me I needed a way to tell my loved ones when I was ready to go. "When I can no longer sit up and eat ice cream while watching sports it is time to go" I feel relieved that my people have concrete answer for when I am ready. Hang in there brother
Glad you recommended "Being Mortal", I found some great ideas in that book.
While we lived in Oregon I had all my ducks in a row (a little college football humor there) for a Death with Dignity. Now that we've moved to Washington I have to redo the paperwork and permissions. I want to be all ready to go on my terms, I just want to make sure that no one expedites my exit...
yes, just be careful, as there are laws and those who assist can be charged and that would be such a nightmare to have helped someone in great pain and have a system put you in jail, but if this were your pet, and you let it suffer, you could be charged, crazy world. I hope I am able to go out on my own steam, but one wrong side effect or cancer getting into organs etc. and one could be prevented on one's own.
As a father's rights activist for many years, I can advise that although more women try to end their lives, men are more successful as we drive into walls, big trucks, or shoot ourselves, whereas women use drugs and then either throw up or call a friend to save them-I have done this four times in my life. Never had the chance with a few guys I know. that depressing news out, stay well live large and live well
I can enter hospice anytime I want, if I get to a point where I know it’s time … I can just do that and they would make me comfortable and take care of me to make things easy for me. The hospice people are amazing. I just have to give them the nod and it’s done. I’m glad I have that “ out “ and don’t have to worry about that side of things.
Seems like a lot of things are universally on our minds …. We’re brothers with a lot of commonality.
have not but will get it today, yes you are doing the wise thing, live large live in reality and ensure that all those close to understand the need to quit when the time comes. I have seen too many men rotting in palliative care for sometimes months, living on morphine drips, sorry to those who think it criminal to not what to suffer like this, but I suggest you spend time in a palliative care facility and then come back and tell those of us who will let go when we are ready, are NOT wrong, but in fact the opposite as I do not want my daughter and grandson to see my disintegrate before their eyes. Leave them with good memories!!
I moved in for the last 6 months of my dad's life along with my wife and we were his primary caregivers. Quite possibly the toughest time of my life while at the same time being the greatest time of my life. Got all the family stories etc. Made memories my siblings just don't have. Don't think I would trade it for anything. I also saw my Father in Law die in a horrible fashion, as his youngest daughter kept taking him to ER to have lungs drained while he was in hospice care at home thus prolonging his misery. The lesson to be learned is to have a well thought out plan and follow it. My father did us all a favor as he had everything written in a book and we followed them to a tee and dying was easy
well said, great post, please do it again in a bit under a new post as ALL need to read and understand the realities of where we are at and the need to have our lives in order! if not for ourselves than for those left behind!!! I am working very hard to clean up my life to leave it simple for my family. I have had to deal with others who left a mess behind and the wars and breakups that happened were tragic and avoidable if one really grasped the reality of end of life and the need to make life as simple as possible when we leave. We owe to our families this small task-our larger if one has lots of hot rods etc. to get rid of. later my friend stay well
Thank you to you, scruffy, brother Kal and not least Carlos for this conversation. These are the shared thoughts and feelings I always feel belong here in the "advanced forum". Among other stuff too.
As your post originally pointed out the topics here in the advanced forum stray into in false hope for desperate brothers and sisters causing a quick demise. Wasting precious time when researching real science, medicine would be so much more beneficial to them. Giving an ability to deal with the realities of their condition.
