It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Cancer: Prostate Message Board

  • PSA at 10,554 and wanting to know about Xtandi

  • Post New Thread   Reply Reply
    Thread Tools Search this Thread
    Old 12-03-2019, 09:39 AM   #1
    ssw0120
    (male)
     
    Join Date: Dec 2019
    Location: LaGrange
    Posts: 2
    ssw0120 HB User
    PSA at 10,554 and wanting to know about Xtandi

    I wanted to know if anyone on here has taken Xtandi and how it has worked for them or is working for them currently and possible side effects people have had. I just stopped chemotherapy and have decided to possibly take Xtandi. The chemo wasn't working this time around. After three sessions, it rose from 7,200 PSA to 10,554 PSA.

     
    Reply With Quote
    Sponsors Lightbulb
       
    Old 12-03-2019, 03:54 PM   #2
    IADT3since2000
    Senior Veteran
    (male)
     
    Join Date: Nov 2007
    Location: Annandale, VA, USA
    Posts: 2,236
    IADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB User
    Re: PSA at 10,554 and wanting to know about Xtandi

    Hi ssw0120 and welcome to the Board!

    I’m sure you already know you are in a fight for survival. Congratulations on making it this far!

    I have not been on Xtandi, but have followed developments for years. I can give you some leads and information, but there is probably little research on Xtandi’s effectiveness in patients with a PSA as high as yours as most of us will not survive to the point you have. (I have heard of a few patients who have done well with PSAs in your neighborhood, and even one who did well after finally finding effective treatment after his PSA had reached 25,000, which is by far the highest I have ever heard of, a case presented by a doctor well-known for treating very advanced cases. There is hope.)

    Do you know how to use the US government website PubMed (www.pubmed.gov)? It publishes brief descriptions and sometimes leads to free access to complete papers for reputable medical research published all over the world, but translated into English. This is the same data that doctors rely on. You can do searches. For example, you could search for – prostate cancer AND (Xtandi OR enzalutamide) - which today would yield a list of 1,618 publications (“enzalutamide” is the technical name for Xtandi). Some articles would only have a brief mention of Xtandi, but you can sharpen the list by using the title filter, which means that the uncapitalized words in your search string must be included in the title of the publication. Activating that filter reduces the list to 445 hits – quite an impressive volume of research. By clicking on the blue hypertext you can view an abstract for the paper; that gives you the key points. You could add a filter for “clinical trial”, which reduces the list to just 50.

    That’s all I have time for right now, but I would be glad to discuss this further and answer questions.

    Good luck!

     
    Reply With Quote
    Old 12-03-2019, 04:18 PM   #3
    ssw0120
    (male)
     
    Join Date: Dec 2019
    Location: LaGrange
    Posts: 2
    ssw0120 HB User
    Re: PSA at 10,554 and wanting to know about Xtandi

    Thank you for taking the time to respond. I was wondering if you could give me some information so that I could look up the case with the person who had the 25,000 PSA? I would be interested in reading about that case, if possible. It seems very difficult to find any cases that have high PSA numbers such as I have.

    I started out three years ago being diagnosed when I was at 9,000 PSA. I came all the way back down to a 3 and then slowly rose up again.

    I will also check out that government site. Thank you for that information as well.

     
    Reply With Quote
    Old 12-04-2019, 01:13 PM   #4
    IADT3since2000
    Senior Veteran
    (male)
     
    Join Date: Nov 2007
    Location: Annandale, VA, USA
    Posts: 2,236
    IADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB UserIADT3since2000 HB User
    Re: PSA at 10,554 and wanting to know about Xtandi

    Hi again,

    The most recent information I have about this case involving a patient with a PSA of more than 25,000 is from a DVD of a talk by his doctor at a conference for patients (an annual event) in September of 2018. It starts at the 2 hour and 37th minute point on the DVD for his talk and runs for about a minute, including a slide. Here is my own transcript of what he said: “I’ve brought this case to the conference before: a PSA > 25,000, many abdominal metastases, a young guy with liver and kidney failure, bowel obstruction, etc., in June 2011, treated with ADT, and resulting in a PSA of 0.45 in October 2012 as his nadir [meaning the PSA lowest level], but then developing CRPC [meaning Castration (hormonal therapy, ADT] Resistant Prostate Cancer]; he still had refractory disease that we could see on the PET scanner. Above [a slide, not available here] shows Jan 2013 at PSA of 1.1, treated with chemo and Zytiga, but a PSA of 1.0 still in March 2013, with worsening disease; treated with surgery RPLND (surgery with node dissection) by Dr. [names a very well known prostate cancer doctor who practices at his clinic]. He’s now disease free, on no therapy, doing outstanding with a PSA <0.10 in July 2018, 7 years [maybe from diagnosis of the initial recurrence, but five years with his clinic) years later. So that’s what I mean by killing the cancer three different ways, and I do think that they should not be overlapping mechanisms of action, you’ve got to mix it up: not just types of hormone therapy, but something like chemo, ADT, radiation, that’s a good mix. There are a lot of nuances to using these agents.”

