pazopanib side effects?

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  • ivfour
    ivfour Member Posts: 49

    Lung nodules gone
    Hi Ivfour. I am 51 year old male from India. I was diagnosed for RCC and I had radical nephrectomy done on my left kidney in May 2012. The size of my tumor was 16cm x 11cm x 10cm. The scan also showed some nodules/metastasis in lungs also,which are very small having uptake value 1.5 cm or so. The surgery was good and thereafter I am on Votrient 800 mg OD. I am having some tolerable side effects such as change in skin and hair color, slight increase in blood pressure, mild mouth ulcers etc. I am worried about my lung metastasis. You have mentioned that your tumor nodules in your right lung have gone. How are you and can you please further educate me in this matter. For how long can I be on Votrient without having major side effect issues. I have also been advised for HD IL2 by some other oncologist, since my all other parameters are good and according to them I can bear the brunt of IL2. Dear all, can somebody guide me in this matter.

    Votrient
    The plan has changed somewhat and now oncologist said since I have had such good results from votrient, he is looking at five years and then see what studies have shown. My second set of scans still showed NED. I am on 400mg but was off of it because of elevated liver enzymes that may have been caused by methotrexate for my rheumatoid arthritis. The other side effects are tolerable so I think I can stay on it until the side effects become too much. Have you had any follow up scans to see if it is working? I still can't believe the great reports and feel blessed ever day. Hope this information helps.
  • aditya_fighter
    aditya_fighter Member Posts: 20
    ivfour said:

    Votrient
    The plan has changed somewhat and now oncologist said since I have had such good results from votrient, he is looking at five years and then see what studies have shown. My second set of scans still showed NED. I am on 400mg but was off of it because of elevated liver enzymes that may have been caused by methotrexate for my rheumatoid arthritis. The other side effects are tolerable so I think I can stay on it until the side effects become too much. Have you had any follow up scans to see if it is working? I still can't believe the great reports and feel blessed ever day. Hope this information helps.

    Votrient
    Thanks a lot dear. It feels so good to hear that your scans showed NED. May good God continue to do so with you and all others. I have not got any scan done after I started Votrient. The first scan would be due in mid Sept i.e.after three months of being on Votrient 800 mg OD. Fingers crossed and praying hard. Aditya
  • aldiyana
    aldiyana Member Posts: 16

    Votrient
    Thanks a lot dear. It feels so good to hear that your scans showed NED. May good God continue to do so with you and all others. I have not got any scan done after I started Votrient. The first scan would be due in mid Sept i.e.after three months of being on Votrient 800 mg OD. Fingers crossed and praying hard. Aditya

    scared for husband!
    my husband was diagnozed with collecting duct cacinoma on his kidney which now mets to his lungs a few weeks ago...they took out his left kidney and the tumor that was attached to it about 2 months ago...he should be starting VOTRIENT soon...to get rid of the mets...anyone useing this drug? and how is it going?

    i would also appriciate any other ALLTERNATIVE ways that anyone has tried. herbs, teas ect...to help things along...we are scared and willing to do everything and anything to save him...

    hes 27 im 24 and weve been married 4 years (our 4 year annivarsary is no on aug 16th)we have two little girls one is 2 and half years and the other 9 months...

    every comment, suggestion, addvice or prayer is SO SO SO MUCH APPRICIATED...

    lots of love and strenght x0x0
  • ivfour
    ivfour Member Posts: 49
    aldiyana said:

    scared for husband!
    my husband was diagnozed with collecting duct cacinoma on his kidney which now mets to his lungs a few weeks ago...they took out his left kidney and the tumor that was attached to it about 2 months ago...he should be starting VOTRIENT soon...to get rid of the mets...anyone useing this drug? and how is it going?

    i would also appriciate any other ALLTERNATIVE ways that anyone has tried. herbs, teas ect...to help things along...we are scared and willing to do everything and anything to save him...

    hes 27 im 24 and weve been married 4 years (our 4 year annivarsary is no on aug 16th)we have two little girls one is 2 and half years and the other 9 months...

    every comment, suggestion, addvice or prayer is SO SO SO MUCH APPRICIATED...

