Xtandi

Mark58
Mark58 Member Posts: 41
in Prostate Cancer #1

I haven't posted on this forum for several years. I have occasionally lurked. My 11th anniversary of being diagnosed with Prostate Cancer is coming up on 1-08-15. I'll be 69 on 1-03-15. I had a RP in 04. Radiation in 05 and again in 09. Implant in 05. The Lupron injections (5 years now) are no longer effective. My PSA jumped to 31 then to 47 three weeks later. I'll start Xtandi next week. I would like to hear about your experiences with this drug. I'm interested in any information on any side effects you can share. I'm also interested in costs thru the Medicare drug plan. My experiences on this journey have been bumpy to say the least. I expect the next several years to be worse. Depressed in Tennessee. 

Comments

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #2
    bump

    Mark....wish the best for you.............hopefully poster(s) experienced and/or knowledgeable with this drug will reply

  • Old Salt
    Old Salt Member Posts: 1,505 Member
    #3
    Search here and there

    Sorry to hear about your condition. Because I haven't had to use Xtandi, I can't offer you my personal perspective. But I put the name in the Search box. About nine threads popped up. Some of them won't be useful to you, but perhaps there will be some wisdom there. Of course, you can do the same thing on the other prostate cancer forums. Or, even better, use PubMed to search for clinical outcomes etc.

  • Old Salt
    Old Salt Member Posts: 1,505 Member
    #4
    Old Salt said:

    Search here and there

    Sorry to hear about your condition. Because I haven't had to use Xtandi, I can't offer you my personal perspective. But I put the name in the Search box. About nine threads popped up. Some of them won't be useful to you, but perhaps there will be some wisdom there. Of course, you can do the same thing on the other prostate cancer forums. Or, even better, use PubMed to search for clinical outcomes etc.

    Here's a recent review (abstract only)

    Enzalutamide: a review of its use in metastatic, castration-resistant prostate cancer.


    Abstract

    Enzalutamide (MDV3100, XTANDI(®)) is an androgen receptor inhibitor that is indicated for the treatment of metastatic, castration-resistant, prostate cancer (mCRPC) that has progressed despite treatment with docetaxel. This article reviews the pharmacology, efficacy and tolerability of enzalutamide relevant to this indication. In a randomized, double-blind, placebo-controlled, multinational, phase III trial in patients with mCRPC progressing after docetaxel therapy, enzalutamide significantly prolonged overall survival (OS), delayed prostate specific antigen progression and prolonged radiographic progression-free survival and time to the first skeletal event. The median OS was 18.4 months in the enzalutamide group and 13.6 months in the placebo group, which represents a 37 % reduction in the mortality risk in the enzalutamide group. Enzalutamide was also associated with significant benefits in health-related quality of life and in pain palliation. Enzalutamide was generally as well tolerated as placebo during the trial, with most adverse events at a mild or moderate level of severity. Enzalutamide carries a small increased risk of seizures that appears to be dose-dependent. Enzalutamide is an efficacious and well tolerated treatment for this severe, rapidly progressive disease.


  • tarhoosier
    tarhoosier Member Posts: 195 Member
    #5
    Enza (xtandi) SE's

    Mark:

     

    I met with my oncologist two weeks ago and he said he would treat my rising psa with Xtandi. He said the most frequent side effect is drowsiness and if pills are taken at bedtime or nearabout then that problem solves itself. Xtandi also blocks some heart and cholesterol medications but there are other medications to substitute that are unaffected, if that applies to you. He says it is an amazingly benign drug for its tested effects on tumor. Cost is covered in Medicare, according to him.

  • Mark58
    Mark58 Member Posts: 41
    #6
    Since I posted last week, I

    Since I posted last week, I have started the Xtandi. It is very expensive but Medicare part D came through. There was also financial aid to cover the deductible. I've taken 11 doses and have yet to see a significant side effect other than a tendancy for afternoon naps. I appreciate the replies that were posted. I have been doing a lot of research since my original post. Thanks again for the information.

  • Mark58
    Mark58 Member Posts: 41
    #7
    Mark58 said:

    Since I posted last week, I

    Since I posted last week, I have started the Xtandi. It is very expensive but Medicare part D came through. There was also financial aid to cover the deductible. I've taken 11 doses and have yet to see a significant side effect other than a tendancy for afternoon naps. I appreciate the replies that were posted. I have been doing a lot of research since my original post. Thanks again for the information.

    Drowsiness with Xtandi

    I mentioned the drowsiness I am experiencing with this Xtandi. I'm into my 3rd week of taking it and I've discovered that for me, if I take an afternoon nap I,m ok. If I do not take an afternoon nap, I can forget about watching evening TV programs. I can't keep my eyes open. It's the drowsiest I have ever been. 

