Votrient Side Effects

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

    tia vs seizure

    Sorry for the complications. No Tia's or tie's (transient ischemic attacks/transient ischemic episodes) is short duration vascular blood flow that is interupted in the brain. May be from blockage or bleeding or arteriol  spasm. The area of brain tissue supplied by this flow suffer anoxia and symptoms occur. If the blood flow is not quickly restored, permanent damage can occur. Usually considered a stroke or cerebral vascular accident. (cva). A seizure is from mis directed electrical signals. Often overloading the brain circuitry. Both can be treated medically and at times surgically. Seizures result from something creating the misfiring. With late onset seizures, you look for the cause. Maybe injury, tumor or similar pathology. Some drugs can create the misfiring and resultant seizures. The system is under great stress. Here is hoping that it is only a tempoary problem.

    S.E.'s

    Hi All..!  I am now only a few days on the Votrient... let the fun begin..!  So far not bad... today I have high blood pressure..  Just waiting to call the Dr to get some BP drugs..  Hope this is the worst of it.. we will see..!

    Be Well all..!

    Ron - I don't want a pickle.. jus wanna ride my motor sickle...

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

    S.E.'s

    Hi All..!  I am now only a few days on the Votrient... let the fun begin..!  So far not bad... today I have high blood pressure..  Just waiting to call the Dr to get some BP drugs..  Hope this is the worst of it.. we will see..!

    Be Well all..!

    Ron - I don't want a pickle.. jus wanna ride my motor sickle...

    Fluctuations

    Hi All..!  I forgot to ask.. my blood pressure goes up and down like crazy at times..  Is this unusual..?  I can tell my BP is high.. the headache and I can feel it in my chest...  Not sure what to make of it... Yes I will be calling my Cardio Doc in an hour when the office opens...

    Be Well...

    Ron

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

    Fluctuations

    Hi All..!  I forgot to ask.. my blood pressure goes up and down like crazy at times..  Is this unusual..?  I can tell my BP is high.. the headache and I can feel it in my chest...  Not sure what to make of it... Yes I will be calling my Cardio Doc in an hour when the office opens...

    Be Well...

    Ron

    BP fluctuation

    Ron, can you give some figures?  I have been asking your question for quite a while but don't have an expert to ask.  I'll be intrigued to hear what your cardiologist says (assuming he has a plausible answer).

    Does anyone know of a reputable manual or monograph on the subject costing less than 100 bucks?  I know of one comprehensive work but it's so expensive and, from a glance at the table of contents, I don't think it would necessarily even answer my key questions. Also it will be far behind the latest research findings.

    My BP fluctuates wildly, virtually all of the time, so the idea of assessing one's situation on the basis of a single reading appears to be arrant nonsense, unless I'm completely out of line (and you say you're the same as I).   My BP can easily shift 20 points in 5 minutes, sitting in the same position without doing anything meantime other than, possibly reading.  I have begun to suspect that 'taking one's blood pressure' is a spurious concept. Ambulant monitoring represents a move in the right direction although it won't, of course, explain fluctuations, merely, possibly, give some sense of the amount of fluctuation under varying conditions.

  • GSRon
    GSRon Member Posts: 1,303

    BP fluctuation

    Ron, can you give some figures?  I have been asking your question for quite a while but don't have an expert to ask.  I'll be intrigued to hear what your cardiologist says (assuming he has a plausible answer).

    Does anyone know of a reputable manual or monograph on the subject costing less than 100 bucks?  I know of one comprehensive work but it's so expensive and, from a glance at the table of contents, I don't think it would necessarily even answer my key questions. Also it will be far behind the latest research findings.

    My BP fluctuates wildly, virtually all of the time, so the idea of assessing one's situation on the basis of a single reading appears to be arrant nonsense, unless I'm completely out of line (and you say you're the same as I).   My BP can easily shift 20 points in 5 minutes, sitting in the same position without doing anything meantime other than, possibly reading.  I have begun to suspect that 'taking one's blood pressure' is a spurious concept. Ambulant monitoring represents a move in the right direction although it won't, of course, explain fluctuations, merely, possibly, give some sense of the amount of fluctuation under varying conditions.

    Tes, my BP is weird...  here are my last handful of readings from the last 2 days at different times during the day..

    146/90 156/92 142/99 156/94 132/89 143/94 148/95 150/90 136/88 149/81 139/81 165/101 145/91  133/88  The one I bolded was a tad scarey...

    Time for the Votrient for the day...

    Later...

    Ron

  • saintmont
    saintmont Member Posts: 63
    GSRon said:

    Tes, my BP is weird...  here are my last handful of readings from the last 2 days at different times during the day..

    146/90 156/92 142/99 156/94 132/89 143/94 148/95 150/90 136/88 149/81 139/81 165/101 145/91  133/88  The one I bolded was a tad scarey...

