Provenge - The The Good - The Bad and... - Advanced Prostate...

Advanced Prostate Cancer

20,728 members25,799 posts

Provenge - The The Good - The Bad and The Ugly

gusgold profile image
25 Replies

I was told by an oncologist at The Mayo Clinic that they have seen a number of cases where Provenge made the PCa prognosis worse. I did not have a chance to ask him why but the article below may hold a few clues.

Gus

drcatalona.com/quest/Summer...

Written by
gusgold profile image
gusgold
To view profiles and participate in discussions please or .
Read more about...
25 Replies
Olivia007 profile image
Olivia007

Are you on Provenge?

Thank you,

Olivia

irwinb3 profile image
irwinb3 in reply to Olivia007

I have already experienced receiving it yes. Nothing to do after you receive it and no side effects. Bill in Ohio

That article is old and since then, the NCI has declared the research of Marie Huber on Provenge to be "bogus." Further, Marie Huber worked for a hedge fund that was "shorting" the stock of Provenge manufacturer, Dendrion. She had a vested interest in seeing the Dendreon stock decline. IMO, she should have been arrested for stock manipulation.

BigRich profile image
BigRich in reply to

This information is very interesting. What a complex world we live in.

Rich

in reply to

No, shit!

BigRich profile image
BigRich

Gus,

Thank you for the information.

Rich

What doctor are you seeing at Mayo?

These comments from the article seems to be problematic

1. "And then, the results on the placebo group over 65 did not take into account the effect of removing 26 billion mononuclear white blood cells and not replacing them."

Both groups went through the apheresis procedure, so the white blood counts were the same in both arms of the trial.

2. "I am concerned that information to the public has presented an unjustifiably optimistic view of vaccine therapy for prostate cancer ". The problem of people being too optimistic is a different problem from the problem of a treatment not working.

3. " could prolong life by a few months". The effect of provenge on overall survival is not correctly characterized as "a few months". What is true is that the graphs at median diverged by a few months, but part of what was happening is that if a patient on the placebo arm was progressing in the disease, he was allowed to "cross over" and receive Provenge. The more relevant comparison for people choosing Provenge is the comparison between the two groups of the placebo arm who dropped out - between those who chose to take provenge and those who chose not to take provenge. The difference in overall survival between those two groups was in the area of a year.

Chart here: seekingalpha.com/article/37...

Neal-Snyder profile image
Neal-Snyder

That was quite a ride--from discouragement to encouragement about Provenge!

JoelT profile image
JoelT

Gus,

The Hubard article was debunked a long time ago and should be totally disregarded.

When Provenge was first approved (when this article was written) there was a lot of trolls who wrote many different things, both positive and negative, not based on the science, but on their stock portfolio! We need to rely on the clinical trials, the FDA did after very careful examination. During the approval process the FDA did send the drug company back for a second larger follow up study prior to their granting their approval.

There was also the ticket shock of the cost of the treatment as Provenge was the first cancer treatment that had such a high cost over just one month. Given the current costs of many of our other new treatments, this is not unusual in today's world.

As far as the unknown oncologist's comments, where is the evidence? Given this they should have reported these concerns to the FDA. Did they? If they did it would have been evaluated by the FDA? Was it? Comments like this need more clarification, what are they based on, how do they know that the disease prognosis was worse?

Comments like that need to be expanded, until they are further explained they rise only to the level of rumor at best and maybe just gossip. Perhaps the oncologist gave you more information? If the doctor did please share it, if not it would really help us all if you could hold his feet to the fire and get us the information.

Gus, this is not an attack on you, please do not think that I am saying that you are creating rumors. I understand that you are reporting on the fact that this oncologist made this claim. We need evidence, good evidence so that we all can make the best decision. We all should be holding our doctors feet to the fire and make sure they provide us with the best evidence available. Otherwise our decisions will be flawed and we will die sooner and have more side effects.

Joel

gusgold profile image
gusgold in reply to JoelT

Joel,

I went to The Mayo Clinic for the Choline 11 Pet Scan. I asked Dr. Eugene Kwon about Provenge and his answer was I was not a candidate at this time and he had a number of cases where Provenge made the cancer worse.

