Votrient Side Effects

KJones1969
KJones1969 Member Posts: 158
My husband started Votrient Saturday to treat Stage IV Clear Cell RCC and I wanted to see if anyone else has taken it. If so what side effects have you seen? Thanks
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Comments

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    Votrient side effects
    If you go to the thread entitled "pazopanib side effects" you'll find good info. from ivfour who has been on Votrient (pazopanib) for some time. You'll find the thread at

    http://csn.cancer.org/node/232668

    It would also be worth while going into the archive at KIDNEY-ONC for further information from those who've taken it. This should get you some info:

    http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE

    I hope this helps.
  • alice124
    alice124 Member Posts: 896
    Votrient
    Hi K - Just wondering how the patient is tolerating the Votrient? John started the MDX1106 and Votrient this past Thursday (5/10).
  • KJones1969
    KJones1969 Member Posts: 158
    alice124 said:

    Votrient
    Hi K - Just wondering how the patient is tolerating the Votrient? John started the MDX1106 and Votrient this past Thursday (5/10).

    Votrient Side Effects Alice124
    We are on day 12 of taking Votrient and the only side effect so far is he seems a little more tired. He says he isn't but I can tell by what time he is getting out of bed and going to bed at night. He has not had any of the other side effects we have heard about. We are being optimistic and praying nothing else happens even though the pharmacist told us 14 days before we know side effects.
  • alice124
    alice124 Member Posts: 896

    Votrient Side Effects Alice124
    We are on day 12 of taking Votrient and the only side effect so far is he seems a little more tired. He says he isn't but I can tell by what time he is getting out of bed and going to bed at night. He has not had any of the other side effects we have heard about. We are being optimistic and praying nothing else happens even though the pharmacist told us 14 days before we know side effects.

    Votrient Sides
    Same on this end for the most part. But he was at hospital this morning and they told him to drink more fluids as he was dehydrated. That kind of surprised me as I bought him a Vitamix as an early Father's Day gift last week, and he's been making and drinking fruit smoothies. I thought he was taking in more fluid than usual.

    Let's continue to compare notes and keep our fingers crossed.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    alice124 said:

    Votrient Sides
    Same on this end for the most part. But he was at hospital this morning and they told him to drink more fluids as he was dehydrated. That kind of surprised me as I bought him a Vitamix as an early Father's Day gift last week, and he's been making and drinking fruit smoothies. I thought he was taking in more fluid than usual.

    Let's continue to compare notes and keep our fingers crossed.

    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.
  • alice124
    alice124 Member Posts: 896

    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.

    Vitamix
    You and the other users of Vitamix on this Board deserve the credit for this move. I didn't know what a Vitamix was until I googled it after reading one group of postings on diet. I thought Vitamix was a vitamin mix. But I'm glad I got it as it seems to encourage John to eat more often and healthier. He is thoroughly enjoying it.
  • Bennette
    Bennette Member Posts: 65
    alice124 said:

    Votrient Sides
    Same on this end for the most part. But he was at hospital this morning and they told him to drink more fluids as he was dehydrated. That kind of surprised me as I bought him a Vitamix as an early Father's Day gift last week, and he's been making and drinking fruit smoothies. I thought he was taking in more fluid than usual.

    Let's continue to compare notes and keep our fingers crossed.

    Votrient Side Effects
    Incase you are still wondering, my mother has been taking Votrient for 3 weeks now and seems to be doing fine on it. We only had one morning of nausea before we started her on anti-nausea meds and she has been fine since - but that was on day 2 of the Votrient, so I am not sure if it caused it or not. Also, they had her on other things for appetite before she started Votrient, because she stopped eating after her kidney surgery. So those things might cover up any appetite side effects. So far we have not had to increase her high BP meds, which was the doctor's biggest concern with Votrient, she is still taking the same dose and we check her BP a couple times a day to make sure it isn't skyrocketing.
    Hope this helps.

