pazopanib side effects?

jimran
jimran Member Posts: 4
Hi all,
I'd like to hear about side effects of pazopanib. Not just the long list that comes with the drug, but what someone on the list has actually experienced. The oncologist tells you all the bad stuff and it's pretty scary. I have the opportunity to get into a study for Stage III RCC. I've had my right radical nephrectomy and have no known cancer today (as of 10/20/11). The study is to see if pazopanib prevents recurrence.

It's hard to weigh the risks of recurrence (35-50% according to the oncologist) against the chances of severe side effects (like death!). On top of that the whole point of the study is that nothing has yet been found to prevent recurrence and they're trying this drug now.
Thanks for the list, it's a real help.
Jim
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Comments

  • MikeK703
    MikeK703 Member Posts: 235
    Pazopanib
    Hi Jim,
    I don't know anything about it, but you might get some good info here where there has been a lot of discussion about it: http://www.cancercompass.com/search-messages?q=pazopanib
    Regards
    Mike
  • foxhd
    foxhd Member Posts: 3,181
    pazobinib
    Hi Jim. It sounds like the trial I was offered in the spring at Dana Farber after my radical nephrectomy . This is what I decided. First, I understood my overall poor prognosis. Then I decided that if I had to potentially spend my last year feeling miserable from side effects and maybe not living any longer despite pazobinib, I opted out. I Felt good... I'm a biker, a runner, and a golfer. I had several motorcycle trips planned. I had also made a plan a couple years earlier about,"when I die, I'm gonna die in the best shape of my life."( little did I know it might come true). So, I worked hard on my running and weights. Golfed every week. I had a great summer...Anyway, along came October. Recurrence. My local oncologist and my first "second opinion" basically said there were promising treatments out there but they couldn't help me. Third opinion was at Yale. The only place within a hundred miles where I could get Interleuken 2. Last chance. I got there and found out about a trial they are involved in using MDX-1106. Only about 80 people in the country are going to get this trial. And only 10 at Yale....Long story short. Having not been on a previous trial drug, I am receiving MDX-1106 at the maximum dose. Minor side effects for some. None for me. It is being considered the magic bullet. It allows your own immune system to aggressively fight the tumors. If not a cure, then it may be able to halt all progress of the disease...Point is, I'm glad I did not take part in the pazobinib study. I'm not offering advice or suggesting what you should do. Just glad I passed on it. Good luck with your decision.
  • ivfour
    ivfour Member Posts: 49
    Pasonpanib side effects
    I have been on votrient since July 2011 with very few side effects. I started out on 4 tablets (800mg) a day for a couple of months and then had to drop down to 2 tablets due to liver enzymes being elevated and some mouth issues. I also have a decreased appetite and some nausea but still mange to eat and only lost about 10 pounds in the last six Months. I was diagnosed in April 2011 with stage iv with mets to lung. I just completed abdominal,pelvic,chest, and brain scans that were all read as normal and no evidence of metastatic disease. He plans for me to stay on votrient for another 6 months and will repeat scans again afew months after stopping. For me the votrient was an answered prayer. It was also kind of ironic I because insurance wouldn't pay for onconolgist's first choice of Affinitor.
  • ivfour
    ivfour Member Posts: 49
    Pasonpanib side effects
    I have been on votrient since July 2011 with very few side effects. I started out on 4 tablets (800mg) a day for a couple of months and then had to drop down to 2 tablets due to liver enzymes being elevated and some mouth issues. I also have a decreased appetite and some nausea but still mange to eat and only lost about 10 pounds in the last six Months. I was diagnosed in April 2011 with stage iv with mets to lung. I just completed abdominal,pelvic,chest, and brain scans that were all read as normal and no evidence of metastatic disease. He plans for me to stay on votrient for another 6 months and will repeat scans again afew months after stopping. For me the votrient was an answered prayer. It was also kind of ironic I because insurance wouldn't pay for onconolgist's first choice of Affinitor.
  • jhsu
    jhsu Member Posts: 80
    ivfour said:

    Pasonpanib side effects
    I have been on votrient since July 2011 with very few side effects. I started out on 4 tablets (800mg) a day for a couple of months and then had to drop down to 2 tablets due to liver enzymes being elevated and some mouth issues. I also have a decreased appetite and some nausea but still mange to eat and only lost about 10 pounds in the last six Months. I was diagnosed in April 2011 with stage iv with mets to lung. I just completed abdominal,pelvic,chest, and brain scans that were all read as normal and no evidence of metastatic disease. He plans for me to stay on votrient for another 6 months and will repeat scans again afew months after stopping. For me the votrient was an answered prayer. It was also kind of ironic I because insurance wouldn't pay for onconolgist's first choice of Affinitor.

    I'm wondering how they define the time wait before new tumors recurrence. 6 months, 1 year, 3 years.... I know some people has recurrence even after 10 years. Is that mean you need to take the pill for the rest of your live?

    Jon
  • ivfour
    ivfour Member Posts: 49
    jhsu said:

    I'm wondering how they define the time wait before new tumors recurrence. 6 months, 1 year, 3 years.... I know some people has recurrence even after 10 years. Is that mean you need to take the pill for the rest of your live?

    Jon

    That is the question that
    That is the question that awaits me about when to stop the votrient. Right now the plan is to continue another six months and then repeat scans after being off of it for 3 months I believe. The oncologist I see says that there isn't any hard evidence right now. I am just thankful to be cancer free for right now and it has definitely made me appreciate every day. Will keep everyone updated in the coming months.
  • ivfour
    ivfour Member Posts: 49
    ivfour said:

    That is the question that
    That is the question that awaits me about when to stop the votrient. Right now the plan is to continue another six months and then repeat scans after being off of it for 3 months I believe. The oncologist I see says that there isn't any hard evidence right now. I am just thankful to be cancer free for right now and it has definitely made me appreciate every day. Will keep everyone updated in the coming months.

    Cumulative Effects of Votrient
    I may have posted too soon about the side effects. It seems that I am having more GI upset/symptoms and fatigue now that I have beeen on it about 6 months and wondered if others have had increase in symptoms the longer they are on the votrient. It is still a small price to pay for the results but just wondered if anyone else has had this happen.
  • etrainor
    etrainor Member Posts: 8
    ivfour said:

    Pasonpanib side effects
    I have been on votrient since July 2011 with very few side effects. I started out on 4 tablets (800mg) a day for a couple of months and then had to drop down to 2 tablets due to liver enzymes being elevated and some mouth issues. I also have a decreased appetite and some nausea but still mange to eat and only lost about 10 pounds in the last six Months. I was diagnosed in April 2011 with stage iv with mets to lung. I just completed abdominal,pelvic,chest, and brain scans that were all read as normal and no evidence of metastatic disease. He plans for me to stay on votrient for another 6 months and will repeat scans again afew months after stopping. For me the votrient was an answered prayer. It was also kind of ironic I because insurance wouldn't pay for onconolgist's first choice of Affinitor.

    pazopanib
    I'm considering a trial for using pazopanib as a preventative medication for recurrences of kidney tumors. Did your tumor in your lung go away with the use of pazopanib? Were you working while taking the drug and did the side effects of the medicine effect your day to day life?
    Thank you,

    Colleen Trainor
  • ivfour
    ivfour Member Posts: 49
    etrainor said:

    pazopanib
    I'm considering a trial for using pazopanib as a preventative medication for recurrences of kidney tumors. Did your tumor in your lung go away with the use of pazopanib? Were you working while taking the drug and did the side effects of the medicine effect your day to day life?
    Thank you,

    Colleen Trainor

    Tumors gonee
    Ihavebeenon the votrient since july2011 andCAT scans innovember showed that the tumor nodules in my right lung are gone. I have been able to work full time with tolerable side effects. Oi have some nausea, diarrhea, elevated blood pressure and liver enzymes but it hasn't made me stop treatment, I will go back in march to see how much longer to stay on the votrient and when to do other scans. It has worked great for me. My original kidney tumore was over 10cm.
  • MikeK703
    MikeK703 Member Posts: 235
    ivfour said:

    Tumors gonee
    Ihavebeenon the votrient since july2011 andCAT scans innovember showed that the tumor nodules in my right lung are gone. I have been able to work full time with tolerable side effects. Oi have some nausea, diarrhea, elevated blood pressure and liver enzymes but it hasn't made me stop treatment, I will go back in march to see how much longer to stay on the votrient and when to do other scans. It has worked great for me. My original kidney tumore was over 10cm.

