Votrient Side Effects

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  • alice124
    alice124 Member Posts: 896 Member
    GSRon said:

    My new friend

    OK, I am now one month on Votrient...  I have been real lucky as far as side effects go...  But the Diarrhea was starting to become a real pain... literally..  Plus the last couple of nights, I had issues right after taking my daily pills...  I was concerned that I would no longer be getting the full strength...  So, I took out the Imodium... took two pills, two hours later had a nice big dinner... two hours after dinner took my Votrient and went to sleep... Zero Diarrhea..!  Imodium is my new friend..!  So far, life is a lot better..!!  (as always, check with your Doc.. yadda yadda..).

    Ron

    Gum Bleeds / Mouth Sore

    Today—for the first time in 326 days—John (one putt) will not take his  Votrient pillls. Dr. Hammers  made the decision to pull him off  the medication (Votrient)  temporarily (3-7 days) to allow his mouth time to heal. He’s been experiencing gum bleeds and has a nasty mouth sore  that has been giving him trouble over the past week+. He also has a dentist appointment on Wednesday to see if the sore is actually an absess  and to rule out osteonecrosis  (ONJ). 

    He’s a little disappointed to interrupt his *record as he takes great pride in his continuous dosage.  (*According to  his research nurse he’s the only trial participant that hasn’t taken a break from Votrient/Pazopanib.) But he/we know how fortunate he has been up to this point. We’ll keep our fingers crossed that it is just a blip on the radar.

    Since there are a lot of newbies on the board, I've copied his history to date below.

     

    ************************************************************************

    John’s History at Johns Hopkins since diagnosis:

    10/14/11 – Diagnosed with Kidney cancer clear cell/grade 4/stage 4 – with sarcomatoid features and lung mets; also has soft tissue mass in shoulder area and pelvic area.

    Symptoms: weight loss followed by cough
    11/1/11 – Surgery for removal of right kidney (nephrectomy)

    Treatments to date:
    January & February 2012 -HDIL2 treatment/first round 14 doses/2nd round 10 doses;
    (discontinued after February 2012 as scan did not merit continuation)
    April 2012 – began monthly shots of Xgeva

    May 10, 2012 – began Nivolumab*/Votrient (800 mg) trial (*BMS936558/MDX 1106)

    6 week scan results

    6/20/2012–CT scan showed 31% reduction in tumor burden;
    8/1/2012–CT scan showed 42% reduction in tumor burdern  (11% additional):
    9/12/2012 – CT showed 46% reduction in tumor burden (4% additional);
    10/24/2012 - CT scan reflected stabilization;

    **scans  from this point will be at  12 week intervals

     

    12 week scan results

    1/16/2013 – CT reflected 51% reduction in tumor burden (5% additional);

  • angec
    angec Member Posts: 924 Member

    Your Mom

    So glad she's doing so well - next thing she'll be copying BDS's gym workouts!  Isn't it great that even with being on and off the Votrient and with reduced doses she's still benefiting anyway.  I think re-starting her on 200 mg makes some sense and if it goes OK he may want to get her back to 400 mg in due course.  The fact that she's regained six pounds is good too!

    Your analysis of my situation is, I believe, spot on.  Sore mouth and temporary loss of taste caused me to eat less and probably drink less too. Occasional slight diarrhoea won't have helped either.  I put the same question out on KIDNEY_ONC and got a rash - of replies!  It seems that it's a general experience to lose a noticeable amount of body mass on Votrient and also on the other TKIs.  I reckon it's usually due not to the drug itself but to the sort of side-effects we've discussed leading to a spell of under-nutrition which is welcome to some who are over-weight and come out the better for it but not so much to those of us who are lean and lose only muscle mass.

    The pain I'm having is from the ab wall tumour and I'm back to not being able to lie on my right side but I think I'm improving again.  CT at end of April will tell whether the Votrient is continuing to beat the tumour back.

    Certainly not golfing too much.  I'm off to our annual Winter League Dinner at one of my inland golf clubs tonight, where the course continues under snow (see my Expressions page for pics).  However, I was out on the links at Carnoustie this morning for one of the rare outings so far this year.  Had to scrape ice off cars.  Bitter wind and we managed 6 holes before the snow came on too heavy to continue.  We trudged in from the furthest corner of the Championship Course and as we did so the snow stopped and the sun came out!  Reached cars and opened trunks to stash clubs and the snow re-started, the wind blowing the snow into the trunk while loading.  Closed the trunk (with bags etc covered with snow) and the snow promptly stopped!!.  [Do you think Somebody is trying to tell me something?]Went into the Carnoustie Club for refreshments and came out into blazing sunshine.  Now it's a pleasant spring day, though very cold still and I don't trust it. 

