Starting Votrient this week

2

Comments

  • Suekub
    Suekub Member Posts: 137
    Suekub said:

    I was given a copy of the pathology today - ALP 140 U/L. GGT 78 U/L interestingly my GGT levels are always above normal but I am not a drinker! Creatinine 98 umol\L don't yet have results of test done yesterday.

    Votrient : round 2

    Todays blood test shows liver enzymes back to normal so time to have another try of Votrient - this time commencing at 400mg. Hopefully my liver will cope a little better this time round. Wish me luck.

    Sue

  • Eskimo lily
    Eskimo lily Member Posts: 43
    Suekub said:

    Votrient : round 2

    Todays blood test shows liver enzymes back to normal so time to have another try of Votrient - this time commencing at 400mg. Hopefully my liver will cope a little better this time round. Wish me luck.

    Sue

    Good luck Sue!

    That's great that your liver enzymes came back normal. I also hope this new dose works for you.

     

    my mom is meant to start votrient on September 5th so I'll definitely keep everyone posted with progress.

     

     

  • Suekub
    Suekub Member Posts: 137

    Votrient break

    As you'd guess, Sue, I'll be following your fortunes closely.  What were the numbers that caused them to take you off for now? 

    I've reduced my dose from 600 to 400 and will inform my Onc at an extra appointment she's asked me to go to on Friday.  I'll have my weekly tests tomorrow and will have the latest analysis before I see her on Friday.  I must say I'm more than usually apprehensive about  what we're going to learn at that appoimtment!!

    Hi Texas

    How did you go with your last check up? Hope it is was good news.

    Sue

     

  • Eskimo lily
    Eskimo lily Member Posts: 43
    Suekub said:

    Hi Texas

    How did you go with your last check up? Hope it is was good news.

    Sue

     

    Update

    Hi sue,

     

    how have things been since restarting on the 400mg dose? Hope you've been well!

  • Suekub
    Suekub Member Posts: 137

    Update

    Hi sue,

     

    how have things been since restarting on the 400mg dose? Hope you've been well!

    Hi

    i am just awaiting a call from my doctor after having more blood tests on Monday, but have spoken with the nurse who tells me that one of my liver enzymes (AST) is quite high (the same level that reduced me to the lower dose) which is disappointing. Not sure what will happen next but will post again after I speak with the doctor. Also waiting for result of echo also taken on Monday which was done because if irregular heart rate.

    I am so disappointed that Votrient doesn't appear to agree with me but hopefully there are other options available.

    Thanks for thinking about me.

    Sue

     

     

  • Djinnie
    Djinnie Member Posts: 945
    Suekub said:

    Hi

    i am just awaiting a call from my doctor after having more blood tests on Monday, but have spoken with the nurse who tells me that one of my liver enzymes (AST) is quite high (the same level that reduced me to the lower dose) which is disappointing. Not sure what will happen next but will post again after I speak with the doctor. Also waiting for result of echo also taken on Monday which was done because if irregular heart rate.

    I am so disappointed that Votrient doesn't appear to agree with me but hopefully there are other options available.

    Thanks for thinking about me.

    Sue

     

     

    Hi

    Hi Sue, you have been through such a lot, I hope you have better news next week. We will all be thinking of you!

     

    Djinnie x

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

    Hi Texas

    How did you go with your last check up? Hope it is was good news.

    Sue

     

    Hi

    Hi, Sue.  I'm afraid my news is also not good.  Latest labs (yesterday) show that I've reached the end of the road.  Votrient is undoubtedly a very good drug and it seemed to be giving me what we were looking for.  However, the hepato-toxicity, even after I reduced my dose to 400 mg,  has proved too much for my liver.  We haven't yet seen the report from my recent scan and I'm due another CT + contrast on Monday, but that's all a bit academic now.  We'll learn at Onc appointment tomorrow whether there is anything else that can be done for me by medical science, apart from hospice. 

    I hope there are good next treatment options open to you should your enzymes take you off V. permanently. (No doubt about mine - all main LFTs ("liver function tests") yesterday are showing horrendous numbers.)