I realize your post, some of what you wrote may sound a bit rough around the edges to some but I understand that. I know I have bit my tongue many times. Someone posting with G9 and decides on only one out of three combined suggested treatments and will start eating blueberries and going to the gym to replace the other treatments. Times like those are often and I feel like screaming WAKE UP! Or sharing that the non SOC is what works for them even though they had proven SOC as well. Arrrrrgh.
thanks, I feel bad in one way but cannot close my eyes after what I have witnesses far too often. All of end stage guys need to stand together, yes offer different approaches etc. but not let ourselves be used-even if unintended, the damage can be huge, stay well boys
ya my girls have eulogies written, secured a venue and a party planner for the wake, payed for the cremation. We are Beyond prepared. They also get to decide on home improvements as they will be inheriting the main house. Getting ready for kitchen demo as we speak. Don't want to leave them with a mess
That is sort of funny in a bizzare way! I am selling my last four old cars for same reason, and getting my papers in order. I have to get my divorce finalized after six plus years- not a good time period in my life but was in my bucket list! As was my trip into the jungle, etc
Which state are you in?? I live in Edmonton Canada but have a place in Arkansas - yes a true redneck at heart!!! Haha
I am in Western AZ right along the Colorado River. Mid 70's today and I am cold hahahaha. To add to the weirdness the first one that dies gets their name tattooed on the survivors asses and every time that name is spoken you have to slap your ass
Your out of my way to get to my us home but I may bring down a 944 turbo Porsche to hat needs some final touches done and I have a guy in California so maybe after Xmas we can see up a meet!!??
That would be fun. I am in and out of CA as I grew up there and have many friends and relatives living there. Currently driving M240i. maybe a drive is in order
Let’s see how the next six weeks go here. After that, I will take a break and either take my Porsche to get tuned up and go to my place in searcy ark, or somewhere warm/hot !!
That would be so much fun. I did that about 15 years ago with a friend dying from brain tumor. He came here to the river and we spent 5 days of nonstop fun and a little debauchery, some of my best memories making lemonade from lemons
PC is an umbrella diagnosis. It covers different types of disease: contained, metastatic to bones, metastatic to organs, metastatic to nodes only, high PSA, low or no PSA. Each patient is unique: genetics, health history, habits, personality and response to treatment. SOC was developed to treat the largest group of men. It gave my husband the usual roller coaster ride because he is an outlier, in a group of men that are <10% of all PC patients. Nothing really worked until his brilliant MO tried a treatment that didn't work for ~80% of PC patients. It did work for him, he was a super responder. Now the MO sees him only once a year, to congratulate his star patient in remission for four years and counting. He is a lucky outlier that finally found the square hole treatment that fit his variety of PC after 11 years of trying. Something else is going to kill him: a stroke, aortic aneurism, valve failure, shock or a car accident.
Please don't say flatly that there is no cure for PC. When you destroy hope, you kill the will to survive. There was no cure for my dad in the '80s, but in the 40 years since then cures have been found for some men: my brother's PC was found early and treated with radiation seeds successfully.
I totally agree and if my posts did not indicate that, my fault. The posts I responded to had ZERO validity and only added stress for those who have not yet accepted the medical treatment that work.
I didn’t see the posts you were responding to… but I agree that any charlatans should not be heeded.
I think us with this ‘thing’ will all have our own slightly/very different way of approaching it… and so adding in some extra stuff on top of SoC is everyone’s own prerogative… sharing that info is vital for a lot of us, as SoC alone does not yet have a cure… and maybe a vegan diet rich in sulphurophane may just give an extra boost to us. Good luck to you… and all of us.
For the record , some forms of alternative treatment can assist in terms of some health benefits etc but NONE replace getting medical treatment that is of a scientific nature!
There is a big difference, add a few tinctures for pain reli f or constipation etc but NOT to fight the cancer itself!
Not to argue the point but I was referring to advanced prostate cancer patients, where there is currently no cure. Your husband and I am glad about this responding and would like to know more, however, unless I am mistaken he has not been cured but rather, has managed to slow down the progression as have I, for some 26 years.
The hope I offer is I am still here, I have done on drug trials, if not to help me then to pave the way to help the next set of men coming, I have raised huge amount of money, opened a centre for prostate cancer support.
