"Votrient people"- How long will we take Votrient?

I guess Votrient is relatively new, but do we know these things yet?--

How long have you been taking Votrient?
Have any of us achieved NED and stopped taking it?
Is the intention to move us to NED?
Is it supposed to make us stable and we can eventually stop?
Is it just supposed to make us stable and we stay on it at a minimum dose forever?

What's up with us?

Comments

  • BDS
    BDS Member Posts: 172
    How Long Can you take Votrient

    Hi, I hate to sound like a kill joy but Votrient is probably not going to push your cancer to an NED status. I have Stage 4 RCC and have been on Votrient since July 28, 2012. Since I have tolerated the drug fairly well with manageable side effects, my oncologist is hoping/praying that I can remain on Votrient for three years. By then she is hoping that next generation of cancer treatments will keep my cancer in check. Currently, only about 1 to 1 ½ percent of Stage 4 RCC patients have their cancer pushed into remission with the current targeted therapies of Sutent or Votrient. (This was according to a French Study that I read when I was first diagnosed.) According to my oncologist the average time someone is on Votrient is about a year – she was referencing a Polish study. But what you have to remember is that Votrient was FDA approve only in October of 2009. In short it is a new drug and they do not know everything.  What you have to keep in mind is the goal of targeted therapies is to keep your cancer in check and prolong your life for as long as possible until either you die of something else or they find a cure.  If you have Stage 4 RCC you have to think of about Magic Johnson. If you remember in 1991 Magic Johnson was diagnosed with HIV/Aids and was given two years to live. He quit the NBA and prepared to die. If you remember back then HIV/Aids was considered an automatic death sentence. Well its now 22 years later and Magic Johnson is still alive because they came up with better drugs and treatments to combat HIV/Aids. Hopefully this will be the case with RCC.

    Now to more directly answer your question there is one person on the CSN-  IVFour whose Stage 4 RCC cancer pushed into NED Status after about 6 months of treatment. (Look up her CSN posts) She continues to be NED however, her oncologist plans to keep her on Votrient for five years before being weaned off the drug . - BDS            

     

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    BDS said:

    How Long Can you take Votrient

    Hi, I hate to sound like a kill joy but Votrient is probably not going to push your cancer to an NED status. I have Stage 4 RCC and have been on Votrient since July 28, 2012. Since I have tolerated the drug fairly well with manageable side effects, my oncologist is hoping/praying that I can remain on Votrient for three years. By then she is hoping that next generation of cancer treatments will keep my cancer in check. Currently, only about 1 to 1 ½ percent of Stage 4 RCC patients have their cancer pushed into remission with the current targeted therapies of Sutent or Votrient. (This was according to a French Study that I read when I was first diagnosed.) According to my oncologist the average time someone is on Votrient is about a year – she was referencing a Polish study. But what you have to remember is that Votrient was FDA approve only in October of 2009. In short it is a new drug and they do not know everything.  What you have to keep in mind is the goal of targeted therapies is to keep your cancer in check and prolong your life for as long as possible until either you die of something else or they find a cure.  If you have Stage 4 RCC you have to think of about Magic Johnson. If you remember in 1991 Magic Johnson was diagnosed with HIV/Aids and was given two years to live. He quit the NBA and prepared to die. If you remember back then HIV/Aids was considered an automatic death sentence. Well its now 22 years later and Magic Johnson is still alive because they came up with better drugs and treatments to combat HIV/Aids. Hopefully this will be the case with RCC.

    Now to more directly answer your question there is one person on the CSN-  IVFour whose Stage 4 RCC cancer pushed into NED Status after about 6 months of treatment. (Look up her CSN posts) She continues to be NED however, her oncologist plans to keep her on Votrient for five years before being weaned off the drug . - BDS            

     

    How Long Can you take Votrient

    An excellent and well-informed answer.

    The theme is much on my mind also at present, Phoenix, since, after three months on Votrient, the acid test for me is in four days time when we'll find out if it's working for me. 

    It's too early to know which patients it may be good for and which not.   It's so new that we don't know whether it could be capable of 'cure' for some patients, but I'm not holding my breath - long-term stability with decent quality of life would be an acceptable outcome (not that one has much choice - the words "quietus" and "bare bodkin" not coming into play for the foreseeable future - just have to hoist those fardels higher up the back and get on with it!).