  • BLKJAK
    BLKJAK Member Posts: 108

    Hi

    Hi, Sue.  I'm afraid my news is also not good.  Latest labs (yesterday) show that I've reached the end of the road.  Votrient is undoubtedly a very good drug and it seemed to be giving me what we were looking for.  However, the hepato-toxicity, even after I reduced my dose to 400 mg,  has proved too much for my liver.  We haven't yet seen the report from my recent scan and I'm due another CT + contrast on Monday, but that's all a bit academic now.  We'll learn at Onc appointment tomorrow whether there is anything else that can be done for me by medical science, apart from hospice. 

    I hope there are good next treatment options open to you should your enzymes take you off V. permanently. (No doubt about mine - all main LFTs ("liver function tests") yesterday are showing horrendous numbers.)

    I'm sickened by the news

    Hey Texas_wedge,

    I feel like I've been punched in the gut after reading your post. I can only imagine what you're feeling. Is it possible to go off treatment for a period of time so your liver can recover and then try a 200mg dose?

    I'm not a huge religious person but I'm going to offer up some extra prayers for you tonight. There has to be another option.

    BLKJAK

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

    I'm sickened by the news

    Hey Texas_wedge,

    I feel like I've been punched in the gut after reading your post. I can only imagine what you're feeling. Is it possible to go off treatment for a period of time so your liver can recover and then try a 200mg dose?

    I'm not a huge religious person but I'm going to offer up some extra prayers for you tonight. There has to be another option.

    BLKJAK

    Geeesh...  T.W.. no way... 

    Geeesh...  T.W.. no way...  There has to be something that won't take your Liver out..   Sure hope so... I know you will be looking hard at that..   BUT, perhaps the Votrient did a good turn on the Mets for the time you were on it.. Hope so.. that could put a lot more time on the clock to research what is next...

    Ron

  • Djinnie
    Djinnie Member Posts: 945

    Hi

    Hi, Sue.  I'm afraid my news is also not good.  Latest labs (yesterday) show that I've reached the end of the road.  Votrient is undoubtedly a very good drug and it seemed to be giving me what we were looking for.  However, the hepato-toxicity, even after I reduced my dose to 400 mg,  has proved too much for my liver.  We haven't yet seen the report from my recent scan and I'm due another CT + contrast on Monday, but that's all a bit academic now.  We'll learn at Onc appointment tomorrow whether there is anything else that can be done for me by medical science, apart from hospice. 

    I hope there are good next treatment options open to you should your enzymes take you off V. permanently. (No doubt about mine - all main LFTs ("liver function tests") yesterday are showing horrendous numbers.)

    Hi

    Hi Texas, 

    I am so shocked and saddened at your news! I will be praying that your Onc gives you some hopeful news tomorrow. 

    Djinnie x

  • Eskimo lily
    Eskimo lily Member Posts: 43
    Djinnie said:

    Hi

    Hi Texas, 

    I am so shocked and saddened at your news! I will be praying that your Onc gives you some hopeful news tomorrow. 

    Djinnie x

    Texas wedge, my heart sank

    Texas wedge, my heart sank when I read your post.

    ill be thinking of you tomorrow during your appointment with your oncologist.

  • Suekub
    Suekub Member Posts: 137

    Hi

    Hi, Sue.  I'm afraid my news is also not good.  Latest labs (yesterday) show that I've reached the end of the road.  Votrient is undoubtedly a very good drug and it seemed to be giving me what we were looking for.  However, the hepato-toxicity, even after I reduced my dose to 400 mg,  has proved too much for my liver.  We haven't yet seen the report from my recent scan and I'm due another CT + contrast on Monday, but that's all a bit academic now.  We'll learn at Onc appointment tomorrow whether there is anything else that can be done for me by medical science, apart from hospice. 

    I hope there are good next treatment options open to you should your enzymes take you off V. permanently. (No doubt about mine - all main LFTs ("liver function tests") yesterday are showing horrendous numbers.)

    So sorry to hear...

    Texas very sorry to learn of your news. Sending positive thoughts to you. I sincerely hope there are some treatment options still open to you.

