Votrient Side Effects

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  • angec
    angec Member Posts: 924 Member

    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.

    Thank you TW, I sure will

    Thank you TW, I sure will tell mom!  Her doctor i hope, will be pleased. He wanted her on Sutent. It is a big thanks to you also that Votrient was picked. Due to your research on the subject and when you made your final decision against Sutent for the time being, i knew it was the way to go!!  A little relief for now, i will take it.

    Hope you are feeling well and hoping your weight picks up. Mom has gained back about 6 pouns or so.  All my best to everyone on these boards. I pray for all of us daily!

     

    xxoo

  • alice124
    alice124 Member Posts: 896 Member
    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!

    Your mom

    Ange,

    I am so happy for you and your mom!!!!!!! YES!  I wish you were closer, and I'd happily buy you something stornger than beer or make you one of my frozen Margarita sensations in the Vitamix! What a super marathon we have going!   

    More of the same!!!!

     

    P.S. John too is gaining weight. He registered 185 yesterday. His research nurse said "It's obvious the cancer isn't feasting on food consumption as it once was."  (She was referring to his weight of 148 a year ago.) She advised he may have to begin to watch his caloric intake like any other normal male.  Music to the ears!

  • angec
    angec Member Posts: 924 Member
    alice124 said:

    Your mom

    Ange,

    I am so happy for you and your mom!!!!!!! YES!  I wish you were closer, and I'd happily buy you something stornger than beer or make you one of my frozen Margarita sensations in the Vitamix! What a super marathon we have going!   

    More of the same!!!!

     

    P.S. John too is gaining weight. He registered 185 yesterday. His research nurse said "It's obvious the cancer isn't feasting on food consumption as it once was."  (She was referring to his weight of 148 a year ago.) She advised he may have to begin to watch his caloric intake like any other normal male.  Music to the ears!

    Alice, thank you!  I should

    Alice, thank you!  I should would love that drink!  Fox recommends it as well!  a maybe some day we will all meet up!!

     

    That is great news about John.  That is quite a bit if weight to put back on, how exciting!  Need I ask if he has been dipping in the Marinol lately?  ;)  you can just call him your little fatty from now on, happily!  Keep up the good work John!!  Alice, praying for the good news to continue.

     

    anyone near from Paula?

  • angec
    angec Member Posts: 924 Member
    garym said:

    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.

    Garym...

    That joke is hysterical...took me a few up uses to get it!   Lol

     

  • garym
    garym Member Posts: 1,647
    angec said:

    Alice, thank you!  I should

    Alice, thank you!  I should would love that drink!  Fox recommends it as well!  a maybe some day we will all meet up!!

     

    That is great news about John.  That is quite a bit if weight to put back on, how exciting!  Need I ask if he has been dipping in the Marinol lately?  ;)  you can just call him your little fatty from now on, happily!  Keep up the good work John!!  Alice, praying for the good news to continue.

     

    anyone near from Paula?

    Paula...

    I've been wondering about Paula as well...I sent her a PM a couple weeks ago with no responce...hope and pray all is well

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

    Garym...

    That joke is hysterical...took me a few up uses to get it!   Lol

     

    Hair..

    OK, I will fess up... almost a month on Votrient.. well about 3 weeks now...  and the first sign of "whiteness" of hair is well.. below my incision... how is that..?  Only some white streaks on the side of my head.. and my beard was headed in that direction a long time ago...

    Whew..!!  I feel better now.. heh..

    Be Well All..

    Ron :)

  • alice124
    alice124 Member Posts: 896 Member
    angec said:

    Alice, thank you!  I should

    Alice, thank you!  I should would love that drink!  Fox recommends it as well!  a maybe some day we will all meet up!!

     

    That is great news about John.  That is quite a bit if weight to put back on, how exciting!  Need I ask if he has been dipping in the Marinol lately?  ;)  you can just call him your little fatty from now on, happily!  Keep up the good work John!!  Alice, praying for the good news to continue.

     

    anyone near from Paula?

    Paula

    Ange/Gary,

    Fox, Tex and I also have noted Paula's absence and tried to reach her via private email with no success. I hope and pray she's just taking a vacation from the Board.

    Gary, I saw that joke and thought you had brazenly posted it where you did in recognition Ange's mention of her mom's age. I was anxiously waiting for  the Ange's mom smackdown. She's a tough lady not an old lady! Foot in Mouth 

     

     

  • angec
    angec Member Posts: 924 Member
    alice124 said:

    Paula

    Ange/Gary,

    Fox, Tex and I also have noted Paula's absence and tried to reach her via private email with no success. I hope and pray she's just taking a vacation from the Board.

    Gary, I saw that joke and thought you had brazenly posted it where you did in recognition Ange's mention of her mom's age. I was anxiously waiting for  the Ange's mom smackdown. She's a tough lady not an old lady! Foot in Mouth 

     

     

    Tough for sure!!