  • NanoSecond
    NanoSecond Member Posts: 653

    How Long Can you take Votrient

    An excellent and well-informed answer.

    The theme is much on my mind also at present, Phoenix, since, after three months on Votrient, the acid test for me is in four days time when we'll find out if it's working for me. 

    It's too early to know which patients it may be good for and which not.   It's so new that we don't know whether it could be capable of 'cure' for some patients, but I'm not holding my breath - long-term stability with decent quality of life would be an acceptable outcome (not that one has much choice - the words "quietus" and "bare bodkin" not coming into play for the foreseeable future - just have to hoist those fardels higher up the back and get on with it!).

    Still separated by a common tongue...

    "Quietus"; "bare bodkin"; "hoist those fardels"?

     

    Er, exactly what language is that, Tex?  It's hard enough trying to keep track of all the various names of all these drugs and now this... :)

  • garym
    garym Member Posts: 1,647

    Still separated by a common tongue...

    "Quietus"; "bare bodkin"; "hoist those fardels"?

     

    Er, exactly what language is that, Tex?  It's hard enough trying to keep track of all the various names of all these drugs and now this... :)

    I can't speak for T, but...

    I took it to mean "Eliminate the dagger (perhaps a quasi surgical referance) while bearing the burden."  Or simply playing the cards we are dealt.

  • Phoenix Rising
    Phoenix Rising Member Posts: 170
    Just asking

    I started Votrient in August.  I think.  Well my last scan showed stability in one nodule and shrinkage in others.  Upon my last visit I was told I am "doing great."  All of my blood test levels were within range, except for a scant few which were just below or just above the norm, but BP is normal w/ medication intervention.  My side effects have minimized and I am down to just a few.  The fact that the side effects have slowed down scared me a little because I was wondering if the efficacy of the drug was wearing down.  I'm sure my worry is related to the fact that my next scan comes within a week. I am wondering, what next?

    On the other hand, I'm about to have a glass of Sangria and not worry about what's next.

    In response to Texas Wedge's foreign language proclamation:  Yo ho ho and a bottle of rum to you, too!

     

     

  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Just asking

    I started Votrient in August.  I think.  Well my last scan showed stability in one nodule and shrinkage in others.  Upon my last visit I was told I am "doing great."  All of my blood test levels were within range, except for a scant few which were just below or just above the norm, but BP is normal w/ medication intervention.  My side effects have minimized and I am down to just a few.  The fact that the side effects have slowed down scared me a little because I was wondering if the efficacy of the drug was wearing down.  I'm sure my worry is related to the fact that my next scan comes within a week. I am wondering, what next?

    On the other hand, I'm about to have a glass of Sangria and not worry about what's next.

    In response to Texas Wedge's foreign language proclamation:  Yo ho ho and a bottle of rum to you, too!

     

     

    what language? Why, English of course!!!

    I posted a reply which began "You poor benighted engineers!"  together with the source I was quoting from viz Hamlet's soliloquy, surely the best-known passage of literature in the history of our planet?  Did somebody flag my message for quoting Shakespeare?!!  The relevant lines from the Soliloquy are, once again:

     

     

    For who would bear the whips and scorns of time, Th' oppressor's wrong, the proud man's contumely The pangs of despised love, the law's delay, The insolence of office, and the spurns That patient merit of th' unworthy takes, When he himself might his quietus make With a bare bodkin? Who would fardels bear, To grunt and sweat under a weary life,

     

     

  • NanoSecond
    NanoSecond Member Posts: 653

    what language? Why, English of course!!!

    I posted a reply which began "You poor benighted engineers!"  together with the source I was quoting from viz Hamlet's soliloquy, surely the best-known passage of literature in the history of our planet?  Did somebody flag my message for quoting Shakespeare?!!  The relevant lines from the Soliloquy are, once again:

     

     

    For who would bear the whips and scorns of time, Th' oppressor's wrong, the proud man's contumely The pangs of despised love, the law's delay, The insolence of office, and the spurns That patient merit of th' unworthy takes, When he himself might his quietus make With a bare bodkin? Who would fardels bear, To grunt and sweat under a weary life,

     

     

    Well that would be me...

    ...who flagged it.

    I didn't understand the Great Bard in high school either.

    That's why I became a benighted (Electrical) Engineer.

