WANTED: Opines on what you think is, or is not, a time to worry about PSA increase

When Lupron failed me last year, my PSA doubled twice and was caught at 29. I was put on Zytiga, which dropped it down to @ 1. Over the past several months it began to increase at .2 a month, and last month a .4 increase. On Friday it was 2.3.

My Onc feels comfortable waiting until it starts to double to take any action. Which would be Xtandi. I don't feel comfortable with that. What say you, my friends?


BTW- I'm not freaking out over this increase, just curious as to what others think about it.

29 Replies

  • Joe,

    My MedOnc and I have this discussion a few times. He explains consistently that on Zytiga (I've been on since November 2014), PSA is only one of three markers to watch. The others are how I feel and what the scans say. So while my PSA has been rising (it was 17.4 in February), I was feeling good, and my scans were good. That meant I was still getting benefit from Zytiga, so we decided to stick with it. I have new scans later this month. I have not been feeling as well, and I expect the scans will not be as good, so I will not be surprised if we change therapies. I will say, it takes a lot of trust in your MedOnc to be able to stick with that. In the early parts of our treatments, we learn to be nervous over rising PSAs. I can't say I ever got over those nerves, but I do trust my MedOnc.


  • Good luck with your scans later this month. We are pulling for you!

  • Yost, I am glad you trust your MO. When I stopped responding to zytiga, and given my liver numbers were excellent my MO suggested I eat Breakfast with the zytiga to increase absorption, I ate fried potatoes and high fat yogurt, with it and it worked again for about 8 months as indicated by stable psa and stable scans. My liver numbers never moved from the lower end of normal.


  • I am on zytiga for 30 months but is progressing as far as psa. Do you think taking it with high fat meal may stop progression after taking it so long. I read that progression is caused by using prednisone as a fuel so blocking testosterone may not help. That could be why only 16% had a halt to progression on trial with greater absorption.

  • My expert MO said that they have found when zytiga quits working it is often not being absorbed , meaning that a blood test for zytiga in the system would be lower than expected for someone on zytiga, and that taking zytiga with food increases the absorption a lot, however I would only do this under the supervision of a Medical Oncologist as the liver numbers and some other numbers need to be followed when doing this. I did not know about prednisone feeding the cancer, or about the trial you mentioned, do you have a link to the paper?

    Have a great day,


  • Dan, was just taken off Zytiga whichhelped for 8 months and PSA went up and also alkaline phosphate(quite high) and thet now suggested Provenge. Got any thoughts here.


  • Sidn , How high did your psa go? and is alk phos out of range, If so I would prefer xtandi or chemo if cancer is starting to gallop, when that happens it is time to reign it in, and I am not sure Provenge is the drug for that, It would be Ok to boost the immune system if the cancer itself was basically staying stable, I saw your other post too However I think it is ok to do provenge with xtandi as you do not need a steroid with xtandi


  • Dan, I appreciate your advice and will definitely relate what you said to him. He knows I go with this group and actually I personally think..no matter how good he is supposed to be, that he likes to hear what you say.

    Thanks ...You are really well versed on everythg relating to many of us..being novices.


    I thk. there may be another sidn and if so I will sign as SidNw

  • What has your psa risen too, how about alk phos

  • Joe,

    I would go with your Onco....remember the resistance clock starts ticking as soon as you start Xtandi


  • Joe,

    I think your oncologist may be right in holding off on changing treatments at this time. However it makes sense to me to begin investigating other treatments and making a plan about if and when you will use them. I'm not sure what those treatments would be, but the most obvious ones that come to my mind are:


    Chemotherapy (docetaxel, maybe Jevtana)

    Immunotherapy (Provenge or one of the new checkpoint inhibitors, e.g., Keytruda)

    I think it's desirable to have a roadmap in place for what will cause you to change therapies and what therapies you would change to. That way there isn't a last minute crisis of trying to research alternatives and decide what to do.

    Doctors often don't like to do that. They often prefer to just "wait and see", then decide, but if you can get them to discuss the options in advance then it's easier to plan for the future and to understand what's coming.

    Best of luck.


  • I may be wrong but I think Keytruda for Prostate cancer is only available as part of a trial. Do you you have other information?

  • I think it's approved for non-small cell lung cancer but, as you say, I've only seen it in trials for prostate cancer. However some of the results I've seen make me think it's worth trying to get into a trial.

    I think there's at least one other "checkpoint inhibitor" (inhibiting the CTLA-4 checkpoint) that may also be in trials.

    And of course there are provenge and maybe prostvac.


  • If it is approved for any cancer , you can get it off label if the Oncologist is willing to put the effort into it, and the insurance is good enough. What genetic mutations does Keytruda work with.

  • I think with the NonSmallCell Lung Cancers, and some on-going Trials in other cancers, they particularly look for the expression of PD-L1 in tumor biopsy tissues when considering Keytruda.

    Keytruda, itself, blocks the protein PD-1, which unleashes elements of the immune system that are normally feedback down-regulated for the body's self-protection.

  • The CTLA-4 inhibitor is Ipilimumab aka Yervoy, first studied/used in other cancers. The Phase III Trial comparing it to placebo in advanced prostate cancer showed no benefits for Overall Survival. See also:


    "Ipi" also has a known history of some significant side effects, and, in fact, 9 men died during the Trial on the "Ipi" arm in the above Trial.