    I now have a copy of my blood results and it appears the only problem is my ALP level which is 150 I had previousky stated that the AST was high which was incorrect - it is stated as specimen haemolysed (contaminated?), ALT is OK at 27, GGT is 64 (but this has always been above normal levels. Creatinine is stlill within nirmal limits at 86. My TSH is still too high at 9.9 and am hoping that tweaking my thyroxine dose will sort that out.

    anyway, I am now off drug again. Further blood test in a week and then see oncologist next Friday.

    Sue

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

    So sorry to hear...

    Texas very sorry to learn of your news. Sending positive thoughts to you. I sincerely hope there are some treatment options still open to you.

    I now have a copy of my blood results and it appears the only problem is my ALP level which is 150 I had previousky stated that the AST was high which was incorrect - it is stated as specimen haemolysed (contaminated?), ALT is OK at 27, GGT is 64 (but this has always been above normal levels. Creatinine is stlill within nirmal limits at 86. My TSH is still too high at 9.9 and am hoping that tweaking my thyroxine dose will sort that out.

    anyway, I am now off drug again. Further blood test in a week and then see oncologist next Friday.

    Sue

    Hey T.W..!

    Well, if misery really loves company, move over pal...  I just got home from my Onc visit.. I was hoping that she would consider me going on 200 mg of Votrient.. got the no, no, and heck no reply..  My Liver won't handle it..   And my Onc did not want to, nor did she show me my scan from Tuesday... however that alone told me it was not good.. Yes my lung mets are back as they were before any treatment.. boooo...

    And Inlyta could be just as bad for my liver... but, we will see..!  I take my first pill in a little while here...

    So, the fun part.. yes you KNEW I would try to have a fun part..  First my favorite cutey rececptionist flirted with me a while... way too  young for me.. but darn cute and real flirty... takes the edge of, so to speak..  But it gets better, a lot better...  so I do the Onc visit and all that... talk a little bit about my vacation... and the Onc and the student leave...  there I am with the really HOT P.A. and then 3 more women walk in the room...  The hair, the hair..!  They just wanted to stand and look at me... Geeesh.. to be 30 years younger I would of chased all 4 of them..!  At least my brain still has an imagination... 

    Back to reality again... time for a pill...

    Ron

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

    Hey T.W..!

    Well, if misery really loves company, move over pal...  I just got home from my Onc visit.. I was hoping that she would consider me going on 200 mg of Votrient.. got the no, no, and heck no reply..  My Liver won't handle it..   And my Onc did not want to, nor did she show me my scan from Tuesday... however that alone told me it was not good.. Yes my lung mets are back as they were before any treatment.. boooo...

    And Inlyta could be just as bad for my liver... but, we will see..!  I take my first pill in a little while here...

    So, the fun part.. yes you KNEW I would try to have a fun part..  First my favorite cutey rececptionist flirted with me a while... way too  young for me.. but darn cute and real flirty... takes the edge of, so to speak..  But it gets better, a lot better...  so I do the Onc visit and all that... talk a little bit about my vacation... and the Onc and the student leave...  there I am with the really HOT P.A. and then 3 more women walk in the room...  The hair, the hair..!  They just wanted to stand and look at me... Geeesh.. to be 30 years younger I would of chased all 4 of them..!  At least my brain still has an imagination... 

    Back to reality again... time for a pill...

    Ron

    Cuties

    Well, Ron, at least we know the pill you really don't need!!

  • GSRon
    GSRon Member Posts: 1,303 Member

    Cuties

    Well, Ron, at least we know the pill you really don't need!!

    Nope, got a different little

    Nope, got a different little odd shaped pill now...  which I did not take last night..  I went to lay down and was out...  My brain is a bit fried right now... FYI, in case I was not clear, Votrient did NOT fail me... rather I failed the Votrient..  that is how I feel... sigh.  I have over a month's supply sitting here yet I must move on...

    Thank you all.. love ya all..!

    Ron

  • BLKJAK
    BLKJAK Member Posts: 108
    GSRon said:

    Hey T.W..!

    Well, if misery really loves company, move over pal...  I just got home from my Onc visit.. I was hoping that she would consider me going on 200 mg of Votrient.. got the no, no, and heck no reply..  My Liver won't handle it..   And my Onc did not want to, nor did she show me my scan from Tuesday... however that alone told me it was not good.. Yes my lung mets are back as they were before any treatment.. boooo...

