Welcome to the new Cancer Survivors Network website! Existing members can click HERE to review the changes and new features on CSN.

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
«1

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

    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

    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

    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.
  • 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.