    Best wishes to you, Mom, Jaden and Henry.

     

    Thanks TW!  It  is amazing

    Thanks TW!  It  is amazing that you remember names so well!  Have you taken a course in memory school?  How is the wife feeling? I hope she is doing better now and back too her old self.

    Sorry the snow ruined your day, but six rounds is good, especially for a brutal, cold and windy day! Mother Nature can be cruel at times, she could have at least let you finish!

    I wonder why you started to feel pain again.  Could it be that you are doing too much and your muscles are sore? In any case it is good you are improving again.  Any trials being done in your area for bms?  I hope you continue to feel better.

    I am not comfortable with mom on 200 mgs, I have not heard of anyone on that low a dose and she doesn't see her onc again  until the end of may.  Her pressure went up slightly.  We shall se how it goes.

    You take care and sending big hugs to you!

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

    Thanks TW!  It  is amazing

    Thanks TW!  It  is amazing that you remember names so well!  Have you taken a course in memory school?  How is the wife feeling? I hope she is doing better now and back too her old self.

    Sorry the snow ruined your day, but six rounds is good, especially for a brutal, cold and windy day! Mother Nature can be cruel at times, she could have at least let you finish!

    I wonder why you started to feel pain again.  Could it be that you are doing too much and your muscles are sore? In any case it is good you are improving again.  Any trials being done in your area for bms?  I hope you continue to feel better.

    I am not comfortable with mom on 200 mgs, I have not heard of anyone on that low a dose and she doesn't see her onc again  until the end of may.  Her pressure went up slightly.  We shall se how it goes.

    You take care and sending big hugs to you!

    Neutropenia
    saintmont has just posted this:

     


    Hi, being on Votrient for about 2 months having a week break due low white cell neutropenic. Still adjusting BP medication. I feel fine, will do blood test thursday if results okay will start tablets again. My oncologist think that i may have to go down to 600mg of Votrient.

    Do you have your actual figures for WBC and maybe also neutrophils and platelets that you could share with us for purposes of comparison? (I try to put some useful figures for myself into my blog, which is a convenient place to log them for future reference, both for others and for myself.)

    Glad to hear the BP agents are doing their job.  Votrient doesn't seem to be as dose-dependent as Votrient seems to be, so 600 mg may be all that's necessary for you - others seem to keep doing fine on still lower doses and with breaks.

     

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

    Thanks TW!  It  is amazing

    Thanks TW!  It  is amazing that you remember names so well!  Have you taken a course in memory school?  How is the wife feeling? I hope she is doing better now and back too her old self.

    Sorry the snow ruined your day, but six rounds is good, especially for a brutal, cold and windy day! Mother Nature can be cruel at times, she could have at least let you finish!

    I wonder why you started to feel pain again.  Could it be that you are doing too much and your muscles are sore? In any case it is good you are improving again.  Any trials being done in your area for bms?  I hope you continue to feel better.

    I am not comfortable with mom on 200 mgs, I have not heard of anyone on that low a dose and she doesn't see her onc again  until the end of may.  Her pressure went up slightly.  We shall se how it goes.

    You take care and sending big hugs to you!

    Neutropenia

    Duplicate

    Anyway, can now say that I posted here  to keep these posts (all on the same topic) together in one place.

     

  • moe1131
    moe1131 Member Posts: 8
    BDS said:

    Votrient Side Effects
    I have been on Votrient/Pazopnib since July 28, 2012. I have had minimal side sides but that’s me. My side effect include White hair (No big deal - It was heading in that direction anyway), change of taste and diarrhea (Not Fun). Since July, I have been fanatically going to the gym. I started out slow and have progressed. I now workout three to four times a week. My workout includes running three miles on a treadmill, swimming laps for thirdly minutes and lifting weights (About hour and a half total workout). I believe the exercise controls the fatigue associated with Votrient and may aid in its effectiveness(My opinion). In October I completed my first scans, all but two my tumors have shrunk significantly the two that did not are stable. My oncologist told me “Whatever you are doing keep on doing it”. I am a realist, I know Votrient is not going to cure me that I am in this for the long haul.

    votrient

    Thanks to all for all the great information  on the side effects regarding votrient.