    Tumors gone
    ivfour, that's terrific news. Not the nausea, diarrhea, etc. but I guess that's a small price to pay for positive results. Congrats.
    Mike
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    MikeK703 said:

    Tumors gone
    ivfour, that's terrific news. Not the nausea, diarrhea, etc. but I guess that's a small price to pay for positive results. Congrats.
    Mike

    Votrient
    What brilliant results for ivfour on Votrient!

    Thanks for posting the CTCA link - Cancer Compass - above, Mike. It sure has lots of valuable threads on experiences with the newer drug treatments. Many of these are so new that it's evident the experts are still in the early learning stages in working out which suits whom and what dose levels are best. It graphically illustrates the huge biological individuality within our species.

    Exploring the CTCA site, I noticed that under Treatments, in the section on Mind-body medicine, there's a sub-section entitled "Animal-assisted therapy". I haven't investigated it yet but I'm sure it must have an option for a brush with a fox.
  • garym
    garym Member Posts: 1,647
    ivfour said:

    Tumors gonee
    Ihavebeenon the votrient since july2011 andCAT scans innovember showed that the tumor nodules in my right lung are gone. I have been able to work full time with tolerable side effects. Oi have some nausea, diarrhea, elevated blood pressure and liver enzymes but it hasn't made me stop treatment, I will go back in march to see how much longer to stay on the votrient and when to do other scans. It has worked great for me. My original kidney tumore was over 10cm.

    Tumors gone...
    ivfour,

    That's great news, may you have continued success for a very long time.

    Congrats,

    Gary
  • ivfour
    ivfour Member Posts: 49
    garym said:

    Tumors gone...
    ivfour,

    That's great news, may you have continued success for a very long time.

    Congrats,

    Gary

    Thanksgiving
    In April when I got the news of stage iv metastatic kidney cancer, I just knew as a nurse that it was not good. I feel very fortunate to have had the motorcycle wreck and the treatment I have received. It couldn't be any better. I go back in March and we will decide how long to stay on the votrient. I Amos thankful for the results and live each day to the fullest.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    ivfour said:

    Thanksgiving
    In April when I got the news of stage iv metastatic kidney cancer, I just knew as a nurse that it was not good. I feel very fortunate to have had the motorcycle wreck and the treatment I have received. It couldn't be any better. I go back in March and we will decide how long to stay on the votrient. I Amos thankful for the results and live each day to the fullest.

    For YOGESH SHAH
    Here is some more information on the side-effects of Votrient.
  • aditya_fighter
    aditya_fighter Member Posts: 20
    ivfour said:

    Tumors gonee
    Ihavebeenon the votrient since july2011 andCAT scans innovember showed that the tumor nodules in my right lung are gone. I have been able to work full time with tolerable side effects. Oi have some nausea, diarrhea, elevated blood pressure and liver enzymes but it hasn't made me stop treatment, I will go back in march to see how much longer to stay on the votrient and when to do other scans. It has worked great for me. My original kidney tumore was over 10cm.

    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.
  • alice124
    alice124 Member Posts: 896 Member

    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.

    lung nodules
    aditya fighter

    You say you had a nephrectomy done in May 2012, and, afterwards, given Votrient. Have you been scanned since being on Votrient? Do you know if lung nodules have decreased or increased in size/number or stabilized?

    I believe an answer might make insight into your questions above a little easier to offer.

