bye bye Votrient

GSRon
GSRon Member Posts: 1,303 Member

Yes, no more Votrient.. Next up is Inlyta. More to follow when I get home tonight.. Ron

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  • GSRon
    GSRon Member Posts: 1,303 Member
    OK, now that I am home...  I

    OK, now that I am home...  I got the news late this afternoon...  My Liver is not happy.. not at all.  But I must say, there are times I wished I was wrong...  turns out that indeed my high Bilirubin is not the direct result of the Votrient..  I have some form of Liver disease, and thus my Liver is over sensitive to some drugs..  On one hand, I feel cheated.. the Votrient was working wonderfully on the Mets, and it should of stayed working for about another year or so.  On the other hand, I got an extra 6t plus months added to my life clock... better than nothing..!!

    So, it about 6 hours I start on my big vacation... no drugs to take, just will try to relax and enjoy... I will wave as I pass over Ireland and Scotland... wish I had the time to meet up with you both... even if just to say hello....   Sorry that won't happen this time.. maybe next year..!

    I will not start on Inlyta until after I get home... my Dr wants me to get full scans as a baseline to see if there has been any growth in my Mets, so we will then know if the drugs are working when I get my next scans after that....  Sorry if I sound a tad bummed.. but I am...  That said... time to get me head on straight and go have fun..!!!

    Be Well All..!!!

    Ron

  • I am alive
    I am alive Member Posts: 315
    GSRon said:

    OK, now that I am home...  I

    OK, now that I am home...  I got the news late this afternoon...  My Liver is not happy.. not at all.  But I must say, there are times I wished I was wrong...  turns out that indeed my high Bilirubin is not the direct result of the Votrient..  I have some form of Liver disease, and thus my Liver is over sensitive to some drugs..  On one hand, I feel cheated.. the Votrient was working wonderfully on the Mets, and it should of stayed working for about another year or so.  On the other hand, I got an extra 6t plus months added to my life clock... better than nothing..!!

    So, it about 6 hours I start on my big vacation... no drugs to take, just will try to relax and enjoy... I will wave as I pass over Ireland and Scotland... wish I had the time to meet up with you both... even if just to say hello....   Sorry that won't happen this time.. maybe next year..!

    I will not start on Inlyta until after I get home... my Dr wants me to get full scans as a baseline to see if there has been any growth in my Mets, so we will then know if the drugs are working when I get my next scans after that....  Sorry if I sound a tad bummed.. but I am...  That said... time to get me head on straight and go have fun..!!!

    Be Well All..!!!

    Ron

    Bummer, Ron

    No way around it. That's the really sucky thing about this (bleeping) disease - Votient's kicking cancer's ****, doing a supurb job,  but NOOOOOOOO, that's not good enough. Things can't be simple.  An exotic ancillary  disease - in the liver of all places -  has to show it's ugly face and toss a monkey wrench into a perfect plan.   :(

    Well, looking on the bright side (as we always have to do), Smilehow fortuitous that your drug vacation coincides with your actual vacation. Enjoy the hell out of it! Zoom! Zoom! 

  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Bummer, Ron

    No way around it. That's the really sucky thing about this (bleeping) disease - Votient's kicking cancer's ****, doing a supurb job,  but NOOOOOOOO, that's not good enough. Things can't be simple.  An exotic ancillary  disease - in the liver of all places -  has to show it's ugly face and toss a monkey wrench into a perfect plan.   :(

    Well, looking on the bright side (as we always have to do), Smilehow fortuitous that your drug vacation coincides with your actual vacation. Enjoy the hell out of it! Zoom! Zoom! 

    Bummer indeed

    Seconds ago I wished you good luck on another thread!  Coming here, I see your less good news and that Peg has said it all for me, so a new plan on your return but meanwhile go and get Manxed out!   I'll be looking out for your plane as it passes over Scotland!

  • GSRon
    GSRon Member Posts: 1,303 Member

    Bummer indeed

    Seconds ago I wished you good luck on another thread!  Coming here, I see your less good news and that Peg has said it all for me, so a new plan on your return but meanwhile go and get Manxed out!   I'll be looking out for your plane as it passes over Scotland!