    I'm to start the drug today,I have Leiomyosarcoma cancer of the smooth muscle,but

    the drug has had good results with other sarcomas, not just renal. I'm encouraged!

    I was glad to hear that working out helps.

  • moe1131
    moe1131 Member Posts: 8
    BDS said:

    Votrient Side Effects
    I have been on Votrient/Pazopnib since July 28, 2012. I have had minimal side sides but that’s me. My side effect include White hair (No big deal - It was heading in that direction anyway), change of taste and diarrhea (Not Fun). Since July, I have been fanatically going to the gym. I started out slow and have progressed. I now workout three to four times a week. My workout includes running three miles on a treadmill, swimming laps for thirdly minutes and lifting weights (About hour and a half total workout). I believe the exercise controls the fatigue associated with Votrient and may aid in its effectiveness(My opinion). In October I completed my first scans, all but two my tumors have shrunk significantly the two that did not are stable. My oncologist told me “Whatever you are doing keep on doing it”. I am a realist, I know Votrient is not going to cure me that I am in this for the long haul.

    votrient

    Thanks to all for all the great information  on the side effects regarding votrient.

    I'm to start the drug today,I have Leiomyosarcoma cancer of the smooth muscle,but

    the drug has had good results with other sarcomas, not just renal. I'm encouraged!

    I was glad to hear that working out helps.

  • saintmont
    saintmont Member Posts: 63

    Neutropenia

    Duplicate

    Anyway, can now say that I posted here  to keep these posts (all on the same topic) together in one place.

     

    Votrient side effect

    Hi my blood results were good, my white blood cell count was 145 up from the last 2 which 95 and 115.

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

    Votrient side effect

    Hi my blood results were good, my white blood cell count was 145 up from the last 2 which 95 and 115.

    Blood results

    Unless our respective countries use very different units, that's probably your platelet count?  If so, that's fine (and certainly better than mine) and I hope you're feeling correspondingly good. 

  • GSRon
    GSRon Member Posts: 1,303

    Blood results

    Unless our respective countries use very different units, that's probably your platelet count?  If so, that's fine (and certainly better than mine) and I hope you're feeling correspondingly good. 

    Update

    Hi All..!!  Time for an update on my Votrient experience.  After almost 5 weeks (800 mg),  I am now (temporarily I hope) off the drug..  My Liver Enzymes went up and so the Onc said take a one week break and re-check the blood work...  I hope to get back on Votrient tomorrow.... fingers crossed...  Onc said would reduce to 600 mg if my Liver tests come back improved...

    So, the sum of my side effects are...  erratic - high blood pressure..  I was on Metorprolol prior to Viotrient, and my heart doc increased the dosage in anticipation of what the Votrient would do (smart heart doc.!).  My blood pressure stabilized during week 2... not an issue...   I did have some slight headaches when my BP went up..

    White hair.. ho hum.. no big deal..

    Gout like pain in my left foot.. not sure if it made any difference, but I eliminated lemons in my water, and cut way back on any orange juice... the pain went away and never came back...

    Diarrhea - yes.. as stated earlier Imodium took care of that..!

    Tiredness.. I slept a lot...  Keep in mind I was / am working full time.. would sleep most of the weekends...

    Overall, not bad..!  nothing to worry about, except the Liver part...

    I did follow others suggestions here, and took my pills (800 mg) just before going to sleep.. never had any nausea that way.. Thanks to those that suggested that..!

    Be Well.!

    Ron

  • GSRon
    GSRon Member Posts: 1,303

    Blood results

    Unless our respective countries use very different units, that's probably your platelet count?  If so, that's fine (and certainly better than mine) and I hope you're feeling correspondingly good. 

    Update

    Hi All..!!  Time for an update on my Votrient experience.  After almost 5 weeks (800 mg),  I am now (temporarily I hope) off the drug..  My Liver Enzymes went up and so the Onc said take a one week break and re-check the blood work...  I hope to get back on Votrient tomorrow.... fingers crossed...  Onc said would reduce to 600 mg if my Liver tests come back improved...

