After 10 years of experiencing various prostate cancer treatments, it sounds like next month I'll probably be moving onto Provenge. I know it prolongs life without lowering your PSA (another topic entirely), but how long does it slow/stop progression? In other words could I plan on it "working" for a set period of time? What might that time period be? A year? Or longer?
Also, today was my last day of Zytiga, but will I continue to get Lupron injections?
I'd appreciate comments from any Provenge "graduates" and/or helpful recent research information you're aware of.
Thank you!
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Pwjpp55
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It doesn't slow progression - you just survive longer than you would without it. It combines synergistically with radiation and chemo.
You will certainly continue with Lupron. Your cancer is becoming increasingly sensitive to even the tiniest little bit of testosterone, so it is more important than ever to keep it up.
Ok, thanks TA! As a follow up how does surviving longer work with Provenge? In other words, if the immune system is getting after PC cells, why wouldn't your PSA go down?
I have been fighting Pca since diagnosis 2009, age 62, Psa 6, Gleason9, inoperable with a pile of treatments which mainly delayed progress of PCA but didn't ever stop it.But 6 doses Lu177 got rid of countless lymph node mets, and many bone mets. But new bone mets were seen in PsMa scans with low PsMa expression but with big increase in Psa without huge increase of Pca volume in bones. I thought I might travel from Australia to USA to get Provenge, but not while there was a pandemic of C19 virus. There is no Provenge in Australia where I live. So because all my Pca was in bones at 4 months after end of Lu177 treatment I was offered Cabazataxel for free at local hospital or or I could have Xofigo, available from Theranostics Australia. Docs there took time to agree with what I wanted, but marrow function was good enough to proceed, so I had a dose of Ra223 13 days ago.
The rise of Psa was doubling faster than each month, and had it continued at that rate over last 13 days it would have moved from 190 to 270, but when I draw the Psa results vs time on a graph, I can see the rise of Psa is slowing down, because now Psa is 250. Its not a big reduction but Psa rarely shows much change within 2 weeks of beginning any therapy. Exceptions were for beginning of ADT with a month of Cosadex initially added. But for my nuclear Lu177 treatment, Psa fell from 25 to 17 in 16 weeks. But at least Psa went flat for first 8 weeks. It takes time for these things to work, if they ever do work. I had Xtandi added after 3rd Lu177 and Psa reduced to 0.32 at 1 year after beginning Lu177 and it seems Xtandi just lowered Psa, while not killing much Pca which was mainly done by Lu177.
But in 2020, Psa went back up, and 2 more doses brought Psa from 30 to 7, then Psa rapidly increased to double in less than 1 month.
So now at beginning of Ra223 I have Psa of ten times the level when I began Lu177, but have not much more total Pca in my bones. Next Ra223 dose is due probably by 7 May and with luck Psa rise speed will be reduced, and it takes time for Ra223 to get into bones, and even if Ra223 does damage Pca DNA , it takes time for those damaged Pca cells to actually die, and not be able to reproduce. What does manage to survive after Ra223 might mutate, but they just won't be able to grow after next doses of Ra223 are given. Of course its also possible bone mets could spread back to soft tissues, where there is nothing to stop their growth and the only thing which might work is chemo, or some other immune therapy or PARP inhibitor drug which should be matched to the DNA analysis of Pca cells, so a biopsy of future Pca cells might be needed. Suddenly, fighting Pca gets very complex and unpredictable and expensive.
Provenge got FDA approval after the makers claimed just as many men got 1 more year of life as those who got less, but then as time went on, the makers had to revise the 1 year to 4 months, and present cost of Provenge is I think about usd $150,000, but you need to have high white blood cell count. Is getting 4 months extra life worth $150,000? We don't read of many who wrote to us saying it didn't work, because maybe they died. But one man emailed me to say he had remission for 9 years, and he had got Provenge just after it was approved. It seems his white cell ability to kill his Pca cells remained strong in following generations of his white cells for years.
Marsden Hospital in UK have tried get Immune therapy to work, but I read they gave time benefit for 15% of men in trials, some got remissions, but some had horrendous side effects of immune systems attacking healthy cells. I have not read that Provenge therapy does similar horrid things.