    Wishing you the best.
  • aditya_fighter
    aditya_fighter Member Posts: 20
    alice124 said:

    lung nodules
    aditya fighter

    You say you had a nephrectomy done in May 2012, and, afterwards, given Votrient. Have you been scanned since being on Votrient? Do you know if lung nodules have decreased or increased in size/number or stabilized?

    I believe an answer might make insight into your questions above a little easier to offer.

    Wishing you the best.

    lung nodules
    Dear Alice

    I am on Votrient since 10th June 12 and my oncologist has suggested first scan after three months, that is my first scan after taking Votrient would be in mid Sept 12. However, I had terrible cough for last two years, and the same has vanished, immediately after the surgery. It seems it is too early, to be impatient.
    Thanks for your best wishes.
  • alice124
    alice124 Member Posts: 896 Member

    lung nodules
    Dear Alice

    I am on Votrient since 10th June 12 and my oncologist has suggested first scan after three months, that is my first scan after taking Votrient would be in mid Sept 12. However, I had terrible cough for last two years, and the same has vanished, immediately after the surgery. It seems it is too early, to be impatient.
    Thanks for your best wishes.

    lung nodules
    My husband also had a vicious cough at the onset of all this and, of course, they found numerous lung nodules. While his cough continued throughout the HDIL2 treatment, the cough disappeared after the MDX1106 / Votrient trial started. Then the first scan showed great improvement in the lung ares with the smaller nodules disappearing completely and the larger nodules shrinking by 31%. So whether it's the MDX1106 or the Votrient, we don't know yet.

    His trial of these two combined drugs is for a year and if he continues to do well, his doctor said he might keep him on it for a year after the trial. Not sure exactly how that would work--whether it would involve another trial or if they expect the MDX 1106 to be FDA approved soon. I guess we'll see.

    But while it is hard to be patient, I think you need to sit tight a little while longer. I think your vanished cough is a promising sign.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    alice124 said:

    lung nodules
    My husband also had a vicious cough at the onset of all this and, of course, they found numerous lung nodules. While his cough continued throughout the HDIL2 treatment, the cough disappeared after the MDX1106 / Votrient trial started. Then the first scan showed great improvement in the lung ares with the smaller nodules disappearing completely and the larger nodules shrinking by 31%. So whether it's the MDX1106 or the Votrient, we don't know yet.

    His trial of these two combined drugs is for a year and if he continues to do well, his doctor said he might keep him on it for a year after the trial. Not sure exactly how that would work--whether it would involve another trial or if they expect the MDX 1106 to be FDA approved soon. I guess we'll see.

    But while it is hard to be patient, I think you need to sit tight a little while longer. I think your vanished cough is a promising sign.

    Improvement
    Whatever it's due to, it's splendid to hear how well John is doing.

    Alice, I think you've missed another possibility that may prove to be extremely important. It may not be a question of whether it's the MDX-1106 OR the Votrient. It might be due to the MDX AND the Votrient. Moreover, if so, it might be due to the additive effects, or to a multiplier effect (either by a one-way or a two-way potentiation - latter, admittedly intuitively improbable) or it may be due to the combination, where the total effect is more than the sum of the parts by virtue of attacking the disease on more than one front. The seeming ability of cancers to adapt in fending off attack does appear to commend the approach of hitting it from many different angles simultaneously
  • alice124
    alice124 Member Posts: 896 Member

    Improvement
    Whatever it's due to, it's splendid to hear how well John is doing.

    Alice, I think you've missed another possibility that may prove to be extremely important. It may not be a question of whether it's the MDX-1106 OR the Votrient. It might be due to the MDX AND the Votrient. Moreover, if so, it might be due to the additive effects, or to a multiplier effect (either by a one-way or a two-way potentiation - latter, admittedly intuitively improbable) or it may be due to the combination, where the total effect is more than the sum of the parts by virtue of attacking the disease on more than one front. The seeming ability of cancers to adapt in fending off attack does appear to commend the approach of hitting it from many different angles simultaneously

    improvement
    You're absolutely right Tex; it's entirely probable that John's success can be attributed to the mix of MDX and Votrient.