Chronic?: You know who scares me more... - Advanced Prostate...

Advanced Prostate Cancer

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Chronic?

31 Replies

You know who scares me more than anyone else? An oncologist. Who in their right mind spends an entire lifetime associating with humans who have cancer? To me it's eerie as hell, almost surreal. What lies inside their minds? Do they really, truly care about us or are mentally somewhere else, thinking about having an article published in the Journal of Clinical Oncology ? Is the pinnacle of success developing a drug that turns cancer such as prostate cancer into a chronic condition, or is the pinnacle being the keynote speaker at the next American Society of Clinical Oncology convention?

I have an average IQ. That being said it doesn't take much to comprehend the sequence of drugs that my oncologist is going to prescribe me. I went the Docetaxel route to start the show. Currently the buzz is starting the show with Zytiga. You would think that the world of oncology developed something new. Ha! They simply shuffled the deck. I know soon I will be swallowing Zytiga pills and when that stops being effective, on to Xtandi. It also doesn't take a ton of training to comprehend blood panel results.

Ok, where am I going with all this? I run into quite a few people who think that prostate cancer is something that a man can live happily along with forever. They fail to realize it's deadly, dealing a death blow to relatively young men.

When the HIV/AIDS epidemic reared it's head worldwide, it was put in a "social corner" because of the misconceptions surrounding it. Only when socially important humans starting pounding at the kings door did it become medically imperative to find a way to turn HIV/AIDS into a chronic condition. They did, and did so for fame and glory.

It will take the vocally famous to start a campaign to find a drug that keeps prostate cancer from killing us, to be spared from the earth's scrap heap. We need a voice, one that's strong enough to draw many more powerful voices together. We need spokespersons to demand something be done, and done soon. If the salt of the earth doesn't have what society considers famous humans helping, well, it doesn't look good. It's out there, find it. Utilize artificial intelligence technology to help develop a cure. Or are humans to vain to allow such a helping hand?

Sorry for ranting.

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31 Replies
gusgold profile image
gusgold

the reason is simple...the average Onco thinks he is God and makes in excess of $700000...3 times what the average internal medicine doc makes....Big Pharma has plenty of incentive developing new anti-androgens at $10,000 a bottle

gusgold profile image
gusgold in reply to gusgold

You are also right about PCa...the treatments ruin your life, usually over a period of 10 years...that is why it is considered a good cancer because it takes a long time to kill you...so, your life is ruined, especially from an RP then you go from treatment to treatment eventually landing in hospice on a morphine drip...PCa is one of the worst cancers a man can get, especially if the man is relatively young

in reply to gusgold

I agree for a man it’s bad,especially young. Ego confidence and abilities diminished.. rapidly, that being said, take everyday as it comes.. It is what it is. All cancer is horrible... at least some with pc have had a chance to kick the can down the road... a few years ...and some for many more...

Lombardi24 profile image
Lombardi24 in reply to gusgold

Amen to that. I am not going that route. I watched my father die from PC. It was a slow, painful death. I'm looking into assisted euthanasia. I am not going through that Hell.

ITCandy profile image
ITCandy in reply to Lombardi24

Stick around, my friend. A lot of progress is being made and many more treatments will be available in the near future. Just need to keep yourself healthy enough to be there to benefit from them.

Lombardi24 profile image
Lombardi24 in reply to ITCandy

Lynparza is working right now, but there isn't anything following accept for chemo and I'm not doing that again. Did chemo remove in 3 yrs. Never again.

TenscTexan profile image
TenscTexan

Well written, very good points. You lost me on the artificial intelligence technology developing a cure, I'd like to hear more.

in reply to TenscTexan

With all due respect, you might want to google how artificial intelligence technology can be paramount in the medical field. It's fascinating to delve into.

TenscTexan profile image
TenscTexan in reply to

I took your advice and googled it, only to find out here is one more topic I have no freaking clue how genus's come up with this technology and grateful there are people so much smarter than me that can.