    lots of love and strenght x0x0

    Lung mets
    I have been on the votrient for about one year now and have had 2 sets of negative scans with the lung mets no longer present. I was only able to tolerate the 800mg for a couple of months and have been on 400mg (2tablets) for most of the time. I have been very lucky that the votirient by itself has been so good. I pray that your husband has the same success. I am 52 and the cancer was sta iv when found by accident after a serious motorcycle accident. God bless.
  • aldiyana
    aldiyana Member Posts: 16
    ivfour said:

    Lung mets
    I have been on the votrient for about one year now and have had 2 sets of negative scans with the lung mets no longer present. I was only able to tolerate the 800mg for a couple of months and have been on 400mg (2tablets) for most of the time. I have been very lucky that the votirient by itself has been so good. I pray that your husband has the same success. I am 52 and the cancer was sta iv when found by accident after a serious motorcycle accident. God bless.

    ivfour
    i am so glad to hear that VOTRIENT has worked so well for you...and wish you further health and success in the future! i hope my husband has the same effect...

    i read that you also had a persistant cough? so does my husband the cough went away for about 2 weeks after the surgery after they took out his kdiney and tumor...and now is back...its not always present when he sleeps he doesnt cough, the cough never wakes him up...when he doesnt talk and rests he usally coughs once or twice...but if he talks more he brakes out in a fit of coughs...other then the cough he has no syptoms...only for the last 7 days he had a tempreture up to 38-39...hes in hospital for that now but its a lot better now he only gets the temperature in the late afternoon and once he gets a shot for the temp. it goes away...

    hes 27 years old...so im hopeing that that is an advantage for him...as see so many eldarly people have fought this off...i pray to god that he wins this aswell...

    thank you yet again for commenting...

    god bless you and i wish you lots of strength and health...
  • aditya_fighter
    aditya_fighter Member Posts: 20
    aldiyana said:

    ivfour
    i am so glad to hear that VOTRIENT has worked so well for you...and wish you further health and success in the future! i hope my husband has the same effect...

    i read that you also had a persistant cough? so does my husband the cough went away for about 2 weeks after the surgery after they took out his kdiney and tumor...and now is back...its not always present when he sleeps he doesnt cough, the cough never wakes him up...when he doesnt talk and rests he usally coughs once or twice...but if he talks more he brakes out in a fit of coughs...other then the cough he has no syptoms...only for the last 7 days he had a tempreture up to 38-39...hes in hospital for that now but its a lot better now he only gets the temperature in the late afternoon and once he gets a shot for the temp. it goes away...

    hes 27 years old...so im hopeing that that is an advantage for him...as see so many eldarly people have fought this off...i pray to god that he wins this aswell...

    thank you yet again for commenting...

    god bless you and i wish you lots of strength and health...

    Aldiyana
    I am deeply touched by your story. I am also on Votrient but can not comment on the same, because it is only two months since I am on it. In my case it would be known only after my first post surgery scan and that would be in mid Sept. I will keep everyone posted. However, there are lot of success stories on this site. Please draw deep inspiration and strength from these successes.
    Believe in God,pray hard. All will be well.
    Aditya
  • aldiyana
    aldiyana Member Posts: 16

    Aldiyana
    I am deeply touched by your story. I am also on Votrient but can not comment on the same, because it is only two months since I am on it. In my case it would be known only after my first post surgery scan and that would be in mid Sept. I will keep everyone posted. However, there are lot of success stories on this site. Please draw deep inspiration and strength from these successes.
    Believe in God,pray hard. All will be well.
    Aditya

    update...
    i thought i would post an update of my husbands progress hes starting votrient as of today...weve been waiting for this for 9 months now and finally the day has come...hes doing alright...his apetite is low and he has pain in his lower back and stomach which shoots to his left leg and also has pain where his kidney used to be...he has lost a lot of weight but is fighting it as best he can...just so hard to watch him and not being able to help him...i hope that VOTRIENT is the answer....

    i pray night and day and believe that God will help anyone who truelly believes in him and believes that he can cure all diseases...just have faith and pray pray pray! everything in life is a test...some just get more tough ones the others...
  • angec
    angec Member Posts: 924
    aldiyana said:

    update...
    i thought i would post an update of my husbands progress hes starting votrient as of today...weve been waiting for this for 9 months now and finally the day has come...hes doing alright...his apetite is low and he has pain in his lower back and stomach which shoots to his left leg and also has pain where his kidney used to be...he has lost a lot of weight but is fighting it as best he can...just so hard to watch him and not being able to help him...i hope that VOTRIENT is the answer....

    i pray night and day and believe that God will help anyone who truelly believes in him and believes that he can cure all diseases...just have faith and pray pray pray! everything in life is a test...some just get more tough ones the others...

