Provenge

Todd1963 said...
The beauty of this forum is that we all have a platform to share our opinion. Although we might not
Always agree with each other we can agree to disagree without taking it personal. I do
However believe in relevence. If it is something that concerns me or I have something positive to contribute then I post. If not then I leave it to those in the know to share their personal experiences. Just saying!!!

Sounds good!

Vive la différence!

JackH said...
Provenge was, unarguably, an incredibly innovative concept in its time.

But it's earned the label as the least cost effective clinical cancer intervention ($272,000 LYS) ever, sparking wide debate amongst medical ethicists.

I hope the can leverage the learnings quickly and develop something new/better.

It turns out that there really was no "mis-information" here after all, right?

Post Edited (JackH) : 7/18/2016 9:36:04 AM (GMT-6)

Mel,
142 locked the thread for some comments I made. The thread should have been locked lol. I knew it would be when I made them and did it anyway. I must admit it felt really good. I have deleted the comment and replaced it with one that as somewhat more politically correct and did not change the name of a member to make it resemble a donkey

Todd1963 said...
142 locked the thread for some comments I made. The thread should have been locked lol. I knew it would be when I made them and did it anyway. I must admit it felt really good.

Sorry we missed it, but glad you had that enjoyment all to your self!
Thanks, nonetheless, for your confirmation.
-Jack Hoff

Not to delve too deeply into the underlying question of this thread...but I'll make a run at it anyway. The question of how do you assign value to a human life is central to our humanity, and is playing out all around us in today. In the system we have, of ever escalating costs, the issue of value is becoming more and more central.

This is the toughest ethical question out there, and like all good ethical questions, clarity is very, very hard to attain. Assigning a monetary value to a life is something that happens all the time....and yet it somehow feels wrong. In the end, statistical summaries and weird terms like LVA only tell part of the story.

I have no answers, only a hope that the question can be discussed honestly and honorably, with plenty of willingness to actually listen to the voices that disagree.

To the OP: Todd, thank you for sharing your journey with us. Provenge appears to have worked well for you, and your explanation of the process is fascinating. This sort of thing, IMO, may well be the future of medicine.

Hi Clock,
I am afraid you come to the conversation on the tail end but you make a valid point. Perhaps it is me. Perhaps I am an anomaly. Perhaps I am so Atypical that nothing about my case reflects the norm. IDK. I guess it is good to be Atypical but here lies the problem. What if provenge is all that it is advertised to be and what if due to a bad rap the 92% of men eligble to receive the treatment could be helped by it but don't receive it? I began to pursue provenge in November 2011 when my PSA hit 10.59. By the time I received the treatment, 6 months later, my PSA was sitting at over 100. After completing the 3 infusiins I took casadex (for the 3rd time) to drop my psa. I took it for only a month. For the 17 months following, my psa rose only slightly and my tumor mass did not grow. Was it me? As I said, I do not know. I do know this. At month 18 I began Zytiga per Dr. Vogelzang's recommendation. I have been on it for 36 months now and remain undetectable. That's all I know. I am an advocate for Provenge because I believe it works. I am not paid for my advocacy. I want everyone to beat this disease. Thats all I want. I believe Provenge can make a difference in overall survival. Is that anecdotal? Perhaps!! Does that make it wrong? Time will tell but I had no side effects and I actually felt better after the first infusion. If I am an anomaly and atypical then perhaps I have no business being on this forum.

I didn't mean to cause confusion. I posted something, didn't feel comfortable with what I had written, and deleted it. But, Todd apparently saw it and referenced it in a reply.

Essentially, I was being a smart *** and accused Todd of being an anecdote....and who can talk to or argue with an anecdote.

Todd, I salute you. I've followed your various posts ever since that striking one you wrote way back when you were first diagnosed. Your success is an encouragement to all of us.

