Votrient Side Effects

KJones1969 said:

Good Luck and Prayers Your Way Ron

Votrient was good to my husband to start with and from what I am told a lot of people have much success with it long term. I hope it works for you and gets those lungs cleared of spots soon. He also had very little side effects on it. The worst was being tired and that is awesome compared to a lot of other drugs.

Keep us informed of how it works for you and I'll keep you in my prayers.

Karen

2/18/12-DX with Stage IV RCC that had Metastacized to his Lungs

3/15/12- Husband had left radical nephroectomy

5/3/12- Started Votrient

8/5/12- Scans showed a reduction in size of lung nodules

10/19/12-Scans showed reduction in lung nodules had doubled in size and he had new spots as well

10/27/12-Started on Afinitor (he had his worst side effects on this)

1/10/13-Hospitalized due to Malignant Pleural Effusion. Came off of Afinitor and 2 spots on his righ lung had doubled in size.

1/19/13-Started Inlyta (he goes back to the doctor this week for blood work but won't have scans for at least another month, the only side effect he has had is extremely tired. Let's hope it stays that way).

First, I wish the best of luck to Ron and Karen's Husband. I was interested to hear about the knee pain you suffered Ron.  I've had knee and thumb joint pains increased by treatment, I believe.  However, whether that has been caused by Votrient or by the BP med I was on (Amlodipine) I'm unsure.  Your BP sounds perfect now, but if the Votrient works for you I think you're pretty well certain to need one or more BP meds again.

Jeff, I got this scan report yesterday:

CT Thorax & abdo & pelvis with contrast

CHEST:  The lungs are clear.  No mediastinal, hilar or axillary lymphadenopathy.  Normal bony appearances.

ABDOMEN AND PELVIS:  Compared with the previous CT and PET CT scans of Septembe 2012, there remains an abnormality present in relation to the right anterolateral abdominal wall in keeping with the known FDG avid metastasis.  This measures approximately 40mm x 22mm but is now hardly enhancing peripherally and appears rather indistinct.

The necrotic aortacaval node remains also present and has not significantly changed.  No other interval change."

Several questions:-

1.  What does "appears rather indistinct" amount to?

2.  If the periphery is "hardly enhancing", does this mean I'm heading for the entire tumor becoming necrotic?

3.  To what extent will the necrotic tissue be resorbed?  Or will it just sit there, inert, and, if so, does it constitute a hazard of any kind?

4.  My CTscans have been reported in only 2 dimensions, my PET/CT in three - why is this? How do they map?  Presumably the longest axis in each is the read for the same aspect? But does the shorter measurement in the CT correspond to the second or the third PET/CT measure given?

5.  My pathology is highly aggressive.  It's chromophobe, turned "predominantly sarcomatoid" and "extensively necrotic" but there's no reference to necrosis in the above report, save for the larger of two compromised lymph nodes. Any idea why that would be?

6.  We have no baseline measures as at the time I started on Votrient, the CT previous to the current one was on 4th September, the PET/CT on 27th September and I started Votrient on 9th November.  We feel sure that the ab wall tumor grew between 27th Sept and 9th Nov but what would be a plausible estimate of how much? 

To summarise, the tumor was indiscernible when the previous met was removed on 30th March, was 25 mm x 18 mm on 4th Sept, 50 mm x 25 mm x 43 mm on 27th Sept and 40 mm x 22 mm on 24th Jan.  It's shrunk but what would be your guess as to the size it had reached by the time I began the Votrient? [My primary was estimated at 70-80 mm in mid Oct 2011 and by 5th Dec at nephrectomy was 90 mm. My first met was invisible on 5th Dec 2011, 10 mm by end of Feb and 25 mm at op on 30th Mar. so each tumor has been very fast-growing]  Obviously, we're keen to try to figure out how much the tumor has shrunk on the Votrient treatment.

Any expert light on the above issues would be gratefully received.

saintmont said:

votrient

Hi I'am new to this site. A brief history. Had Right kidney taken out sept 2011 two seperate tumor on the kidney 10x9 and 9x 7cm. Survalliane scan august 2012 months later found 5 nodules left and right lung. Put trail whitch was sutent (4 weeks on and 2 weeks off)and everolimus (5 weeks on and 1 week off). Handled sutent find skin dryed out. Everolimus Very bad mouth ulcers left with scars in mouth. being on it for 5 month months Dr not happy with results some nodules shrinking other growing. Starting votrient feburary. I have being lucky I play golf, ride my bike and walk the the dog. I am also working full time. I live in Tasmania, Australia.

