Votrient Side Effects

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  • Thomalexa
    Thomalexa Member Posts: 6
    alice124 said:

    Yippeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee!!!!!!!!!!!!!!!!!!!!!!!

    What a great way to start a weekend! Congratulations BDS -- job well done (in many ways). Here's to more TUMOR shrinkage or--even better--disappearance!

     

    Now we just need to get Tex back on track! You reading this Tex!?!?

    Kinda new to all of this.

    Hello, 

    I'm probably not posting this right, but I'm new to all of this. I'm a 37 year old male and I was diagnosed with RCC via scans in March 2013. The doctors say there are multiple tumors on both kidneys and the first doctor said they wanted to yank out both of my kidneys. Needless to say, the prospect of that freaks me out a little. After getting a confirmation of cancer via a needle biopsy, I am now on votrient. I've only been taking it for about 3 weeks. No side effects to report, thankfully, but I did notice today my stubble is turning white. Other than that, I have a hard time falling asleep at night these past few nights....a lot of back pain. 

    I'm really praying this is a sign the medication is working. Other than this, I have no health problems. I'm still working and doing all of my normal activities, but I do feel tired from time to time. I'd rather avoid surgery if at all possible. I've just seen too many instances of people getting surgery and then just going downhill from there. 

    I did have the genetics test for VHL and that came back as positive. So, I guess that means my body has a higher risk of developing cysts that can turn into either benign or malignant masses. 

    I go in for scans at the end of the month to see the progress of the medication. I'm quite scared. I have a family and I'm the breadwinner as well. 

    I appreciate any thoughts, things to look for, and general experiences that you (or anyone on this thread) can share. 

     

    God bless, 

     

    Thomas

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

    Kinda new to all of this.

    Hello, 

    I'm probably not posting this right, but I'm new to all of this. I'm a 37 year old male and I was diagnosed with RCC via scans in March 2013. The doctors say there are multiple tumors on both kidneys and the first doctor said they wanted to yank out both of my kidneys. Needless to say, the prospect of that freaks me out a little. After getting a confirmation of cancer via a needle biopsy, I am now on votrient. I've only been taking it for about 3 weeks. No side effects to report, thankfully, but I did notice today my stubble is turning white. Other than that, I have a hard time falling asleep at night these past few nights....a lot of back pain. 

    I'm really praying this is a sign the medication is working. Other than this, I have no health problems. I'm still working and doing all of my normal activities, but I do feel tired from time to time. I'd rather avoid surgery if at all possible. I've just seen too many instances of people getting surgery and then just going downhill from there. 

    I did have the genetics test for VHL and that came back as positive. So, I guess that means my body has a higher risk of developing cysts that can turn into either benign or malignant masses. 

    I go in for scans at the end of the month to see the progress of the medication. I'm quite scared. I have a family and I'm the breadwinner as well. 

    I appreciate any thoughts, things to look for, and general experiences that you (or anyone on this thread) can share. 

     

    God bless, 

     

    Thomas

    Votrient

    Welcome here Thomas.  There's no denying you're in a tough place at 37 but you seem to be holding up well and approaching it with courage and resolution.

    It's too early to say much at this point and the scan will be crucial for further information.  I just want to say two things - it does sound as if Votrient has started to get to work for you AND all the indications are that it's a drug that's having huge success for a rapidly growing number of patients - we're hearing great stories of big successes with it on an almost daily basis lately. 

    Stick with us here and keep us posted on developments and we'll give you all the help we can. 

  • Thomalexa
    Thomalexa Member Posts: 6

    Votrient

    Welcome here Thomas.  There's no denying you're in a tough place at 37 but you seem to be holding up well and approaching it with courage and resolution.

    It's too early to say much at this point and the scan will be crucial for further information.  I just want to say two things - it does sound as if Votrient has started to get to work for you AND all the indications are that it's a drug that's having huge success for a rapidly growing number of patients - we're hearing great stories of big successes with it on an almost daily basis lately. 