    Well like I said, can't

    Well like I said, can't really blame the Votrient. My Liver has this rare disease. I may not be able to take many of the Cancer drugs. My ball game my of just been cut a bit shorter. Worst part is that I have over a month supply here. Ron

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

    Well like I said, can't

    Well like I said, can't really blame the Votrient. My Liver has this rare disease. I may not be able to take many of the Cancer drugs. My ball game my of just been cut a bit shorter. Worst part is that I have over a month supply here. Ron

    We'll count on something else

    There will be another try. Your docs have a little time to figure things out. Let's see,..your kidney is gone. Your liver is going, Your hair is gone. Now you are going to the races. Have a great trip. I know you will because you only see the positive. Has anyone ever mentioned that cancer sucks?

  • GSRon
    GSRon Member Posts: 1,303 Member
    foxhd said:

    We'll count on something else

    There will be another try. Your docs have a little time to figure things out. Let's see,..your kidney is gone. Your liver is going, Your hair is gone. Now you are going to the races. Have a great trip. I know you will because you only see the positive. Has anyone ever mentioned that cancer sucks?

    Thanks Fox Man..!!  Yes,

    Thanks Fox Man..!!  Yes, Cancer sucks.. but oh well... not a darn thing we can do but fight the good fight.. and live...   Hope you are getting back to normal, what ever that may be...  Good to see you posting...!!   I guess my concern is that many of the good drugs are now off limits for me... like the HDIL2 you have been doing...  Not that I am in any hurry to go through that, but, in the back of my mind, I keep thinking that my turn may soon come..but now, maybe not.   No time to worry about it now... my flight is boarding soon..!   All of you take care, be well and enjoy when ever you can..!!  Even without Cancer, life is often too short...

    Cheers..!!!

    Ron

  • danbren2
    danbren2 Member Posts: 311
    GSRon said:

    Thanks Fox Man..!!  Yes,

    Thanks Fox Man..!!  Yes, Cancer sucks.. but oh well... not a darn thing we can do but fight the good fight.. and live...   Hope you are getting back to normal, what ever that may be...  Good to see you posting...!!   I guess my concern is that many of the good drugs are now off limits for me... like the HDIL2 you have been doing...  Not that I am in any hurry to go through that, but, in the back of my mind, I keep thinking that my turn may soon come..but now, maybe not.   No time to worry about it now... my flight is boarding soon..!   All of you take care, be well and enjoy when ever you can..!!  Even without Cancer, life is often too short...

    Cheers..!!!

    Ron

    Have a Great Time!

    Ron,

         It looks like road blocks go up everywhere when we least expect it, cancer does suck, big time!! Anyway, try to keep your mind clear and have a wonderful time on your trip, may this be one in a line of many to come! 

                                                                                Sending love, prayers, and good health to you!

                                                                                 Brenda

  • MDCinSC
    MDCinSC Member Posts: 574
    GSRon said:

    OK, now that I am home...  I

    OK, now that I am home...  I got the news late this afternoon...  My Liver is not happy.. not at all.  But I must say, there are times I wished I was wrong...  turns out that indeed my high Bilirubin is not the direct result of the Votrient..  I have some form of Liver disease, and thus my Liver is over sensitive to some drugs..  On one hand, I feel cheated.. the Votrient was working wonderfully on the Mets, and it should of stayed working for about another year or so.  On the other hand, I got an extra 6t plus months added to my life clock... better than nothing..!!

    So, it about 6 hours I start on my big vacation... no drugs to take, just will try to relax and enjoy... I will wave as I pass over Ireland and Scotland... wish I had the time to meet up with you both... even if just to say hello....   Sorry that won't happen this time.. maybe next year..!

    I will not start on Inlyta until after I get home... my Dr wants me to get full scans as a baseline to see if there has been any growth in my Mets, so we will then know if the drugs are working when I get my next scans after that....  Sorry if I sound a tad bummed.. but I am...  That said... time to get me head on straight and go have fun..!!!

    Be Well All..!!!

    Ron

    Rock out on the Rock!

    Wishing that the news was better for you, and wishing there was something a little more positive I can do.

    I'll keep my prayers, hopes, and wishes going for you and envy you a great time on your holiday!

    Live it to the fullest!

  • GSRon
    GSRon Member Posts: 1,303 Member
    MDCinSC said:

    Rock out on the Rock!

