Votrient Side Effects

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  • alice124
    alice124 Member Posts: 896 Member
    bry4856 said:

    votrient
    This is my 3rd day on Votrient and the only side effect has been very tired, some nasurea
    Still having pain because of the tear on my rotaror cuff, causing a lot of extra stress.Still no word on help with co-pay for meds.

    torn rotator cuff
    Glad you are tolerating well so far. Did MRI confirm your pain is due to a torn rotator cuff?
  • angec
    angec Member Posts: 924

    Heart
    Angec I haven't heard of any heart issues and my hubs hasn't didn't have any while he was on it. Now with him being on Afinitor at a lower dose we are full prepared for the side effects he experienced on the higher dose. We have Mighty Mouthwash, a prescription cream for his arms and a prescription lotion for his face. I'm like you now, better to be overprepared than not at all.

    Kjones, my mom will actually
    Kjones, my mom will actually be the one taking either Votrient or the dreaded Sutent soon. She is 80 and was just wondering if anyone had issues with the heart before, thank you and I hope the affinitor works. If not maybe he can get into a trial or use Torisel or one of the others, there are so many out there and a new one being approved sometime in June or July of 2013 that is very promising with less side affects.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    alice124 said:

    torn rotator cuff
    Glad you are tolerating well so far. Did MRI confirm your pain is due to a torn rotator cuff?

    Chronotherapeutics
    I almost started a new thread on this topic but forebore doing so since what prompted it is specifically about Votrient. I came across this posting (on another forum) from almost two years ago:

    "My husband was taking Votrient before going to bed (at least 2 hours after eating) the tumors all shrunk. His side effects were diarreha and headache. His oncologist suggested he switch to the first thing in the morning to see if that would be better. His side effects all went away, but the drug stopped working and the tumors started to grow back. He switched back to the evening and the tumors are shrinking again."

    I've long believed that the importance of chronotherapeutics isn't accorded the attention it merits and this posting is the sort of item that reinforces my feeling.

    Has anyone here got any useful thoughts on the topic? Votrient should be taken in a "fasting" state - not within an hour before, or two hours after a meal. However, apart from the general point that, to keep it in an even state in the body, it should be taken at about the same time every day, there doesn't seem to be any 'official' guidance on the time of day that might be best for most people (we all vary so generalisations may be difficult to arrive at)?

    Ange, quickest way to update on my experience is to look at my blog - since then the main development is that I seem to be a bit sleepier and my BP is still at too high a level, despite doubling my hypertensive drug dose to max. I hope it's just a matter of time before the Votrient-induced hypertension is got under control.

    I am so glad you have a modus operandi with Dr. Motzer and your local onc. Do you have a recommendation for a first-line drug for your Mom now? Please say hi to both her and your pupil - I hope both he and you are doing OK - I still miss that lovely pic of the two of you!
  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Chronotherapeutics
    I almost started a new thread on this topic but forebore doing so since what prompted it is specifically about Votrient. I came across this posting (on another forum) from almost two years ago:

    "My husband was taking Votrient before going to bed (at least 2 hours after eating) the tumors all shrunk. His side effects were diarreha and headache. His oncologist suggested he switch to the first thing in the morning to see if that would be better. His side effects all went away, but the drug stopped working and the tumors started to grow back. He switched back to the evening and the tumors are shrinking again."

    I've long believed that the importance of chronotherapeutics isn't accorded the attention it merits and this posting is the sort of item that reinforces my feeling.

    Has anyone here got any useful thoughts on the topic? Votrient should be taken in a "fasting" state - not within an hour before, or two hours after a meal. However, apart from the general point that, to keep it in an even state in the body, it should be taken at about the same time every day, there doesn't seem to be any 'official' guidance on the time of day that might be best for most people (we all vary so generalisations may be difficult to arrive at)?

    Ange, quickest way to update on my experience is to look at my blog - since then the main development is that I seem to be a bit sleepier and my BP is still at too high a level, despite doubling my hypertensive drug dose to max. I hope it's just a matter of time before the Votrient-induced hypertension is got under control.

    I am so glad you have a modus operandi with Dr. Motzer and your local onc. Do you have a recommendation for a first-line drug for your Mom now? Please say hi to both her and your pupil - I hope both he and you are doing OK - I still miss that lovely pic of the two of you!

