Votrient Side Effects

Texas_wedge said:

Your Mom

So glad she's doing so well - next thing she'll be copying BDS's gym workouts!  Isn't it great that even with being on and off the Votrient and with reduced doses she's still benefiting anyway.  I think re-starting her on 200 mg makes some sense and if it goes OK he may want to get her back to 400 mg in due course.  The fact that she's regained six pounds is good too!

Your analysis of my situation is, I believe, spot on.  Sore mouth and temporary loss of taste caused me to eat less and probably drink less too. Occasional slight diarrhoea won't have helped either.  I put the same question out on KIDNEY_ONC and got a rash - of replies!  It seems that it's a general experience to lose a noticeable amount of body mass on Votrient and also on the other TKIs.  I reckon it's usually due not to the drug itself but to the sort of side-effects we've discussed leading to a spell of under-nutrition which is welcome to some who are over-weight and come out the better for it but not so much to those of us who are lean and lose only muscle mass.

The pain I'm having is from the ab wall tumour and I'm back to not being able to lie on my right side but I think I'm improving again.  CT at end of April will tell whether the Votrient is continuing to beat the tumour back.

Certainly not golfing too much.  I'm off to our annual Winter League Dinner at one of my inland golf clubs tonight, where the course continues under snow (see my Expressions page for pics).  However, I was out on the links at Carnoustie this morning for one of the rare outings so far this year.  Had to scrape ice off cars.  Bitter wind and we managed 6 holes before the snow came on too heavy to continue.  We trudged in from the furthest corner of the Championship Course and as we did so the snow stopped and the sun came out!  Reached cars and opened trunks to stash clubs and the snow re-started, the wind blowing the snow into the trunk while loading.  Closed the trunk (with bags etc covered with snow) and the snow promptly stopped!!.  [Do you think Somebody is trying to tell me something?]Went into the Carnoustie Club for refreshments and came out into blazing sunshine.  Now it's a pleasant spring day, though very cold still and I don't trust it. 

Best wishes to you, Mom, Jaden and Henry.

 

Thanks TW!  It  is amazing that you remember names so well!  Have you taken a course in memory school?  How is the wife feeling? I hope she is doing better now and back too her old self.

Sorry the snow ruined your day, but six rounds is good, especially for a brutal, cold and windy day! Mother Nature can be cruel at times, she could have at least let you finish!

I wonder why you started to feel pain again.  Could it be that you are doing too much and your muscles are sore? In any case it is good you are improving again.  Any trials being done in your area for bms?  I hope you continue to feel better.

I am not comfortable with mom on 200 mgs, I have not heard of anyone on that low a dose and she doesn't see her onc again  until the end of may.  Her pressure went up slightly.  We shall se how it goes.

You take care and sending big hugs to you!

angec said:

Thanks TW!  It  is amazing

Thanks TW!  It  is amazing that you remember names so well!  Have you taken a course in memory school?  How is the wife feeling? I hope she is doing better now and back too her old self.

Sorry the snow ruined your day, but six rounds is good, especially for a brutal, cold and windy day! Mother Nature can be cruel at times, she could have at least let you finish!

I wonder why you started to feel pain again.  Could it be that you are doing too much and your muscles are sore? In any case it is good you are improving again.  Any trials being done in your area for bms?  I hope you continue to feel better.

I am not comfortable with mom on 200 mgs, I have not heard of anyone on that low a dose and she doesn't see her onc again  until the end of may.  Her pressure went up slightly.  We shall se how it goes.

You take care and sending big hugs to you!

Duplicate

Anyway, can now say that I posted here  to keep these posts (all on the same topic) together in one place.

BDS said:

Votrient Side Effects
I have been on Votrient/Pazopnib since July 28, 2012. I have had minimal side sides but that’s me. My side effect include White hair (No big deal - It was heading in that direction anyway), change of taste and diarrhea (Not Fun). Since July, I have been fanatically going to the gym. I started out slow and have progressed. I now workout three to four times a week. My workout includes running three miles on a treadmill, swimming laps for thirdly minutes and lifting weights (About hour and a half total workout). I believe the exercise controls the fatigue associated with Votrient and may aid in its effectiveness(My opinion). In October I completed my first scans, all but two my tumors have shrunk significantly the two that did not are stable. My oncologist told me “Whatever you are doing keep on doing it”. I am a realist, I know Votrient is not going to cure me that I am in this for the long haul.