  • zack52
    zack52 Member Posts: 1
    #8
    Xtandi

    I was in a National Institute of Health study for one year.  My group took four pills 160MG a day of Enzalutamide (Generic name Xtandi or Xandi)  It knoched my PSA from 10.63 down to 0.02 in 12 weeks with minimal side effects.  The only side effect that I experienced was a very slight tenderness in the breast area after the 12 weeks.  Enzalutamide is supposed to stimulate the immune system to fight prostate cancer.   After 12 weeks we stopped taking the Enzalutamide to see how fast the PSA increased.   After 40 weeks without Enzalutamide my PSA climed to 13.19, but the PSA doubling time was continualy improving.  I was quite impress with the effectiveness of  the pills in knocking down my PSA.

    zack52

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #9
    Mark58 said:

    Drowsiness with Xtandi

    I mentioned the drowsiness I am experiencing with this Xtandi. I'm into my 3rd week of taking it and I've discovered that for me, if I take an afternoon nap I,m ok. If I do not take an afternoon nap, I can forget about watching evening TV programs. I can't keep my eyes open. It's the drowsiest I have ever been. 

    Welcome

    I am sorry, Mark, that your treatment has migrated into chemotherapy. I am chiming in due to having followed two friends through years of chemo for PCa, and the fact that I did six months of a very harsh chemo regimen six years ago for advanced lymphoma (now in full remission for five years). In addition, I am awaiting RP next week for what is apparanty quite mild PCa.

    Neither of my friends (they have both now passed) took Xtandi; it may have not been available, or counterindicated for some other reason.  Both, after doing long courses of hormonal treatments then went on the most common, first chemo employed (in most cases) against metastatic, hormonally-resistant disease, docetaxel ('taxotere'), a drug also used against breast cancers.

    Taxotere was effective for both for a long time (perhaps two years or less), after which they next moved on to Zytiga, an adrenial inhibitor.  One friend then benefited from a drug not yet approved when the other passed, Jevtana. Jevetana was highly effective for him,  knocking down a PSA that had gone to around 1,000 to 300 or thereabout (I am recalling this from memory, and much of it is from several years ago).

    One important thing I learned firsthand following them is that new drugs for late stage PCa are coming out very rapidly. Jevtana, literally, was not approved for the second friend until his doctors had already started discussing hospice with him. He was one of the first patients at our hospital to receive it.

    MOST chemo drugs (there are way over 200 FDA-approved chemo drugs in the US) cause serious fatigue. Some recommend nutrition and pt to battle this, but it is the norm.  When on my five drug regimen, which lasted six months, I slept from 15 to 17 hours per day. If you require them later, know that Taxotere, Zytiga, and Jevtana caused them severe fatigue, and the docs said to expect it.

    As I stated, I am unfamiliar with Xtandi itself, and your clinical couse may be very unlike what my friends' were, although they both lived a long, long time after their first-line therapy, which was RP for both.

    An excellent site for any chemo drug is:

    http://chemocare.com/chemotherapy/drug-info/xtandi.aspx#.VL1t7O85C70

     

    If this does not show as a hyperlink (clickable) simply type in the address manually.

    The info is all current, and the site is a project of iceskating champion Scott Hamilton.  I checked, and it does have a section on Xtandi.

    Wishing you many years of wellness,

    max

  • Mark58
    Mark58 Member Posts: 41
    #10
    zack52 said:

    Xtandi

    I was in a National Institute of Health study for one year.  My group took four pills 160MG a day of Enzalutamide (Generic name Xtandi or Xandi)  It knoched my PSA from 10.63 down to 0.02 in 12 weeks with minimal side effects.  The only side effect that I experienced was a very slight tenderness in the breast area after the 12 weeks.  Enzalutamide is supposed to stimulate the immune system to fight prostate cancer.   After 12 weeks we stopped taking the Enzalutamide to see how fast the PSA increased.   After 40 weeks without Enzalutamide my PSA climed to 13.19, but the PSA doubling time was continualy improving.  I was quite impress with the effectiveness of  the pills in knocking down my PSA.

    zack52

    Thanks

    Thank you Max and Zack52 for replying. My 2 month check-up evealed that my PSA had dropped from 47+ down to 0.60. My Doctor and I were quite pleased to say the least. I have another appointment in early March and expect similar results. My side effects are minimal. Mainly fatigue. I tire out pretty quick. Afternoon naps help me make it to a normal bedtime. I am on the treadmill several times a week. Not training for a marathon. Just keeping in shape awaiting yard work, camping and fishing this Spring. Planning an RV trip early March to Florida and the Keys. Really looking forward to that. Planning this as a leisurely trip. No reservations. Take it a day at the time. As my handle indicates (Mark58) I was diagnosed at age 58. I just turned 69. I've been retired for 4 years and living life to it's fullest. I will become a Great Grand Dad in July. That will be SPECIAL. My Pharmacist at Vanderbilt says there are several patients that have been on Xtandi for over 2 years. I hope I have similar results. Zack52: Do you think your DR. will put you back on Xtandi? Max: I will be checking out the Website you indicated. Thanks again to both of you!!