Nothing new under sun..the right pockets are being lined...Big biz at its finest . The American way.. lobbyist are not working in the public’s interest..

wifeofvet profile image
wifeofvet

they spend a helluva lot more than just on Medicare. DARPA actually funded one of the clinical trials in which my husband participated when his Casodex first began to fail. The trial was funded 14 MILLION by DARPA. DARPA, for those not familiar, is an arm of the Defense Dept. I asked ''why DARPA?'' and the lead researcher looked over his glasses at me and said, ''because it is in the national interest to cure cancer which is bankrupting us.''

wifeofvet profile image
wifeofvet in reply to wifeofvet

i am GRATEFUL for the life extension of 13 years that science gave to my husband before he passed in January this year. as he participated in the above trial, it was explained to us that of all the cancers, PCa is the smartest...smartest as in it has the ''hardest nut'' to crack...literally. each patient was treated independently and for three months, so, i got to hang with some brilliant minds each and every day...brilliant minds who were more than happy to reduce complicated science into mental pictures that this ''anything BUT a scientist'' was able to comprehend. unfortunately, they were not able to achieve their goals and the trial was deemed a failure, but not totally, as they learned even more about the elusive AND illusive cancer cell, whose shell is impossible to crack and even when treated with the best medical options available and senses its own demise manufacturers it's own fuel (testosterone) inside that impenetrable shell.

AGAIN, i am grateful for the time we had together due to pharma's effort to turn it into a chronic disease, for without that, he would've been dead within two years.

in reply to wifeofvet

Well, they have an interest in keeping the generals and the commander-in-chief healthy and they are usually in the age group vulnerable to this disease. I imagine they also like to take time out from developing weapons and advancing science that benefits the human race.

wifeofvet profile image
wifeofvet in reply to

that's utterly cynical. the trial my husband was in was an absolute EFFORT to CURE the disease once and for all, not just to keep it chronic by testing the next best drug or combination of drugs...and there wasn't a politician or general in it. personally, after having had the science of that particular cell explained to me, i don't think it will ever be cured, even if they cure every other cancer known to man. so, gentlemen, make the best of this ride and enjoy your lives best you can. every next best drug is a gift.

in reply to wifeofvet

Well put, thanks for having the courage to speak your mind.

in reply to wifeofvet

A tough nut to crack indeed. Cancer has perfected the art of survival. There are over 5000 mutations in prostate cancer alone. It's constantly evolving around anything you throw at it. Someone described it as a "race against evolution".

Break60 profile image
Break60

As far as I know there is no consensus on the order of treatment of prostate cancer.

Bob

in reply to Break60

There are competing factions. RP surgeons and radiation oncologists aren't thrilled at competition from HIFU surgeons.

Stegosaurus37 profile image
Stegosaurus37

Prostate cancer isn't "sexy". I had to fill out an initial questionnaire to get into a new healthcare system. What previous illnesses have you had? "Breast cancer" was there, so was "ovarian cancer" and "HIV/AIDS". Neither prostate cancer nor testicular cancer were on the list. My wife, a breast cancer survivor, says it's because men don't talk. We keep it in wheres women let the world know. We need to change that, if there's going to be any change.

"If you wish in the world to advance

Your merits you're bound to enhance

You must stir it and stump it

And blow your own trumpet

Or, trust me, you haven't a chance."

(Gilbert & Sullivan - Ruddigore)

snoraste profile image
snoraste

There are no "better" cancers. They are all guaranteed to compromise your life expectancy and QOL. Prostate cancer, if it can be called "better", has the advantage of kicking the can down the road a little more till a better treatment comes along.

I'm not optimistic that federally sponsored programs will give us the chronic solution. The program is shackled by bureaucracy. Read page 35-40 of this "President’s Cancer Panel Annual Report 2010-2011":

deainfo.nci.nih.gov/advisor...

The solution, which I think it's well on its way, will come from the private sector. The size of market in prostate drugs and treatment has jumped from $2.5Billion in 2011 to $7Billion in 2017:

globenewswire.com/news-rele...

Some estimate the number to reach $18B by 2025(?). Point being that there's plenty of private capital dedicating an accelerating amount of resources to prostate cancer. To a point that there may be a shortage of qualified MOs:

ncbi.nlm.nih.gov/pmc/articl...

They mostly partner up with clinics and research centers for their clinical trials (that's where the patients are for clinical trials). That's the good news. The bad news is that private capital is driven by return on investments, so economics rules supreme (Not saying that these are bad agents). But I'm ok with that, given the other options.