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

    Votrient Side Effects
    Incase you are still wondering, my mother has been taking Votrient for 3 weeks now and seems to be doing fine on it. We only had one morning of nausea before we started her on anti-nausea meds and she has been fine since - but that was on day 2 of the Votrient, so I am not sure if it caused it or not. Also, they had her on other things for appetite before she started Votrient, because she stopped eating after her kidney surgery. So those things might cover up any appetite side effects. So far we have not had to increase her high BP meds, which was the doctor's biggest concern with Votrient, she is still taking the same dose and we check her BP a couple times a day to make sure it isn't skyrocketing.
    Hope this helps.

    Bennette

    Votrient side effects
    That's the sort of valuable feedback that these threads are so good for and I'm sure I speak for everyone in saying how delighted I am to hear how well your Mother is doing.
  • alice124
    alice124 Member Posts: 896
    Bennette said:

    Votrient Side Effects
    Incase you are still wondering, my mother has been taking Votrient for 3 weeks now and seems to be doing fine on it. We only had one morning of nausea before we started her on anti-nausea meds and she has been fine since - but that was on day 2 of the Votrient, so I am not sure if it caused it or not. Also, they had her on other things for appetite before she started Votrient, because she stopped eating after her kidney surgery. So those things might cover up any appetite side effects. So far we have not had to increase her high BP meds, which was the doctor's biggest concern with Votrient, she is still taking the same dose and we check her BP a couple times a day to make sure it isn't skyrocketing.
    Hope this helps.

    Bennette

    Votrient / Marinol
    Thank you Bennette for the feedback, and I'm glad your mom is having none of the ill effects that we all worry about. Your mom's experience on Votrient so far pretty much is identical to John's experience. Let's keep our fingers crossed for them both.

    One thing I've learned from dealing with Cancer is I have for most of my life undervalued a good laugh. Given that they come less frequently these days, I'm learning to enjoy them while I can. So--since you mention appetite stimulants for your mom, let me share with you a story I recently experienced relating to John (my husband). Maybe they have two drugs in common.

    About a month ago with John's weight decreasing and my concern increasing over it, I encouraged John to call his oncologist and ask about an appetite stimulant, which he did. The Dr. called in a prescription to a local pharmacy and John went to pick up quickly thereafter. Once there, the trouble started. They couldn't find prescription; then they didn't have the prescription; then they were going to order prescription; only to come back and say "yes they have it. But is in the refrigeration compartment." Needless to say he was a little ticked off at the long, avoidable wait.

    Later that day, he called me from one of our favorite restaurants where he was joining a few friends for lunch. I answered the phone to his voice saying, "Al, there's something wrong. I think I'm having some kind of side effect from the appetite stimulant." I immediately asked if he had gotten the prescription warning/side effect page with the prescription. He said he hadn't as they were anxious to get him out of there due to all the confusion with the prescription.

    So I asked him what the name of the prescription was and I quickly googled, a bit frantic as he told me he had gone completely blank, lost total track of conversation, trouble with speech, etc.

    As my google screen brought results, I felt a bit of relief. The prescription name was Marinol. I told John, "you're stoned." Marinol is synthetic Marijuana.

    I can laugh about it now since he recovered and immediately stopped taking it. Personally, I thought he should continue taking it, but he very much disliked the LOST sense of control.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    alice124 said:

    Votrient / Marinol
    Thank you Bennette for the feedback, and I'm glad your mom is having none of the ill effects that we all worry about. Your mom's experience on Votrient so far pretty much is identical to John's experience. Let's keep our fingers crossed for them both.

    One thing I've learned from dealing with Cancer is I have for most of my life undervalued a good laugh. Given that they come less frequently these days, I'm learning to enjoy them while I can. So--since you mention appetite stimulants for your mom, let me share with you a story I recently experienced relating to John (my husband). Maybe they have two drugs in common.