    Stick with us here and keep us posted on developments and we'll give you all the help we can. 

    Extension.

    Texas, 

     

    Thank you for your well wishes. I did meet with the oncologist and they wanted me to be on the medication for longer than four weeks, so they've extended this to an 8 week treatment. I'll have the scans sometime in the middle of September. 

    Thomas

  • Michigan420
    Michigan420 Member Posts: 1
    Votrient

    Side effects very from what I see, my wife has been on it since Dec 2012, each cycle can bring or take away differnet side effects, or same ones.

  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Votrient

    Side effects very from what I see, my wife has been on it since Dec 2012, each cycle can bring or take away differnet side effects, or same ones.

    Variable side-effects

    Yes, that seems to be a common feature of the new targeted therapies - you never know what you're going to get and can't predict from one cycle to anther!   However, Votrient differs from, e.g., Sutent,  in that there aren't actually cycles as such at all because it's given continuously other than with obligatory breaks necessitated by adverse events.  What side-effects does your Wife have - not bad I hope?  She's been on for a while now so have her liver enzymes given any trouble?

  • Baaa-bs
    Baaa-bs Member Posts: 50

    Vitamix
    Another good move you've made. I make myself smoothies on a daily basis and there's no doubt I ingest even more fruit than I did previously and also have a larger fluid intake, despite trying to substitute a glass of a smoothie for a mug of espresso several times each day! It's a great way of guaranteeing constantly getting plenty of anti-angiogenic fruits and vegetables.

    Love mine!

    I've had my Vitamix for a couple years now. LOVE IT! Nice way to throw in veggies into your day!

  • redddog
    redddog Member Posts: 6

    Variable side-effects

    Yes, that seems to be a common feature of the new targeted therapies - you never know what you're going to get and can't predict from one cycle to anther!   However, Votrient differs from, e.g., Sutent,  in that there aren't actually cycles as such at all because it's given continuously other than with obligatory breaks necessitated by adverse events.  What side-effects does your Wife have - not bad I hope?  She's been on for a while now so have her liver enzymes given any trouble?

    Non-RCC STS hopeful here.

    Hello all.

    Just checking in with my story. We have a 12 year old son with malignant peripheral nerve sheath tumor(mpnst). He's been fighting for 5 years and last summer was dignosed with recurrent mets. Went through a hellacious few rounds of Irinotecan/Temodar (if you haven't heard of it, you're lucky) and is now on Votrient.

    We don't know what to expect but are hoping against hope that this is able to buy us some time. He's starting his second month and we've just learned of the high blood pressure. 138/98 last time we checked and the Drs ordered him to stand down on ANY activity until they see the nephrologist, which is today.

    As far as other side efects, he's had some thinning hair (not white), a bit of nausea, some vomiting etc. NOTHING like the hell that was Irinotecan or Docirubicin/Ifosfomide (when he was originally treated 5 years ago).

    The other really bummer side effect he's experienced on this is blurry vision. He's been experiencing that after about the first week and is seriously bumming him out. I'm kinda hoping that the vision issue could be a side-effect of the high blood pressure and could be cleared up which BP meds but I don't know.

    Any ideas what BP meds they will talk about? Obviously, looking at something with the best side-effect profile is our goal.

    Thanks all and I hope you don't mind me crashing your RCC club.

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

    Non-RCC STS hopeful here.

    Hello all.

    Just checking in with my story. We have a 12 year old son with malignant peripheral nerve sheath tumor(mpnst). He's been fighting for 5 years and last summer was dignosed with recurrent mets. Went through a hellacious few rounds of Irinotecan/Temodar (if you haven't heard of it, you're lucky) and is now on Votrient.

    We don't know what to expect but are hoping against hope that this is able to buy us some time. He's starting his second month and we've just learned of the high blood pressure. 138/98 last time we checked and the Drs ordered him to stand down on ANY activity until they see the nephrologist, which is today.