    So, the sum of my side effects are...  erratic - high blood pressure..  I was on Metorprolol prior to Viotrient, and my heart doc increased the dosage in anticipation of what the Votrient would do (smart heart doc.!).  My blood pressure stabilized during week 2... not an issue...   I did have some slight headaches when my BP went up..

    White hair.. ho hum.. no big deal..

    Gout like pain in my left foot.. not sure if it made any difference, but I eliminated lemons in my water, and cut way back on any orange juice... the pain went away and never came back...

    Diarrhea - yes.. as stated earlier Imodium took care of that..!

    Tiredness.. I slept a lot...  Keep in mind I was / am working full time.. would sleep most of the weekends...

    Overall, not bad..!  nothing to worry about, except the Liver part...

    I did follow others suggestions here, and took my pills (800 mg) just before going to sleep.. never had any nausea that way.. Thanks to those that suggested that..!

    Be Well.!

    Ron

  • NanoSecond
    NanoSecond Member Posts: 653
    GSRon said:

    Update

    Hi All..!!  Time for an update on my Votrient experience.  After almost 5 weeks (800 mg),  I am now (temporarily I hope) off the drug..  My Liver Enzymes went up and so the Onc said take a one week break and re-check the blood work...  I hope to get back on Votrient tomorrow.... fingers crossed...  Onc said would reduce to 600 mg if my Liver tests come back improved...

    So, the sum of my side effects are...  erratic - high blood pressure..  I was on Metorprolol prior to Viotrient, and my heart doc increased the dosage in anticipation of what the Votrient would do (smart heart doc.!).  My blood pressure stabilized during week 2... not an issue...   I did have some slight headaches when my BP went up..

    White hair.. ho hum.. no big deal..

    Gout like pain in my left foot.. not sure if it made any difference, but I eliminated lemons in my water, and cut way back on any orange juice... the pain went away and never came back...

    Diarrhea - yes.. as stated earlier Imodium took care of that..!

    Tiredness.. I slept a lot...  Keep in mind I was / am working full time.. would sleep most of the weekends...

    Overall, not bad..!  nothing to worry about, except the Liver part...

    I did follow others suggestions here, and took my pills (800 mg) just before going to sleep.. never had any nausea that way.. Thanks to those that suggested that..!

    Be Well.!

    Ron

    Gout symptoms

    Hi Ron,

    I hope you can get back on your Votrient tomorrow.

    Just a thought about your "Gout-like" pain.

    I think you already are aware that fructose consumption can lead to excess uric acid being excreted from your liver. That, of course, can lead to Gout.

    Fructose gets metabolized very differently than glucose by the liver (and the rest of the body).

    Fructose occurs naturally in many fruits.  But that usually is not a problem if the whole fruit is eaten because they also contain lots and lots of fiber.  The fiber inside of the fruit mitigates many of the ill effects on the liver from consuming the fructose. 

    However, if that fiber is removed, as it is in most fruit juices, then it can become a real problem.  That is why eating whole fruit is good for you but drinking fruit juice is not.  In fact many fruit juices contain more sugar(s) than many soft drinks.

    So consuming sufficient fiber with fructose (as it is naturally packaged in with the whole fruit) usually mitigates the problem for the liver.  However, since you are also reporting elevated liver enzymes, it sounds like your liver just could not deal with it.

    Bottom line: try not to consume any excess sugar(s), especially fructose. But if you do, make sure you take it with a healthy dose of extra fiber and/or protein.

    Keep in mind that ordinary table sugar is made up of 50% fructose and 50% glucose.  High Fructose Corn Syrup (HFCS) is usually made up of 52% fructose - but in some formulations it can contain far more.

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

    Update

    Hi All..!!  Time for an update on my Votrient experience.  After almost 5 weeks (800 mg),  I am now (temporarily I hope) off the drug..  My Liver Enzymes went up and so the Onc said take a one week break and re-check the blood work...  I hope to get back on Votrient tomorrow.... fingers crossed...  Onc said would reduce to 600 mg if my Liver tests come back improved...

    So, the sum of my side effects are...  erratic - high blood pressure..  I was on Metorprolol prior to Viotrient, and my heart doc increased the dosage in anticipation of what the Votrient would do (smart heart doc.!).  My blood pressure stabilized during week 2... not an issue...   I did have some slight headaches when my BP went up..

    White hair.. ho hum.. no big deal..