Thanks to all for all the great information  on the side effects regarding votrient.

I'm to start the drug today,I have Leiomyosarcoma cancer of the smooth muscle,but

the drug has had good results with other sarcomas, not just renal. I'm encouraged!

I was glad to hear that working out helps.

saintmont said:

Votrient side effect

Hi my blood results were good, my white blood cell count was 145 up from the last 2 which 95 and 115.

Unless our respective countries use very different units, that's probably your platelet count?  If so, that's fine (and certainly better than mine) and I hope you're feeling correspondingly good. 

Texas_wedge said:

Blood results

Unless our respective countries use very different units, that's probably your platelet count?  If so, that's fine (and certainly better than mine) and I hope you're feeling correspondingly good. 

Hi All..!!  Time for an update on my Votrient experience.  After almost 5 weeks (800 mg),  I am now (temporarily I hope) off the drug..  My Liver Enzymes went up and so the Onc said take a one week break and re-check the blood work...  I hope to get back on Votrient tomorrow.... fingers crossed...  Onc said would reduce to 600 mg if my Liver tests come back improved...

So, the sum of my side effects are...  erratic - high blood pressure..  I was on Metorprolol prior to Viotrient, and my heart doc increased the dosage in anticipation of what the Votrient would do (smart heart doc.!).  My blood pressure stabilized during week 2... not an issue...   I did have some slight headaches when my BP went up..

White hair.. ho hum.. no big deal..

Gout like pain in my left foot.. not sure if it made any difference, but I eliminated lemons in my water, and cut way back on any orange juice... the pain went away and never came back...

Diarrhea - yes.. as stated earlier Imodium took care of that..!

Tiredness.. I slept a lot...  Keep in mind I was / am working full time.. would sleep most of the weekends...

Overall, not bad..!  nothing to worry about, except the Liver part...

I did follow others suggestions here, and took my pills (800 mg) just before going to sleep.. never had any nausea that way.. Thanks to those that suggested that..!

Be Well.!

Ron

GSRon said:

Update

Hi All..!!  Time for an update on my Votrient experience.  After almost 5 weeks (800 mg),  I am now (temporarily I hope) off the drug..  My Liver Enzymes went up and so the Onc said take a one week break and re-check the blood work...  I hope to get back on Votrient tomorrow.... fingers crossed...  Onc said would reduce to 600 mg if my Liver tests come back improved...

So, the sum of my side effects are...  erratic - high blood pressure..  I was on Metorprolol prior to Viotrient, and my heart doc increased the dosage in anticipation of what the Votrient would do (smart heart doc.!).  My blood pressure stabilized during week 2... not an issue...   I did have some slight headaches when my BP went up..

White hair.. ho hum.. no big deal..

Gout like pain in my left foot.. not sure if it made any difference, but I eliminated lemons in my water, and cut way back on any orange juice... the pain went away and never came back...

Diarrhea - yes.. as stated earlier Imodium took care of that..!

Tiredness.. I slept a lot...  Keep in mind I was / am working full time.. would sleep most of the weekends...

Overall, not bad..!  nothing to worry about, except the Liver part...

I did follow others suggestions here, and took my pills (800 mg) just before going to sleep.. never had any nausea that way.. Thanks to those that suggested that..!

Be Well.!

Ron

Hi All..!  OK, I decided to add to my last post, because I think some discussion may be useful for others... I hope.   So, my blood test from 3 days ago revealed that indeed my Liver Enzymes are headed in the right direction, but my Onc wants me to wait a few more days and have another blood test to be sure...

Here is the discussion points... all comments welcome for sure..

So, I was initially told to get blood tests every two weeks.  However I balked a bit, and the Onc relented and said that it was likely OK to go four weeks.  We could all easily say that was MY mistake to wait to four (plus) weeks.  However we can also say that getting four full weeks on the Votrient may be more beneficial than possibly only getting two weeks at the full 800 mg dose.  The plan most likely is for me to go on to a 600 mg dose, starting the end of this week (after my next blood test).  I am still about 3 plus weeks away from my first scan after starting Votrient...