    Votrient effectiveness
    Rather than start a new thread :) I thought it would reach those interested if I posted the link below on this thread. It's a longish thread on Cancer Compass, covering many Stage 4 patients' experiences taking Votrient, over the last couple of years.

    http://www.cancercompass.com/message-board/message/all,50378,0.htm

    It makes cheering reading for those of us who are also stage 4 and on Votrient - there are many cases where there has been considerable success on this drug.
  • angec
    angec Member Posts: 924

    Votrient effectiveness
    Rather than start a new thread :) I thought it would reach those interested if I posted the link below on this thread. It's a longish thread on Cancer Compass, covering many Stage 4 patients' experiences taking Votrient, over the last couple of years.

    http://www.cancercompass.com/message-board/message/all,50378,0.htm

    It makes cheering reading for those of us who are also stage 4 and on Votrient - there are many cases where there has been considerable success on this drug.

    Votrient a go!
    Mom will start on Votrient as early as this Friday or the coming Monday. I was so surprised that the doc agreed to give it to her. Dr. M had said to prescribe whatever he feels comfortable writing but he felt that he wanted to try what Mom wanted. The question is this. He said to start right at 800 mgs. I am a bit worried about that since she does take blood pressure meds and insulin and is 80. I was trying to start a post about it on Acor to see if the famous Dr. Dutcher and others would weigh in, but alas that site doesn't like me. I can never navigate it without it crashing.

    Anyone have any thoughts?

    That was a wonderful thread TW. Sounds very promising indeed! Thanks for sharing!
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    angec said:

    Votrient a go!
    Mom will start on Votrient as early as this Friday or the coming Monday. I was so surprised that the doc agreed to give it to her. Dr. M had said to prescribe whatever he feels comfortable writing but he felt that he wanted to try what Mom wanted. The question is this. He said to start right at 800 mgs. I am a bit worried about that since she does take blood pressure meds and insulin and is 80. I was trying to start a post about it on Acor to see if the famous Dr. Dutcher and others would weigh in, but alas that site doesn't like me. I can never navigate it without it crashing.

    Anyone have any thoughts?

    That was a wonderful thread TW. Sounds very promising indeed! Thanks for sharing!

    Votrient for Mom
    Ange, if you really want to thank me, please put up that lovely mother and son pic again or, if Jaden is too shy, a pic of yourself that you're confident won't scare the mice!

    If Mom's BP is under satisfactory control now all that is likely to be necessary is to keep monitoring it and tweaking dosages if necessary. Dr. Motzer's inclination to go with what Mom fancies makes a lot of sense to me and I'm hopeful she'll do well on it.

    I'm glad you found that thread encouraging - I certainly did.

    Jan Dutcher receives universal praise on ACOR but she doesn't post there (so far as I've seen) - doubtless far too busy treating people, researching etc.

    What happens to crash your use of KIDNEY_ONC? Maybe I can help you sort it out?

    All the best to your whole Family.
  • angec
    angec Member Posts: 924

    Votrient for Mom
    Ange, if you really want to thank me, please put up that lovely mother and son pic again or, if Jaden is too shy, a pic of yourself that you're confident won't scare the mice!

    If Mom's BP is under satisfactory control now all that is likely to be necessary is to keep monitoring it and tweaking dosages if necessary. Dr. Motzer's inclination to go with what Mom fancies makes a lot of sense to me and I'm hopeful she'll do well on it.

    I'm glad you found that thread encouraging - I certainly did.

    Jan Dutcher receives universal praise on ACOR but she doesn't post there (so far as I've seen) - doubtless far too busy treating people, researching etc.

    What happens to crash your use of KIDNEY_ONC? Maybe I can help you sort it out?

    All the best to your whole Family.

    TW, everytime i go on the
    TW, everytime i go on the site and try to post something it takes me to the front page when i try to submit it. I wrote to them but no answer. So i stopped. I can read the other posts just fine though. Thank you.

    I will see what pic i can put back up. LOL

    Mom's onc told her to come back 4 weeks after starting the medicine and so i was thinking that was too long. I am pretty concerned about it. Shouldn't it be every two weeks? Everyone else seems to be checked that way on Votrient when they start, or maybe I am wrong? How often do you go TW, if you don't mind me asking? Well we have an appt. to see him on Januray 17th, but i would have felt better seeing him at the end of December. This whole things has me in knots, i am just the caregiver. :( We don't go back to Sloans unless we need to, we stay with her local onc right now.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    angec said:

    TW, everytime i go on the
    TW, everytime i go on the site and try to post something it takes me to the front page when i try to submit it. I wrote to them but no answer. So i stopped. I can read the other posts just fine though. Thank you.