    Alice, mom sure is one tough cookie....  I wish i was more like her!! The therapist (physical) recently told her she is a strong woman and she is.  She had a rough two months on Votrient but I know she feels it is worth it. Hopefully going forward her pressure will be better once she resumes treatment next week.  

     

    I too have email Paula, am very concerned. Don't even remember if she tried Votrient herself, i know she was a few.  I am so praying that she is ok :(  She is also a trooper and I know she will find the treatment that is going to work.  

     

    Gary, i shared that joke with mom and she laughed so hard i thought she needed oxygen!  By the way, i read the report and it seems that two spots have totally resolved as well, i didn't mention that on the other posts.  I had a good nights sleep last night!  :)

     

    Love to all and have a great weekend! Alice, still no answer on that Marinol.. I still vision John in that tutu holding a golf club.. but don't tell him! ;)

  • garym
    garym Member Posts: 1,647
    alice124 said:

    Paula

    Ange/Gary,

    Fox, Tex and I also have noted Paula's absence and tried to reach her via private email with no success. I hope and pray she's just taking a vacation from the Board.

    Gary, I saw that joke and thought you had brazenly posted it where you did in recognition Ange's mention of her mom's age. I was anxiously waiting for  the Ange's mom smackdown. She's a tough lady not an old lady! Foot in Mouth 

     

     

    Not at all...

    It was actually in reply to tex's "flash" comment, but somehow slipped farther down the thread.  At 80 years young with that fighting attitude Ang's mom doesn't qualify as "old" in my book, but any smackdown on her part would be cheerfully accepted.  BTW my mom was flashed once, she just laughed at the guy and asked if he had anything in an adult size.

  • beyza
    beyza Member Posts: 2
    hellooo from turkey

    hi everybody :) i m so happy for finding this site i m frm turkey and i couldnt find any site about votrient users in turkey . my dad began votrient about 10 days ago and his kidney was removed by surgery 10 years ago (2003 ) now he has 2 spots in liver and 1 spot another place .he feels little tired sometimes and his blood values re normal , just  his hemoglobin little high so doctor suggested us transfuse and we re so worry coz we dont know how to behave him :/  thankssssssssss :)

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

    hellooo from turkey

    hi everybody :) i m so happy for finding this site i m frm turkey and i couldnt find any site about votrient users in turkey . my dad began votrient about 10 days ago and his kidney was removed by surgery 10 years ago (2003 ) now he has 2 spots in liver and 1 spot another place .he feels little tired sometimes and his blood values re normal , just  his hemoglobin little high so doctor suggested us transfuse and we re so worry coz we dont know how to behave him :/  thankssssssssss :)

    Welcome beyza

    There are some important studies coming from Turkish universities about cancer, but you are the only Turk I can think of who has come to join us here.  What part are you from?  [I have travelled from Istanbul to Trabzon and Erzurum, Ankara, Bodrum, Kas, Antalya, Alanya, Perge, Side, Aspendos, Konya ...  and loved it all.  Good memories of magical places like Manavgat and Pamukkale.]

    Tell us more about your Dad and we will try to give you all the help we can.

  • beyza
    beyza Member Posts: 2

    Welcome beyza

    There are some important studies coming from Turkish universities about cancer, but you are the only Turk I can think of who has come to join us here.  What part are you from?  [I have travelled from Istanbul to Trabzon and Erzurum, Ankara, Bodrum, Kas, Antalya, Alanya, Perge, Side, Aspendos, Konya ...  and loved it all.  Good memories of magical places like Manavgat and Pamukkale.]

    Tell us more about your Dad and we will try to give you all the help we can.

    thankss

    thankss for ur good wishes texas_wedge ;) i live in kayseri it s near to ankara  , last  3 -4 hours  betwen ankara and kayseri . my dad is 63 and i said his kidney removed by surgery 10 years ago ( 2003 ) and he has some spots in liver but one of them is bigger than others and he has 2 spot in paraaortic area ( i dunno exactly where is of  body  )  these spots re metastas of  kidney parankim cancer as pathology results. and our doctor started 800 mg votrient treatment . he uses 2 capsule once a day . he gets it at 8 a.m but i m not sure it s right time or not  whic one is better ,   he must get  it night or morning ? ? i know that he must get it at the same time during treatment  duration but ....  he feels tired after starting votrient some times he feels cold , some times his face turns pale and bruising  but it last little , he s getting be normal  he cant go out for work so much . today is 10th day of votrient . and if you explain your experience about votrient , i ll be glad coz we dunno many thing and i belive that he ll recover it at the eariest .... thankssss so much for now :)

     

  • Iowaguy
    Iowaguy Member Posts: 2
    Votrient six month update

    Six months of Votrient, managable side effects, GI, hypertension (controlled with meds) and, alas white hair. Thankfully a friend who is a beautician has been keeping it colored for now. Next scan in April, praying fo good results.

