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Votrient side effects

Tom62
Posts: 5
Joined: Aug 2012

My wife was surprised to be diagnosed 10 weeks ago with Renal Cell Carcinoma that starting with a CT scan for her back problems. After a diagnosis in Houston She had her left kidney, left adrenal gland, lymph nodes and a mass in her abdomen removed, she also has multiple spots on each lung. After a six week recovery from surgery we were put on Votrient, four tablets daily (800mg). The Doctor suggested taking all four at night before bedtime. Which we did for a four days and the nausea got too much and we backed off for a few days and are trying to get back to the point of taking 2 mid afternoon and 2 at bedtime, which we think will be easier on her. The Doctor also said to take on an empty stomach. Here are my two questions. She is having strong muscle cramps; we are taking a magnesium tablet and trying to drink plenty of fluids, but was wondering if someone has found a better solution and if this a common problem? It was not listed in the two pages of side effects. Also, she is experiencing nausea, weakness and a sore mouth. I was hoping someone who has experience with this drug can shed some light on what to expect. She is 62 and already has high blood pressure. We are working through these issues but would like to have someone with experience to lead the way. Thank you for any help you can provide. Tom62

ivfour
Posts: 42
Joined: Nov 2011

I have been on votrient almost for a full year for stage iv kidney cancer with mets to the lungs. I started out on 4 tablets but had to cut down to 2 tablets (400) due to mouth sore, and liver enzymes being up. I have still had great results with two sets of scan revealing the nodules in the lungs being gone. I do know the votrient has to be taken one hour before meals or two hours after. I was never told what time to take them but it seems to work out if intake them about 4pm and will sometimes taken phenergan shortly afterwards for the nausea. I usually have some vomiting about once a week but that is about it along with some fatigue. My blood pressure manages to stay around 140/90 and oncologist is okay as long as bottom number is below 100. Hoping she can tolerate side effects or dr feels dosage can be decreased. God bless

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Hi, Tom62 and welcome. I hope what I say below will help you to gets lots of good information STRAIGHT AWAY from the good folks here.

So much useful information keeps getting lost on this forum (and I think I'll make a suggestion to CSN that might help - we keep on re-inventing the wheel because many of us aren't practised at doing searches).

On this topic - Votrient side-effects - we already have a wealth of information that is immediately available, so you don't need to wait for members to reply here because many have already done so.

All you need to do is use the search facilities CSN has provided. When you go to the screen "Discussion Boards", at the top right corner you'll see:

Search CSN content
Search CSN members

Click on the top one - "content" - and put suitable word(s) into the search box that comes up and you can search the whole of the CSN. Putting in a search for "Votrient side-effects" would have found you a dozen threads including a recent thread on this forum entitled "Votrient Side Effects" [computers are very literal and the the presence of a hyphen or capital letters makes a big difference to the computer.] There have already been 40 posts on the subject on that thread that could give you a lot of useful info. Ironically, the second post there was one of mine, saying:

"Votrient side effects

If you go to the thread entitled "pazopanib side effects" you'll find good info. from ivfour who has been on Votrient (pazopanib) for some time. You'll find the thread at

http://csn.cancer.org/node/232668"

Better still is the more focused search - from the screen "Discussion Boards" you get to the listing of all the cancer forums and selecting 'Kidney Cancer' gets you to the list of all the threads in this Kidney Cancer forum. On that screen, at the top right, is another search box which is limited to searching only this Kidney Cancer forum. Putting the same words in there gets you to the same dozen threads (although differently ordered since the software writers have evidently used different algorithms).

Tom, I hope this helps you to quickly get a lot of info on the side-effects and I hope also that you get the maximum benefit from Votrient.

Tom62
Posts: 5
Joined: Aug 2012

I will do that, thanks for you help.

Tom62
Posts: 5
Joined: Aug 2012

Thank you that is helpful. Her blood pressure is running high, averaging 150/100 but we have doubled the BP meds and expect that to get better. Our oncologist told us today to stay at 2 pills for a until her body adjusts. She is taking her pills around bedtime (9:30pm) She is also on phenergan and a something for muscle spasms. God has richly blessed us both and we are grateful.

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

Hi Tom,

Votrient is a part of John's (my husband) current therapy with BMS936558 (also called MDX1106), and I have mentioned his minimal side effects in earlier posts. However, as it is a work in progress, I'll mention that on a few occasions recently, he has felt nauseus. However, he keeps a prescription of Zolfran on hand and that's usually all that is required to alleviate the nausea.

He also is very disciplined about taking Votrient TWO HOURS after eating. That's what was recommended to him and he adheres to it. And he takes all four pills (800 mg) at night. I wonder if she would do better taking them two hours after eating rather than a specific time?

Just a thought. Godspeed to you both.

aditya_fighter
Posts: 20
Joined: Jul 2012

Hi Tom

I am also on Votrient 800 mg OD. I have also been told to take it two hours after and one hour before any meal. I have kept the pills just beside my bedside and take it immediately after I get up. I also take care not to eat or drink anything except water for the next one hour or so.
My B.P. has also risen to 135 x 90 which is OK for me since my Creatanine level in blood is 1.25. My physician says that if the creat level goes upto 1.4 then the blood pressure should be max 130 x 80. Therefore please relate the B.P. with the Creatanine levels as high B.P. can damage the residual kidney. I also had severe sore mouth but it has reduced a lot, after I started taking Vitamin B complex one tab immdtly after lunch. However, my skin and hair are getting depigmented very fast. I think, may be within a month or two, all my hair would turn grey. Nevertheless, it's a small price to pay to be alive. I also feel that one should have lots of salads, fresh fruits, raw vegetables as well as yoghurt to avoid nausea.
Good wishes to you and your wife.