    A key part is that that huge PSA value of more than 25,000 was reduced by ADT to just 0.45. His ADT may have been Zytiga (abiraterone acetate), but since the doctor’s comment mentions using that next, with chemo, the ADT may have been single agent (like a Lupron type drug, or Firmagon (degarelix), or a combo with a Casodex type drug, or triple blockade, also adding Avodart or Proscar. A key point is that men with very high PSAs often respond very well to ADT, as this patient did. We do not know anything about what his treatment was prior to coming to this doctor. I was able to check back to the doctor’s 2012 talk, and he said the patient came to him with cancerous spots in his belly as big as softballs; he was unable to have BMs, couldn’t eat, and was jaundiced, but the doctor did not describe the nature of the ADT used.


    I did a search on PubMed to see if this doctor ever reported this patient in a "case report," and the result was negative. I'm guessing that this patient's case has never been described in a paper formally published in a major journal.


    I have a book by a now retired very well known medical oncologist, with a practice dedicated to prostate cancer, that describes three cases of men with PSAs over 1,000 who did very well on ADT plus other treatment: one at 1,026 ng/mL at diagnosis (in complete remission at book publication), one at 3,488, rising to 4,000 (in complete remission but under consolidation treatment at book publication), and one at 3,656 with a PSA down to about 2 at book publication with further treatment pending. While these PSAs, though extremely high, are much lower than yours, their cancers were probably doubling (reflected in PSA) fairly quickly, so they probably would have been in your neighborhood within a year if they were not treated. The author describes the treatments used to push the cancers back. (The author had to deal with his own case of challenging metastatic prostate cancer, diagnosed in 1999; he is now doing very well more than 20 years later.) In my own case, my initial PSA of 113.6 dropped, slowly, much slower than for most men, to less than 0.01 ng/mL. These examples show the powerful impact ADT can have on prostate cancer.


    I am convinced that many of us with advanced, challenging, life-threatening cases need to get really expert treatment. A lot of the fine doctors who are locally convenient to us, and who do great work in treating the usual kinds of prostate cancer cases, are not, in my layman's opinion, good enough for the out-of-the-box, tailored treatment needed to give us advanced, challenged patients good outcomes. We sometimes need to throw the cancer equivalent of a Hail Mary pass, at least judged by the standards of conventional medicine. It can be hard to find these doctors. One clue is that they tend to have "medical oncology" practices in which they see prostate cancer patients almost exclusively, but they are quite ready to use the services of talented radiologists, radiation oncologists, and urologists. In my own case, I and my local, caring, talented medical oncologist followed strategic guidance from these expert doctors. That worked very well for me.


    What treatment did you have prior to your chemo? Were you ever on ADT, or did your medical team move you straight to chemo? If you have not had ADT, I’m thinking you would have a great response to a drug like Xtandi or Zytiga because men with very high PSAs often respond extraordinarily well to ADT.

    Here’s how to activate the "title" filter, which I mentioned earlier, when searching for a paper on PubMed. (Note, this is for the legacy version of PubMed, which I am used to. They just rolled out a new version.) In just a few steps you can filter your search so that only articles that have each of the key terms of your search in the paper’s title will appear. It’s quicker to do it than describe it, but it’s not completely intuitive, so here’s how it’s done: on the left side of the home page where the filters are, click on “Show additional filters,” then click on “Search Fields” when the “Additional filters” menu pops up, then click “Show” in the box, move up to “Search Fields,” which now appears, and click “Choose”, and when the box appears, to the right of “Affiliation”, scroll down to “Title” and click “Apply”. Of course you can also select any of the other filters that you want, such as papers that have all your key search terms in either the title or the abstract (“Title/Abstract”). By clicking on the blue hypertext, you can view a brief description (“abstract”) of the key elements and results of the study; if there is no abstract, sometimes clicking on the “Full Text Link” in the upper right corner will show the article, especially if it is short. Sometimes there is a link to a free copy of the complete paper, and there’s also a filter for that.


     
    Reply With Quote
    Reply Reply

    Related Topics
    Thread Thread Starter Board Replies Last Post
    Raised PSA and free psa changed fiestylisa46 Cancer: Prostate 1 11-14-2019 02:55 PM
    Wanting to recover vs wanting to stay thin mangomania Eating Disorder Recovery 6 07-14-2012 02:07 PM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 09:17 AM.





    © 2019 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!