Jack, all drugs and treatments seem to work for some but not for others. Some drugs work for everyone but perhaps not as well or as long. Last night I fell asleep with tears in my eyes because Jordan died. We had near the same diagnosis. His psa was higher but we both had sky high psa lung,bone, and lymph metastasis and nearly identical gleason scores. My prognosis was 1 year and it has been 10. Jpenn made it a little over a year. I stuggle with survors guilt and compassion fatigue and as i try to type through tears the question in my mind is why ne. Why not him? I dont deserve this blessing. He was only 44 and he deserves to watch his kids grow up. So to sit here and read cost over benefit crap is nothing more than bull $#!? I dont care what you people think of me. As the bird flies so does the word

Todd, i think for you to have survivors guilt, i suppose, might be understandable. But consider all the good you have done in the 10 years. Maybe thats why you are here. I know jpenn was an advocate as well, and did what he could, so not taking anything away from him, i very much enjoyed reading his comments here. But you are special, by virtue of what you have done for people.

On the cost vs value, yup there is no issue of cost, in the absence of value. In this case, the value is sort of like what you get with Mastercard. PRICELESS. Everyone here is so happy for your results.

The very idea that there is such a thing as LYS - LIFE YEARS SAVED - is, in an odd way to me, repulsive. Its very existence implies that there is a limit to the value of an extra month or year of life.
We all pay into the system, and some of us get more benefit than others. Thats the way it is. I would gladly pay more in taxes, a lot more - or more SS and Medicare tax - to give my brothers (and who knows, maybe me, an extra year to enjoy family.

God bless everyone on this forum and everyone with PC.

Several folks here seem to object to the use of LYS, Life Years Saved as a measurement. (Before going further, please let me re-emphasize here the same point I highlighted earlier in this thread…that LSY does NOT attempt to assign a value to one’s life.)

I happened to think it’s a decent measurement. I’m a man of science…I believe in measurements; I put faith in trustworthy data. I believe (and have repeated many times) the phrase attributed to Lord Kelvin about measurements (www.goodreads.com/quotes/166961-when-you-can-measure-what-you-are-speaking-about-and). (Kelvin of absolute zero fame, but also infamous for saying that heavier than air flying machines were impossible.)

So, what’s a better measure than LYS?

There is another variant on LYS…LYG, or Life Years Gained, but do note that this accrues more weighting to children’s diseases than adults. LYG presents an even more challenging ethical conundrum for treatments like Provenge.

Or would you just rather not measure anything at all? Because that's what some of you seem to suggest.

Post Edited (JackH) : 7/18/2016 3:43:08 PM (GMT-6)

Agree with clocknut. Rather than continue to debate, better to focus on all the good that Todds experience and success have conveyed to others that stumble on this forum in search of education and support.

It's interesting, there was recently a thread that turned into a well deserved tribute to Tall Allen for all the help he's provided others. In a different way, I think Todd, with his experience, and blog, have probably been equally helpful on the emotional support side of the equation.todd, it's good to see you posting more lately, as well.

Post Edited (Pratoman) : 7/18/2016 6:37:48 PM (GMT-6)

Logic is gone...one and one make three...there is a fee...for refusal to see...is it dusk or dawn..

Damm... poetry cuts thru all the bull...deeply and incisive

btw Frank Luntz was right...Myth is truer than facts{my paraphrase}

I am alive five years after being diagnosed with late stage 3 PCa before surgery and was promoted to Stage 4 during and post surgery. Thankfully for a wise Oncologist who had dedicated his life to patients with PCa strongly encouraged me to participate in Dendreon's Provenge Stage 3 clinical trial study of about 40 men who were recently diagnosed with PCa and were committed to having a RP surgery. My oncologist said he had suggested many trail studies in his career but this was the one that he had real hope of because it used one's immune system with Provenge to seek and destroy prostate cancer. I am so glad I headed his advice.

Five plus years later, I am healthy and non-detectable. They call me the miracle patient at my cancer center.

Needless to say, I am a huge fan of Provenge and like Todd encourage everyone to give it serious consideration. Side effects are minimal (if any) and are short-lived if you do experience any of them. Not bad for a cancer treatment.