After sunitinib and everolimus, you should find pazopanib a cake-walk - much gentler side-effects. I've just played Carnoustie, this morning in balmy conditions over 40 degrees - F.  of course! - but it may be a bit warmer there.  Is there still a lot of damage in evidence from the bush-fires, or is all back to near normal now? Hope you weren't affected.

saintmont said:

Votrient side effect

Hi, Bush fires still burning about 5 miles from where we live in the bush land around Mt Wellington, where they cant get fire crews in. The fire in Dunally destroyed over 100 properties but lucky no one die from the bush fire. A volunteer fireman died from heart attack while fighting the fires poor fellow. There is a lot of smoke around had gale force winds saturday which did not help.

I play golf at Claremont Golf Club which is right next to the Cadbury chocolate factory the smell can be quite nice going down the 1st fairway. Played saturday in the gale force winds temp was 25 celuis roughly 80 f.

I start on pazopanib on tuesday and have a blood tests at 2 weeks and 4 weeks to see how my bloods are going. I am going to take the 800ml dose at night to see how that goes. Any other advice on this tablet would be appreciated. Thanks for the reply Texas_ wedge.

Your bushfires are long out of the news here in the UK now (all about NHS problems and New England snowstorms at present) so I'm sorry to hear you still have that problem.

I envy you your first fairway experience at Claremont - at Carnoustie the major smell we get treated to (aside from seaweed at times) is burning rubber from a nearby location - the opposite end of the spectrum from chocolate in the way of fragrances!

Good luck on the Votrient.  Taking it at night sounds quite a good idea because it will enable you to easily stick to having it on an empty stomach.  However, just a passing thought:  I take it at around 6 p.m. which suits my daily pattern well.  I can't say for sure that it's the cause but I do sometimes find that an hour or two after taking it I get a disturbed gut and some flatulence which is relieved by having a meal.  So, I try to eat fairly soon after the 1 hour has elapsed following my daily dose (800mg).  With luck, if you're going to take it just before going to bed you'll simply sleep through any such effects and not be bothered.  As I said above, I think you'll find the side-effects won't be too bad.

saintmont said:

Votrient side effect

Thank's for the advice. I started on votrient tuesday night 800mg. Felt fine in the morning rode my push bike to work about 20 km round trip. Had long weekend last weekend for Regatta day had gastro for most of it a bad strain is going around a lot of nursing homes and a few wards at the hospital have gastro at the moment. Managed to play golf on the monday, weather was beautiful shot 80 had 7 on the 17 with a duck hook of the tee. Handicap down to 12.4 best I have ever being.

I don't envy you the smoke + winds but I do envy you the golf - don't know when I'll be playing again - it's been snowing continuously here for at least six hours now and looks likely to carry on for many more.  The day I shoot 80 with a 7 at Carnoustie I'll give up - meaning I'll quit while I'm ahead!

Keep us posted on your Votrient experience.  Some side-effects show up rapidly and may indicate a good response.   Others can take quite a while to build up.  I have a touch of diarrhoea today, after three months on it.  Mind you, that might be affected by a new blood pressure med added into the mix.  Also I had an anomalous response to a workout yesterday - finished a short rowing machine session with a sprint, breathing very hard and then checked my pulse a few minutes later.  I expected it to have dropped from, probably, 140-150 to, say, 105, so I was staggered to find it was 43.  It was back to a typical 57 this morning and I was relieved that my BP has fallen today to about 135/85, which delighted me.  However, I think it goes to show that with the targeted therapies + the ancillary drugs that may be necessary (e.g. to control blood pressure) careful monitoring is essential because events are very unpredictable. 

Liver enzyme levels are also crucial and I hope your oncologist will be checking you carefully in a couple of weeks time, and then again in another couple of weeks, to measure your reactions and side-effects.  You're obviously off to a good start and I hope Votrient does a good job for you.

Texas_wedge said:

Urinary problems
aldiyana has asked whether anyone here has suffered urinary blockage problems while on Votrient. I'd never heard of this problem as a potential side-effect of Votrient and I'm guessing it is due to something else in his case. A quick delve did, however, find a study dated today that reports on UTIs in patients on Votrient. The incidence was only 0.52% - 9 patients out of 1720.

http://www.ehealthme.com/ds/votrient/urinary+tract+infection

This is still a comparatively new drug so we're learning a lot as we go along. The two hazards that need careful monitoring are high blood pressure (which is usually controllable with BP meds, without interfering with the efficacy of the Votrient) and elevated liver enzymes, which are put into reverse by reducing the dosage/taking a break/ceasing to take the drug permanently. Patients seem to do well even on half dose or less and keeping the liver enzymes in check also doesn't stop the drug from delivering its benefits.

