Xofigo users information

Taffypete
Taffypete Member Posts: 1
in Prostate Cancer #1

is anyone currently on Xofigo? I will be starting it next month. Everything I am finding on line seems very negative. I am 65. Most of the other post I found were from 2013. And the patients were men in their 80s.  Please help. Need some current information on side effects and is it worth taking. God bless

 

Comments

  • Old Salt
    Old Salt Member Posts: 1,505 Member
    #2
    This is from the 'official' Xofigo website

    The most common side effects of Xofigo include:

     

    • nausea
    • diarrhea
    • vomiting
    • swelling of the arms or legs (peripheral edema)
    • low blood cell counts

     

    Good luck with your decision and health!

     

    PS: It would be helpful if you gave us some background about your prostate cancer. This will allow a more focused response from people more knowledgeable than me

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #3
    Drug

    Taffypete,

    I am wholly unfamiliar with Xofigo, but this link may be helpful. The most-common side-effects listed in it are obviously identical to what Old Salt listed. 

    As Old Salt mentioned, the guys here who are expert (as laymen) with the various late stage and stage 4 drugs (I am NOT one of those guys) will need a full history of your treatments to better comment on your case.   Timing and the sequencing of those drugs is tricky but critical to maximize patient survival.

    I am NOT saying that you are stage 4, but that is the situation in which Xofigo is ordinarily perscribed. 

    http://chemocare.com/chemotherapy/drug-info/xofigo.aspx

     

    I wish you wellness, and am glad you found your way to this site,

    max

     

    .

     

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #4
    Max Former Hodgkins Stage 3 said:

    Drug

    Taffypete,

    I am wholly unfamiliar with Xofigo, but this link may be helpful. The most-common side-effects listed in it are obviously identical to what Old Salt listed. 

    As Old Salt mentioned, the guys here who are expert (as laymen) with the various late stage and stage 4 drugs (I am NOT one of those guys) will need a full history of your treatments to better comment on your case.   Timing and the sequencing of those drugs is tricky but critical to maximize patient survival.

    I am NOT saying that you are stage 4, but that is the situation in which Xofigo is ordinarily perscribed. 

    http://chemocare.com/chemotherapy/drug-info/xofigo.aspx

     

    I wish you wellness, and am glad you found your way to this site,

    max

     

    .

     

    How advanced is your case?

    Xofigo is typically recommended in metastatic cases in bone. These are advanced PCa cases who have failed other therapies or are experiencing pain. Please read my comment to another survivor in this link;

    http://csn.cancer.org/node/252406#comment-1492900

    Welcome to the board.

    Best wishes

    VG

  • grey ghost
    grey ghost Member Posts: 33
    #5
    Xofigo

    Hi,

    I have completed four doses of Xofigo as of the end of May. I am 70. So far I have not experienced any significant side effects. However, my PSA and Alk Phos levels have doubled each of the four months now up to 39 and 399 respectively.

    Am still playing golf, etc. I have occasional lower back aches, but that's it. I believe that being on Xofigo is the correct choice for me. At age 65, you should tolerate it with no problem.

    Please keep posting about your progress. I wish you the best.

     

  • grey ghost
    grey ghost Member Posts: 33
    #6
    Xofigo

    Hi

    Warning! Xofigo may not effect you as it did me, but I feel compelled to ask you to check with your dr. whether or not your ALK. Phos. and PSA have risen since you started. If so, stop it. If the levels drop you are good to go. Mine doubled every month and did not seem to alarm oncologist.

    After my 5th dose I became very ill and was hospitalized three times. My body nearly totally shut down. Potassium levels went shockingly low. I also suffered extreme weakness and low blood levels requiring two transfusions. I did not allow the 6th dose to be administered- best decision I made.

    Doing much better now, at least for awhile.

    Wish you well in your struggle

     

  • Old Salt
    Old Salt Member Posts: 1,505 Member
    #7
    grey ghost said:

    Xofigo

    Hi

    Warning! Xofigo may not effect you as it did me, but I feel compelled to ask you to check with your dr. whether or not your ALK. Phos. and PSA have risen since you started. If so, stop it. If the levels drop you are good to go. Mine doubled every month and did not seem to alarm oncologist.

    After my 5th dose I became very ill and was hospitalized three times. My body nearly totally shut down. Potassium levels went shockingly low. I also suffered extreme weakness and low blood levels requiring two transfusions. I did not allow the 6th dose to be administered- best decision I made.

    Doing much better now, at least for awhile.

    Wish you well in your struggle

     

    Thank you for the warning!

    I am sorry to read about the serious issues you encountered.

    Glad to read that you are doing better now!

     

  • JayBay
    JayBay Member Posts: 2
    edited November 2017 #8
    Inquiry

    My husband is considering going on this drug. He's been on Zytiga and initially his PSA went down but on the rise again.  How did you fare, if you don't mind me asking and would you recommend this course of treatment?

     

  • slickjy
    slickjy Member Posts: 26
    #9
    JayBay said:

    Inquiry

    My husband is considering going on this drug. He's been on Zytiga and initially his PSA went down but on the rise again.  How did you fare, if you don't mind me asking and would you recommend this course of treatment?

     

    Xofigo & Zytiga

    JayBay,

    I was on Zytiga and Xofigo from May 9th through end of October this year.  I received 3 Xofigo infusions over that time, never had any reaction or side affects at all.  PSA went down.  In late Sep, PSA started rising again, so stopped both Zytiga and Xofigo due to apparent ineffectiveness in my case.  Your husband's may well be different. Several people on this board report success with Xofigo and pain relief.  I'd had no pain throughout my "so far" 4 year ordeal.  However, since stopping xofigo, pain has surfaced for me.  Coincidence?  Don't know .... 

    Best of luck to you both!

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