    Gout like pain in my left foot.. not sure if it made any difference, but I eliminated lemons in my water, and cut way back on any orange juice... the pain went away and never came back...

    Diarrhea - yes.. as stated earlier Imodium took care of that..!

    Tiredness.. I slept a lot...  Keep in mind I was / am working full time.. would sleep most of the weekends...

    Overall, not bad..!  nothing to worry about, except the Liver part...

    I did follow others suggestions here, and took my pills (800 mg) just before going to sleep.. never had any nausea that way.. Thanks to those that suggested that..!

    Be Well.!

    Ron

    More news today

    Hi All..!  OK, I decided to add to my last post, because I think some discussion may be useful for others... I hope.   So, my blood test from 3 days ago revealed that indeed my Liver Enzymes are headed in the right direction, but my Onc wants me to wait a few more days and have another blood test to be sure...

    Here is the discussion points... all comments welcome for sure..

    So, I was initially told to get blood tests every two weeks.  However I balked a bit, and the Onc relented and said that it was likely OK to go four weeks.  We could all easily say that was MY mistake to wait to four (plus) weeks.  However we can also say that getting four full weeks on the Votrient may be more beneficial than possibly only getting two weeks at the full 800 mg dose.  The plan most likely is for me to go on to a 600 mg dose, starting the end of this week (after my next blood test).  I am still about 3 plus weeks away from my first scan after starting Votrient...

    My thinking, is that it was better to get the four weeks at full 800 mg strength than having to stop at 2 weeks and start on a reduced 600 mg dose...  Yes i have read that some (many..?) people respond well at 600 mg, but...??  

    Feel free to make comments... plus I hope this somehow helps others in some way...

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

    More news today

    Hi All..!  OK, I decided to add to my last post, because I think some discussion may be useful for others... I hope.   So, my blood test from 3 days ago revealed that indeed my Liver Enzymes are headed in the right direction, but my Onc wants me to wait a few more days and have another blood test to be sure...

    Here is the discussion points... all comments welcome for sure..

    So, I was initially told to get blood tests every two weeks.  However I balked a bit, and the Onc relented and said that it was likely OK to go four weeks.  We could all easily say that was MY mistake to wait to four (plus) weeks.  However we can also say that getting four full weeks on the Votrient may be more beneficial than possibly only getting two weeks at the full 800 mg dose.  The plan most likely is for me to go on to a 600 mg dose, starting the end of this week (after my next blood test).  I am still about 3 plus weeks away from my first scan after starting Votrient...

    My thinking, is that it was better to get the four weeks at full 800 mg strength than having to stop at 2 weeks and start on a reduced 600 mg dose...  Yes i have read that some (many..?) people respond well at 600 mg, but...??  

    Feel free to make comments... plus I hope this somehow helps others in some way...

    Votrient dosage

    Useful feedback Ron. 

    As I've noted elsewhere (you will want to keep up to speed there, too) practice in the expert centre where I'm treated is to check liver enzymes after a week and, assuming no signs of scary levels (meaning, e.g. screaming up into the hundreds for ALT) again in another 3 weeks, then monthly thereafter, with intervention only if necessary.  I'm nearing 6 months on 800 mg with levels normalising.  A fortnight ago my bilirubins level was in normal range and ALT 83 (normal range 5-55) and my Onc is comfortable with that.  (Of course I'm 70 so criteria are a little different re whether more likely to die with cancer than from it and I'm generally very fit and strong with the only annoying chronic side-effects being GI discomfort.)

    Votrient seems to be dramatically more dose-independent than, say, Sutent and there are folks doing fine on 200mg/day and even on 100 mg.   I think you shouldn't worry too much about being on a lower dose level, or taking breaks.  I would be happy to reduce my dose if my Onc felt it sensible, to make for greater abdominal comfort.  However, I doubt that she will.  With my extremely rare pathology and ultra-dismal prognosis I reckon she'll feel that if my next scan (Thursday next week) shows good results the philosophy should be 'Why rock the boat? Let's stay with the max dose and hope to keep on winning', if I'm prepared to endure the s-e's.

    What are your liver enzyme readings just now?  I'll update my blog here, on my CSN personal pages, after my next scan and then again, probably, after my following Onc review appointment.  It's useful to compare notes isn't it?

  • GSRon
    GSRon Member Posts: 1,303

    Votrient dosage

    Useful feedback Ron. 