    Time for the Votrient for the day...

    Later...

    Ron

    Votrient side effect

    Hi , My BP increased from 130/80 to 160/99 after 3 weeks having a week break from votrient platlets way down. My thyroid has decreased function so now one tablets for that. Dr put me one a different BP tablet which is more suitable for one kidney. Also my creatinine level went 130 my DR thinks it was rampimil the BP tablet causing creatinine to go up. Having ultrasound tomorrow on my remaining kidney to check it out. And nuclear med gated heart to see how that is going.

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

    Votrient side effect

    Hi , My BP increased from 130/80 to 160/99 after 3 weeks having a week break from votrient platlets way down. My thyroid has decreased function so now one tablets for that. Dr put me one a different BP tablet which is more suitable for one kidney. Also my creatinine level went 130 my DR thinks it was rampimil the BP tablet causing creatinine to go up. Having ultrasound tomorrow on my remaining kidney to check it out. And nuclear med gated heart to see how that is going.

    BP etc

    How did the US scan go?  Are things more comfortable now that you're off the Ramipril?

  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    BP etc

    How did the US scan go?  Are things more comfortable now that you're off the Ramipril?

    Lisa_03

    55 lbs sure is a big loss!  What time of day is your boy-friend taking his Votrient and is he ensuring that he follows the instructions to only take it 2 hours after a meal and 1 hour before eating, so that it's taken on an empty stomach?  By the way, a lot of people do fine on a lower dose and that way can reduce the side-effects a lot.

  • Lisa_03
    Lisa_03 Member Posts: 2

    Lisa_03

    55 lbs sure is a big loss!  What time of day is your boy-friend taking his Votrient and is he ensuring that he follows the instructions to only take it 2 hours after a meal and 1 hour before eating, so that it's taken on an empty stomach?  By the way, a lot of people do fine on a lower dose and that way can reduce the side-effects a lot.

    Texas_Wedge

    Hi hon sorry am still learning the navigation here... 
    He is taking it around 7P.M Yes he is taking it 2 hours after a meal and one hour before eating anything... They just reduced the dose from 4 to 3 because of the side effects - Jan to be exact. They did another Scan in Jan and the tumors have grown and spread a little between Dec and Jan. He was taken off the meds several times, trying to allow him to recover from things and putting him on again. They said thats when the cancer grew. Because he was not consistantly taking the meds... 

  • brad's battle
    brad's battle Member Posts: 3
    Votrient side effects

    Hi. My name is Brad, and I am a 48 year old male from Illinois who has stage 4 renal cell carcinoma that was first diagnosed as kidney cancer in November of 2006, with removal of my left kidney the treatment at the time. My left adrenal gland and 17 lymph nodes were also removed at that time, and I was diagnosed with the recurrence in March of 2012. I began my Votrient tretment on April 19th of 2012, and have been on it for almost 11 months now continuously. There are some definite side effects that I have had to deal with, but I am glad to report that there has been no growth in any existing tumors, and no new growths of any kind. I am on the full 800 mg daily dose. I have had to go on blood pressure meds (Lisinopril and water pill), thyroid medicine, and was treated for an ulcer in the months since. I am currently also on carafate and prescription Prilosec for the stomach situation, and still have loose bowels from time to time, but the meds help a lot.

      My hair did turn totally white all over my body within a few months. One of my biggest issues has been some recurrent foot problems, such as possible calcium deposits and some aggrivation of pre-existing arthritis in my ankle and foot area, but overall the benefits of stopping the tumors (I have 6 of them in my right chest wall) have been a blessing. I go to Barnes in St. Louis for my treatment, and the folks at Siteman Cancer Center there are top-notch in my book. I am pleased with how thorough they have been while taking care of me. If I can be of assistance, get hold of me here or on Facebook by adding me...Brad McVey

  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Votrient side effects

    Hi. My name is Brad, and I am a 48 year old male from Illinois who has stage 4 renal cell carcinoma that was first diagnosed as kidney cancer in November of 2006, with removal of my left kidney the treatment at the time. My left adrenal gland and 17 lymph nodes were also removed at that time, and I was diagnosed with the recurrence in March of 2012. I began my Votrient tretment on April 19th of 2012, and have been on it for almost 11 months now continuously. There are some definite side effects that I have had to deal with, but I am glad to report that there has been no growth in any existing tumors, and no new growths of any kind. I am on the full 800 mg daily dose. I have had to go on blood pressure meds (Lisinopril and water pill), thyroid medicine, and was treated for an ulcer in the months since. I am currently also on carafate and prescription Prilosec for the stomach situation, and still have loose bowels from time to time, but the meds help a lot.