    About a month ago with John's weight decreasing and my concern increasing over it, I encouraged John to call his oncologist and ask about an appetite stimulant, which he did. The Dr. called in a prescription to a local pharmacy and John went to pick up quickly thereafter. Once there, the trouble started. They couldn't find prescription; then they didn't have the prescription; then they were going to order prescription; only to come back and say "yes they have it. But is in the refrigeration compartment." Needless to say he was a little ticked off at the long, avoidable wait.

    Later that day, he called me from one of our favorite restaurants where he was joining a few friends for lunch. I answered the phone to his voice saying, "Al, there's something wrong. I think I'm having some kind of side effect from the appetite stimulant." I immediately asked if he had gotten the prescription warning/side effect page with the prescription. He said he hadn't as they were anxious to get him out of there due to all the confusion with the prescription.

    So I asked him what the name of the prescription was and I quickly googled, a bit frantic as he told me he had gone completely blank, lost total track of conversation, trouble with speech, etc.

    As my google screen brought results, I felt a bit of relief. The prescription name was Marinol. I told John, "you're stoned." Marinol is synthetic Marijuana.

    I can laugh about it now since he recovered and immediately stopped taking it. Personally, I thought he should continue taking it, but he very much disliked the LOST sense of control.

    Marinol
    I know how you can persuade him Alice! That lost sense of control could be just the job if he finds himself (as most golfers do, at one time or another) paying the price for 'steering the ball'. I shall look out for this medicine - I'm sure my round this morning would have gone far better if I'd been stoned.
  • Bennette
    Bennette Member Posts: 65
    alice124 said:

    Votrient / Marinol
    Thank you Bennette for the feedback, and I'm glad your mom is having none of the ill effects that we all worry about. Your mom's experience on Votrient so far pretty much is identical to John's experience. Let's keep our fingers crossed for them both.

    One thing I've learned from dealing with Cancer is I have for most of my life undervalued a good laugh. Given that they come less frequently these days, I'm learning to enjoy them while I can. So--since you mention appetite stimulants for your mom, let me share with you a story I recently experienced relating to John (my husband). Maybe they have two drugs in common.

    About a month ago with John's weight decreasing and my concern increasing over it, I encouraged John to call his oncologist and ask about an appetite stimulant, which he did. The Dr. called in a prescription to a local pharmacy and John went to pick up quickly thereafter. Once there, the trouble started. They couldn't find prescription; then they didn't have the prescription; then they were going to order prescription; only to come back and say "yes they have it. But is in the refrigeration compartment." Needless to say he was a little ticked off at the long, avoidable wait.

    Later that day, he called me from one of our favorite restaurants where he was joining a few friends for lunch. I answered the phone to his voice saying, "Al, there's something wrong. I think I'm having some kind of side effect from the appetite stimulant." I immediately asked if he had gotten the prescription warning/side effect page with the prescription. He said he hadn't as they were anxious to get him out of there due to all the confusion with the prescription.

    So I asked him what the name of the prescription was and I quickly googled, a bit frantic as he told me he had gone completely blank, lost total track of conversation, trouble with speech, etc.

    As my google screen brought results, I felt a bit of relief. The prescription name was Marinol. I told John, "you're stoned." Marinol is synthetic Marijuana.

    I can laugh about it now since he recovered and immediately stopped taking it. Personally, I thought he should continue taking it, but he very much disliked the LOST sense of control.

    Marinol
    Alice,

    Yes, my they put my mom on Marinol, but she is on the lowest dose 2.5mg and only started with it once a day at bedtime and then 5 days later they told me to give it to her 3 times a day, but did not increase the individual dose, she is still on the lowest per capsule. It is a pain that it has to be refrigerated, but ever since she started taking it 3 times a day she has been eating GREAT. She eats a whole meal for breakfast, lunch and dinner; plus snacks in between and her weight has been stable for two weeks. She hasn't complained of feeling "high" or anything, but she was/is on steriods too - I think they actually help balance each other out. I have heard that some people on steriods can barely sleep a full hour at a time, she doesn't have that problem and she can sit and read a book for quite a while before being compelled to move around. So for her it worked great. I was so distressed before because I couldn't get her to eat more than a bite or two for each meal after her surgery and she lost over 20 lbs in 2 1/2 weeks. So for her I consider it a miracle drug, she is eating like a normal human being now!