  • saintmont
    saintmont Member Posts: 63

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

    Votrient side effect

    Hi Texas_wedge, Everything going okay BP still high just double the dose of prazosim to 2 MG still BP high, started off on the lowest dose so just tweaking it until we get it right.

    See my oncologist next week, I see her every month. Being playing lot of golf, sad thing is day light saving finishes next week so back to a once a week golfer.

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

    Votrient side effect

    Hi Texas_wedge, Everything going okay BP still high just double the dose of prazosim to 2 MG still BP high, started off on the lowest dose so just tweaking it until we get it right.

    See my oncologist next week, I see her every month. Being playing lot of golf, sad thing is day light saving finishes next week so back to a once a week golfer.

    Golf

    Glad to hear it's going well.  I'm also seiing my Onc next week and I too see her monthly. 

    Sad about the golf - of course - our clocks go forward this weekend, so for us it means more golf! However, unlike you, we have snow coming and going constantly at present.  In the last 24 hours we've oscillated between completely white and completely green. It snowed last night and this morning.  Totally white acouple of hours ago, the fairway my bedroom looks out on is now mostly green again. 

    UK weather - nearly as unpredictable as RCC!

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

    Votrient six month update

    Six months of Votrient, managable side effects, GI, hypertension (controlled with meds) and, alas white hair. Thankfully a friend who is a beautician has been keeping it colored for now. Next scan in April, praying fo good results.

    Update

    The general pattern with Votrient, it seems - a good drug with few troubling side-effects and manageable with meds for the important side-effects.

    I hope that soon the researchers wil be able to isolate the unlucky few for whom it doesn't work so well and determine whether they have anything in common that might explain everything more for everyone's benefit.

    I've just noticed I've at last been struck amidships on the hair front - soon I won't be able to prove that I once had very red hair! (Don't think I'll approach a beautician about that though.)

    Saddens me, but I guess in the grand scheme of things it shouldn't rank too highly - have to focus on the important matters - might get to play golf on Friday Laughing

  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Update

    The general pattern with Votrient, it seems - a good drug with few troubling side-effects and manageable with meds for the important side-effects.

    I hope that soon the researchers wil be able to isolate the unlucky few for whom it doesn't work so well and determine whether they have anything in common that might explain everything more for everyone's benefit.

    I've just noticed I've at last been struck amidships on the hair front - soon I won't be able to prove that I once had very red hair! (Don't think I'll approach a beautician about that though.)

    Saddens me, but I guess in the grand scheme of things it shouldn't rank too highly - have to focus on the important matters - might get to play golf on Friday Laughing

    Weight loss

    Have others had weight loss on Votrient?  I'm running nine or ten pounds down on where I've been for a very long time (and I've never carried any surplus).  I'm trying to ascertain whether that's due to stress, lack of exercise and not eating enough recently or to one of the drugs I'm on.  Of course, it could be due to BP meds which most of us need to control the elevated blood pressure if V. is working.

  • angec
    angec Member Posts: 924 Member

    Weight loss

    Have others had weight loss on Votrient?  I'm running nine or ten pounds down on where I've been for a very long time (and I've never carried any surplus).  I'm trying to ascertain whether that's due to stress, lack of exercise and not eating enough recently or to one of the drugs I'm on.  Of course, it could be due to BP meds which most of us need to control the elevated blood pressure if V. is working.

    TW, mom had lost 11 pounds in

    TW, mom had lost 11 pounds in two weeks due to the Votrient and also some by meds they out her on. It seems some Bp meds make the mouth dry like cotton and eating is not fun!  Also remember thatvyou had that sore in your mouth for a while and that made you eat less.  IncidentalLY mom met with her onc today and he liked the pet scan rEdits and said Votrient seems to be helping.  She has been off for three weeks and gained back six of these 11 pounds lost.  He wants her to start back tomorrow but he only wants her to take 200 mgs and see if her pressure is still high. I it suing sure I feel comfortable with that dose at all.  We shall see.

     

    You mentioned you were having pain. Sorry to hear it.  What area seems to be the cause?  Any explanations for it! Golfing too much?  

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

    TW, mom had lost 11 pounds in

    TW, mom had lost 11 pounds in two weeks due to the Votrient and also some by meds they out her on. It seems some Bp meds make the mouth dry like cotton and eating is not fun!  Also remember thatvyou had that sore in your mouth for a while and that made you eat less.  IncidentalLY mom met with her onc today and he liked the pet scan rEdits and said Votrient seems to be helping.  She has been off for three weeks and gained back six of these 11 pounds lost.  He wants her to start back tomorrow but he only wants her to take 200 mgs and see if her pressure is still high. I it suing sure I feel comfortable with that dose at all.  We shall see.

     

    You mentioned you were having pain. Sorry to hear it.  What area seems to be the cause?  Any explanations for it! Golfing too much?  

    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.

     

  • GSRon
    GSRon Member Posts: 1,303

    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.

     

    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