  • ctarleton

    Very good information, my oncologist was a principal investigator for this treatment, and he was not impressed with it.

    Thank you,


  • As an add on to Alan Meyer---If you decide you want to try Keytruda, you can do this outside of a clinical trial if you live in A RIGHT TO USE STATE---this is where you have a right to try any drug, even if not approved for your situation. Application is made thru the Dept. of State of that particular State. There are 23 States that have this Law, the requirements are different--I know my State of N.C. and Florida are right to use States. But you have to have a cooperating Doctor to go with your request--lots of paperwork--but worth it if you are on last legs.


  • My Onco saw me first in Jan 2015. I was 200 PSA and all biopsies (12) were cancer. Put on Zoladex on which I remain. In Jun 2015 she provided me with a road map of my treatments with monthly FBC and PSA. Still following road map and PSA 0.030. She's very involved in developing clinical triais i.e. STAMPEDE and we discuss if my road map is still OK. And look at options. So far so good, point is this plan works for me, gives me confidence in Onco.

  • Alan

    I agree with you 100%.


  • Xtandi is a great drug. I began it when my psa was 3.2. Within 6 weeks it was <0.1 and has remained there for 27 months. There are side effects though. pmichael.

  • Joe, The objective is to get as much out of every treatment as you can , that said Chuck Mack always talked about how sometimes the psa would go up as in his case and later still drop while on zytiga.Important not to give up on it to early. All of the replies here are excellent. We never know the side effects xtandi and future treatments hold, some have a terrible time with xtandi others just breeze right through it, as I did. For me looking back , I wish I did not worry so much every time the psa was up a little, only to rejoice when it dropped a bit the next time, I know this is unlikely for any of us.

  • I remembered being alive at initial diagnosis with a PSA of 5,006. I stretched my original Lupron ADT out as long as it would last, knowing that my PSA would eventually come up off of 1.0. My Onc rechallenged with Casodex (bicalutamide) when it was 4.7-ish, and that worked a couple of months. In my mind, I resolved to start researching my options when my PSA got back up to the 5.0 range (1/1000th of what it had been before). I consulted with Dr Beer at OHSU when my PSA was around 10-12, He was willing to start Xtandi any time, and would also offer a Clinical Trial involving Yervoy (Ipilimumab). I then consulted closer to where I live with Dr Small at UCSF. He also advised me that a PSA number on this side of resistance was not the only factor. My lack of symptoms and comparative scan results counted too. As my PSA was passing through 50 (1/100th of what it had been before), I spent more time having germ line genetic testing of approx. 55 genetic factors (all negative), scheduled and got a Ga 68 PSMA PET/MR (about 10 places "hot", compared to a full Christmas Tree at initial diagnosis), scheduled and got 2 out of 3 Provenge Treatments, and declined participation in another clinical trial involving Ipilimumab. Finally, when my PSA was around 95 (around 1/50th of what it had been before), I started Xtandi, at about 3 years after initial diagnosis. Five months later my PSA is 3.4, so far. No unusual problems with Xtandi at all. Yes, those high numbers can make for an anxiety-inducing roller coaster ride. On the other hand, considering where I started, I consider my self very fortunate. Overall, I am not inclined to "pull the trigger" to start the next cycle of resistance any sooner than necessary with any particular treatment. But, actually living through it and making such decisions from a position of inevitable uncertainty and incomplete information about one's very widely metastatic disease to bones and lymph nodes is never easy when it is actually happening, day to day, week to week, and month to month. Connecting with Support Groups really helps, too.

  • Joe, Instead of Keytruda, Lynparza (a PARP inhibitor) is used on label for prostate cancer. To qualify, you have a liquid biopsy (Guardant360) and if your cancer has a genetic defect (ATM or BRCA), then Lynparza can be prescribed. It works at the DNA level to stop cancer cells from duplicating. Dr. Myers has added it to my regime since late October.

    Best wishes with future treatments.

  • I'm a bit pissed Vandy. I just asked my Onc about doing genetic testing and he thought it was a waste of time. His theory is that the chances I have a specific gene mutation is a long shot. I'm beginning to disagree. I can't hurt to check, agreed?


  • Joe,

    Have genetic testing done, as the results may give you access to new treatment options. Guardant360 requires only 2 vials of blood, but it is not cheap. Medicare has been covering mine (have had 3).

  • You might want to browse around the Guardant360 website to learn and gather information before the next time you discuss germ line genetics with your Onc.


    When I had similar testing, I was referred to a cancer genetics clinic in the UCSF system, and had a saliva test that was sent off to Ambry Genetics in southern California. (Mine all came back as negative, which my offspring were glad to hear.)




    I think somewhere around 1 in 9 advanced prostate cancers might have an associated underlying inherited DNA repair mutation. And, among those 1 in 10, the most common one is BRCA-2.




  • Thank You Charles! I talked to my PCP today, and she has me going for Genetic Counseling. I have no clue what I'm about to experience, but I look forward to it.

    I think I'll leave my Onc out of the loop for now.


  • Once we hit matasteses, I think PSA is not the most important factor. Scans and bloodwork I think are much better indicators. I'd rather have a PSA of 500 with no signs of identifiable metatstes through CT,Bone,MRI scans than a PSA of 1.0 with identifiable metasteses. I don't think this holds for every case, but that's my view on it.

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