    If he still needs an appetite stimulant, maybe you should check into the dosage they were starting him off on, maybe it was too much for him? I am pretty inexperienced with this stuff, but learning fast!

    Bennette
  • alice124
    alice124 Member Posts: 896
    Bennette said:

    Marinol
    Alice,

    Yes, my they put my mom on Marinol, but she is on the lowest dose 2.5mg and only started with it once a day at bedtime and then 5 days later they told me to give it to her 3 times a day, but did not increase the individual dose, she is still on the lowest per capsule. It is a pain that it has to be refrigerated, but ever since she started taking it 3 times a day she has been eating GREAT. She eats a whole meal for breakfast, lunch and dinner; plus snacks in between and her weight has been stable for two weeks. She hasn't complained of feeling "high" or anything, but she was/is on steriods too - I think they actually help balance each other out. I have heard that some people on steriods can barely sleep a full hour at a time, she doesn't have that problem and she can sit and read a book for quite a while before being compelled to move around. So for her it worked great. I was so distressed before because I couldn't get her to eat more than a bite or two for each meal after her surgery and she lost over 20 lbs in 2 1/2 weeks. So for her I consider it a miracle drug, she is eating like a normal human being now!

    If he still needs an appetite stimulant, maybe you should check into the dosage they were starting him off on, maybe it was too much for him? I am pretty inexperienced with this stuff, but learning fast!

    Bennette

    Marinol
    This is one of many reasons this Board is so valuable. His reaction made me question Marinol's legitimacy, but your response absolutely confirms it does what it's supposed to do for most people. I'm going to go home now and check to see what dose he was on???

    20 pounds in 2 1/2 weeks is a lot of weight to lose. You're doing such a great job with your mom; keep up the good work.
    ___________________________
    P.S. Even though John's reaction to Marinol was NOT one he liked or continued, we've had a lot of laughs about his being stoned. You'd have to know him to appreciate his response. He is pretty straight laced (but incredibly funny), and to hear him talk about distorted visions and other oddities--AFTER THE FACT--is funny. My stepson called John during his reaction and then immediately called me to say his father was incoherent. That is so NOT John. But like I said, we have fun laughing about it now.
  • mrbill38
    mrbill38 Member Posts: 2
    alice124 said:

    Marinol
    This is one of many reasons this Board is so valuable. His reaction made me question Marinol's legitimacy, but your response absolutely confirms it does what it's supposed to do for most people. I'm going to go home now and check to see what dose he was on???

    20 pounds in 2 1/2 weeks is a lot of weight to lose. You're doing such a great job with your mom; keep up the good work.
    ___________________________
    P.S. Even though John's reaction to Marinol was NOT one he liked or continued, we've had a lot of laughs about his being stoned. You'd have to know him to appreciate his response. He is pretty straight laced (but incredibly funny), and to hear him talk about distorted visions and other oddities--AFTER THE FACT--is funny. My stepson called John during his reaction and then immediately called me to say his father was incoherent. That is so NOT John. But like I said, we have fun laughing about it now.