    How is everyone doing on
    How is everyone doing on Votrient? Any updates?
  • Pink Sugar
    Pink Sugar Member Posts: 1
    Pazopanib trial

    Hi Jim,

    I am the clinical trial you mention. I had a nephrectomy last June and started on the trial in September. The decision was a bit of a no brainer for me. I came to the conclusion that if the RCC ever comes back, I want to know I did everthing possible to prevent it. I have just had my week 16 check up and have had to stop the drug for a week due to side effects.

    I started on 600mg daily for 2 months. I developed Nausae,diarrohea, sore mouth and altered taste. hand and foot redness and very sore finger tips, and my hair is growing through white, I increased to 800mg but as side effects did not reduce had to go back to 600mg. I take drugs for the blood pressure, but most of the other sympyoms have abated. The main one that still longers is diarrohea. My apetite is back, thy slaon and get my eye lashes and eyebrows dyed. I e hand foot thing has gone, my mouth is back to normal although the taste is still  not great.

    Yes, I lost weight, feel the fatigue lol but what a great excuse for a cat nap! I guess I am just slower than normal...

    I still work.

    I would not want to influence your decision, I meet other people on the trial, (all men) and none of them have had severe side effects, in fact most of them talk about very few and quickly passing ones. The only thing we all have in common is that we all have white hair. Luckily for me, I visit the beauty therapist and get the lashes and eyebrows dyed. The rest I wuite like. 

    When you are reading the incidence of side effects you must bear in mind that anything anyone reports gets noted as a possible side effect. If one person dies of a stroke, it has to go onto the statistics, even if it ended up being proven as an related event.

    You get really closely monitored and no doctpr is going to allow you to keep taking a drug if it is doing you more harm than good.

    However, only you can decide what is best for you. I wish you well, good luck!

     

  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Pazopanib trial

    Hi Jim,

    I am the clinical trial you mention. I had a nephrectomy last June and started on the trial in September. The decision was a bit of a no brainer for me. I came to the conclusion that if the RCC ever comes back, I want to know I did everthing possible to prevent it. I have just had my week 16 check up and have had to stop the drug for a week due to side effects.

    I started on 600mg daily for 2 months. I developed Nausae,diarrohea, sore mouth and altered taste. hand and foot redness and very sore finger tips, and my hair is growing through white, I increased to 800mg but as side effects did not reduce had to go back to 600mg. I take drugs for the blood pressure, but most of the other sympyoms have abated. The main one that still longers is diarrohea. My apetite is back, thy slaon and get my eye lashes and eyebrows dyed. I e hand foot thing has gone, my mouth is back to normal although the taste is still  not great.

    Yes, I lost weight, feel the fatigue lol but what a great excuse for a cat nap! I guess I am just slower than normal...

    I still work.

    I would not want to influence your decision, I meet other people on the trial, (all men) and none of them have had severe side effects, in fact most of them talk about very few and quickly passing ones. The only thing we all have in common is that we all have white hair. Luckily for me, I visit the beauty therapist and get the lashes and eyebrows dyed. The rest I wuite like. 

    When you are reading the incidence of side effects you must bear in mind that anything anyone reports gets noted as a possible side effect. If one person dies of a stroke, it has to go onto the statistics, even if it ended up being proven as an related event.

    You get really closely monitored and no doctpr is going to allow you to keep taking a drug if it is doing you more harm than good.

    However, only you can decide what is best for you. I wish you well, good luck!

     

    Votrient side-effects

    Pink Sugar, you replied here to jimran but you'll see that his post was more than a year ago and he never came back. 

    Although this thread was started first, under the generic name of the drug (pazopanib), since then someone has started a thread under the trade name - Votrient - and most of the discussion about it has gone on there, so I'll reply to you on that thread.