My thinking, is that it was better to get the four weeks at full 800 mg strength than having to stop at 2 weeks and start on a reduced 600 mg dose...  Yes i have read that some (many..?) people respond well at 600 mg, but...??  

Feel free to make comments... plus I hope this somehow helps others in some way...

Texas_wedge said:

Votrient dosage

Useful feedback Ron. 

As I've noted elsewhere (you will want to keep up to speed there, too) practice in the expert centre where I'm treated is to check liver enzymes after a week and, assuming no signs of scary levels (meaning, e.g. screaming up into the hundreds for ALT) again in another 3 weeks, then monthly thereafter, with intervention only if necessary.  I'm nearing 6 months on 800 mg with levels normalising.  A fortnight ago my bilirubins level was in normal range and ALT 83 (normal range 5-55) and my Onc is comfortable with that.  (Of course I'm 70 so criteria are a little different re whether more likely to die with cancer than from it and I'm generally very fit and strong with the only annoying chronic side-effects being GI discomfort.)

Votrient seems to be dramatically more dose-independent than, say, Sutent and there are folks doing fine on 200mg/day and even on 100 mg.   I think you shouldn't worry too much about being on a lower dose level, or taking breaks.  I would be happy to reduce my dose if my Onc felt it sensible, to make for greater abdominal comfort.  However, I doubt that she will.  With my extremely rare pathology and ultra-dismal prognosis I reckon she'll feel that if my next scan (Thursday next week) shows good results the philosophy should be 'Why rock the boat? Let's stay with the max dose and hope to keep on winning', if I'm prepared to endure the s-e's.

What are your liver enzyme readings just now?  I'll update my blog here, on my CSN personal pages, after my next scan and then again, probably, after my following Onc review appointment.  It's useful to compare notes isn't it?

Wedgie... thanks for the feed back.. but of course that leads me to yet more questions..  I wonder that "IF" people respond on a smaller dosage, might that extend the time that the drug works..??   Or perhaps the dosage has no effect on how long the drug works..??   I do see (like you) that some do fine on 100 mg a day... some on 200, etc...  And the big unknown is that by starting up with the 800 mg a day, perhaps that may help prevent more Mets from showing up.. or slowing them down as well...

Yes questions with no good answers, I suspect.. but thanks for your info...   I do not have my test results in hand... but I am going to have more tests done the end of this week... I will ask to see the numbers then...

Ron

GSRon said:

Back On

Hi All..!!  OK, so about 17 days ago, I was told to stop taking the Votrient 800 MG.. my Liver Enzymes were very high...  but have gone down near normal overall...    So, 2 days ago I am back on the Votrient at 600 MG.  We will see how I do...  Keep in mind I have yet to have any scans (just blood work) since starting the Votrient... and my Onc wants to put off the scans until the Votrient has a chance to work for me... just another feww weeks is my guess...

So, what did I learn..?  First, some suppliments are NOT good for use with any drug that can elevate Liver Enzymes...!  No, I was not on any suppliments, but I know some folks are...  And I must give the caveat, we are all differnt... check with your Onc.. 

Also, within about 2 days of being off the drug, I was pretty much back to being a normal person... more energy, the diarrhea stopped, etc...  Felt great to be off the drug, however we all know... that the Cancer inside is the real enemy...  I got a LOT done in the last two weeks... got my race bike almost ready to be raced next week..!  Yes..!!

Now I am back on Votrient.. I was surprized that the side effects started to show back up literally over night..!  My blood pressure elevted, the headaches started, some nausea, and of course diarrhea and fatigue.  With the initial start up of the Votrient, it took about a week or so for all of these side effects to show up... yet this time within hours... and in addition to listed above, my skin tingles / itches which it did not do before... interesting...  My take is that the drug never totally left my body in the time off... and that may mean it was still working to some degree... I hope..!

I am on B.P. meds, so that should be OK in a few days... but I thought there may be some value in my experience, for others...