I will not lie or make false statements of offer false hopes, and stand by that. I have a fellow now who refused to face the fact he will be dead inside of a year, so instead of preparing his estate, doing some things for himself, is wasting his final days, that to me is so wrong. I have had men who on the last day or two, told me they wish they had listened to my words and not closed their eyes to their disease until it was too late to be able to do anything on a bucket list and that is so sad to me. I have had men who ignored our scientific troops and went on these crazy alternative crusades only to find there was nothing but lies and distortions and they found no cure, but sadly, by waiting in some cases for too long, lost the ability of our current drugs to do much, so died far far to young. My getting this long proves my point. anyway, hope he stays well and please post as much as you can as we need to follow up and see if we can help other men in the cases you noted could benefit. Sorry if I offended you or anyone else but will always speak my truth! Prove me wrong and let us all know if you or anyone else finds a cure!!!
thanks, some have not appreciated my words, and I could have done a better job of explaining but suffice to say, the facts are what they are and we are ALL in this fight to stay alive as. long as we can!!! live large, live well my friend
I understand your point, Billy. But you've posted twice about, for instance, quitting alcohol. Do you realize that comment alone will prompt some on the forum to begin loading bullets into the AR-15 and start firing in your direction? If you don't believe me, try it as a separate OP. Same with exercise for others.
I do exercise and I quit drinking five years ago. I also take some supps and do other alternative things (along with standard treatments).
I do understand your point and don't disagree with the thrust. None of us know whether any alternative treatment works or helps if the standard is a TA-endorsed clinical trial (and I follow and admire TA and ask him for advice often).
BUT, in his BAT patient guide, Dr. Denmeade at Johns Hopkins says explicitly that BAT won't be approved anytime soon because no pharma company will finance the trials. Same in a way with alternatives. Too expensive to do it. Doesn't mean they work or don't work or help; that's the great divide.
I speak the truth, alcohol-and I take a shot of rum once a week, does negatively impact the bodies ability to fight off infections etc. Would stop drinking cure you, no. Would it cut down the time remaining-for sure. what to do, one needs to have quality of life and if that means less time on the planet, everyone's choice to make.
There is very little magic involved in my still being here after 26 years, but one hell of a lot of common sense. I push the envelope all the time, but when the day comes where there is no quality of life left, I am gone!!!!
I also take strong arugment over whether any alternative treatments offer a cure, the answer is NO, hell NO. As I noted, ALL of the dharma's bought out ALL of the vitamin etc. makes years ago, as they saw the huge profits in this industry and much less risk to them, no need to do extensive testing etc. As most scientific types will again, if you eat a balanced diet, then there is no need to take supplements-a few can help where leaching takes place due to our drugs etc. but MOST are useless and a waste of time and money. I spent time in the Amazon jungle with shamans, also with Chinese herbalists, and then of course in the labs of scientific researchers. I also help to set up an alternative medical clinic and the shock at finding out what a scam most were. I did not make the statements I did without support.
what my research did, was to allow me to make scientific medically proven decisions-and yes a few out on the edge, and most importantly, to remove the many rotten souls who sell us all sort of remedies, so I could live in peace and not worry that perhaps I had missed some secret drug, herb, or whatever that might cure or extend my life.
This has allowed me to live my life with cancer being dragged along and NOT have my life dictated and wasted by constantly searching for the hold grail of a cure for pc. PC is a best of the devil's making-and I am NOT religious, but you cannot look at how brilliant pc cells are and not be in awe that our entire medical system, having spent billions of dollars involving some of the smartest people on the planet, have still not cracked this beast.
It’s been 11 years since I was diagnosed with Gleason 9 Pca at age 69. My experience is that side effects of treatment have been the problem not the cancer itself. I’m totally incontinent due to effects of radiation and sex is a distant memory. I use a Foley catheter full time since AUS failed. I have peripheral neuropathy which I’ve been treating with electrical stimulation , infrared light and massage. My wife of 55 years just died at age 78 in September of effects of a stroke suffered in 2022. She was wheelchair or bed bound but never complained. I’m happy to be alive at 81 and consider myself fortunate to have oligometastatic Pca to bones discovered by CTPET PSMA which I’ve treated successfully with SBRT , estradiol and Xtandi. Every day is a blessing. When I feel sorry for myself I look at the guys coming back from war missing limbs or people with fast acting cancers who are dead soon after discovering they have it. God bless all you cancer fighters and try to have a happy Christmas!