There are many of the lesser side-effects associated with many different types of drugs and some (fatigue and diarrhea, for instance) can prove very tiresome.

There are probably other ones that are yet to be assessed and a thread like this is a good place for us to collect info on porblems we may be having that aren't yet in the drug leaflet.

I noticed aldiyana's reference to her Husband having been relieved of a persistent cough, possibly thanks to the Votrient. I realise that I seem to cough less now that I'm on it. However, I'm feeling slightly catarrhal much of the time and have a bit of a runny nose and more frequent nose bleeds, though this could be connected with playing golf in sub-zero temperatures and gale-force winds

I also have mildy annoying dysphonia - i.e. effect on my voice, with reduced vocal range and some loss of timbre. I've read of at least one singer who has been troubled by a contraction of his vocal range.

One other possible effect I'm feeling is pain in some joints, particularly ones affected by old sporting injuries (quite a few in my case from various different sports). I believe this may be another side-effect that can be down to Votrient, but at my age it's not easy to separate it from the aches and pains due to arthritic onsets with the passing years and being in cold conditions. (Here, in my bit of N.E.Scotland, it's cold right now. with heavy rain and strong winds and we're expecting more snow soon - good chance of a white Christmas for some of us.)

Is anyone else on Votrient experiencing the urinary problem aldiyana mentions, or any of the marginal side-effects I've noticed?

i have just seen this reply from you...so sorry for not answering sooner...

first want to thank you for pointing my issue out...

its been a battle with this UI for months now after haveing 4 operations to get rid of it...hes finally doing better!...we are pretty sure it has nothing to do with Votrient...but more due to the catheter he had to use after his nephrectomy...but hes doing good...nerally done with his first cycle of 3 months takeing votrient...his hair all over the body has trurned grey and he his haveing high blood pressure...and just wnated to ask what everyone who is haveing this problem...which drug are u takeing for it??? so far his BP is usually around 150/105...while takeing his drug for high BP...he also is experiencing pain at the soles of his feet...anyone else have this???

his cough is gone!!!! thank GOD! ...and it has never returned again since on Votrient! soon going on his first check up...CT SCAN of lungs to see if the lymph nodes have decresed...but since he isnt coughing...its a good sign??? right???....

thank you yet again for your help

Just a quick update on mom.  Since starting 400 mgs of Votrient in mid December 2012.  Her blood pressure shot up very high 200/130.  She was already on bp meds but it was very controlled with a small dose before the Votrient. She also had the runs quite a bit which has left her severely dehydrated.  Her thyroid TSH is at 8 so slighty out of whack for which they gave her synthroid.  She is not taking it at the moment because that also makes her ill. For the thyroid she is balancing with homeopathi meds currently.  Getting back to her blood pressure, she tried several different bp meds and taking at one point three different ones together.  One gave her serious migraines so they swithced to catapress .2 mgs.  After a week on it the headaches went away but then her pressure dropped way too low and she was dizzy and the pills put her to sleep so she was sleeping all day long.  The doctor cut the catapress to .1mg  2-3x a day but mom has developed the headache again so we don't know how her pressure is fearing. We had a home cuff monitor and i purchsed the arm version.  Both of these were wrong and gave a much higher reading. We took both machines to the doctor and when tested the cuff gave a reading of 167/85 with a pulse of 45, the arm band gave a reading of 157/80 and pulse 53.  Her actual pressure was 116/63 and pulse 60. So you can see how it was way off.  They are arranging for a nurse to come to the home to take her pressure a few times a week. Which hopefully will start on Tuesday.

Besides this mom doesn't have an appetite and lost 11 pounds in two weeks.  i sure hope she has good scans on the Votrient because she was doing very well before she started and you wouldn't have known she was sick, in less than two months she looks like she is ready to give in. She also lost her voice and is not strong on her feet. Mom is 80 it is true, but she was a fun loving 80 year old without a wrinkle and had more energy than me at 50 and was very active in all ways.  But i am very happy to hear about the progress others are making with Votrient....

Any word on when any of the new drugs will be available?  I though the tibo (is that the name?) would be ready to be approved in July of this year.  