    I will see what pic i can put back up. LOL

    Mom's onc told her to come back 4 weeks after starting the medicine and so i was thinking that was too long. I am pretty concerned about it. Shouldn't it be every two weeks? Everyone else seems to be checked that way on Votrient when they start, or maybe I am wrong? How often do you go TW, if you don't mind me asking? Well we have an appt. to see him on Januray 17th, but i would have felt better seeing him at the end of December. This whole things has me in knots, i am just the caregiver. :( We don't go back to Sloans unless we need to, we stay with her local onc right now.

    Check-ups
    Ange, yes, it was two-weekly visits to see my onc Angela :) but now it's to be only monthly :(

    I would have thought your Mom's onc might have wanted to see her a little sooner, the first time around but I guess he's confident his judgment makes sense. Obviously you'll get straight in touch with him meantime if there's anything coming up that bothers either of you but I trust there won't be.

    On ACOR, do you hit a problem if you hit "Reply" in the top right corner of an open message and then try to make a posting? If that works OK you may want to enter a new 'SUBJECT' line.
  • Siler
    Siler Member Posts: 3
    Corrientes
    I am to diag stage IV clear cell. I'm 24 days into my 800 mg per day regime of votrient. My side effects are mostly lack of energy. I have had a couple of limited nausea. Few headaches, but my big symptom has been the energy loss. God bless you.
  • KJones1969
    KJones1969 Member Posts: 158
    angec said:

    Votrient a go!
    Mom will start on Votrient as early as this Friday or the coming Monday. I was so surprised that the doc agreed to give it to her. Dr. M had said to prescribe whatever he feels comfortable writing but he felt that he wanted to try what Mom wanted. The question is this. He said to start right at 800 mgs. I am a bit worried about that since she does take blood pressure meds and insulin and is 80. I was trying to start a post about it on Acor to see if the famous Dr. Dutcher and others would weigh in, but alas that site doesn't like me. I can never navigate it without it crashing.

    Anyone have any thoughts?

    That was a wonderful thread TW. Sounds very promising indeed! Thanks for sharing!

    Great News Angec
    That is good that Dr. M is starting your mom on Votrient. My husband took it 5 1/2 months until it stopped working and really the only side effect he had was lack of energy. He has high bp and is a diabetic as well. I'll be praying for you guys that she responds well to it.

    Merry Christmas!
  • KJones1969
    KJones1969 Member Posts: 158
    angec said:

    Votrient a go!
    Mom will start on Votrient as early as this Friday or the coming Monday. I was so surprised that the doc agreed to give it to her. Dr. M had said to prescribe whatever he feels comfortable writing but he felt that he wanted to try what Mom wanted. The question is this. He said to start right at 800 mgs. I am a bit worried about that since she does take blood pressure meds and insulin and is 80. I was trying to start a post about it on Acor to see if the famous Dr. Dutcher and others would weigh in, but alas that site doesn't like me. I can never navigate it without it crashing.

    Anyone have any thoughts?

    That was a wonderful thread TW. Sounds very promising indeed! Thanks for sharing!

    Great News Angec
    That is good that Dr. M is starting your mom on Votrient. My husband took it 5 1/2 months until it stopped working and really the only side effect he had was lack of energy. He has high bp and is a diabetic as well. I'll be praying for you guys that she responds well to it.

    Merry Christmas!
  • angec
    angec Member Posts: 924
    Siler said:

    Corrientes
    I am to diag stage IV clear cell. I'm 24 days into my 800 mg per day regime of votrient. My side effects are mostly lack of energy. I have had a couple of limited nausea. Few headaches, but my big symptom has been the energy loss. God bless you.

    Thanks Kjones and siler, I
    Thanks Kjones and siler, I always feel good knowing others are in our corner! Thanks for information on the side affects. Hoping all goes well also. Still waiting for the medicines to arrive, will keep you posted!

    TW it doesn't let me do anything even when I hit reply I type the info in and the hit send and it goes to the front page. It doesn't like me! ;)
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    angec said:

    Thanks Kjones and siler, I
    Thanks Kjones and siler, I always feel good knowing others are in our corner! Thanks for information on the side affects. Hoping all goes well also. Still waiting for the medicines to arrive, will keep you posted!

    TW it doesn't let me do anything even when I hit reply I type the info in and the hit send and it goes to the front page. It doesn't like me! ;)

    Posting replies on KIDNEY_ONC
    Ange, I can't imagine we have our ACOR lists set up so differently that mine behaves and yours is errant in posting behaviour.

