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pazopanib side effects?

jimran
Posts: 4
Joined: Dec 2011

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

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

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's picture
foxhd
Posts: 1875
Joined: Oct 2011

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
Posts: 42
Joined: Nov 2011

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
Posts: 42
Joined: Nov 2011

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's picture
jhsu
Posts: 78
Joined: Sep 2009

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
Posts: 42
Joined: Nov 2011

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
Posts: 42
Joined: Nov 2011

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's picture
etrainor
Posts: 8
Joined: Dec 2011

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
Posts: 42
Joined: Nov 2011

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's picture
MikeK703
Posts: 235
Joined: Sep 2010

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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's picture
garym
Posts: 1651
Joined: Nov 2009

ivfour,

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

Congrats,

Gary

ivfour
Posts: 42
Joined: Nov 2011

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Here is some more information on the side-effects of Votrient.

aditya_fighter
Posts: 20
Joined: Jul 2012

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's picture
alice124
Posts: 860
Joined: Mar 2012

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
Posts: 20
Joined: Jul 2012

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's picture
alice124
Posts: 860
Joined: Mar 2012

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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's picture
alice124
Posts: 860
Joined: Mar 2012

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

ivfour
Posts: 42
Joined: Nov 2011

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
Posts: 20
Joined: Jul 2012

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
Posts: 16
Joined: Aug 2012

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
Posts: 42
Joined: Nov 2011

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
Posts: 16
Joined: Aug 2012

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
Posts: 20
Joined: Jul 2012

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
Posts: 16
Joined: Aug 2012

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's picture
angec
Posts: 621
Joined: Mar 2012

How is everyone doing on Votrient? Any updates?

Pink Sugar
Posts: 1
Joined: Jan 2013

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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
Posts: 515
Joined: Dec 2012

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's picture
GSRon
Posts: 1183
Joined: Jan 2013

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's picture
garym
Posts: 1651
Joined: Nov 2009

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's picture
GSRon
Posts: 1183
Joined: Jan 2013

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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
Posts: 2
Joined: Mar 2013

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's picture
angec
Posts: 621
Joined: Mar 2012

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!

 

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