    Wishing that the news was better for you, and wishing there was something a little more positive I can do.

    I'll keep my prayers, hopes, and wishes going for you and envy you a great time on your holiday!

    Live it to the fullest!

    On the Irish Sea..!!  Hi

    On the Irish Sea..!!  Hi All..!!  I am posting this from the ferry boat on the Irish Sea... can't hardly understand some of the people already... heh.. fun fun fun..!!  OK, so I just got a race program and looked at the entries...all 92 of them..!!  Yes there will be a lot of competition..!!  However I also looked at the famous riders that will do a parade lap, guests of honour...  and there are two names I know well...  Dave Roper has raced my bike and got the first set of back to back wins.. Dave was the first American to win a TT Race on the Isle of Man.  But then I see the name Hurley Wilvert.. yes I know neighter name will be famliar to any of you... but I go on..  Hurley and I were room mates for a bunch of years... he decided to remarry some cute (short) gal, move her in and move me out.. good move on his part.   Hurley was a factory Suzuki Road Racer and raced in Europe and all over... but also on that team was a guy named Barry Sheene.   Barry was very wel known (from England) and he retired down in Australia.  Barry lasted 8 months after his Dx of Cancer, do not know what type.  Barry decided to forgo standard treatments and to the "starve the Cancer diet" of veggie juices..   So for all you want to do it Holisitically well, there you go...

     

    OK, so far the sailing is pretty smooth... no need for the dramamine this trip... in fact I did not bring any.   The fun has begun...  Oh yes, had two drinks too... the alcohol sure tasted good, but I only had a little bit.. too risky to get crazy right now..!

     

    Be Well All..!!!  Cheers..!!

    Ron

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

    On the Irish Sea..!!  Hi

    On the Irish Sea..!!  Hi All..!!  I am posting this from the ferry boat on the Irish Sea... can't hardly understand some of the people already... heh.. fun fun fun..!!  OK, so I just got a race program and looked at the entries...all 92 of them..!!  Yes there will be a lot of competition..!!  However I also looked at the famous riders that will do a parade lap, guests of honour...  and there are two names I know well...  Dave Roper has raced my bike and got the first set of back to back wins.. Dave was the first American to win a TT Race on the Isle of Man.  But then I see the name Hurley Wilvert.. yes I know neighter name will be famliar to any of you... but I go on..  Hurley and I were room mates for a bunch of years... he decided to remarry some cute (short) gal, move her in and move me out.. good move on his part.   Hurley was a factory Suzuki Road Racer and raced in Europe and all over... but also on that team was a guy named Barry Sheene.   Barry was very wel known (from England) and he retired down in Australia.  Barry lasted 8 months after his Dx of Cancer, do not know what type.  Barry decided to forgo standard treatments and to the "starve the Cancer diet" of veggie juices..   So for all you want to do it Holisitically well, there you go...

     

    OK, so far the sailing is pretty smooth... no need for the dramamine this trip... in fact I did not bring any.   The fun has begun...  Oh yes, had two drinks too... the alcohol sure tasted good, but I only had a little bit.. too risky to get crazy right now..!

     

    Be Well All..!!!  Cheers..!!

    Ron

    Manx TT

    Have a great time there Ron and the very best of luck with the racing!!

  • Djinnie
    Djinnie Member Posts: 945
    GSRon said:

    On the Irish Sea..!!  Hi

    On the Irish Sea..!!  Hi All..!!  I am posting this from the ferry boat on the Irish Sea... can't hardly understand some of the people already... heh.. fun fun fun..!!  OK, so I just got a race program and looked at the entries...all 92 of them..!!  Yes there will be a lot of competition..!!  However I also looked at the famous riders that will do a parade lap, guests of honour...  and there are two names I know well...  Dave Roper has raced my bike and got the first set of back to back wins.. Dave was the first American to win a TT Race on the Isle of Man.  But then I see the name Hurley Wilvert.. yes I know neighter name will be famliar to any of you... but I go on..  Hurley and I were room mates for a bunch of years... he decided to remarry some cute (short) gal, move her in and move me out.. good move on his part.   Hurley was a factory Suzuki Road Racer and raced in Europe and all over... but also on that team was a guy named Barry Sheene.   Barry was very wel known (from England) and he retired down in Australia.  Barry lasted 8 months after his Dx of Cancer, do not know what type.  Barry decided to forgo standard treatments and to the "starve the Cancer diet" of veggie juices..   So for all you want to do it Holisitically well, there you go...