    For me what happens is this:- I respond to a post by hitting "Reply" in the top right corner of the post in question. That opens a fresh screen with the text box for my reply. Usually I hit "Quote original message" then delete all the irrelevancies, such as chains of postings and list messages, and then I type in my message. When it's ready, I hit "Send message" and this takes me to a new screen with the dialogue box empty but, at top left, a message in blue that says "Your message has been successfully posted to the KIDNEY_ONC list".

    After that I just use the back arrow on my browser to get back to the list on the Home Page. My new post may have already appeared when I refresh the Home Page, or it may not appear until a small time later.

    This all pre-supposes that you're on the KIDNEY_ONC Home Page to start with - I presume you are but please confirm.

    To start a new topic, it's simpler - just hit "Post New Message" in the right side-bar, type in your message and hit "Send Message". The sofware's response will be as above.

    I hope we can get you to have more success there because they're a more professionally informed crowd and could answer authoritatively more of the questions you want to ask about Mom than we are able to here.
  • Siler
    Siler Member Posts: 3
    Yes I have
    I've been taking Votrient for 24 days now. Side effects are basically minimal for me but do included brief episodes of the following:
    1. Loss of Energy
    2. Loss of taste
    3. Loss of Appetite
    4. Headaches
    6. Nauseua
    The effects are listed in order of frequecy, with energy loss being the most prevelent. But once again the energy loss is usually about six hours after my dose and doesn't last maybe an hour.
  • Moonsgirl
    Moonsgirl Member Posts: 1
    Siler said:

    Yes I have
    I've been taking Votrient for 24 days now. Side effects are basically minimal for me but do included brief episodes of the following:
    1. Loss of Energy
    2. Loss of taste
    3. Loss of Appetite
    4. Headaches
    6. Nauseua
    The effects are listed in order of frequecy, with energy loss being the most prevelent. But once again the energy loss is usually about six hours after my dose and doesn't last maybe an hour.

    My husband and the "last option"
    Hi Siler, my husband has stage 4 RCC, he had a left nephrectomy March 2011,as the main tumor was 10 cm it had already spread to nearby lymph nodes to an extent that they said they could not surgically remove them. Thus far he was on Sutent, cancer progressed, Torisel, cancer progressed,Inlyta, cancer doubled. Cancer is now in lungs, liver, legs basically systematic. I got a call on 12/10/12 that the DR was putting him on Votrient,because " I don't think it will change the outcome I am putting him on it more as a way to make him feel that I am still trying to slow this very aggressive cancer", when asked why Votrient he said he choose it for least side effects and it can help 20% of patients however he informed me that this man I love with every ounce of my soul who is only 53 " may live till Christmas, however he definitely won't be here by summer". I found this discussion and find some reports here to offer us a glimmer of hope, I will let you all know how it goes.
  • foxhd
    foxhd Member Posts: 3,181
    Moonsgirl said:

    My husband and the "last option"
    Hi Siler, my husband has stage 4 RCC, he had a left nephrectomy March 2011,as the main tumor was 10 cm it had already spread to nearby lymph nodes to an extent that they said they could not surgically remove them. Thus far he was on Sutent, cancer progressed, Torisel, cancer progressed,Inlyta, cancer doubled. Cancer is now in lungs, liver, legs basically systematic. I got a call on 12/10/12 that the DR was putting him on Votrient,because " I don't think it will change the outcome I am putting him on it more as a way to make him feel that I am still trying to slow this very aggressive cancer", when asked why Votrient he said he choose it for least side effects and it can help 20% of patients however he informed me that this man I love with every ounce of my soul who is only 53 " may live till Christmas, however he definitely won't be here by summer". I found this discussion and find some reports here to offer us a glimmer of hope, I will let you all know how it goes.

    not the last option
    Moonsgirl, please read back in my postings starting december 2011. I also had poor prognosis initially with mets in lungs, liver, nodes, and bones. But now I am strong, fit and full of piss and vinegar. (what the hell does that mean?) Are you at a larger cancer center? There are many here who have seen their fortune change after finding the proper hospital and Doctor. As Jimmy V says, "Don't ever give up."
  • CAPNMatt
    CAPNMatt Member Posts: 13
    foxhd said:

    not the last option
    Moonsgirl, please read back in my postings starting december 2011. I also had poor prognosis initially with mets in lungs, liver, nodes, and bones. But now I am strong, fit and full of piss and vinegar. (what the hell does that mean?) Are you at a larger cancer center? There are many here who have seen their fortune change after finding the proper hospital and Doctor. As Jimmy V says, "Don't ever give up."

