What, when and how can we do something about this disease taking younger and younger men. Of course, all the cancer hitting every single one of us, in one way or another.
Maybe this isn't appropriate... Yes, we remain as positive as possible. We spend most of our time from moment of diagnosis trying to LIVE..
WE NEED MORE .... this isn't just Life!!!!
This is an epidemic and our medical system is not moving quickly enough because they say these are many cancers in prostate, or whatever they say.
It's time to stand up. People are living longer though with what quality of life?
Maybe we can create something. A movement.. an energetic movement if nothing else.
I'm sorry if this is inappropriate. Some days we have to get off the floor..
Kudos to the men years ago who created the acronym- CCKMA
and for remembrance of John Arnold and all of our generous heart felt warrior brothers who tried, experimented and offered what they could...
Just a couple that I know that come to mind of the hundreds.. and btw ALL of us..
is Patrick O'Shea, Tall Allen, Nalakrats, LearnAll... there are many.. LuLu for his humor...
omg.. Darryl and I forget one other integral person.. Help me out here...
I've come here, despairing.. trying to understand something..
it's been over 13 years.. I'm still asking questions. The road has narrowed...
I feel for the young ones with kids..
I feel for all of us...
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Bluebird11
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BlueBird..I salute you for your noble emotions for humanity. Just my two cents here. We know that in some Asian nations, prostate cancer rates are only 10% of what we have in Western nations. I believe, ,right kind of diet, sense of belonging to family and society and working all day physically are some factors which keep cancer rates down and mortality from PCa very low. Heavier and heavier treatments can not solve the real problem..in fact..they cause many more problems. Prevention is better than cure. Treating chronic infections and inflammation, eating anti inflammatory, wholesome foods and practicing meditation and relaxation etc are some components of such prevention. Lets not let junk food, junk news and junk greed take control of our society and our nation.
I am in full agreement. This whole thread can go south quickly since what you are saying, yes, we have the freedom to do, THOUGH.. there is a sentence to finish that I am passionate about. It begins with our children, our food system, our education.. without shirking our responsibility, there is a responsibility within the culture to reach always higher in quality.
We are fighting right now not to choose these difficult treatments. There's always a great pressure to do so. We stayed very strong. I have no idea in what direction this disease could have taken us. (diagnosed stage 4). What I do know that of the almost 14 years coming in May- over 12 of those years were spent in a grateful QOL. Less was more .. we decided every step of the way with two good oncologists who suggested and not demanded. With this group to run things by. With an earlier group considered natural treatments that set the stage for meshing with our own personal philosophy.
May we all be blessed with whatever we believe in, from spirit to just plain old football and fishing.. My heart thanks and loves you all, sight unseen- as another human living in this time.
There are thousands of published studies (all kinds) on pubmed about anti inflammatory, anti cancer dietary substances, herbs, spices and so on....but there is such a reluctance by onco industrial complex to acknowledge this fact. Study after study shows that chronic systemic inflammation in body not only initiates but also promote growth of prostate cancer cells. That Intermittent fasting facilitates death of cancer cells. I can go on and on..but sadly...the complex can not see beyond a stronger lutamide drug with price tag of $10000 a month. To deal with this condition we need a Comprehensive treatment plan with dietary, physical activity, general health maintenance, control of medical conditions, stress reduction strategies and solid emotional support system. Glad that this forum is providing some of these things and help us bond with each other and celebrate our right to express our ideas and opinions.
You have been a great inspiration for my wife who is so impressed with your resilience, persistence and for being rock solid supporter of your husband ..for all these over 15 years...
Wish you continued serenity and courage but this journey can sometimes become so discouraging and saddening.
If anyone wants to know our experience so far with oxycodone/contin not touching the pain and the drug we just began Gabapentin and the importance of intelligent dosing.
Also, for weaker bodies what we are doing is switching to liquid supplements to get assimilated better. Many times our body can't detox what we take in.
Also, while we are all going through this, I have this cynical sense of humor for my husband. I say.. "honey, there's no party happening out there."
We rode the wave and a good one.
I hope for the children we will create a good world- they deserve to live in.
I'm in agreement with you ceses, and yes, this was adequate and more. I'm also in defiance of the progress with 'the treatments' along with the structure of medicine and with the standard of care. I am beyond dissatisfied by what our health care people have to endure, passing that on down to us. People who have gone into medicine, just like our universities that have been set up to program rather than to initiate and inspire creativity and magnificence that humans are capable of and actually need to share with the world....