Aditya from India

BDS's picture
BDS
Posts: 103
Joined: Aug 2012

ivFour I have just started taking Votrient and have mets to my lungs. How many mets did you have and what were there size. How long did it take Votrient before your mets disappeared. What did your doctors say when they did.

Did your tumors have any Sarcomatiod percentage?

ivfour
Posts: 42
Joined: Nov 2011

I don't remember the size of the original nodules because it was told to me right after my motorcycle wreck but the follow up CT scan just said nodules in both lungs with the largest being 1cm. This was in August 2011 and the follow up scans in December 2011 and June 2012 show no evidence of disease. Brain, abdomen and pelvis were also clear in November. I have been on the votrient for just over a year now and was off it twice due to elevated liver enzymes once for a couple of weeks and once for a month. My next oncology appointment is September 17th. I hope that you have the same positive results. There was no mention of sarcomatoid in the pathology report only RCC Furman stage 4.

BDS's picture
BDS
Posts: 103
Joined: Aug 2012

IVfour I am sorry to pry but on September 17th I will be asking for an update. Like you I am 52 years old and had a 10 cm tumor on my left kidney. On June 11, 2012 my left kidney was surgically removed at Fox Chase Cancer Center in Philadelphia. Afterwards, I was informed that my cancer contained a 5 percent sacomatoid; which is a more aggressive form of kidney cancer. The cancer had spread to my lymph nodes and I had 13 small tumors/nodules in my lungs. Most are in the millimeter range the largest being 1.9 cm. I have been taking 800 mg Votrient for a month now with the only side effects being elevated blood pressure (controlled with meds) and my hair starting to turn white (No big deal - It was heading in that direction anyway). My first scans - post being on Votrient will not occur until late October. I realize that everyone’s cancer and how they respond to treatment is going to be different. But your situation is the closest to mine that I have found. And you have had so far the MOST positive outcome. Wishing you continued success on September 17th.

ivfour
Posts: 42
Joined: Nov 2011

BDS, I didn't feel that you were prying. I am always open to how the treatment plan is working or not working for me. Of course, sharing great news is always easier but it helped me to read of other person's experiences about this cancer especially when it was good results. I was so terrified of hearing stage iv metastatic that reading or hearing about good results was helpful. I hope that your body has responded the same way.

BDS's picture
BDS
Posts: 103
Joined: Aug 2012

IVFour, how did your scans go on September 17th? I very much hope that you are still NED. If things are going well how long does your oncologist plan to keep you on Votrient? Best wishes - BDS

ivfour
Posts: 42
Joined: Nov 2011

I don't have scans again until December but did see the oncologist in September. Fortunately my liver enzymes are back to normal and I can stay on the same dosage of 400mg of votrient. I repeat scans again in December. He believes that the plan now will be to stay on the votrient for five years and look to see what additional research has shown. I still only have some mile nausea/ vomiting and fatigue. I am so very blessed to have had such good results.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

You've certainly been a great advertisement for Votrient, Harley Girl. May I ask what explanation was given for the choice of that rather than, e.g. Sutent, as first-line adjuvant therapy? I'm guessing that with the broken ribs etc they wanted you to have a drug with the least possible side-effects to give you less to cope with while recovering from your serious crash injuries.

However, there may have been other reasons. Can you remember how the choice of drug was arrived at?

angec's picture
angec
Posts: 653
Joined: Mar 2012

TW.. i read a post the other day where someone had sacromatoid and the doc gave them votrient and it took all tumors away. However, I can't remember the name of the person. Does anyone know?

ivfour
Posts: 42
Joined: Nov 2011

He was looking at side effects and actually wanted me on Affinitor but insurance wouldn't cover it as the first option. Needless to say, I was a concerned since that wasn't his first choice but he felt it was okay to go with the votrient. I think also since it was a newer drug with good results he felt it would be my best option. I am still amazed that the drug at half the dose is working so well.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Thanks for the reply, Harley Girl. It looks as if it turned out to be a very good choice for you and it's educational that it's doing so much for you even at the reduced dose.

There's an appealing elegance in the synchronicity here, in view of my contributions to this thread (see above) - I never dreamt it would all become relevant for me personally! Until a few short weeks ago, I looked to have been cured by surgery, to have got away Scot-free, and to never be needing any drug therapy. Now it's all change and I expect I'll be joining you on Votrient in the next week or so.

Even stranger is the fact that I've been using threads about Votrient and its side-effects to illustrate the argument about better structure on CSN, designed to make retrieving information from all of our threads here easier. Alice and I had independently arrived at the same thoughts on this topic so when Alice started a thread about, it I jumped on it immediately and have been speaking to CSN about the possible scope for improvements, repeatedly demonstrating what I envisaged by using Votrient as the subject-matter! I think maybe I'll bring that thread of Alice's up again so that the ideas don't get lost - the whole point of the suggested changes being to avoid this happening.

Now, I'll be sitting at your feet to get to know the ropes about this treatment and how to best handle the side-effects. Funnily enough, my oncologist mentioned the possibility of a trial on Afinitor which, if I recall correctly, is usually a second-line treatment (I may be getting muddled up here though - must check).

I guess we'll be talking some more. Meantime, hang in there and get better.

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