Be Well..!

Ron

 I was diagnosed with stage 4 RCC almost 3 years ago. I had my fight Kidney removed at Mass General on 11/7/10. I had 2 treatments of IL2. 2^nd treatment was pretty rough. The scans after showed that the treatment wasn’t a home run but more of a double. For over a year there was less than 1mm of growth on any tumor each scan. Then last month one in my right lung grew 1cm. That was enough for the Doctor to say that I will be starting Votrient.

 I have been on Votrient for just about a month. First week was rough. The nausea really got to me. The Doctor gave me some medication for that and the acid reflux that I was experiencing. It felt like chest tightness and felt better when I drank water. Since the addition of the 2 meds I have been fine for the most part. Occasional diarrhea nothing that Imodium can’t stop. But the taste change is the worst. Nothing tastes right. I have a metal taste in my mouth.  

 I have been doing everything that I was doing before I was diagnosed with Cancer. Working full time. I bowl 25-30 games a week. Fish bass tournaments when the weather allows. So far so good. Losing a bit of weight 8 pounds this month. Mainly because nothing tastes right.

 I will have my first scan in 8 weeks. Can’t wait. Hopefully they are going to shrink

Hello Everyone,

I was just wondering if anyone on this thread has had a good response on Votrient without any known problems with high blood pressure?

What would the symptoms of high blood pressure be? My Dad has been feeling really terrible over the last few days, describing feeling really really dizzy, which can come on all of a sudden, he says it feels like the worst hangover ever except without the enjoyment of having a drink! Thankyou.

Kelly x

GSRon said:

Back On

Hi All..!!  OK, so about 17 days ago, I was told to stop taking the Votrient 800 MG.. my Liver Enzymes were very high...  but have gone down near normal overall...    So, 2 days ago I am back on the Votrient at 600 MG.  We will see how I do...  Keep in mind I have yet to have any scans (just blood work) since starting the Votrient... and my Onc wants to put off the scans until the Votrient has a chance to work for me... just another feww weeks is my guess...

So, what did I learn..?  First, some suppliments are NOT good for use with any drug that can elevate Liver Enzymes...!  No, I was not on any suppliments, but I know some folks are...  And I must give the caveat, we are all differnt... check with your Onc.. 

Also, within about 2 days of being off the drug, I was pretty much back to being a normal person... more energy, the diarrhea stopped, etc...  Felt great to be off the drug, however we all know... that the Cancer inside is the real enemy...  I got a LOT done in the last two weeks... got my race bike almost ready to be raced next week..!  Yes..!!

Now I am back on Votrient.. I was surprized that the side effects started to show back up literally over night..!  My blood pressure elevted, the headaches started, some nausea, and of course diarrhea and fatigue.  With the initial start up of the Votrient, it took about a week or so for all of these side effects to show up... yet this time within hours... and in addition to listed above, my skin tingles / itches which it did not do before... interesting...  My take is that the drug never totally left my body in the time off... and that may mean it was still working to some degree... I hope..!

I am on B.P. meds, so that should be OK in a few days... but I thought there may be some value in my experience, for others...

Be Well..!

Ron

Hi Ron,

Your experience--on and off Votrient--is interesting. John went off the Votrient a couple of weeks ago due to mouth sores and his research nurse told us the Votrient vacation would make him feel like a new person. But it didn't. There really was no discernible difference for him during his week off Votrient. Of course, John has'nt experienced high blood pressure from the Votrient which make many believe he is not benefitting from that part of the trial (Nivolumab/Votrient), and they may be right. It could be the Nivolumab that's doing the work on his tumors, but then again it could be the combo.

Here's another tidbit for being your own health advocate no matter how many doctors are looking out for you. Just a week ago, John realized a mistake he was making. He has been taking prevacid/priolosec on a rotating basis after it was prescribed by his gastroenterologist years ago. He just learned Prilosec was a no-no so he's discopntinued its usage. Could taking it have compromised the Votrient? We don't know, but we'll see.

Anyway, hope your return to Votrient is the magic bullet to get rid of the tumors. It does sound like the Votrient never left your system.