  • todd121
    todd121 Member Posts: 1,448
    Your quote of 35-50% recurrence for stage 3 may not be accurate

    I was given a similar number, but my most recent oncologist used an online tool at Sloan Kettering to calculate my chances of recurrence, and the number came back substantially smaller. This made me think again about doing one of the clinical trials.

    Anyone interested in this tool, google for Memorial Sloan-Kettering Cancer Center Renal Cell Carcinoma Nomogram Post-Surgery and you should find it.

    You enter the histology, symptoms, pathology and tumor size, and it outputs a percentage for 5 year non-progression of disease. There are also links to papers that explain how it was developed.

    Todd

  • GSRon
    GSRon Member Posts: 1,303
    todd121 said:

    Your quote of 35-50% recurrence for stage 3 may not be accurate

    I was given a similar number, but my most recent oncologist used an online tool at Sloan Kettering to calculate my chances of recurrence, and the number came back substantially smaller. This made me think again about doing one of the clinical trials.

    Anyone interested in this tool, google for Memorial Sloan-Kettering Cancer Center Renal Cell Carcinoma Nomogram Post-Surgery and you should find it.

    You enter the histology, symptoms, pathology and tumor size, and it outputs a percentage for 5 year non-progression of disease. There are also links to papers that explain how it was developed.

    Todd

    Newbie here

    Hi All.. I am a newbie as you likely can tell.  I had sugery last March, 2012 for late stage 3 RCC.   I got checked every 90 days, my first check up was clear, but my check up last fall showed some spots in both lungs... today I found out those spots are bigger...  Soon I am to start on Votrient.

    I appreciate your comments, and the positive results..!    Not sure what else to say.. I am way to new to even know what questions to ask...

    Ron

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

    Newbie here

    Hi All.. I am a newbie as you likely can tell.  I had sugery last March, 2012 for late stage 3 RCC.   I got checked every 90 days, my first check up was clear, but my check up last fall showed some spots in both lungs... today I found out those spots are bigger...  Soon I am to start on Votrient.

    I appreciate your comments, and the positive results..!    Not sure what else to say.. I am way to new to even know what questions to ask...

    Ron

    Welcome to the club...

    Hi Ron,

    Nice to meet you, sorry it had to be because of RCC though.  There are several members here that are taking Votriient and I'm sure you'll here from some of them.  In the meantime you should read the various Votrient related threads like this one, much can be learned from the experiences of others.

    Hang in there,

    Gary

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

    Welcome to the club...

    Hi Ron,

    Nice to meet you, sorry it had to be because of RCC though.  There are several members here that are taking Votriient and I'm sure you'll here from some of them.  In the meantime you should read the various Votrient related threads like this one, much can be learned from the experiences of others.

    Hang in there,

    Gary

    Gary

    Hi Gary..!  Thanks... wish I was not a member of this club.. but then, I am sure all of us feel the same...  Better living through drugs..

    Ron - Monterey, Ca.

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

    Gary

    Hi Gary..!  Thanks... wish I was not a member of this club.. but then, I am sure all of us feel the same...  Better living through drugs..

    Ron - Monterey, Ca.

    Votrient/pazopanib side-effects

    Ron, you may wish to consider posting on the Votrient thread instead - it's more active and there's quite a bit of material there you may find useful.

  • Lisa_03
    Lisa_03 Member Posts: 2
    Votrient help needed! ASAP

    Hi guys. My boyfriend of 14 years was diagnosed with RCC on Nov 30,2012.  They put him on Votrient and we need advice.. They started him at 4 pills and have had to drop to 3. The side effects were much too hard on him to deal with... Blistering between fingers and bottoms of feet, extreme nausia, sore throat and blistering in mouth... We got help with changing meds for nausia. From Penergran to Zofran.  The Zofran helped so much with the nausia at first and almost took it away completely. BUT he has lost his apetite and eats very little. Now when he eats, he gets sick and has to stop. So far he has lost 55 pounds. ( he was a bit heavy to begin with so we had some room to lose) BUT now he cant afford to continue to not eat. I think his lack of eating is causing his Votrient to have MORE side effects... He started back to work last week and needs to work- for insurnance and it also keeps his mind occupied.  Thankfully he works for a GREAT company who have put him on light duty and is not so difficult. I know working when you have cancer is tough. But right now he is battling 24/7. It kills me to watch him suffer and thats why i came here. Maybe someone somewhere has some advice. Praying so <3 