  • Mark58
    Mark58 Member Posts: 41
    #11
    Mark58 said:

    Thanks

    Thank you Max and Zack52 for replying. My 2 month check-up evealed that my PSA had dropped from 47+ down to 0.60. My Doctor and I were quite pleased to say the least. I have another appointment in early March and expect similar results. My side effects are minimal. Mainly fatigue. I tire out pretty quick. Afternoon naps help me make it to a normal bedtime. I am on the treadmill several times a week. Not training for a marathon. Just keeping in shape awaiting yard work, camping and fishing this Spring. Planning an RV trip early March to Florida and the Keys. Really looking forward to that. Planning this as a leisurely trip. No reservations. Take it a day at the time. As my handle indicates (Mark58) I was diagnosed at age 58. I just turned 69. I've been retired for 4 years and living life to it's fullest. I will become a Great Grand Dad in July. That will be SPECIAL. My Pharmacist at Vanderbilt says there are several patients that have been on Xtandi for over 2 years. I hope I have similar results. Zack52: Do you think your DR. will put you back on Xtandi? Max: I will be checking out the Website you indicated. Thanks again to both of you!!

    Update on Xtandi

    It is now August. My PSA has slowly climbed to 4.11 as of 3 days ago. Brief summary:

    2/24/14..........1.89

    10/3/14.........31.52

    11/1/14.........47.62

    1/05/15..........0.60

    3/03/15..........0.84

    6/08/15..........2.55

    8/07/15..........4.11

    My Dr. wants to switch me over to Zytiga (his nurse said as much). I don't feel it is time yet. In my opinion it is still working especially when you compare my PSA now to what it was almost 10 months ago. It is climbing but I don't feel it is time for a medication change. I will see my Dr. on 8/13. I would appreciate any and all replies with your opinions and/or experiences.

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #12
    When changing drugs

    Hi Mark,

    I do not use Xtandi or Zytiga (yet) so that I cannot describe experiences, but I have followed threads on those drugs and did some researches because I believe that I may need using them in my future treatment. I have been asymptomatic since diagnosis which condition seems to be homologous in patients taking these refined drugs.

    Your doctor’s wish in switching drugs is common in HT therapies: “Once one drug stops working then another takes its place”. This is a sort of sequential controls using the PSA marker and patient’s symptoms to trigger the “change over”.
    Your doctor may have a defined PSA threshold limit on Xtandi that was verified in your last increase so that he recommends you to stop Xtandi and start Zytiga. Another doctor could use a higher threshold, however, the limit would never be as high as the PSA=47 level of your ten month ago.

    There is some reasoning when changing drugs. Many think: …why wait if refractory is already present. But some cancers react differently and one should understand what is occurring and how do the drugs work and be effective against the cancer. In fact in the sequential treatment these drugs can precede each other and can be restarted again once the other fails. They are different and use different pathways to metabolize and to act. Xtandi (enzalutamide) works like the typical anti-androgen that “stucks” to cells’ receptors preventing androgens (testosterone) from feeding the cancer. It does it at intratumoral level too. Zytiga (abiraterone) works at the testes (factory of testosterone) and in other parts of the body by blocking the enzyme CYP17 used in the process of manufacturing testosterone from cholesterol. Their intent is to avoid androgens from reaching the cancer, turning them dormant or killing it by starvation.

    An increase of PSA while in treatment means that some of the cancerous cells managed to survive and continue life feeding on very tiny quantities of circulating androgens (testosterone, dehydrotestosterone, etc). At such stage, Zytiga would stop the manufacturing and the cancer would stop producing PSA and retreat to its hiding. The process can be repeated over and over until the cells do not need the testosterone to survive and one becomes refractory to the drugs.

    This behavior of cells can be understood through the Darwin theory on revolution that states on “the individual's ability to compete, survive, and reproduce". All is in our genes and cells.

    Some cancerous cells manage to find substitutes to androgens or reproduce androgens by themselves just to survive. Enzalutamide is a substance with similar bio structure of the testosterone which could have becoming food for the cancer. At first signal of refractory one should avoid taking such drugs.

     

    In the net you can find many papers of the above subject. Here is a thread discussing HT principles;

    http://csn.cancer.org/node/213002

     

    Best wishes,

     

    VGama

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