Votrient/Pazopanib

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Comments

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #22
    ClaraW said:

    clinical equipoise
    I think intervention vs placebo rct is unethical unless there is clinical equipoise

    clinical equipoise
    Is this ever possible in an rct with placebo, Clara?

    Oh boy, are you opening up exciting intellectual vistas, looking at the psychology of Hawthorne Effects and Halo Effects and then, in an entirely different direction, roaming into the perilous waters of Bayesian Logic!

    On the latter, I wonder whether you've encountered a paper entitled

    "Ethics of clinical trials from a bayesian and decision analytic perspective: whose equipoise is it anyway?"

    If you haven't, it's at
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1125887/

    This pretty plainly addresses issues I adumbrated in my post above. These meta-level deliberations seem to me to be more important than most academic papers, since they deal with the underpinnings of all such papers, don't you think?
  • foxhd
    foxhd Member Posts: 3,181 Member
    #23
    Max Power said:

    adrenal gland
    I too had some growth on my adrenal gland and also the doc wasn't too concerned about it. I assumed it was because all my lesions were in check. I still have 2, and the one affected was the one without a kidney. (Maybe that's why?)

    drugs
    Boy, am I glad that I've only been on MDX and that it is working. Too much to process sometimes. I am getting lazy and not investigating options at this time. Hope I never have to.
  • alice124
    alice124 Member Posts: 896 Member
    #24
    foxhd said:

    drugs
    Boy, am I glad that I've only been on MDX and that it is working. Too much to process sometimes. I am getting lazy and not investigating options at this time. Hope I never have to.

    thank goodness
    I'm down with that Fox.

    This thread falls under "things I didn't know I didn't know." Totally lost but googling, but I do that a lot when TW talks. (but love u anyway TW!)

    And, of course, ELF!
  • foxhd
    foxhd Member Posts: 3,181 Member
    #25
    alice124 said:

    thank goodness
    I'm down with that Fox.

    This thread falls under "things I didn't know I didn't know." Totally lost but googling, but I do that a lot when TW talks. (but love u anyway TW!)

    And, of course, ELF!

    FLY
    Right back at ya Alice!
  • angec
    angec Member Posts: 924 Member
    #26
    Max Power said:

    it's been 3 years now
    stable with small progression between drugs. Starting Sutent, seems to have stability with some very small shrinkage, I'll take it. Docs and I are working on minimizing side-effects now. I was recently moved from a 4week-2week cycle to 2week-1week, currently seeing how it works.

    Thank you Max for being so
    Thank you Max for being so generous and answering all of our questions. Of course we are concerned about you as well. I am glad that the sutent is working for you and there is shirnkage. That is very positive! Keep it going that way max, we want to see you at NED! Praying for you!

    TW.. i am glad you are not expecting a new bundle anytime soon, otherwise we will be seeing you in the headlines, never mind on the boards! ;) Thank you for sharing that info on the blood supply, now i understand but am quite amazed at how they did this.
  • KJones1969
    KJones1969 Member Posts: 158
    #27
    Votrient
    My husband was on Votrient for 5 1/2 months with very little side effects except being tired. The 3 month scans showes shinkage in lung nodules, then this past Friday we had another scan and showed the nodules that had decreased some have now doubled in size and there are new spots on his lungs. They are switching him to affinitor this week to try that.

    He had a radical nephrectomy in March with what the doctor at Duke called a football size tumor that had spread to his lungs.
  • Parforthecourse
    Parforthecourse Member Posts: 4
    #28
    Texas_wedge said:

    Votrient
    Lorraine, after four and a half months on it, can you tell us about the side-effects you've had and the best ways you've found of coping? Also, as Ange has asked, what dose level are you on and has it changed? Both Ange and I have personal interests in the answers so we'd love to hear a bit more from you on the subject. have your Daughters been able to handly it and help their Mum?

    Side Effects
    How soon has anyone experienced side effects from the Votrient? I have been on the pills for one week...already dealing with high blood pressure.
  • alice124
    alice124 Member Posts: 896 Member
    #29
    KJones1969 said:

    Votrient
    My husband was on Votrient for 5 1/2 months with very little side effects except being tired. The 3 month scans showes shinkage in lung nodules, then this past Friday we had another scan and showed the nodules that had decreased some have now doubled in size and there are new spots on his lungs. They are switching him to affinitor this week to try that.