     

  • angec
    angec Member Posts: 924
    Lisa_03 said:

    Votrient help needed! ASAP

    Hi guys. My boyfriend of 14 years was diagnosed with RCC on Nov 30,2012.  They put him on Votrient and we need advice.. They started him at 4 pills and have had to drop to 3. The side effects were much too hard on him to deal with... Blistering between fingers and bottoms of feet, extreme nausia, sore throat and blistering in mouth... We got help with changing meds for nausia. From Penergran to Zofran.  The Zofran helped so much with the nausia at first and almost took it away completely. BUT he has lost his apetite and eats very little. Now when he eats, he gets sick and has to stop. So far he has lost 55 pounds. ( he was a bit heavy to begin with so we had some room to lose) BUT now he cant afford to continue to not eat. I think his lack of eating is causing his Votrient to have MORE side effects... He started back to work last week and needs to work- for insurnance and it also keeps his mind occupied.  Thankfully he works for a GREAT company who have put him on light duty and is not so difficult. I know working when you have cancer is tough. But right now he is battling 24/7. It kills me to watch him suffer and thats why i came here. Maybe someone somewhere has some advice. Praying so <3 

     

    Hi Lisa, sorry your b/f is

    Hi Lisa, sorry your b/f is having severe affects.  Did the oncologist suggest lowering the dosage a little further for now? My mom 80 is on half the dose, 400 mgs. She has gone off for two weeks due to the high blood pressure but is hoping to get back on once her body has a little rest. If he is losing that much weight perhaps the doc will let him stop the meds complete for a couple of weeks to recover.

    The bp meds cause alot of the side affects as well.  Most people take the votrient at night before bed, two hours after eating and then an hour after taking the meds they have a little snack to help with the neasua.  When taken at night it seems the pill might be more effective since cancer is active at night.  Also it helps with the neasua because he is mostly sleeping.  I believe there is also a med for the blistering in the mouth as well.. anyone know the name of the med? TW?

    What are the details on your b/f, age, path reports, prognosis?

    Once things get under control he should do fine, it is just in the beginning things have to be fine tuned. Others here will be able to add more to this post and help you. keep your chin up things will get better, there are alot of options out there!  Praying for you and your b/f!

     

  • Hugo
    Hugo Member Posts: 1
    Lisa_03 said:

    Votrient help needed! ASAP

    Hi guys. My boyfriend of 14 years was diagnosed with RCC on Nov 30,2012.  They put him on Votrient and we need advice.. They started him at 4 pills and have had to drop to 3. The side effects were much too hard on him to deal with... Blistering between fingers and bottoms of feet, extreme nausia, sore throat and blistering in mouth... We got help with changing meds for nausia. From Penergran to Zofran.  The Zofran helped so much with the nausia at first and almost took it away completely. BUT he has lost his apetite and eats very little. Now when he eats, he gets sick and has to stop. So far he has lost 55 pounds. ( he was a bit heavy to begin with so we had some room to lose) BUT now he cant afford to continue to not eat. I think his lack of eating is causing his Votrient to have MORE side effects... He started back to work last week and needs to work- for insurnance and it also keeps his mind occupied.  Thankfully he works for a GREAT company who have put him on light duty and is not so difficult. I know working when you have cancer is tough. But right now he is battling 24/7. It kills me to watch him suffer and thats why i came here. Maybe someone somewhere has some advice. Praying so <3 

     

    Votrinet side effects

    I am also having really bad side affects with Votrient. To the point that I had to stop taking it. Was your boyfriend abled to overcome the side effects. Any advice from your experience will be appreciated. Thank you so much

  • Djinnie
    Djinnie Member Posts: 945
    Hugo said:

    Votrinet side effects

    I am also having really bad side affects with Votrient. To the point that I had to stop taking it. Was your boyfriend abled to overcome the side effects. Any advice from your experience will be appreciated. Thank you so much

    Votrient!

    Hugo, these are old posts, it would be better if you started a fresh posting to pose this question.

     

    Djinnie