Gus

in reply to gusgold

I dont think you should post claims like that without any support. I do understand that this is your recollection of his comment, but (because he is so well known and respected) this kind of thing may have an undue influence. Here is Dr Kwon mentioning Provenge in a talk, and his criticism, such as it is, is not that it makes cancer worse. It is more that he likes checkpoint blockade. And he says for checkpoint blockade to work there is (only) a moderate need for a vaccine (which he calls "ANTIGENIC PRIMING"), ie for Provenge. He claims that the immune system is already primed by all the dead cancer cells in the environment, and the checkpoint blockade is the key treatment.

in reply to

Some people are trialing Provenge and radiation. See NCT01833208, for example. The results so far are sort of mediocre. Kwon (apparently) would argue that this is the wrong combination. Both the radiation and the Provenge are taking the role of vaccine in his story line. What they should be pairing is radiation with checkpoint blockade, or alternately if necessary Provenge with checkpoint blockade.

My take.

sidnw profile image
sidnw in reply to gusgold

Sounds like that would be me..Since December when I had it I have been worse than before..much worse.

Sidnw

in reply to JoelT

Joel, I hope you would agree that we all need to be careful when posting information on this site and we should perform some measure of due diligence. Once false information is posted, it is difficult to reel it back in. Some may read the false information and never return to that thread to see that it was debunked, and then they go on to spread it further.

JoelT profile image
JoelT in reply to

Absolutely, I agree. However sometimes it can be confusing for people to really be able to sort out what is real and what isn't real. When the Hubert article first appeared there were a number of people who bought into it because she failed to disclose her conflicts.

Joel

20PeteG16 profile image
20PeteG16

JoeIT,

Thank you for debunking that article. Now is the time for encouraging news, verified by real science.

PeteG

pjoshea13 profile image
pjoshea13

jnci.oxfordjournals.org/con...

I had the Provenge treatment in 2014 and it DID NOT made my PCa worse. I don't know yet whether it helped or not. I just stopped the Lupron part of my ADT (continuing anti-androgen) to see what happens. I'm monitoring my T and PSA monthly.

Clint

JoelT profile image
JoelT in reply to

Clint,

Most men never know if they got help from Provenge because it takes many months before it will begin to have a positive effect and by then most of us have moved onto another treatment. All we know is that in the clinical trials Provenge did extend life in the treatment group.

We have been so trained to expected to see a PSA change that we become cynical if this doesn't happen instantly. Provenge, taking a while before it will begin to have an effect, will not cause our PSA to decline the way other treatments do. This doesn't mean that we are not getting a positive effect from the treatment.

Xofigo is another of our treatments that does not effect PSA, but it does give us a survival advantage as well as palliative effects.

Joel

in reply to JoelT

Thanks Joel,

I am fortunate in that my PCa does not appear to be aggressive and I got the Provenge while still castrate sensitive. My PSA and T are both undetectable. I hope they both stay that way (knock on wood).

Clint

in reply to JoelT

Missing a "not".

Xofigo is another of our treatments that [[does not]] effect PSA.

Clear enough from context.

JoelT profile image
JoelT in reply to

Thanks, I added the not

Joel

in reply to

Hidden -- You should be aware that if you stop the Lupron, you may be at high risk for gynecomastia (breast enlargement, tenderness and pain) because the action of estrogen in the breast tissue will be unopposed due to the blockade of the androgen receptor by your nilutamide. You should discuss this with your oncologist if you haven't already done so.

in reply to

Thanks Len,

Yes, we are keeping an eye out for gynecomastia. I had radiation to my nipple area before starting ADT (lupron, casodex, avodart, cabergoline) in 2011. OK so far.

Clint

You may also like...

Provenge

venous access so I can start Provenge. Have been on Zytiga and a clinical trial with Xtandi. PSA...

Provenge

vertebrae, one inside hip socket. Am I a candidate for Provenge (among other things)? Can it be...

Provenge

Finished first round of Provenge. I was given benadril before starting infusion. After infusion I...

Provenge

Prednisone is up next after i finish Provenge. Hope my liver holds up to it. what's the...

Provenge

advised that the next step in my therapy is to be Provenge. I would appreciate any info you have...