     

    OK, so far the sailing is pretty smooth... no need for the dramamine this trip... in fact I did not bring any.   The fun has begun...  Oh yes, had two drinks too... the alcohol sure tasted good, but I only had a little bit.. too risky to get crazy right now..!

     

    Be Well All..!!!  Cheers..!!

    Ron

    Hi Ron, 
    Have a great time

    Hi Ron, 

    Have a great time Ron! I am glad the sea is calm, that stretch of water is choppy at the best of times. I last travelled across in January 2012, it was the worst trip ever, the storms were terrific. 

    I remember Barry Sheene very well, he was very popular with all the girls. I think he had stomach or bowel cancer.

    Looking forward to reading your posts, have a blast:)

    Djinnie x

  • MDCinSC
    MDCinSC Member Posts: 574
    GSRon said:

    On the Irish Sea..!!  Hi

    On the Irish Sea..!!  Hi All..!!  I am posting this from the ferry boat on the Irish Sea... can't hardly understand some of the people already... heh.. fun fun fun..!!  OK, so I just got a race program and looked at the entries...all 92 of them..!!  Yes there will be a lot of competition..!!  However I also looked at the famous riders that will do a parade lap, guests of honour...  and there are two names I know well...  Dave Roper has raced my bike and got the first set of back to back wins.. Dave was the first American to win a TT Race on the Isle of Man.  But then I see the name Hurley Wilvert.. yes I know neighter name will be famliar to any of you... but I go on..  Hurley and I were room mates for a bunch of years... he decided to remarry some cute (short) gal, move her in and move me out.. good move on his part.   Hurley was a factory Suzuki Road Racer and raced in Europe and all over... but also on that team was a guy named Barry Sheene.   Barry was very wel known (from England) and he retired down in Australia.  Barry lasted 8 months after his Dx of Cancer, do not know what type.  Barry decided to forgo standard treatments and to the "starve the Cancer diet" of veggie juices..   So for all you want to do it Holisitically well, there you go...

     

    OK, so far the sailing is pretty smooth... no need for the dramamine this trip... in fact I did not bring any.   The fun has begun...  Oh yes, had two drinks too... the alcohol sure tasted good, but I only had a little bit.. too risky to get crazy right now..!

     

    Be Well All..!!!  Cheers..!!

    Ron

    Keep the shiny side up!

    And have an absolute ball!  I'll be cheering all the way from South Carolina!

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

    Keep the shiny side up!

    And have an absolute ball!  I'll be cheering all the way from South Carolina!

    Keep the updates coming.

    I feel like I'm on the trip with you. I'll have to pay more attention to the races. Have a GREAT time!

  • GSRon
    GSRon Member Posts: 1,303 Member
    MDCinSC said:

    Keep the shiny side up!

    And have an absolute ball!  I'll be cheering all the way from South Carolina!

    Sigh..

    I got here no problems.. it is now after midnight here... I just read my today's e-mail, a pal of mine that lives near me died... Prostate Cancer.  He was on Chemo and I thougth it was working... he never complained.  I recently saw him and he looked a bit weak, he was his normal smiling self... ****.. just ****...

    Ron

  • alice124
    alice124 Member Posts: 896 Member
    GSRon said:

    Thanks Fox Man..!!  Yes,

    Thanks Fox Man..!!  Yes, Cancer sucks.. but oh well... not a darn thing we can do but fight the good fight.. and live...   Hope you are getting back to normal, what ever that may be...  Good to see you posting...!!   I guess my concern is that many of the good drugs are now off limits for me... like the HDIL2 you have been doing...  Not that I am in any hurry to go through that, but, in the back of my mind, I keep thinking that my turn may soon come..but now, maybe not.   No time to worry about it now... my flight is boarding soon..!   All of you take care, be well and enjoy when ever you can..!!  Even without Cancer, life is often too short...

    Cheers..!!!

    Ron

    Fox / Ron

    As I sit here reading your (Fox and Ron) posts of the last several days, Winston Churchill's famous quote keeps coming to my mind:

     

    IF YOU'RE GOING THROUGH HELL, KEEP  GOING. . .

