Rising

Just got back from my oncologist. I have been on Lupron and Casodex for 2 years. I also did 6 courses of Docetaxel at the beginning of my 2 year treatment So...in 3 months my psa has risen from 0.1 to 0.7.

Anyone else had similar rises? If so, what was/is the next step? Thanks all.

26 Replies

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  • The most common next step is Zytiga or Xtandi.

    What did the doctor recommend?

    Alan

  • Alan,

    Doctor wants to test my psa again in 1 month to make sure the rise wasn't a "fluke". If it's still rising then stop Casodex. Then order scans, etc. In 3 months at our next meeting discuss next step, probably Zytiga while continuing Lupron. When would provenge come into play? Also, on the average, how long is Zytiga effective? I'm all for trying another course of Docetaxel What's your opinion? Thanks for the response.

  • I'm not competent to say whether you should try another course of docetaxel. I'm not really competent to say what you should try. But here are some layman's ideas to discuss with your doctor.

    There are other chemotherapies that are sometimes used. One that I have heard of is cabizitaxel - brand name Jevtana. I don't know if they're worth trying or not.

    About Zytiga, I mostly have anecdotal evidence. One man I know got a remission of about 11 months before his PSA started rising again. Another got several years last I heard. I haven't heard from him recently but he may be on his fourth year and still going. I think some others only get a few months.

    As for Provenge, here's some information about it:

    ncbi.nlm.nih.gov/pmc/articl...

    At one point the article says that patients in a major trial with a PSA below 22.1 got an average of an extra 13 months of life while those with PSA > 134 got only 2.8 months on average. As with so many of the treatments, it seems to be important to get treatment earlier rather than later. Search for the results of the IMPACT trial in the above article to see those figures.

    Trying the Casodex withdrawal first is by no means a terrible idea, it sometimes works. But maybe you can work out a plan with him to schedule a test a month after the Casodex withdrawal to start right away on Zytiga + Provenge or another immunotherapy so there isn't a lot of fooling around and waiting for appointments while the cancer keeps growing. I don't know how long it takes to schedule Provenge, or who administers it, so early planning may be important.

    Best of luck.

    Alan

  • thank you

  • I' m very confuse as to just what she said.

  • Nameless9999 wrote: "I' m very confuse as to just what she said."

    That's a problem that we all have. You get 15 minutes with a doctor, a lot of things are said that you don't understand, and then you go home and aren't sure what happened.

    I suggest that, in future visits, bring a wife or family member if you have one who can also listen and take notes. Write down questions in advance and write down the answers - checking them with the doc if you aren't sure.

    Another thing that can be a great idea is to bring a recorder to the appointment and ask the doc if it's okay to record the session so you can listen again later. A portable tape recorder will work or, if you have a smart phone, you can get free recorder apps from one of the app stores (Google or Apple.) Be sure that you experiment with it first so that you know how to position the phone and turn recording on and off, and how to find, play, and download the recording to your computer. Be sure to charge the phone before you go.

    Hope that helps.

    Alan

  • Why did you stop the docetaxel after 6 cycles? I did 10 cycles before I took a 3 month break, then came back for 3 more before it stopped working. I moved on to canazitaxel for 3 cycles with no effect. I had been on Zytiga for the better part of a year and Xtandi for a few months before we moved on to chemo. For me, PSA has been a continuing high number...830 at diagnosis, 73 at its low, nearly 5000 in December and 2530 last week. Through it all I have continued to be generally pain free and without side effects from the various treatments, thank goodness. Keep fighting!

  • the docetaxel was stopped because it was part of the CHAARTED trial which called for 6 courses.

  • Gecrellin, when did first start the docetaxel?

  • I was on docetaxel alone from May 2015 through April 2016.

  • It sounds like you followed a similar course to my husband. I'm guessing you were diagnosed at Stage IV with a 9 Gleason? The protocol you describe is relatively new (from about 3 years ago) from the CHAARTED study. This was a trial to see if early chemo (Docetexal) for aggressive PCa would have a better effect than late-stage chemo (which was the Standard for a long time). It's a long-range study (overall survival rather than immeidate results).

    The results of the study were amazingly positive overall. My husband did this shortly after it was shared at the big oncology meeting. He went through Lupron/Casodex in a little over a year, including the Docetexal -- 6 courses is standard for this protocol. I think there is not so much of a direct effect from the chemo at this stage -- the idea is more that it gets the aggressive cancer cells early and prevents/slows them down from multiplying. So it's a long-term, no hard-core evidence that the chemo had an effect. In his case -- it didn't seem to have a direct effect. Dishearteningly, after a year or so (with the chemo at about 5 months), he went to CRPC (castration resistant). Dumped the Casodex and started on Xtandi (enzalutamide). He's been cruising on that for almost 18 months now, although his PSA is creeping up. As others posted, I've heard a wide range of tolerance for Xtandi. Other than significant body changes akin to menopause, he's remained healthy and doing well in early retirement. He also remains on Xgeva for his bones and the Lupron. Our anecdotal theory is that the Docetaxel *did* have an effect in the next round of treatments.