    As far as other side efects, he's had some thinning hair (not white), a bit of nausea, some vomiting etc. NOTHING like the hell that was Irinotecan or Docirubicin/Ifosfomide (when he was originally treated 5 years ago).

    The other really bummer side effect he's experienced on this is blurry vision. He's been experiencing that after about the first week and is seriously bumming him out. I'm kinda hoping that the vision issue could be a side-effect of the high blood pressure and could be cleared up which BP meds but I don't know.

    Any ideas what BP meds they will talk about? Obviously, looking at something with the best side-effect profile is our goal.

    Thanks all and I hope you don't mind me crashing your RCC club.

    Blurry vision

    reddog,  I post here quite a bit so there are many fellow members who can confirm that I'm not an alarmist by nature.

    However, I would urge you to have the vision issue investigated absolutely immediately - it can be a highly dangerous side-effect that's taking place.  Please don't delay in getting expert advice about it.  If it turns out to be nothing serious I'll be delighted but please don't take any chances!

     

     

  • redddog
    redddog Member Posts: 6

    Blurry vision

    reddog,  I post here quite a bit so there are many fellow members who can confirm that I'm not an alarmist by nature.

    However, I would urge you to have the vision issue investigated absolutely immediately - it can be a highly dangerous side-effect that's taking place.  Please don't delay in getting expert advice about it.  If it turns out to be nothing serious I'll be delighted but please don't take any chances!

     

     

    Sent you a PM.
    Now I'm

    Sent you a PM.

    Now I'm scared.

  • redddog
    redddog Member Posts: 6
    redddog said:

    Non-RCC STS hopeful here.

    Hello all.

    Just checking in with my story. We have a 12 year old son with malignant peripheral nerve sheath tumor(mpnst). He's been fighting for 5 years and last summer was dignosed with recurrent mets. Went through a hellacious few rounds of Irinotecan/Temodar (if you haven't heard of it, you're lucky) and is now on Votrient.

    We don't know what to expect but are hoping against hope that this is able to buy us some time. He's starting his second month and we've just learned of the high blood pressure. 138/98 last time we checked and the Drs ordered him to stand down on ANY activity until they see the nephrologist, which is today.

    As far as other side efects, he's had some thinning hair (not white), a bit of nausea, some vomiting etc. NOTHING like the hell that was Irinotecan or Docirubicin/Ifosfomide (when he was originally treated 5 years ago).

    The other really bummer side effect he's experienced on this is blurry vision. He's been experiencing that after about the first week and is seriously bumming him out. I'm kinda hoping that the vision issue could be a side-effect of the high blood pressure and could be cleared up which BP meds but I don't know.

    Any ideas what BP meds they will talk about? Obviously, looking at something with the best side-effect profile is our goal.

    Thanks all and I hope you don't mind me crashing your RCC club.

    RPLS

    Well, I think I found what you were talking about. RPLS, right?

    It would be just his luck to have this happen to him. Unbelievable.

    Who would you suggest I ask to spearhead this because the idiot Onc Doc made no mention of it. Would the Nephrologist know or the Ophthamologist?

    Thanks for the heads-up. From what I could find there really aren't many cases of this and Votrient, right?

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

    RPLS

    Well, I think I found what you were talking about. RPLS, right?

    It would be just his luck to have this happen to him. Unbelievable.

    Who would you suggest I ask to spearhead this because the idiot Onc Doc made no mention of it. Would the Nephrologist know or the Ophthamologist?

    Thanks for the heads-up. From what I could find there really aren't many cases of this and Votrient, right?

    RPLS

    Correct - I'm so glad you got onto it pronto!  In fairness to your docs, it wasn't known about with Votrient until very recently so very few, even of the experts, are aware of it so far.  Votrient is still fairly new and so much is still being learned about adverse events.  However, it is known with other anti-angiogenic TKIs and, although rare, it's so dangerous that you should avoid taking chances, I feel.  Neither a nephrologist nor an ophthalmologist is likely to know of it.  The best port of call would normally be your oncologist. 