    He had a radical nephrectomy in March with what the doctor at Duke called a football size tumor that had spread to his lungs.

    Votrient
    K-

    Sorry the Votrient stopped doing its job and you have yet another path to begin. I guess we need to be happy that there are other paths to try.

    John continues to be in the trial and Votrient, as we've discussed, is a part of it. He has a scan on Wednesday, the 24th. We're both a little anxious about it, but I pray the trial drugs continue to show shrinkage.

    I'm afraid I have no info on Affinitor, but know my thoughts and prayers are with you both. Stay brave; fight hard; and remain optimistic. Godspeed to you and your husband.
  • ClaraW
    ClaraW Member Posts: 64
    #30
    Texas_wedge said:

    clinical equipoise
    Is this ever possible in an rct with placebo, Clara?

    Oh boy, are you opening up exciting intellectual vistas, looking at the psychology of Hawthorne Effects and Halo Effects and then, in an entirely different direction, roaming into the perilous waters of Bayesian Logic!

    On the latter, I wonder whether you've encountered a paper entitled

    "Ethics of clinical trials from a bayesian and decision analytic perspective: whose equipoise is it anyway?"

    If you haven't, it's at
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1125887/

    This pretty plainly addresses issues I adumbrated in my post above. These meta-level deliberations seem to me to be more important than most academic papers, since they deal with the underpinnings of all such papers, don't you think?

    Equipoise: Is this ever possible in an rct with placebo?
    TW, I just saw your reply.

    Probably rare I must say. I'll read up on this topic so we can discuss it more =)

    Kind Regards,
    C
  • KJones1969
    KJones1969 Member Posts: 158
    #31
    alice124 said:

    Votrient
    K-

    Sorry the Votrient stopped doing its job and you have yet another path to begin. I guess we need to be happy that there are other paths to try.

    John continues to be in the trial and Votrient, as we've discussed, is a part of it. He has a scan on Wednesday, the 24th. We're both a little anxious about it, but I pray the trial drugs continue to show shrinkage.

    I'm afraid I have no info on Affinitor, but know my thoughts and prayers are with you both. Stay brave; fight hard; and remain optimistic. Godspeed to you and your husband.

    alice124
    We are sorry the Votrient didn't work long either. At the 3 month scans his doctor said we got the best news possible but just 10 weeks later the cancer doesn't like it and grew larger and there are new spots on his lungs. We are praying the Afinitor works.

    I knew John was on Votrient in a trial and I pray his scans this week show a shrinkage Alice. I was more anxious this past week but was claiming it was helping so we were in shock but like my husband said if one don't work we move on to another one.

    You stay brave, fight hard and remain optimistic as well. Sometimes that is easier said than done but we stay brave for our hubby's. Let me know how John's scans go.
  • Max Power
    Max Power Member Posts: 60
    #32
    Why I was taken off Votrient.
    I was visiting my onc today so I asked him to remind me why I was taken off Votrient. (My notesa aren't as thorough as I'd like.) Turns out it was my liver function (two enzymes) that was off.

    I asked him what was in my future after Sutent. (After all it was he who said that it is a matter of when, not if, I will develop a resistance to Sutent.) In my future are existing medications such as Torisel or Nexavar, and clinical trials. For example there is ongoing trial AMG-386 + Sutent which endeavors to extend the life of Sutent.

    Sounds like a lot of options.
  • Phoenix Rising
    Phoenix Rising Member Posts: 170
    #33
    Parforthecourse said:

    Side Effects
    How soon has anyone experienced side effects from the Votrient? I have been on the pills for one week...already dealing with high blood pressure.

    Side effects came quickly
    ParForTheCourse, I had side effects after taking one tablet on day one, and side effects increased when I moved to two tablets day 3. I am still taking 2 tabs (It's been almost 2 months) and notice more side effects on a regular basis. None are very difficult.

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