    Last Option
    I agree with Fox. Mine has more of a Sarcoma feature so we are trying chemo. If you can find an mdx-1106 like Fox, that could also be an option. Good luck.
  • angec
    angec Member Posts: 924
    Moonsgirl said:

    My husband and the "last option"
    Hi Siler, my husband has stage 4 RCC, he had a left nephrectomy March 2011,as the main tumor was 10 cm it had already spread to nearby lymph nodes to an extent that they said they could not surgically remove them. Thus far he was on Sutent, cancer progressed, Torisel, cancer progressed,Inlyta, cancer doubled. Cancer is now in lungs, liver, legs basically systematic. I got a call on 12/10/12 that the DR was putting him on Votrient,because " I don't think it will change the outcome I am putting him on it more as a way to make him feel that I am still trying to slow this very aggressive cancer", when asked why Votrient he said he choose it for least side effects and it can help 20% of patients however he informed me that this man I love with every ounce of my soul who is only 53 " may live till Christmas, however he definitely won't be here by summer". I found this discussion and find some reports here to offer us a glimmer of hope, I will let you all know how it goes.

    Where are you located? Try
    Where are you located? Try to get in for a trial of sorts ASAP. If you post where you live someone in here I a sure will direct you further. Prayers for you and hubby, never give up!!
  • KJones1969
    KJones1969 Member Posts: 158
    Moonsgirl said:

    My husband and the "last option"
    Hi Siler, my husband has stage 4 RCC, he had a left nephrectomy March 2011,as the main tumor was 10 cm it had already spread to nearby lymph nodes to an extent that they said they could not surgically remove them. Thus far he was on Sutent, cancer progressed, Torisel, cancer progressed,Inlyta, cancer doubled. Cancer is now in lungs, liver, legs basically systematic. I got a call on 12/10/12 that the DR was putting him on Votrient,because " I don't think it will change the outcome I am putting him on it more as a way to make him feel that I am still trying to slow this very aggressive cancer", when asked why Votrient he said he choose it for least side effects and it can help 20% of patients however he informed me that this man I love with every ounce of my soul who is only 53 " may live till Christmas, however he definitely won't be here by summer". I found this discussion and find some reports here to offer us a glimmer of hope, I will let you all know how it goes.

    Options
    Hey Moonsgirl,

    Don't give up. My husband is on Afinitor and in January he will have scans to see how it is working. If it does like the doctor speculates and keeps affecting his bloodwork like it is he will come off of it. If you do not have an option for clinical trials look on lines at clinicaltrials.gov and see what trials are available at a cancer center. My husband is a patient at Duke and they have lots of clinical trials for different cancers but because he was on Votrient and it didn't work and now on Afinitor there are limited options. I did find one at Johns Hopkins and one at MUSC that look like the best option. I have talked with his doctor and will push for him to be in one of those trials.

    I know as a caregiver it seems grim and hard to fight but you have to fight it for him. My hubs has sarcomatoid features as well and is aggressive. He had a radical left nephrectomy in March of this year and started on Votrient. After 5 1/2 months it stopped working and he started on Afinitor shortly there after. After only 10-12 days he had to come off of the 10mg due to side effects. Now the 7.5 seems to not be as rough. His has spread to his lungs and there is now a small spot on his liver.

    Keep your head up, enjoy every minute you have together. Read what a lot of the regulars type on here. There are some great stories from people on here.

    Merry Christmas and Godspeed!
  • KJones1969
    KJones1969 Member Posts: 158
    Moonsgirl said:

    My husband and the "last option"
    Hi Siler, my husband has stage 4 RCC, he had a left nephrectomy March 2011,as the main tumor was 10 cm it had already spread to nearby lymph nodes to an extent that they said they could not surgically remove them. Thus far he was on Sutent, cancer progressed, Torisel, cancer progressed,Inlyta, cancer doubled. Cancer is now in lungs, liver, legs basically systematic. I got a call on 12/10/12 that the DR was putting him on Votrient,because " I don't think it will change the outcome I am putting him on it more as a way to make him feel that I am still trying to slow this very aggressive cancer", when asked why Votrient he said he choose it for least side effects and it can help 20% of patients however he informed me that this man I love with every ounce of my soul who is only 53 " may live till Christmas, however he definitely won't be here by summer". I found this discussion and find some reports here to offer us a glimmer of hope, I will let you all know how it goes.

    Inlyta
    Just realized I forgot to ask you how your husband did with Inlyta? In January they are talking about putting my husband on it, but I am still pushing for a clinical trial.