    As I've noted elsewhere (you will want to keep up to speed there, too) practice in the expert centre where I'm treated is to check liver enzymes after a week and, assuming no signs of scary levels (meaning, e.g. screaming up into the hundreds for ALT) again in another 3 weeks, then monthly thereafter, with intervention only if necessary.  I'm nearing 6 months on 800 mg with levels normalising.  A fortnight ago my bilirubins level was in normal range and ALT 83 (normal range 5-55) and my Onc is comfortable with that.  (Of course I'm 70 so criteria are a little different re whether more likely to die with cancer than from it and I'm generally very fit and strong with the only annoying chronic side-effects being GI discomfort.)

    Votrient seems to be dramatically more dose-independent than, say, Sutent and there are folks doing fine on 200mg/day and even on 100 mg.   I think you shouldn't worry too much about being on a lower dose level, or taking breaks.  I would be happy to reduce my dose if my Onc felt it sensible, to make for greater abdominal comfort.  However, I doubt that she will.  With my extremely rare pathology and ultra-dismal prognosis I reckon she'll feel that if my next scan (Thursday next week) shows good results the philosophy should be 'Why rock the boat? Let's stay with the max dose and hope to keep on winning', if I'm prepared to endure the s-e's.

    What are your liver enzyme readings just now?  I'll update my blog here, on my CSN personal pages, after my next scan and then again, probably, after my following Onc review appointment.  It's useful to compare notes isn't it?

    Great Feedback

    Wedgie... thanks for the feed back.. but of course that leads me to yet more questions..  I wonder that "IF" people respond on a smaller dosage, might that extend the time that the drug works..??   Or perhaps the dosage has no effect on how long the drug works..??   I do see (like you) that some do fine on 100 mg a day... some on 200, etc...  And the big unknown is that by starting up with the 800 mg a day, perhaps that may help prevent more Mets from showing up.. or slowing them down as well...

    Yes questions with no good answers, I suspect.. but thanks for your info...   I do not have my test results in hand... but I am going to have more tests done the end of this week... I will ask to see the numbers then...

    Ron

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

    Great Feedback

    Wedgie... thanks for the feed back.. but of course that leads me to yet more questions..  I wonder that "IF" people respond on a smaller dosage, might that extend the time that the drug works..??   Or perhaps the dosage has no effect on how long the drug works..??   I do see (like you) that some do fine on 100 mg a day... some on 200, etc...  And the big unknown is that by starting up with the 800 mg a day, perhaps that may help prevent more Mets from showing up.. or slowing them down as well...

    Yes questions with no good answers, I suspect.. but thanks for your info...   I do not have my test results in hand... but I am going to have more tests done the end of this week... I will ask to see the numbers then...

    Ron

    Back On

    Hi All..!!  OK, so about 17 days ago, I was told to stop taking the Votrient 800 MG.. my Liver Enzymes were very high...  but have gone down near normal overall...    So, 2 days ago I am back on the Votrient at 600 MG.  We will see how I do...  Keep in mind I have yet to have any scans (just blood work) since starting the Votrient... and my Onc wants to put off the scans until the Votrient has a chance to work for me... just another feww weeks is my guess...

    So, what did I learn..?  First, some suppliments are NOT good for use with any drug that can elevate Liver Enzymes...!  No, I was not on any suppliments, but I know some folks are...  And I must give the caveat, we are all differnt... check with your Onc.. 

    Also, within about 2 days of being off the drug, I was pretty much back to being a normal person... more energy, the diarrhea stopped, etc...  Felt great to be off the drug, however we all know... that the Cancer inside is the real enemy...  I got a LOT done in the last two weeks... got my race bike almost ready to be raced next week..!  Yes..!!

    Now I am back on Votrient.. I was surprized that the side effects started to show back up literally over night..!  My blood pressure elevted, the headaches started, some nausea, and of course diarrhea and fatigue.  With the initial start up of the Votrient, it took about a week or so for all of these side effects to show up... yet this time within hours... and in addition to listed above, my skin tingles / itches which it did not do before... interesting...  My take is that the drug never totally left my body in the time off... and that may mean it was still working to some degree... I hope..!

    I am on B.P. meds, so that should be OK in a few days... but I thought there may be some value in my experience, for others...

    Be Well..!