    NOTE -- after the transition to CRPC he had immunotherapy/Provenge and RA223/Xofigo. The key thing with Provenge is that it has to be done before any visceral (organ) metastasis. Bone mets OK, and as I think someone else said, we were advised that earlier is better. This is also an "overall survival" improvement rather than a specific immediate result. In other words -- who knows if it worked in an individual but in clinical trials, the overall result was increase in OS. Kind of the same with Xofigo.

    The PSA is still very low, even on a relative scale. Some people have PSA is hundreds or thousands. Some, like my husband, never went very high despite a raging cancer. At dx he was at about 40, and it stays in the single digits and tenths even as it goes up, so be careful about "comparing numbers." Doubling time is something of a marker, but we were cautioned that with numbers below 1.0, not to get too fixated on the doubling time. Our consulting oncologist (researcher) said something about 2.0 being a lower limit for changing treatment. Did also hear something about a Casodex "bounce" -- a body reset that lowers PSA temporarily in response. I can't remember what happened for my husband but if it was anything, it wasn't long.

    Sorry if this is too long and too detailed. I share because it was so hard to get personal info about actual experiences at the beginning. actually until now. Very happy to have found this Advanced PCa site.

  • Great info thank much!

    Bob

  • thank you very much for the entailed information. Yes, i was part of the CHAARTED study. Do you remember if your husband had his provenge treatment before he started Xtandi, or during it? No, your information wasn't to long or detailed. It's great, great information and I'm very grateful.

  • These high PSA numbers astound me . I'm having next test in a week expecting around 2.0 then getting axumin scan. I guess I'm relatively fortunate as a g9 pt3b with low PSA albeit doubling monthly now.

    Bob

  • I was on Lupron and Casodex (also Avodart and Cabergoline) for 2 years when my PSA started rising. I switched from Casodex to Nilutamide and the PSA dropped to 0.006. Still on it after 3 years and still undetectable.

    Clint

  • I had similar results as clintmeek. Took Lupron and Casodex for about a year till psa started rising then Onc. stopped Casodex and changed to Nilandron (nilutamide). Psa has been 0.1 or less for over 2 years.

  • Clint, I started on 50mg of the Casodex on March 16th and will start chemo and a shot of lupron with xgeva on March 30. My oncologist only prescribed the Casodex for 28 days. I hope to have the same good results like you- Nick

  • Nick, a couple of points about Casodex and Lupron. My original urologist back in 2008 put me on 3 month Lupron for a year without Casodex. I have read since then that the hot flashes and discomfort I experienced would have been reduced if I had started Casodex two weeks before the Lupron injection. I still experienced hot flashes for 3 or 4 weeks after each of the 3 month Lupron shots I received.

    When my PCa recurred in 2011 went back on Lupron and Casodex which reduced my PSA but I went on the one month (7.4 mg) Lupron this time around. No more hot flashes or discomfort.

    Good Luck, Clint

  • Wow, 9 years and it appears you're still going strong. That's great. We're you on subsequent drugs besides lupron or you have been on lupron since 2008? Thanks, Nick

  • Gleason 4/4 with positive margins. RALP in 2008, followed by IMRT. Cancer recurred in 2011. No visible mets to date. I have been on ADT4 (Lupron, Nilutamide, Avodart, Cabergoline) for 5.5 years. Added Metformin 2 years ago. Provenge in 2014. Stopped Lupron Oct 2016 but continue other antiandrogens, Current PSA <0.006, T =6. Had genomic testing done, no BRAC.

    Good Luck, Clint

  • Thank you Clint

  • Your Doc is correct, confirm the PSA and if it continues to rise stop the Casodex. Also, have the Doc check to make sure that you are castrate. If you are not then substitute the Lupron with Firmagon and see if that brings you to castrate levels.

    Provenge should be the next step if the PSA continues to rise and you are castrate. Provenge is best given as early as possible, ideal is immediately when you know that you are castrate resistant. Too many docs wait. It needs time to have a good effect, Provenge is different than other prostate cancer treatments, you do not see its effects (decreasing PSA etc.) immediately as we do with the other treatments.

    After Provenge you could move to Zytiga or Xtandi. Which is a better choice is not clear because they were never (and never will) compared with each other in a head to head trial.

    Joel

  • Can I take Zytiga while undergoing provenge treatment? Thank you.

  • Usually not done, but it takes only 1 month to go through the entire Provenge cycle then on to Zytiga

    Joel

  • Thank you JoeLT. I'm considering firing my oncologist as she doesn't "believe in provenge. It appears that she wants to rush me into Zytiga. Would you happen to know if Medicare covers provenge? Thank you.

  • In ost cases it does, there are some regional differences. Provenge is controversial because it does not have any good biomarkers. If you are generally happy with the oncologist and wish to stay with her have a frank conversation with er and ell er you want to have Provenge. Acknowledge that she doesn't believe in it, but tell her you will go on Zytiga after completing Provenge and see how see reacts. It may work out fine.

    Joel

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