    Votrient.
    I have been on votrient for over one year (since Jan. 2011). This was after I had been on Nexavar for over one year. My side effects on votrient at first was nausea, exhaustion, diarea, and loss of apetite. After three months, the dosage was reduced by 50% and the test results were fantastic. My tomors had reduced by about 50% and at least one had disappeared.
    The last twelve months has been tolorable and have seemed to ease in side effects to the point that this year I've felt like doing some of the odd jobs around the house that I had let go. I walk every morning with my two four legged buddies and enjoy watching my garden grow. I do a one-hour program at a local assisted living home three times each month. So I feel almost normal most days. Other days I feel lousy, like yesterday. My Drs. are pleased with the results of using votrient to treat my cancer. I was first diagnosed in 1997. My wife, a wonderful caregiver, just walked with me at our latest cancer survivor relay a week ago. I'm 74 and plan to be around a long time. Bill Stephens.
  • Bennette
    Bennette Member Posts: 65
    alice124 said:

    Marinol
    This is one of many reasons this Board is so valuable. His reaction made me question Marinol's legitimacy, but your response absolutely confirms it does what it's supposed to do for most people. I'm going to go home now and check to see what dose he was on???

    20 pounds in 2 1/2 weeks is a lot of weight to lose. You're doing such a great job with your mom; keep up the good work.
    ___________________________
    P.S. Even though John's reaction to Marinol was NOT one he liked or continued, we've had a lot of laughs about his being stoned. You'd have to know him to appreciate his response. He is pretty straight laced (but incredibly funny), and to hear him talk about distorted visions and other oddities--AFTER THE FACT--is funny. My stepson called John during his reaction and then immediately called me to say his father was incoherent. That is so NOT John. But like I said, we have fun laughing about it now.

    Marinol
    We had plenty of fun joking about it too. You have to find something in all these meds, treatments, etc to laugh about or it gets way to serious all the time. I didn't think about this before, but pain meds make my mom goofy and confused. Since she is taking them for her spine mets, we probably won't have noticed any additional confusion! We already know she is thinking straight all the time! But sometimes, with everything happening so fast, I think it is better for her to be a little out of it - we take care of all the thinking for her until we can get into a better state and off some of the meds.
  • alice124
    alice124 Member Posts: 896
    mrbill38 said:

    Votrient.
    I have been on votrient for over one year (since Jan. 2011). This was after I had been on Nexavar for over one year. My side effects on votrient at first was nausea, exhaustion, diarea, and loss of apetite. After three months, the dosage was reduced by 50% and the test results were fantastic. My tomors had reduced by about 50% and at least one had disappeared.
    The last twelve months has been tolorable and have seemed to ease in side effects to the point that this year I've felt like doing some of the odd jobs around the house that I had let go. I walk every morning with my two four legged buddies and enjoy watching my garden grow. I do a one-hour program at a local assisted living home three times each month. So I feel almost normal most days. Other days I feel lousy, like yesterday. My Drs. are pleased with the results of using votrient to treat my cancer. I was first diagnosed in 1997. My wife, a wonderful caregiver, just walked with me at our latest cancer survivor relay a week ago. I'm 74 and plan to be around a long time. Bill Stephens.

    Votrient
    Thank you Bill for providing feedback. Not only is the feedback valuable but I find the sequence of treatment very interesting. Who knows maybe with enough note comparing we can identify the most successful sequences.

    May I ask your type of cancer and stage/grade?

    Sorry our introductions come under such lousy circumstance, but let's make the best of a bad situation. Sounds like you have a strong support group in both the two legged and four legged categories. Wonderful!
  • alice124
    alice124 Member Posts: 896
    Bennette said:

    Marinol
    We had plenty of fun joking about it too. You have to find something in all these meds, treatments, etc to laugh about or it gets way to serious all the time. I didn't think about this before, but pain meds make my mom goofy and confused. Since she is taking them for her spine mets, we probably won't have noticed any additional confusion! We already know she is thinking straight all the time! But sometimes, with everything happening so fast, I think it is better for her to be a little out of it - we take care of all the thinking for her until we can get into a better state and off some of the meds.

    Marinol
    Just wanted to let you know I did check John's dosage of the Marinol and it's .5. I read him your note about your mom's usage, and I think he may give it a second try at the lower dosage. It's good to compare notes.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    alice124 said:

    Marinol
    Just wanted to let you know I did check John's dosage of the Marinol and it's .5. I read him your note about your mom's usage, and I think he may give it a second try at the lower dosage. It's good to compare notes.