    In your shoes, I think I would stop using the Votrient immediately and refer the question to your Onc as a matter of urgency, citing the studies that I'm sure you've found by now.  If you don't get a satisfactory response, I would go for a second opinion at once.

  • redddog
    redddog Member Posts: 6

    RPLS

    Correct - I'm so glad you got onto it pronto!  In fairness to your docs, it wasn't known about with Votrient until very recently so very few, even of the experts, are aware of it so far.  Votrient is still fairly new and so much is still being learned about adverse events.  However, it is known with other anti-angiogenic TKIs and, although rare, it's so dangerous that you should avoid taking chances, I feel.  Neither a nephrologist nor an ophthalmologist is likely to know of it.  The best port of call would normally be your oncologist. 

    In your shoes, I think I would stop using the Votrient immediately and refer the question to your Onc as a matter of urgency, citing the studies that I'm sure you've found by now.  If you don't get a satisfactory response, I would go for a second opinion at once.

    rpls

    OK so as you thought, the nephrologist knew little about RPLS and dismissed it after looking into his eyes and seeing no evidence of pressure on the brain. His postulation was that if he didn't have other classic symptoms (headache, vomitting, dizziness, confusion etc) that it couldn't be RPLS. Although, I'm not entirely sure he knew of it. I'm certain they didn't know of the latest research as, like you noted, it's a new finding.

    Our onc doc is out of town. He's great but not terribly knowledgeable about Pazopanib so we are sort of learning it together. I'm putting a call out to our out-of-town doc @ Childrens Hospital in Philly. He's the guy who could offer a second opinion.

    Until then, I think we'll suspend the pazopanib. A few days won't change the course but if it's RPLS, a few days could be trouble.

    You wouldn't happen to know if the only sure way to identify RPLS is by MRI would you? This poor kid has spent the better part of the last 5 years in that god forsaken tube.

    Anyway, thanks so much for your help.  

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

    rpls

    OK so as you thought, the nephrologist knew little about RPLS and dismissed it after looking into his eyes and seeing no evidence of pressure on the brain. His postulation was that if he didn't have other classic symptoms (headache, vomitting, dizziness, confusion etc) that it couldn't be RPLS. Although, I'm not entirely sure he knew of it. I'm certain they didn't know of the latest research as, like you noted, it's a new finding.

    Our onc doc is out of town. He's great but not terribly knowledgeable about Pazopanib so we are sort of learning it together. I'm putting a call out to our out-of-town doc @ Childrens Hospital in Philly. He's the guy who could offer a second opinion.

    Until then, I think we'll suspend the pazopanib. A few days won't change the course but if it's RPLS, a few days could be trouble.

    You wouldn't happen to know if the only sure way to identify RPLS is by MRI would you? This poor kid has spent the better part of the last 5 years in that god forsaken tube.

    Anyway, thanks so much for your help.  

    Update

    Hi All..!  I figured I would give you an update and add to the info about Votirent.  In short, I was on Votrient for just over a month at 800 MG, then had high Liver enzymes, off the drugs for about a month, restarted at 600 MG.  Then about 4 months later found out my Liver Bilirubin was high, BUT my scans showed great results.  But have been off the Votrient for about 7 weeks now.

    So, for me, I still have some slight S.E.'s and I felt this should be made known.  My hair is finally starting to get some color in my eyebrows and my beard.   Still super white hair the rest of my body.  I still have tender skin and peeling on the bottom of my feet, my head is super sensitive to sunlight..  And that one specialpart of my body gets very tender every few weeks and still did that again a few days ago. Plus I still have some fatigue.  So, I think that even though it has been this long off of the Votriet, it is still in my system.  Hopefully that means it is still fighting for me..!  I will know in about a week, once I get the results from my new scans.

    Ron

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

    Update

    Hi All..!  I figured I would give you an update and add to the info about Votirent.  In short, I was on Votrient for just over a month at 800 MG, then had high Liver enzymes, off the drugs for about a month, restarted at 600 MG.  Then about 4 months later found out my Liver Bilirubin was high, BUT my scans showed great results.  But have been off the Votrient for about 7 weeks now.