     

     

    Keep going. We're here.

  • GSRon
    GSRon Member Posts: 1,303 Member
    GSRon said:

    Sigh..

    I got here no problems.. it is now after midnight here... I just read my today's e-mail, a pal of mine that lives near me died... Prostate Cancer.  He was on Chemo and I thougth it was working... he never complained.  I recently saw him and he looked a bit weak, he was his normal smiling self... ****.. just ****...

    Ron

    Thanks..

    Thanks Brenda and Alice.. you both are such wonerful people.... like everyone here....

    Ron

  • GSRon
    GSRon Member Posts: 1,303 Member
    GSRon said:

    Thanks..

    Thanks Brenda and Alice.. you both are such wonerful people.... like everyone here....

    Ron

    Update

    Here is a short update on post Votrient.  I am starting to get color (colour) back in my moustache.. do NOT look at my picture.. heh..  It may be a while before the hair on my head looks normal again..  :)   Also, I finally have most of my energy back..  and am about 45 days without any treatments..  Wondering what the Inlyta will do.. soon to find out..

    Ron

  • GSRon
    GSRon Member Posts: 1,303 Member
    GSRon said:

    Update

    Here is a short update on post Votrient.  I am starting to get color (colour) back in my moustache.. do NOT look at my picture.. heh..  It may be a while before the hair on my head looks normal again..  :)   Also, I finally have most of my energy back..  and am about 45 days without any treatments..  Wondering what the Inlyta will do.. soon to find out..

    Ron

    OK, it is now Thursday

    OK, it is now Thursday 9-5-13.  I have a visit with my Onc this afternoon.. and yesterday late, my Inlyta arrived.  Likely I start on the new drug tonight..!  Time to start the new fight.  Thanks all for the support.. I really appreciate it..

     

    Question.. should I revive one of the old Inlyta posts, start a new post, or continue with this one or one other of my posts..?  What would help the group the most..?

     

    Be Well All..!!

    Ron

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

    OK, it is now Thursday

    OK, it is now Thursday 9-5-13.  I have a visit with my Onc this afternoon.. and yesterday late, my Inlyta arrived.  Likely I start on the new drug tonight..!  Time to start the new fight.  Thanks all for the support.. I really appreciate it..

     

    Question.. should I revive one of the old Inlyta posts, start a new post, or continue with this one or one other of my posts..?  What would help the group the most..?

     

    Be Well All..!!

    Ron

    New thread?

    Good thinking Ron!  Unfortunately there doesn't appear to be an obviously appropriate existing thread, does there?!

    I (of all people!!) suggest that you start a new thread with a nice transparent title that clearly identifies Inlyta/axitinib as its topic.  Votrient has become the most active thread of all and I can see that axitininb/Inlyta will rapidly become another valuable focus, so a good clear thread name is highly desirable.   Good luck on it - what a pity that Votrient bashed our livers so hard.  (I can't help wondering whether I might have had a lot longer benefiting from it if I'd been started on a lower dose, but then, the logic of hitting my pathology with all guns blazing was compelling, given its extreme aggressiveness.)

  • GSRon
    GSRon Member Posts: 1,303 Member

    New thread?

    Good thinking Ron!  Unfortunately there doesn't appear to be an obviously appropriate existing thread, does there?!

    I (of all people!!) suggest that you start a new thread with a nice transparent title that clearly identifies Inlyta/axitinib as its topic.  Votrient has become the most active thread of all and I can see that axitininb/Inlyta will rapidly become another valuable focus, so a good clear thread name is highly desirable.   Good luck on it - what a pity that Votrient bashed our livers so hard.  (I can't help wondering whether I might have had a lot longer benefiting from it if I'd been started on a lower dose, but then, the logic of hitting my pathology with all guns blazing was compelling, given its extreme aggressiveness.)

    Thanks..!  And I totally

    Thanks..!  And I totally agree, I have a hunch we all (or almost all) plus some of the Drs think hit it hard, full dose... get those buggers..  But from the small cross section of folks here.. it seems like starting at 600 MG may make more sense...  That is not based on anything but my impressions.

    I will start that new post, once I have a couple of days under my belt...  (Uh ladies, no peeking under my belt either..  :)  )

    Be Well All..!!

    Ron