You have survived the war thus far but with terrible side effects. To have lasted this long with a Gleason 9 is astounding.
Your listing of the incredible damage done to your body is part of why I am so adamant over posts that present false treatment results when this if us in the trenches know otherwise.
Make sure your affairs are in order and try to get some joy from being one of our longterm warriors! Not too late to think of a few items to create a bucket list and hit a few while you can.
I hope you can make a final departure in peace and not have to battle to get comfort and finally to be able to depart when your ready to kill the beast within and depart the planet knowing you fought the good fight!
know your not alone as our gang all battle this demon. You have given hope to some that the war ahead can be best back and life to be had, even under very tough times. ❤️🪖
I’m in the midst of settling my dear wife’s affairs as we speak. At the same time rewriting my will to have my boys be heirs and I’ve been gifting $ to my grandchildren for college for years now. My sons live in NJ and CA while I’m in SC. Traveling is a bit more of a hassle with neuropathy and trying to decide what to do with my largest asset ( home) and numerous contents is trying to put it mildly. But keeps me busy.
Well you’re doing the right thing in getting organized. Know your health is not great but what if you sold the house, got a van/motorhome and equipped it do you could travel-have room for a caregiver
You could then travel and enjoy the sunshine !!
I am up north and freezing right now do not enjoying it anymore!
You can still do things, not as fast but do not give up while you still have a sparkle in your eyes!
I was also told I had to get my affairs ready as I was going to die if i didnt do excsessive life robbing treatments. That was 12 years ago. Hang in there and educate yourself as I have. There is a better way.
You talk about BS, then proceed to talk BS. Unbelievable.
Cancer is a disease of diet (or poisoning by the medical community).
Do you really think that we evolved to be in such poor health; to be so prone to disease? If so, how on earth did we manage to survive? Oh, it must be because doctors were invented! Thank goodness! Just in the nick of time!
Prostate cancer is a disease. All diseases are curable.
Stop eating crap. Stop eating carbohydrates. No studies needed, just common sense.
You say that if and when a cure is available we will all know about it within 24 hours. Are you really that dim? Cancer is big business. Disease is big business. Do you think the lunatics raking in the money want that to end?
Eat the original human diet. Not bread, not wheat, not "healthy" wholegrains; not vegetables, not fruit, not sugar, not pizza, not "heart healthy" margarine. I'd be rich if I had £1 for every person that has porridge for breakfast and thinks it's so delicious, filling and healthy.
Eat fatty meat; salt; eggs; butter.
Drink water. Not beer, wine, spirits, energy drinks, or fruit juice. We're designed to use fat for energy not sugar/carbs. We are fat-burning machines. Sugar/carbs = inflammation. Inflammation = disease.
Stop treating food as entertainment. Eat to live, don't live to eat.
Let me guess how many people will do this?
ZERO. Because it will be labelled as BS; not because it is BS but because for 99.99% of people life wouldn't be worth living without shovelling crap into their mouths.
sadly, you are so ignorant not worth going over your nonsense. MAN ONLY LIVE TO BE 40 years old 100 years ago, WE NOW LIVE TO BE 72 or so, because of the advancements made in medicine etc. You carry on thinking your right pal, and although I think you only come onto this site to cause upset, if you in fact have advanced prostate cancer, keep us posted over the next few years and lets see how you do as compared to the rest of us with a brain and common sense do.
I am a professional project manager and business consultant. I have been heavily involved in prostate cancer research and volunteer work for over 26 years. I am at the end stage of my battle with pc. What else do you want to know?
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Interesting report on the efficacy of IMRT on prostate cancer
Good News Story from Australia: Apalutamide to become available on PBS for men living with mHSPC
Soy and Prostate Cancer
Prostate Cancer Advocacy and Birth Control
Another BiTE gets spit out