GSRon said:

Newbie

Hi All.. I am a newbie here... I got diagnosed with RCC last Feb, 2012... Had surgery mid March, 2012... Stage 3 - large tumor, and with invasion in to the Renal Vein.  Surgery went well, no lymph nodes removed...   All was fine until October scan showed small spots in left lung, too small to treat... yesterday spots in both lungs and are growing...  Suggested Votrient to start soon.   Hope it works... and hope I can afford it.. we will see...

FYI, on the BP drugs, I was on Metroprolol after surgery and it induced major pain in both knees.  Dr said not related, stopped taking the drug and pain went away in about a week... So this is a "new" side effect of the Metropolol.   Thought I would mention this in case this helps.

My BP was 120 / 70 two days ago with no drugs of any kind, but goes up and down... likely I will get a different BP drug when I start the Votrient...

I wish all of you well...

Ron - California

Oh my... guess I opened my big mouth a bit too soon...  I have been seeing a Cardio Doc as part of my preparation for the Votrient..  So, yes, my heart is a tad less than 100%...  Treadmill test this week... geeesh...   And yes, my heart does skip a beat every now and then....

So, what does the Doc prescribe..??  Yup Metropolol...  when I mentioned the pain.. she looked at me as stated..  "It does not do that... Must be something else"...    I promptly gave her one of those "looks"...  she mumbled a bit and said.. well... if it is a problem there are other drugs...

Yes, I can be a ahem bugger at times...  seems like it brings me joy to irritate the Doctors a bit...   

And I now have a copy of my recent medical records.. about 500 pages worth..!! 

Stay well everyone..!!

Ron - I don't want a pickle... jus wanna ride my motor sickle...

saintmont said:

Votrient side effect

Hi, being on votrient about a week, has anyone had thier creatinine levels raise while on votrient.

What change have you seen? (My guys use the more informative clearance rate, rather than serum level, and mine has been moving around between about 105 and 112, currently 109, relative to a normal range of 62 - 106 umol/L.  which is nothing to get het up about.  We'd expect it to be higher at age 70 and because I take more exercise than most people.)

You probably don't have a problem but you can always ask your doctors and I, for one, always encourage everybody to ask all the questions they need to, or even just want to.

osoyoosking said:

votrient side effects

Hi , I'm just new to this site, and I am wondering if anyone has had the same symptoms as my mom. she has renal cell carcinoma in the right kidney with small tumors in both lungs, she started on votrient 2 weeks ago and has had some wierd syptoms since then , she has a weak feeling  in both her legs and yesterday her temp went to 95 f. she had chills and felt extremely cold, she has high blood pressure and is on meds for it , so she didn't take any pills(votrient) this morning , she goes for blood work today , I am wondering if anyone else has experienced anything of this type and how it worked out , i think we should go to the hosp but she can be pretty stubborn.

Sounds like a fairly serious side-effect, calling for prompt attention. Her reaction won't help her BP either.  I think it  was sensible for her not to take her daily dose of Votrient today.  I'd want her to either go to the hospital or call her oncologist asap. 

mabanner20 said:

My husband Bob was diagnosed

My husband Bob was diagnosed in Sept 24 2012 with stage 4 renal with mets the bone.  He was started on votrient, but had to stop because of surgery.  He restarted Nov 7.  All was well until the end of the year when he started having neurological changes-tremors, troubling getting his words out. Had an MRI of the brain and an ultrasound of the carotoid arteries done and everything came back clear.  He then had a new onset seizure on the 28th, just as we were leaving radiation.  No answers have been given for this, we have completed all the tests.  Completely frustrated. No history of seizures in his family.  I know that one of the severe side effects are for TIAs, but aren't seizures in the same body system?!

Sorry for the complications. No Tia's or tie's (transient ischemic attacks/transient ischemic episodes) is short duration vascular blood flow that is interupted in the brain. May be from blockage or bleeding or arteriol  spasm. The area of brain tissue supplied by this flow suffer anoxia and symptoms occur. If the blood flow is not quickly restored, permanent damage can occur. Usually considered a stroke or cerebral vascular accident. (cva). A seizure is from mis directed electrical signals. Often overloading the brain circuitry. Both can be treated medically and at times surgically. Seizures result from something creating the misfiring. With late onset seizures, you look for the cause. Maybe injury, tumor or similar pathology. Some drugs can create the misfiring and resultant seizures. The system is under great stress. Here is hoping that it is only a tempoary problem.