    Ron

  • Ed Brabant
    Ed Brabant Member Posts: 61
    GSRon said:

    Back On

    Hi All..!!  OK, so about 17 days ago, I was told to stop taking the Votrient 800 MG.. my Liver Enzymes were very high...  but have gone down near normal overall...    So, 2 days ago I am back on the Votrient at 600 MG.  We will see how I do...  Keep in mind I have yet to have any scans (just blood work) since starting the Votrient... and my Onc wants to put off the scans until the Votrient has a chance to work for me... just another feww weeks is my guess...

    So, what did I learn..?  First, some suppliments are NOT good for use with any drug that can elevate Liver Enzymes...!  No, I was not on any suppliments, but I know some folks are...  And I must give the caveat, we are all differnt... check with your Onc.. 

    Also, within about 2 days of being off the drug, I was pretty much back to being a normal person... more energy, the diarrhea stopped, etc...  Felt great to be off the drug, however we all know... that the Cancer inside is the real enemy...  I got a LOT done in the last two weeks... got my race bike almost ready to be raced next week..!  Yes..!!

    Now I am back on Votrient.. I was surprized that the side effects started to show back up literally over night..!  My blood pressure elevted, the headaches started, some nausea, and of course diarrhea and fatigue.  With the initial start up of the Votrient, it took about a week or so for all of these side effects to show up... yet this time within hours... and in addition to listed above, my skin tingles / itches which it did not do before... interesting...  My take is that the drug never totally left my body in the time off... and that may mean it was still working to some degree... I hope..!

    I am on B.P. meds, so that should be OK in a few days... but I thought there may be some value in my experience, for others...

    Be Well..!

    Ron

    Votrient

     I was diagnosed with stage 4 RCC almost 3 years ago. I had my fight Kidney removed at Mass General on 11/7/10. I had 2 treatments of IL2. 2nd treatment was pretty rough. The scans after showed that the treatment wasn’t a home run but more of a double. For over a year there was less than 1mm of growth on any tumor each scan. Then last month one in my right lung grew 1cm. That was enough for the Doctor to say that I will be starting Votrient.

     I have been on Votrient for just about a month. First week was rough. The nausea really got to me. The Doctor gave me some medication for that and the acid reflux that I was experiencing. It felt like chest tightness and felt better when I drank water. Since the addition of the 2 meds I have been fine for the most part. Occasional diarrhea nothing that Imodium can’t stop. But the taste change is the worst. Nothing tastes right. I have a metal taste in my mouth.  

     I have been doing everything that I was doing before I was diagnosed with Cancer. Working full time. I bowl 25-30 games a week. Fish bass tournaments when the weather allows. So far so good. Losing a bit of weight 8 pounds this month. Mainly because nothing tastes right.

     I will have my first scan in 8 weeks. Can’t wait. Hopefully they are going to shrink

  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Votrient

     I was diagnosed with stage 4 RCC almost 3 years ago. I had my fight Kidney removed at Mass General on 11/7/10. I had 2 treatments of IL2. 2nd treatment was pretty rough. The scans after showed that the treatment wasn’t a home run but more of a double. For over a year there was less than 1mm of growth on any tumor each scan. Then last month one in my right lung grew 1cm. That was enough for the Doctor to say that I will be starting Votrient.

     I have been on Votrient for just about a month. First week was rough. The nausea really got to me. The Doctor gave me some medication for that and the acid reflux that I was experiencing. It felt like chest tightness and felt better when I drank water. Since the addition of the 2 meds I have been fine for the most part. Occasional diarrhea nothing that Imodium can’t stop. But the taste change is the worst. Nothing tastes right. I have a metal taste in my mouth.  

     I have been doing everything that I was doing before I was diagnosed with Cancer. Working full time. I bowl 25-30 games a week. Fish bass tournaments when the weather allows. So far so good. Losing a bit of weight 8 pounds this month. Mainly because nothing tastes right.

     I will have my first scan in 8 weeks. Can’t wait. Hopefully they are going to shrink

    Votrient

    Good stuff Ed - you found this thread and it seems as if you're going very well on Votrient.  One thing that can help with the taste is to avoid metal cutlery and even metal utensils as far as possible until your taste starts to return to normal.

    Good luck with the scan results - I had my second scan on Votrient a few hours ago, coming up to 6 months on it.  I'm playing golf tomorrow morning and may play two rounds.