There's plenty of action in the field. Keep you hopes high.

in reply to snoraste

I'd rather have prostate cancer than colon cancer, pancreatic cancer or brain cancer. PC is slow growing. It does introduce QOL problems -- I know that first hand, but the survival picture isn't that bad compared to some other cancers.

Lombardi24 profile image
Lombardi24 in reply to

Not slow growing if it's highly aggressive. I've burned thru every treatment available in 4 short years and it comes back with a vengeance within 3 months following.

j-o-h-n profile image
j-o-h-n

Excellent Rant. I once mentioned a March on Washington which went over like a lead (not Led) zeppelin.

Good Luck and Good Health.

j-o-h-n Tuesday 03/20/2018 1:52 PM EDT

I think some doctors are arrogant and gravitate toward specialties where the money is. But while we are on this subject -- be glad that there are people willing to become proctologists.

sociopaths

ewhite999 profile image
ewhite999

Lots of progress made over the past 10 years. Most of us would be dead now if not for the recent advancements. Consider yourself lucky and think positively.

in reply to ewhite999

I agree. I'm very grateful for the advances that have been made. I think the goal of lengthening life long enough that you have the same life expectancy as anyone else is a more reasonable goal than a "cure". Look at what has been achieved with HIV/Aids.

greatjohn profile image
greatjohn

ME-Age 61, Stage 4.

as I have spoken about on here...men do not talk about things. Prostate cancer is a man's thing....My urologist said "if women got prostate cancer, they would have already found a cure". Men are told to "man up" and not "cry". The thing that made the HIV/AIDS movement work...is that people spoke up. Remember, ACT UP? They were militant and in your face until someone heard~~they were on the evening news almost every night...

.... until men will stand up and say "I have prostate cancer...I'm being castrated....I have to wear a diaper..." no change in the status quo will happen...everyone thinks prostate cancer is a simple to fix cancer or one that only OLD men die of. This is one of the reasons I mention just now...in a post...that I wish people would state their age and stage at the beginning of every post and comment...we probably need a "me too" MARCH ON WASHINGTON. I WOULD GO...I WENT TO THE GAY MARCH ON WASHINGTON in1993 ~~THE BIG ONE~~just after that the "protease inhibitors came out"...and my friend that I went with...didn't make it...he died just a few months before they came out.....We need an ACT UP type movement....being "strong and silent"...and "manning up"...is not going to fix the issue.

~~John (61 stage 4 & castrated).

p.s. I tell everyone I am castrated. It's nothing to be ashamed of. I refuse to call it ADT...that sounds too "pretty". It's CASTRATION. I really want to see a "fix" come so that I can stop the castration...and have my testosterone back ! ! !

Lombardi24 profile image
Lombardi24 in reply to greatjohn

Amen John. I remember Act Up. And you're right. I think too many of us are ashamed at the loss of "manhood" to say anything. Being a gay man myself and having been diagnosed, mutilated and castrated at 54 years old after having an active sex life and being in good health was crushing. Too many healthy men dont understand the issues, but would cringe if they were presented as the facts following this death sentence. I dont want to hear that I should be thankful that i am still alive. My QOL was destroyed the day the proctologist told me Gleason 9s across the board. I fight depression every day knowing I can no longer get an erection or cum...knowing that I will no longer enjoy satisfying sex with a partner or know blissfully hot sexual intimacy. These are the things that should be said to fire up the community of straight and gay men at risk as well as those of us who have been compromised.

Lombardi24 profile image
Lombardi24

Chronic without testosterone/androgen deprivation

MyDad76 profile image
MyDad76

I somehow found this post. When my father was first diagnosed with prostate cancer I heard it from many doctors, that this is a good cancer! Especially compared to my mom's - she had pancreatic cancer, where only 20% get to see a year and only 3% hit the 5 year mark. So I "should be happy".

I would slap their face! For those who go into permanent remission by proton theraphy or similar, maybe. Some at least get some years when they are not on theraphy. But when you are diagnosed with agressive and/or advance cancer, and are affected by both cancer and hormone theraphy... I would sure like to see just 1 of these doctors have it and call it a good cancer. You know you will die and you are dying slowly. It hurts me so much as I see my fathers slow detoriation. He always said he hopes that when his time will come, he will go down quickly....

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