    So, for me, I still have some slight S.E.'s and I felt this should be made known.  My hair is finally starting to get some color in my eyebrows and my beard.   Still super white hair the rest of my body.  I still have tender skin and peeling on the bottom of my feet, my head is super sensitive to sunlight..  And that one specialpart of my body gets very tender every few weeks and still did that again a few days ago. Plus I still have some fatigue.  So, I think that even though it has been this long off of the Votriet, it is still in my system.  Hopefully that means it is still fighting for me..!  I will know in about a week, once I get the results from my new scans.

    Ron

    Thank you for the update

    Hi Ron,

     

    thanks for keeping us all in the loop. My mom is meant to start Votrient for the very first time next week, on 600mg. It's good to know what other people are experiencing so we know we are not alone and what is common/uncommon.

  • Eskimo lily
    Eskimo lily Member Posts: 43

    Thank you for the update

    Hi Ron,

     

    thanks for keeping us all in the loop. My mom is meant to start Votrient for the very first time next week, on 600mg. It's good to know what other people are experiencing so we know we are not alone and what is common/uncommon.

    Update on mom's Votrient

    Just in case anyone is wondering, my mom's been on Votrient for a week now and she's tolerating it well. Her blood pressure has been slightly elevated (140's systolic) but we are keeping a close eye on it in case it gets any higher. She says she doesn't feel any different in terms of fatigue but I've noticed she's been taking naps where she wasn't before. We are praying and keeping our figners crossed that it works for her! More updates to come after her first set of bloods and her CT scans.

  • redddog
    redddog Member Posts: 6
    Another update...

    sorry. double post.

  • redddog
    redddog Member Posts: 6
    Another update...

    Hey guys.

    Just got scans back for my son. All tumors eithe stayed the same or shrank -even tumor outside of the radiation field. He's tolerating it fine. We also had an MRI done to rule out RPLS and they did. He just gets blurry vision from the stuff.

    Drs are "elated" and scheduled next scans for after christmas - a milestone we did not think we would see, let alone this last summer.

    This stuff isn't screwing around. Can't tell you how excited we are.

     

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

    Another update...

    sorry. double post.

    Reddog...  Good news is worth repeating..!

    Ron

  • angec
    angec Member Posts: 924
    Encoraging news!

    Just thought I would come here to update this link and keep the information rolling!  Mom had her scans Tuesday, and she is Stable!  So glad to hear this. To recap she is 81, has grade 4/stage 4.  She had mets in quite a few places.  She started on 400 mgs of Votrient in December of last year. Took it for about two months but the side affects proved to be too much for her. She went off for about 5 weeks, her scans showed significant shrinkage. The doctor put her on 200 mgs. and her last set of scans showed all but one met gone in her lunch. Everything else resolved. Today she is still on 200 mgs. and the same met is stable.  I will take it! So 200 mgs. seems to be holding.  

     

     

  • Suekub
    Suekub Member Posts: 137
    angec said:

    Encoraging news!

    Just thought I would come here to update this link and keep the information rolling!  Mom had her scans Tuesday, and she is Stable!  So glad to hear this. To recap she is 81, has grade 4/stage 4.  She had mets in quite a few places.  She started on 400 mgs of Votrient in December of last year. Took it for about two months but the side affects proved to be too much for her. She went off for about 5 weeks, her scans showed significant shrinkage. The doctor put her on 200 mgs. and her last set of scans showed all but one met gone in her lunch. Everything else resolved. Today she is still on 200 mgs. and the same met is stable.  I will take it! So 200 mgs. seems to be holding.  

     

     

    Great news

    I started Votrient a little under 3 months ago, liver wasn't able to tolerate full dose so have continued on 400mg with few side effects to date. Had CT on Wednesday and see onc for results on Monday. Hoping for the same good results. 

    Sue