You may find that as time goes on that doctors just don't keep a record of how long men survive between the time Psa was at beginning of any given therapy what happened during therapy, and what Psa was after maximum doses were given, and all that info is only kept during trials, and doctors with large number of cancer patients only have time to dole out the chemo or ADT or add on drugs so Psa is treated, but Pca remains active, and docs are not there to keep records so they cannot say that of 100 patients with Pca, 50 had Psa drop from say 100 to 10, and it took a year before Psa was back to 100, and docs don't know if more chemo worked any better, or a different type of chemo worked. Doctors working in the public hospital Medicare funded world have a simple protocol mapped out for each patient, so very often they have no idea at all how well any man might respond to things that supposedly will really kill Pca cells, and not just slow down Pca progress.
And little is known about how Pca cells which are not killed by chemo or Lu177 or Ra223 may mutate to become new forms of Pca which are reluctant to be killed by anything known.
And there are limits to how many doses you can safely have for any treatment. After you have one course of Provenge and Pca goes low, but then grows back again, can you have another lot of Provenge?
Its easy to see that a man becomes faced with increasing Pca and symptoms of breaking bones and nothing is there than will work, and ever stronger forms chemo give ever worse side effects, and I can understand how some men find that's the time to hoist the white flag, and get palliative care until death is a welcome release from the agony that living becomes.
I just don't know how long I have left.
Blood tests should show if any man could benefit from Provenge, but outcomes are what are, not entirely predictable. Many here have written to say Ra223 was good, and docs can't offer me any better, so docs did tests and said I could have Ra223. Its expensive, but but much Pca treatment is.
The cheap treatments like ADT are given first, expensive treatments given last.
Provenge gave my husband three good years on Xtandi before having to change to a series of other treatments that never did much good. Each patient is unique, so genetic testing is important to planning treatment. In his case, the perfect medication was not available for use for PCa at that time. The series of standard treatments for nodes only mPCa created a shriveled shell of the man I married 55 years ago, forcing me to retire to take care of him. Then our doctor pulled some strings (compassionate care use?) to get what turned out to be the right medication for my husband's type of PCa. His PSA has been undetectable (something none of the previous treatments achieved), for 1.5 years now and he is slowly regaining strength.
Keep on with the good fight warrior. I'm a 20 year warrior with many failed treatments behind me. I had Provenge a number of years ago when PSA started to rise on Lupron,Zytiga/Prednisone. After Provenge, which by-the-way, I found to be not terribly difficult to deal with, I started on Xtandi as a mono-therapy. I convinced the Oncologist to stop Lupron on a trial basis. My only metastasis I was aware of was a lymph node on the Iliac chain that had been irradiated. I have been on Xtandi for 7 years now with undetectable PSA. There are other things that you can try. Keep yourself educated and keep up the good attitude. .
Thank you, that's good to know. I'm currently on the Lupron, Zytiga, Prednisone diet. That's worked well for 3 years, but the bastard is stirring. Therefore, Provenge is in my future.
That’s interesting. I didn’t realize that xtandi could be so effective after zytiga failed. I thought they were in the same category. Are xtandi, zytiga and erleada all different in how they repress the psa?
At 70 years old now.... you'll be around for at least your 88th birthday.... so make hay for those 18 years.... don't waist them on wine, women and song.....
Provenge common side effects include: bladder pain; bloating or swelling of the face, arms, hands, lower legs, or feet; bloody or cloudy urine; body aches or pain; chest pain; chills; confusion; cough; diarrhea; difficult, burning, or painful urination; difficulty with breathing; difficulty with speaking up to inability to speak; double vision; sleeplessness; and inability to move the arms, legs, or facial muscles.
And an uncontrolable urge to bite your toe nails......Geezamacripe!!!
John is joking again, as is his sweet MO. Put Provenge on your side ASAP. Ninja cancer-fighting T cells unleashed. Most have no side effects except boredom during leukophoresis. Then just keep up all your other optimal treatments just the same. My Provenge was nine years ago and am doing quite well.
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