My friend died today. We worked loosely together and only became friends when we started talking about what we had in common. We compared notes on our fight, and when the cancer got in her brain, and she stayed cheerful and positive, I started to love her like I love all my brothers and sisters with this relentless disease.
We compared notes about the respective centers of excellence that were treating us. I thought her’s (Northwestern) might be better. But she died today.
After some crying and drinking I realized that the vaunted war against cancer is a failure, and that survival rates today are barely more than they were 50 years ago. But with all that failure big pharma is earning more than ever.
There is something fundamentally wrong with how we are looking for a cure. I have ideas, but i’m not smart or reckless enough to throw them out here. But I know enough to believe that there are questions we should all be asking - about the standard of care, about pharma subsidies of research, about why natural/herbal alternatives are not exhaustively and systematically studied, about why metabolic approaches to a cure are not taken seriously, about government funding, about how the FDA really works...
My friend died today. It was not a good day, my brothers. Sorry for the rant. Some of you already know what i’m Saying. The rest of you, please keep an open mind and start asking questions.
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Canoehead
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You lost a close friend today...You have my sincere condolences...Some days, I feel like your rant and wonder why these drugs aren't tested faster, where is the vaccine cure like they have for human papilloma virus, why are they just now trying combo therapy like ADT with stereotactic radiation, etc....and yet...
My high school swimming coach was diagnosed in early 2000's and died within 3 years...he had Lupron...
They have abiraterone, enzalutamide, radium-223, apalutamide, darolutamide, Lu-177, Provenge, and a whole lot of drugs in various trial states just for prostate cancer, vaccine trials, as well as radiosensitizer--RRX-001 in phase 3, and trials for stereotactic radiation on up to 10 lesions... Let's not forget also the immunotherapy drug trials--Checkmate 650, Keytruda trials, etc...
I believe when the American Cancer Society updates their survival rates (2014-2018) for Stage 4 PCa, it will be significantly higher than the 2010-2014 period---5 year rate of 30% and the 10 year rate of 4%...
They have come up with more drugs in the last 6 years than they had in the previous 50 years...
I know, we are not cured and that sucks....and you lost your friend and that sucks...but they are in the hunt for a cure....We just can't lose hope...In the words of Andy Dufresne in Shawshank Redemption... "Remember, Red, Hope is a good thing, maybe the best of things, and no good thing ever dies. "
Mourn your friend, but continue to hope and fight...I think that's what she would have wanted you to do...
Yes, continue to remember your friend and please continue to speak out about the direction being taken by some researchers looking for the cure for cancer.
Your post is well written and lists some important facts around how little we have gained toward the cure in the past 50 years.
It has taken several years to convince me that all that can be done to find the cure is not happening.
The recent fight with Johnson and Johnson attempting to keep a generic form of Zytiga off the market has opened my eyes as to where big farma's heart really is. Profits first!
Big farma makes billions supplying cancer treating drugs. Is it in their best interest to find a cure? I believe they are spending the majority of their capital looking for additional treatments because that is where the huge profits are. A cure would wipe out their lucrative treatments.
I have advanced prostate cancer and want to donate to research organizations that are looking for a cure and are not in the pocket of big farma through subsidies and grants. Hard to find.
I will be remembering you in my thoughts and prayers as you mourn the loss of your friend.
6 or 7 years ago while in hospital recovering from LC surgery, I read what was to become my favorite book on Cancer,,,’The Emporer of All Maladies’,,,,now also a PBS Ken Burns documentary. It has not been just 50 years with the littlest of progress in dealing with cancers as the book notes, it has been 4,000 years since ancient Egyptians in their attempts,,,verification by examination of exhumed mummies.
Fascinating book. Read reviews on Amazon.
The final chapter with a note of optimism suggests with the decoding of the human genome and understanding of cancers at the molecular cellular level, tremendous advances are on the horizon,,,some of which are coming to fruition now.
Following my successful LC cancer,,,no chemo, no radiation, no massive incisions or broken ribs,,,,I ordered up 3 copies to be sent to my MO and my two UCSF surgeons.
I have annual scans, going into my seventh year now, still all clear.
You are a true friend. I always wonder how fast they got AIDs under control so quickly but we are still pussyfooting around with the cure for the big C.
May your friend rest in peace and bask in her eternal tranquility. God Bless you for being there.
Dx Oct. 2017. Oligometastic was not in the PCa vocabulary at that time. So I was just stage 4 metastatic with multiple Mets. Originally I was told, “the cat’s out of the bag, so no local treatment will help.” When I asked about debulking to reduce the rumor burden, I got a remark about Dr. Google. That was my first oncologist.
My urologist, who seemed to know more, admitted the standard of care was changing every other month and described the ideas about best treatment as the wild, Wild West.
I had to literally demand docetaxel. Then I changed to Univ of Chicago, and at first I got the standard of care responses to all my questions. But after the MO was convinced I really did want the “kitchen sink” treatment and knew the downside as well as the upside, we went down the okigometastatic road - new scans, counting Mets, etc. I was lucky that my PSA had gone undetectable.
So now the plan is that after 18 maths on Zytiga we terminate all ADT. Dr. Scher’s very limited data (MSK) suggests I have a 1 in 4 chance of remaining “cancer free.” I won’t call that a cure, but durable remission is a term that works for me.
What my friend’s death reinforced for me is that we as a society are still not very good at treating cancer. None of my treatments were revolutionary, just the combination and sequencing were creative. And I had to shop and become very well informed to get that. The truth is that if the cancer wants to get you, it will. In the last year I have read on this site about many promising ideas with spectacular early results, but none seem to pan out. The one many of us are watching closely now is the Israeli group (MuTaTo). All we seem to be getting, however, are some new, expensive medications (usually poisons) that extend survival by mere months. I’m not a fan of unnecessary government regulation, but big Pharma will never give us the holistic, non profit driven approach to finding a real cure.
Bought a year ago I got diagnosed with stage 4 metastatic prostate cancer
Of course I was very scared — and posted on the form under Larryfanman
I was asking about the PSA and Nader -I had advanced localize lymph node involvement
And 2 spots on the spine
At that time you told me about oligometastatic prostate cancer — and you said that I might qualify -( you also said that you wanted to do the same —)
now it has been a little over a year — I went to Northwestern University in Chicago
Where they DID treat me as Oligometastatic — and my insurance company paid for it —
your message to me back then was so INSPIRING — I was just wondering if you got treated for oligometastatic metastatic prostate cancer — if so- how is it working ? and if you was able to get the insurance to pay for it- and how you are doing now ?
Is there a way I might be able to get your email address or phone number- so we can communicate a little bit ?
I’m not sure if you realize it but you did help me a lot THANK YOU VERY MUCH
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Two Years Of ADT Coming To An End.
Purity of BIRM, how can we be sure of what we are getting?
How long does ADT really last?
How do we determine if cancer is in remission
What comes after Zytiga and Xtandi have failed?