      My hair did turn totally white all over my body within a few months. One of my biggest issues has been some recurrent foot problems, such as possible calcium deposits and some aggrivation of pre-existing arthritis in my ankle and foot area, but overall the benefits of stopping the tumors (I have 6 of them in my right chest wall) have been a blessing. I go to Barnes in St. Louis for my treatment, and the folks at Siteman Cancer Center there are top-notch in my book. I am pleased with how thorough they have been while taking care of me. If I can be of assistance, get hold of me here or on Facebook by adding me...Brad McVey

    Managing side-effects

    Welcome here Brad and thanks for that detailed and interesting posting.  It is very encouraging for those of us following in your footsteps, or about to do so.  

    Votrient does seem to be an excellent treatment for most of us, doesn't it?  It seems to have dealt very well with the  mets you have and we'll all hope that it continues to do so and that you continue to manage the side-effects as well as you are doing - as you say, they're a small price to pay for the Votrient getting on with the job!

  • saintmont
    saintmont Member Posts: 63

    Managing side-effects

    Welcome here Brad and thanks for that detailed and interesting posting.  It is very encouraging for those of us following in your footsteps, or about to do so.  

    Votrient does seem to be an excellent treatment for most of us, doesn't it?  It seems to have dealt very well with the  mets you have and we'll all hope that it continues to do so and that you continue to manage the side-effects as well as you are doing - as you say, they're a small price to pay for the Votrient getting on with the job!

    Votrient side effect

    Hi Texas_wedge, my US was good and gated heart also good, just trying to get BP right. My recent blood test were good as well.

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

    Votrient side effect

    Hi Texas_wedge, my US was good and gated heart also good, just trying to get BP right. My recent blood test were good as well.

    Good to hear.  What BP meds are you on now and how are your BP figures looking?

  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Good to hear.  What BP meds are you on now and how are your BP figures looking?

    Votrient side-burns and ....

    This was the day when all the big threads got to the top - 'Recovering from radical nephrectomy', 'Sarcomatoid' and 'Votrient Side Effects'.  Being (I hope) a patient  Recovering from radical nephrectomy, with Sarcomatoid pathology, on Votrient, I was spoilt for choice about which thread to post this on but decided this was the best place to pose this question.

    For those on Votrient who have, like me, taken on the 'chemo-albino look', does it only affect your eyebrows and the hair on your head? For me, those parts are now snow-white but certain other haireas  are still sporting my original red-head's colour, though a little paler than when I was younger.

    Do you have the same experience, or do I have to expect that those hairs not on display are destined to turn a whiter shade of pale in due course?

    I have been accused of sometimes giving too much infomation so I decided to keep this posting short (and curly)!

  • garym
    garym Member Posts: 1,647

    Votrient side-burns and ....

    This was the day when all the big threads got to the top - 'Recovering from radical nephrectomy', 'Sarcomatoid' and 'Votrient Side Effects'.  Being (I hope) a patient  Recovering from radical nephrectomy, with Sarcomatoid pathology, on Votrient, I was spoilt for choice about which thread to post this on but decided this was the best place to pose this question.

    For those on Votrient who have, like me, taken on the 'chemo-albino look', does it only affect your eyebrows and the hair on your head? For me, those parts are now snow-white but certain other haireas  are still sporting my original red-head's colour, though a little paler than when I was younger.

    Do you have the same experience, or do I have to expect that those hairs not on display are destined to turn a whiter shade of pale in due course?

    I have been accused of sometimes giving too much infomation so I decided to keep this posting short (and curly)!

    Seriously???

    What fun we could have!!

    If it weren't for the censors you'd be leaving yourself grossly exposed. Embarassed

    I for one am happy you chose not to include pictures of the areas in question, that would be too much information.

    LOL

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

    Seriously???

    What fun we could have!!

    If it weren't for the censors you'd be leaving yourself grossly exposed. Embarassed

    I for one am happy you chose not to include pictures of the areas in question, that would be too much information.

    LOL

    Giving hostages to fortune

    How could I have guessed you'd pick up on this in a 'flash' Gary?  Had to be you!  After your al lewding to my radiologist's last scan report and her reference to my "usual bony appearances" I noticed you referring to me yesterday as a "prominent member" here and I've been dreading to think where you might go next. Undecided

  • one putt
    one putt Member Posts: 72

    Giving hostages to fortune

    How could I have guessed you'd pick up on this in a 'flash' Gary?  Had to be you!  After your al lewding to my radiologist's last scan report and her reference to my "usual bony appearances" I noticed you referring to me yesterday as a "prominent member" here and I've been dreading to think where you might go next. Undecided

    Whiter shade of pale

    Tex, Thanks for taking me back to my college years with your Procol Harum reference. As you know ,I have been on Votrient 800mg/day for over 10 months without skipping or reducing a dose. It wasn't until Feb. 6th that my research nurse commented on the fact that my hair had held out longer than most and was finally beginning to "lighten up".As concerns your other query,I will quote a phrase my grandmother used to let someone know that their slip was showing. It's snowing down south!

