Hello, I was diagnosed with Prostate cancer when I was 50. In June of 2005 I was told that I had Cancer and they recommended surgery because I was so young. My Gleason score was 8 but because of the biopsy they believed the cancer was confined to a nodule on the left side of the prostate. I was told that I was very lucky because they believed that the surgery would get it all. After the surgery (August 2005) they told us that it was far more advanced than they thought. But they were optimistic that they had removed all of the cancer. PSA started climbing about 6 months later but at a very slow rate so they did not worry too much. My PSA was 2.8 when they did the surgery and 0.1 after the surgery. When it reached 7.2 in 2007, it was decided that radiation was next. After 35 treatments (every day foir 7 weeks, except weekends) the PSA did not change. After that they did hormone blocking and numerous other drugs and finally chemo in 2011. Chemo did not work so after 6 treatments that was stopped. I am now on Zytiga. I have asked my oncologist what the expectation is from this drug and all he says is that it is very promising. My question is this - Has anyone been on this drug and for how long and has it helped? My PSA which was 296 at the start of the Zytiga, has gone to 118 and now is 165. All in about 10 weeks. Everything I have read does not indicate a whole lot of time left and I am wondering if there is something else I should be doing.

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Has your cancer spread? If it has you may be eligible for Provenge and you should ask your doctor about it.

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Hi, yes I now have metastatic castration-resistant prostate cancer in my bones. That is why I am now on Zytiga. But I will ask about Provenge on my next visit.

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You should go to Provenge.com and watch the videos there about Provenge. Most experts say Provenge should be given as early as possible--its administration is three infusions over one month and then the treatment is done. The Journal of Clinical Oncology suggests that Provenge be given before Zytiga, since then the patient can have the benefits of both. If you wait until after Zytiga, you may be delaying Provenge starting to work for many months. The average course of therapy on Zytiga is 8 months and that's 8 months during which your immune system is not being ramped up by Provenge.

Here's the JCO article link. If I were you I'd print out this article and take it in to discuss with your doctor.


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I'm in similar situation. I had proton treatment in 2009 but my cancer was already metastatic. Did 3 treatments of Docetaxel chemo then switched to Cabazitaxel (jevtona) for 6 infusions. Castration resistant cancer was not slowed down. On October 21, I started Zytiga and my PSA dropped but now it seems to have leveled of at 47. My oncologist here at Penn State Hershey Cancer Center is planning to get me in some clinical trial. PSA growth has been stopped but CT scans indicate that cancer in lymphs is growing. Fortunately nothing went to the bones yet. For some reason oncologist is not too keen on Provenge. Need to ask why. In 10 days I'll see him again and see if he found clinical trials where I would be accepted.

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Forgot to add, some of the members of USTOO group recommended a consultation with Dr. "Snuffy" Myers so I'm going in 3 weeks. He has a good lecture utubes at
You'll find allot of useful information. One of the members was given 7 mo. to a year to live. He started to work with Dr. Myers and has survived 7 years now.

SaulK - Good article from your link.

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I was in a clinical trial before the chemo. The medicine was called RAD001. I was not allowed to stay in the trial even though it appeared to be helping the cancer. The reason was that less than 1% of the subjects in the trial ended up with lung problems and although I had never had lung issues before I fell into that less than 1% group. I was then put on ketoconazole and after 6 months was taken off of that because it too stopped working. I seem to be able to tolerate things well for the first 3 months or so than it all goes to hell.

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Regarding "not too keen on Provenge" unfortunately a lot of men seem to run into that. I think there are a number of reasons: Provenge is not only new, but is a first of its kind, being the first therapy approved by the FDA that works by stimulating the patient's immune system to attack cancer. It takes one month to complete Provenge treatment, but then there is a "waiting period" so to speak, while the immune system ramps up. Thus, unlike chemo, which immediately poisons cancer cells (and all other fast dividing cells--and thus all the horrible side effects) Provenge won't right away decrease psa or affect progression. But the totally proven fact in the trials is that Provenge prolongs survival, and with really minimal side effects. And also the improving hazard ratio in the trials means that once the immune system T cells are trained the benefit of Provenge improves over time. The theory is that it kills cancer cells and then the immune systems takes up bits of the dead cells and learns even better what to kill.

So--some docs are slow to accept new treatments, wanting them to be proven "in the real world" for a while; some docs don't keep up with what is the latest; and unfortunately some are probably listening to the really bad reporting that has happened around Provenge--the "few extra months of life" line. The "median" survival advantage for Provenge is 4.1 months, according to the FDA, but what that means is not an "average" life extension of 4.1 months, but that in the trials half the control group had died at 21 months into the study and it took about 25 months for half the Provenge men to have died. In the half who were still alive at that point many men lived extra years. The three year survival rate was improved by almost 40% and in fact the researchers couldn't even calculate an "average" life extension because when the study was stopped after 5 years there were still men in the Provenge group who were still alive. One man, who volunteered to give up his confidentiality because Provenge worked so well for him, a man named Eduardo Garcia, lived for nine years after he got Provenge.

As to sequencing, I've already given you the link to the JCO article, but I'll say it here for any man who is not going to look at the link--The Journal of Clinical Oncology and the NCCN recommend giving Provenge first, before off label Zytiga (it's on lt approved for after chemo). They make this recommendation for a very logical reason, namely that Provenge is best given when the immune system is its strongest and the complete course of therapy is given in one month, then other therapies can be given. If Zytiga goes first the patient is waiting months and months to get the benefit of Provenge because the immunosuppressive steroids taken with Zytiga preclude giving Provenge at the same time. And then if the patient's symptoms get too bad, they may no longer be eligible for Provenge, since it is labelled for asymptomatic or "minimally" symptomatic men. In short, good medicine says give Provenge first.