    Marinol
    It sure is - a spliffing idea Alice! :)
    Er, maybe I should have said spiffing.
    Seriously, I'm sure you'll have noticed some very valuable note-comparing going on on the listserv.
  • Bennette
    Bennette Member Posts: 65
    alice124 said:

    Marinol
    Just wanted to let you know I did check John's dosage of the Marinol and it's .5. I read him your note about your mom's usage, and I think he may give it a second try at the lower dosage. It's good to compare notes.

    Marinol
    Hopefully it will help him out.

    I am not a big drug proponent, so I pretty much always ask for the lowest dosage of things to see how that goes before increasing it. I also think the lower dose multiple times during the day helps spread it out. But she started eating much better after they switched her to 3 times a day and that has continued to keep her eating well daily!

    I hope it works for him too! I can't tell you how much stress went away when she started eating! I was more fearful of losing her to "wasting away" then I was of the cancer at that point.

    Best Wishes!
  • KJones1969
    KJones1969 Member Posts: 158
    Bennette said:

    Marinol
    Hopefully it will help him out.

    I am not a big drug proponent, so I pretty much always ask for the lowest dosage of things to see how that goes before increasing it. I also think the lower dose multiple times during the day helps spread it out. But she started eating much better after they switched her to 3 times a day and that has continued to keep her eating well daily!

    I hope it works for him too! I can't tell you how much stress went away when she started eating! I was more fearful of losing her to "wasting away" then I was of the cancer at that point.

    Best Wishes!

    Day 24 of Votrient
    Thank you for all of the feedback on the side effects or lack thereof of Votrient. My husband is at day 24 and his blood pressure is as close to normal or better than before he started it. Now they did up his bp medicine a few weeks earlier since Votrient usually makes it go up. The only side effect still so far has been tiredness. We were told it could turn his hair white, well it is getting grayer/whiter than before but not sure if it is the Votrient, age or me asking him all of the time if he is okay.

    We go back to Duke Friday for a 4 week check up with blood work and to see Dr. Harrison. Last visit his protein was high so hopefully it has gone down some. If this appointment is good we will start going every 4 weeks with the first scans since Votrient at 3 months so praying for great results.

    He has a great will power and will to live so praying this helps him.
  • alice124
    alice124 Member Posts: 896

    Day 24 of Votrient
    Thank you for all of the feedback on the side effects or lack thereof of Votrient. My husband is at day 24 and his blood pressure is as close to normal or better than before he started it. Now they did up his bp medicine a few weeks earlier since Votrient usually makes it go up. The only side effect still so far has been tiredness. We were told it could turn his hair white, well it is getting grayer/whiter than before but not sure if it is the Votrient, age or me asking him all of the time if he is okay.

    We go back to Duke Friday for a 4 week check up with blood work and to see Dr. Harrison. Last visit his protein was high so hopefully it has gone down some. If this appointment is good we will start going every 4 weeks with the first scans since Votrient at 3 months so praying for great results.

    He has a great will power and will to live so praying this helps him.

    Votrient
    Hope Friday goes well for you and your husband. And I'm glad nasty side effects have been kept at bay so far.

    To be honest, John continues to be on the weak side and gets tired easily. We go out but we usually don't stay out beyond a couple hours. I can't really blame it on the Votrient though, as he has not gained his strength since beginning the IL-2 treatment in January.

    Of course, the pain in his shoulder continues and his overall weight loss I believe contributes to his lack of strength, but today--for the first time in several weeks--he said the pain wasn't as bad (as he almost forgot to take his pain medication). Perhaps a good sign. His weekly blood work this past week also was better than it's been.

    You guys continue to be in my prayers. I'll be anxious to hear about your check up visit on Friday.