  • kelbert
    kelbert Member Posts: 5
    Blood pressure

    Hello Everyone,

    I was just wondering if anyone on this thread has had a good response on Votrient without any known problems with high blood pressure?

    What would the symptoms of high blood pressure be? My Dad has been feeling really terrible over the last few days, describing feeling really really dizzy, which can come on all of a sudden, he says it feels like the worst hangover ever except without the enjoyment of having a drink! Thankyou.

    Kelly x

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

    Blood pressure

    Hello Everyone,

    I was just wondering if anyone on this thread has had a good response on Votrient without any known problems with high blood pressure?

    What would the symptoms of high blood pressure be? My Dad has been feeling really terrible over the last few days, describing feeling really really dizzy, which can come on all of a sudden, he says it feels like the worst hangover ever except without the enjoyment of having a drink! Thankyou.

    Kelly x

    BP

    Kelly, hypertension is known as "the silent killer" because you don't get symptoms that warn you of high blood pressure.  Why don't you ask his nurse/doc what his BP looks like in the recent readings.  You can check BP yourself very easily - digital blood pressure monitors for use at home don't cost much and that way you could keep a close eye on your Dad's BP any time you want (I take my own BP on a daily basis, at home).  

    Is your Dad on any BP meds?  If he's not, please find out what his BP is at the moment.  If it's unaffected by the Votrient, it's likely that the Votrient isn't working for him (it's a very good drug for a lot of people but not for everyone).  If it's not working then he'll want to get off it to save himself feeling rotten for no good reason and the sooner he switches to another drug the better.

    However, it may be that his BP is higher and the Votrient is working, so the sooner you can find out what his BP is the better.

  • alice124
    alice124 Member Posts: 896 Member
    GSRon said:

    Back On

    Hi All..!!  OK, so about 17 days ago, I was told to stop taking the Votrient 800 MG.. my Liver Enzymes were very high...  but have gone down near normal overall...    So, 2 days ago I am back on the Votrient at 600 MG.  We will see how I do...  Keep in mind I have yet to have any scans (just blood work) since starting the Votrient... and my Onc wants to put off the scans until the Votrient has a chance to work for me... just another feww weeks is my guess...

    So, what did I learn..?  First, some suppliments are NOT good for use with any drug that can elevate Liver Enzymes...!  No, I was not on any suppliments, but I know some folks are...  And I must give the caveat, we are all differnt... check with your Onc.. 

    Also, within about 2 days of being off the drug, I was pretty much back to being a normal person... more energy, the diarrhea stopped, etc...  Felt great to be off the drug, however we all know... that the Cancer inside is the real enemy...  I got a LOT done in the last two weeks... got my race bike almost ready to be raced next week..!  Yes..!!

    Now I am back on Votrient.. I was surprized that the side effects started to show back up literally over night..!  My blood pressure elevted, the headaches started, some nausea, and of course diarrhea and fatigue.  With the initial start up of the Votrient, it took about a week or so for all of these side effects to show up... yet this time within hours... and in addition to listed above, my skin tingles / itches which it did not do before... interesting...  My take is that the drug never totally left my body in the time off... and that may mean it was still working to some degree... I hope..!

    I am on B.P. meds, so that should be OK in a few days... but I thought there may be some value in my experience, for others...

    Be Well..!

    Ron

    Back on

    Hi Ron,

    Your experience--on and off Votrient--is interesting. John went off the Votrient a couple of weeks ago due to mouth sores and his research nurse told us the Votrient vacation would make him feel like a new person. But it didn't. There really was no discernible difference for him during his week off Votrient. Of course, John has'nt experienced high blood pressure from the Votrient which make many believe he is not benefitting from that part of the trial (Nivolumab/Votrient), and they may be right. It could be the Nivolumab that's doing the work on his tumors, but then again it could be the combo.

    Here's another tidbit for being your own health advocate no matter how many doctors are looking out for you. Just a week ago, John realized a mistake he was making. He has been taking prevacid/priolosec on a rotating basis after it was prescribed by his gastroenterologist years ago. He just learned Prilosec was a no-no so he's discopntinued its usage. Could taking it have compromised the Votrient? We don't know, but we'll see.

    Anyway, hope your return to Votrient is the magic bullet to get rid of the tumors. It does sound like the Votrient never left your system.