Some docs and some patients get understandably obsessed with psa response, but both groups need to get up to speed on the new facts about Provenge. It extends life significantly, even though it doesn't immediately lower psa.

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Hi Taylorfleet,
I am confused with PSA numbers? The highest mine has ever been was 39. I was 55 when I was diagnosed, had surgery and that didn't get it, went to radiation and that didn't get it, prognosis was one year to live and to get my affairs in order, and than we started Lupron and it worked. Lupron worked for over TEN years. A good ten years, I traveled all over the world and enjoyed life. And than it came back with a vengeance. Tumor near my kidney, left hip had cancer in the bone (almost impossible to walk) and I was sent to an oncologist and radiologist. Radiation removed the tumor and made the hip feel better. Prognosis again was less than a year. Cancer is now in 60% of my bones but no tumors. I was on ketoconazole for 6 months (horrible side effects), was very excited to receive Provenge and disappointed that it was not the miracle cure. I am a firm believer that it is the way to a cure - teaching our own immune system to kill the cancer. Now I am on Zytega and it has been working for almost 6 months. My oncologist has a patient from the trials that has been doing great for two years. I do understand the BIG question - how long do I have? There is no answer. Just keep up the fight. I will pray for you - can't hurt. I turn 73 next month and this damn cancer is spoiling growing old! Is that pain from the cancer or old age? But that's OK, I like growing old. I can still travel a little!

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I have been through Provenge, Taxotere, and am now on Zytiga. I also have stage IV metastatic progression to the bones. All PSA numbers are relative, but I will share my progression over the past 17 months. When Casodex quit having desired effect, my PSA rose to 20, and I was placed in a Provenge study--I am not sure if I received 25%, 50%, or 100% of the approved dose. After concluding the sequence, my PSA continued to rise, which is expected. After three months, it had tripled to 59, so my oncologist and I decided to move to taxotere. My PSA dropped into the teens and stabilized until the sixth and seventh courses, when it began to rise and I was reacting( a couple of visits to the emergency room) adversely. In May of 2011, shortly after the FDA approval of Zytiga, I started the procedure of 4 tabs each morning...etc. May 18, my PSA was 29.99, June 15, it dropped to 2.91, July it was1.74, September it was 1.12, November .83, December 1.25, and just this week it was 2.05. I have had no noticeable side effects with the Zytiga, and have had continued improvement in energy and outlook. We hope the Zytiga continues to slow the cancer, as it is much easier to manage!
I have also started on a vegetarian diet to minimize "feeding" the tumors, which research indicates meat, dairy, and sugar accomplish. I am not sure how much influence Provenge has had due to our early decision to move to taxotere, but I am confidant that the Zytiga has had a direct correlation to feeling better, lower PSA, and a brighter outlook on my future. I probably told you more that you wanted, but this is my story...

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Dad has been very well on Zytiga and Johnson and Johnson helped him get the RX. For almost 6 months he said he had no side effects. He started getting very tired this past month then more hunched over. MRI showed bone mets (didn't have that before) and fractures in his back and thoracic areas. Also he had some fluid retention in his lower extremities and and but he also had a bit of that before starting the Zytiga so I don't know if its significant. Otherwise they were saying he did great on the medicine. They think now his body got used to it so the PSA (which greatly dropped during Zytiga tx) has gone up again and the cancer has mets.

Summary he had a good 5 months with Zytiga, After reading above posts I wonder if he would've done better with Provenge. Now I wonder if they will let try it. I saw Zytiga has SE of bone fractures. So Im thinking folks should take it with those bone protecting strengthening meds...but Im only a nurse.

There are some other promising meds
Cabozantinib proven to reduce or eliminate bone mets endorsed by Susan k race for the cure

Alpharadian on fast track for approval 2012 with average survival of 1year

Orteronel. Also to stop bone mets

Sometimes meds used in combinations ie one article on zytiga plus xgeva

PS Hope spelling is good...I apologize for typos...
God bless,

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Hi TaylorFleet,
Yes, sadly it does sound like you're battling an aggressive cancer and Provenge AND Zytiga may be called for. In fact, as I noted a day or so ago, there appears to be a trial recruiting men that will look at just that combo.

But going back, it's not clear. Are you still on Lupron or Zoladex? I think you should be. But it sounds like you "tried it and gave it up" Talk to your oncologist, of course. You might want to also consider Avodart (duteraside) along with th Lupron.

Do keep us posted and good luck.
Herb S


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Yes I am still on Zoladex. Oncologist has not suggested Lupron. Zoladex is given as an injection once every three months. I am also on Prednisone along with the Zytiga. Next appointment with the oncologist I am going to ask about Provenge and Lupron.

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Taylor--Yes, Dendreon just announced a trial to determine best sequencing of Provenge and Zytiga. Talk to your oncologist and check clinicaltrials.gov.

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keep up the spreading of good knowledge...with your nursing background you are valuable conduit of hard to find information.......good luck to you and your family

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I did review clinical trial of Zytiga and Provenge combo but unfortunately since I started Zytiga 2 months ago I was notified yesterday that I would be excluded. (Thank you SaulK for your information)
In two months use of Zytiga my PSA dropped from 70 in Mid November, leveled off at 47 on12/2 and 12/29 and went up yesterday to 60. I meet my oncologist tomorrow to discuss next step. I'll try to go to Provenge.

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