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    one putt said:

    Whiter shade of pale

    Tex, Thanks for taking me back to my college years with your Procol Harum reference. As you know ,I have been on Votrient 800mg/day for over 10 months without skipping or reducing a dose. It wasn't until Feb. 6th that my research nurse commented on the fact that my hair had held out longer than most and was finally beginning to "lighten up".As concerns your other query,I will quote a phrase my grandmother used to let someone know that their slip was showing. It's snowing down south!

    Procol Harum

    Did you know that those cool cats  are touring soon in Scandinavia and Germany?!  Has there ever been a group whose name has generated so much speculation as to its origin and such variants on the story - in their case, the pedigree cat origin? It was probably a Burmese but one might have wished it to have been a white cat!

    Here's hoping our drugs restore us to the form of those college days!  I'm doing OK, I think, on Votrient and Fox unbelievably well on nivolumab. Having both strings to your bow you can't fail to keep doing fine.

  • garym
    garym Member Posts: 1,647

    Giving hostages to fortune

    How could I have guessed you'd pick up on this in a 'flash' Gary?  Had to be you!  After your al lewding to my radiologist's last scan report and her reference to my "usual bony appearances" I noticed you referring to me yesterday as a "prominent member" here and I've been dreading to think where you might go next. Undecided

    The Flasher...

    Three old ladies are sitting on a park bench when a flasher comes by and opens his trench coat right in front of them.

    The first old lady has a stroke, the second old lady has a stroke, but the third old lady couldn't reach him.

  • angec
    angec Member Posts: 924 Member

    Procol Harum

    Did you know that those cool cats  are touring soon in Scandinavia and Germany?!  Has there ever been a group whose name has generated so much speculation as to its origin and such variants on the story - in their case, the pedigree cat origin? It was probably a Burmese but one might have wished it to have been a white cat!

    Here's hoping our drugs restore us to the form of those college days!  I'm doing OK, I think, on Votrient and Fox unbelievably well on nivolumab. Having both strings to your bow you can't fail to keep doing fine.

    Finally, I can exhale!

    GOOD NEWS!!  GOOD NEWS!  GOOD NEWS!  I dont' know how long this news will hold but i am going to live in the moment!  As you know mom 80, has stage 4 rcc. She has some nodes, lungs and duoden wall.  She started Votrient 400 mgs (had to decrease due to bp and headaches) on December 21, 2012. She has had to come off of it several times since then. She is off for two weeks now also. Here is the good news! Everything is shrinking.. .only one node in the stomach is more prominent and one note is slightly enlarged or stable in the lung area. But since the last scan she didn't start the meds for two months so it could have been from that period on.  I cannot tell you what a sigh of releif this is. My sister had the report last night and told me it was worse because she didn't understand it. I was up crying and crying all night because i didn't know how to tell mom, she endured like a trooper with the side affects for 6 weeks.  But today she reread it and things are going the way we hope. Let's pray they continue in that direction.  I am about to pass out with relief!  I am so glad to add to the string of good news that has been happening on these boards. I pray for those others that they get some relief as well.

     

    I AM GOING  TO HAVE A BEER! I HATE BEER!

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

    Finally, I can exhale!

    GOOD NEWS!!  GOOD NEWS!  GOOD NEWS!  I dont' know how long this news will hold but i am going to live in the moment!  As you know mom 80, has stage 4 rcc. She has some nodes, lungs and duoden wall.  She started Votrient 400 mgs (had to decrease due to bp and headaches) on December 21, 2012. She has had to come off of it several times since then. She is off for two weeks now also. Here is the good news! Everything is shrinking.. .only one node in the stomach is more prominent and one note is slightly enlarged or stable in the lung area. But since the last scan she didn't start the meds for two months so it could have been from that period on.  I cannot tell you what a sigh of releif this is. My sister had the report last night and told me it was worse because she didn't understand it. I was up crying and crying all night because i didn't know how to tell mom, she endured like a trooper with the side affects for 6 weeks.  But today she reread it and things are going the way we hope. Let's pray they continue in that direction.  I am about to pass out with relief!  I am so glad to add to the string of good news that has been happening on these boards. I pray for those others that they get some relief as well.

     

    I AM GOING  TO HAVE A BEER! I HATE BEER!

    Finally, I can exhale!

    Me too Ange.  It wasn't such a bad choice after all, was it?  Please pass on congratulations to your Mom for being such a trooper and geting such rewards.  It's also good news that she's got such results on such a low dose and with breaks too.  It augurs well for the future.