I'm a rebel and see a world that can be, and maybe going through what we are going through, the 'new' or more evident transparency we are all seeing and experiencing, an opening for more freedom that can come about.
We have had to pay about 3/4 of our retirement savings on holistic medicine. Within THAT world is the same or similar microcosm of our conventional medicine.
We are at this point retaining a positive view amidst emotions we experience, ONLY we are making a choice to empower ourselves and be in the most intelligent, compassionate (for ourselves and others) place of- taking a road, maybe in the past, called 'less traveled', but now, more than ever we have fellow travelers joining us.
No matter our differences, there is a connection that can't be denied. Especially, one on one for many of us, or only within the group, we are connected. For this I am humbled and feel grateful. The connections where I don't know one thing about many of you. May we continue our journey no matter what and connect in or with the spirit of who we are...
I wish us all our deeper yearnings be given and recognized- we are the humans who others, in the future, will be standing on our shoulders.. just as I mentioned, in honor of John Arnold!!! one of the greatest generous beings in this group when it was just the Advanced PC Group.
We have grown and really I've seen a transformation with more information, compassion, wisdom and humor. Times are changing and we are part of it..
May this be for the beginning of 2021- a time of wisdom and depth for the life we've lived and are living..
I feel for the young warriors, they just don’t understand how serious this monster is about eating a man up from the inside out. Me anyhow I tell everyone that will stand still about this monster. To many of the young guys think that it is a old mans disease and that everyone will get it but die from something else! To late they find out the truth. Keep telling all and looking for a cure. Larry
I am a good example of one of the young boys who got my life "taken away" overnight. Got urinating issues at 44.. My doctor didn't do anything.. Over the next 3 months it got so bad, that I finally got my PSA taken (just turned 45).. 88 (didn't even know what a prostate was).. Was then sent to the urologist.. as a healthy man.. came out with a death sentence.. Stage 4 PCa, several mets to bones and lymphs etc.. Before I left I got a shot of ADT.. started Zytiga (upfront as hormone sensitive) and have gotten radiation 6 times (several "rounds" each time) within the first 9-10 months.. 2020 will be remembered for a lot more than Covid-19 in my case.. And this is just the tip of the iceberg actually.... Found out I have a BRCA-2 mutation which can explain why I got this mean diagnosis at only 45 years old and so aggressive... I do relatively OK now, but all my dreams and QoL for sure got some lights blown out... (kids are now turned 5, 9 and 11.. wife 44)..
I agree with you. I’m 54 with stage 4 Prostate Cancer with bone marrow. I was diagnosed 6 months ago after getting ill because my physician doesn’t do PSA testing automatically on men anymore unless family history or symptoms. This is common now as it’s cheaper over all but puts greater reliance on the physician to do routine digital exams. Sadly mine did not. There has to be a way other than lawsuits to change the mindset of the current medical establishment. That you to all the work you guys have done for us newly diagnosed. Stay strong.
I once suggested here for "a million man march " to Washington DC....... the response/silence was deafening...
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 01/04/2021 3:03 PM EST
It sure seems to me that too many men, often in their 40's, aren't being diagnosed until they are far along and metastatic. There is some wrong-headed national advisory board (forget their name) that foolishly came to the conclusion that too many men were being over-treated for this disease (urologists eager for surgical fees?). Rather than determine and address the root cause of this over-treatment they foolishly decided that the answer was to ease up on screening even to the point of encouraging patients to avoid screening. To what end -- so they wouldn't be dismayed by a diagnosis that yes wallops everyone who receives it? Even to the point of saying that men over 70 don't need to be screened at all? Yeah the DRE part of screening isn't fun for patient or doctor but without that I would not have been diagnosed over 4 years ago; my PSA was only 2.7 at that time. My long time PCP screened me every year starting in my early 40's. Very few PCP's are as conscientious and patients who resist this screening are not doing themselves any favors.
One of the members of a FB support group just for wives experienced the relatively quick loss of her spouse to PCa three years ago. Since then, she has worked tirelessly with the Cocoa Beach Chamber of Commerce, local MDs and over 100 supportive retailers to make free PSA tests available to any and every man who wants one. The role of the retailers is to provide incentives. Men age 40 - 50 are targeted. The membership of this wives' group donates individually to sponsor as many men as we can. The drive is growing every year.
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