    And Inlyta could be just as bad for my liver... but, we will see..!  I take my first pill in a little while here...

    So, the fun part.. yes you KNEW I would try to have a fun part..  First my favorite cutey rececptionist flirted with me a while... way too  young for me.. but darn cute and real flirty... takes the edge of, so to speak..  But it gets better, a lot better...  so I do the Onc visit and all that... talk a little bit about my vacation... and the Onc and the student leave...  there I am with the really HOT P.A. and then 3 more women walk in the room...  The hair, the hair..!  They just wanted to stand and look at me... Geeesh.. to be 30 years younger I would of chased all 4 of them..!  At least my brain still has an imagination... 

    Back to reality again... time for a pill...

    Ron

    WTF

    I am really praying that Inlyta works for you Ron. I surely wasn't expecting to receive this news right after getting the direct hit from Texas_wedge the other day. I only started on this hellish journey 5 months ago and I'm relatively young at 41 years old. I guess I thought that I'm somewhat invincible and will make it out of this. The recent news has really rocked me. It forces me to accept that this **** of a disease is ruthless and will have its way with us at will. It really sucks. I'll be praying for you, TW and the rest of us. When one of us gets bad news we all feel it.

    Sorry if I rambled or got you down. My mind is a mess. Now where is my Lorazepam?

    BLKAJK

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

    WTF

    I am really praying that Inlyta works for you Ron. I surely wasn't expecting to receive this news right after getting the direct hit from Texas_wedge the other day. I only started on this hellish journey 5 months ago and I'm relatively young at 41 years old. I guess I thought that I'm somewhat invincible and will make it out of this. The recent news has really rocked me. It forces me to accept that this **** of a disease is ruthless and will have its way with us at will. It really sucks. I'll be praying for you, TW and the rest of us. When one of us gets bad news we all feel it.

    Sorry if I rambled or got you down. My mind is a mess. Now where is my Lorazepam?

    BLKAJK

    Hey BLKJAK..!!  You may of

    Hey BLKJAK..!!  You may of guessed, but Da Wedge-a-man and I are brothers from another Mother (and father)..!  Seriously.. we are connected, both for good and the bad... sigh..    I am sure we both are still fighting.. and will do so until... geeesh...

    I wonder why Inlyta is not available for you T.W..?    I also wonder what other alternatives are out there..??

    Ron

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

    Hey BLKJAK..!!  You may of

    Hey BLKJAK..!!  You may of guessed, but Da Wedge-a-man and I are brothers from another Mother (and father)..!  Seriously.. we are connected, both for good and the bad... sigh..    I am sure we both are still fighting.. and will do so until... geeesh...

    I wonder why Inlyta is not available for you T.W..?    I also wonder what other alternatives are out there..??

    Ron

    3rd musketeer?

    It sucks big time to be young and have a cancer diagnosis. At least I'm in my 60's. I know there gets to be a point when the perspective changes. I'm fortunate to be able to stumble along. Ron and Tex are 2 tough son of a guns. And for all others, LEARN HOW TO LIVE!. These guys could have played poker with James Bond. ..and the beat goes on....I guess time moves along and we learn to live it.

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

    3rd musketeer?

    It sucks big time to be young and have a cancer diagnosis. At least I'm in my 60's. I know there gets to be a point when the perspective changes. I'm fortunate to be able to stumble along. Ron and Tex are 2 tough son of a guns. And for all others, LEARN HOW TO LIVE!. These guys could have played poker with James Bond. ..and the beat goes on....I guess time moves along and we learn to live it.

    Fox... I am not tough... just

    Fox... I am not tough... just too darn chicken to give up easily..!  Speaking of tough... you fit that moniker..

    Ron

  • Suekub
    Suekub Member Posts: 137
    GSRon said:

    Fox... I am not tough... just

    Fox... I am not tough... just too darn chicken to give up easily..!  Speaking of tough... you fit that moniker..

    Ron

    Round 3!

    Blood tests this week have all come back within normal range. As it is only ALP levels that seem to go up we are trying 400mg again and try it for longer than 1 week to see if it plateaus at a reasonable range. If this does not work it may may moving on to sunitinib. 

    Here's hoping for a longer stay on Votrient.