  • garym
    garym Member Posts: 1,647

    what language? Why, English of course!!!

    I posted a reply which began "You poor benighted engineers!"  together with the source I was quoting from viz Hamlet's soliloquy, surely the best-known passage of literature in the history of our planet?  Did somebody flag my message for quoting Shakespeare?!!  The relevant lines from the Soliloquy are, once again:

     

     

    For who would bear the whips and scorns of time, Th' oppressor's wrong, the proud man's contumely The pangs of despised love, the law's delay, The insolence of office, and the spurns That patient merit of th' unworthy takes, When he himself might his quietus make With a bare bodkin? Who would fardels bear, To grunt and sweat under a weary life,

     

     

    Believe it or not...

    It was probably 45 years ago when, as a teenager, I was "forced" to read Hamlet in a high school english class.  I thought it long forgotten until the bare bodkin reference, weird how some things stick with you and others don't.

  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Well that would be me...

    ...who flagged it.

    I didn't understand the Great Bard in high school either.

    That's why I became a benighted (Electrical) Engineer.

    Flagged for quoting Shakespeare!!!

    Neil, did you suppose that I was spamming to boost bodkin sales? Smile - a dagger to my heart - was't thee trying to quiet us?

  • NewDay
    NewDay Member Posts: 272
    garym said:

    Believe it or not...

    It was probably 45 years ago when, as a teenager, I was "forced" to read Hamlet in a high school english class.  I thought it long forgotten until the bare bodkin reference, weird how some things stick with you and others don't.

    Huh?

     

    For who would bear the whips...of ...love,...make With a bare bod..., To grunt and sweat under a....???

     

    Say what??

     

    I'll have to put down by "Genetics for Dummies" and look for a "Shakespeare for Dummies"Tongue Out

  • foxhd
    foxhd Member Posts: 3,181
    NewDay said:

    Huh?

     

    For who would bear the whips...of ...love,...make With a bare bod..., To grunt and sweat under a....???

     

    Say what??

     

    I'll have to put down by "Genetics for Dummies" and look for a "Shakespeare for Dummies"Tongue Out

    there once was a girl from Nantucket.........

    enuf said about my literary knowledge...........

  • garym
    garym Member Posts: 1,647
    NewDay said:

    Huh?

     

    For who would bear the whips...of ...love,...make With a bare bod..., To grunt and sweat under a....???

     

    Say what??

     

    I'll have to put down by "Genetics for Dummies" and look for a "Shakespeare for Dummies"Tongue Out

    A related poem...
    "The clock of life is wound but once,and no man has the power

    to tell just when the hands will stop, at late or early hour.

    Now is the only time you own, live, love, toil with a will.

    Place no faith in time, for the clock may soon be still."

     

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    garym said:

    A related poem...

    "The clock of life is wound but once,and no man has the power

    to tell just when the hands will stop, at late or early hour.

    Now is the only time you own, live, love, toil with a will.

    Place no faith in time, for the clock may soon be still."

     

    Certainly apropos, Gary, but the last line is a bit gloomy (particularly for me, about to see my onc tomorrow for the day of reckoning)!

    But I guess the carpe diem message is well taken - live in the present and make the most of every day.  That's the positive side, also seen in  the best known passage of the Fitzgerald translation of the Rubaiyat:

    The Moving Finger writes; and, having writ,
     Moves on: nor all thy Piety nor Wit
     Shall lure it back to cancel half a Line,
     Nor all thy Tears wash out a Word of it.

     

    So try to live your life such that you will have no regrets - not, alas, easy to do for some of us.

  • garym
    garym Member Posts: 1,647

    Certainly apropos, Gary, but the last line is a bit gloomy (particularly for me, about to see my onc tomorrow for the day of reckoning)!

    But I guess the carpe diem message is well taken - live in the present and make the most of every day.  That's the positive side, also seen in  the best known passage of the Fitzgerald translation of the Rubaiyat:

    The Moving Finger writes; and, having writ,
     Moves on: nor all thy Piety nor Wit
     Shall lure it back to cancel half a Line,
     Nor all thy Tears wash out a Word of it.

     

    So try to live your life such that you will have no regrets - not, alas, easy to do for some of us.

    Stiff upper lip my friend...

    I shall speak to the Gods on thine behalf in hopes that a day of good fortune awaits thee!