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Votrient Side Effects

KJones1969
Posts: 158
Joined: Mar 2012

My husband started Votrient Saturday to treat Stage IV Clear Cell RCC and I wanted to see if anyone else has taken it. If so what side effects have you seen? Thanks

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

Kelly, hypertension is known as "the silent killer" because you don't get symptoms that warn you of high blood pressure.  Why don't you ask his nurse/doc what his BP looks like in the recent readings.  You can check BP yourself very easily - digital blood pressure monitors for use at home don't cost much and that way you could keep a close eye on your Dad's BP any time you want (I take my own BP on a daily basis, at home).  

Is your Dad on any BP meds?  If he's not, please find out what his BP is at the moment.  If it's unaffected by the Votrient, it's likely that the Votrient isn't working for him (it's a very good drug for a lot of people but not for everyone).  If it's not working then he'll want to get off it to save himself feeling rotten for no good reason and the sooner he switches to another drug the better.

However, it may be that his BP is higher and the Votrient is working, so the sooner you can find out what his BP is the better.

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Kelly,

As I stated in my response to Ron, John (one putt) is on a Nivolumab/Votrient trial. He has been very fortunate with his response, but we don't know if Nivolumab is the reason; if Votrient is the reason; or if the combo is the reason.

But note he has not experienced high blood pressure, and--while I realize elevated blood pressure--is often indicative of Vortrient's success, I don't think it is always the case.But do as Tex says and invest in the bp cuff. I DO NOT have cancer, but I do have high blood pressure. I was diagnosed many years ago when I started experiencing headaches and dizziness. So while high blood pressure is the silent killer, headaches and dizziness often accompany it.

Good luck to you and your dad. Chins up!

NanoSecond's picture
NanoSecond
Posts: 504
Joined: Oct 2012

Kelly,

I do not take Votrient and so have not paid very close attention to all its side effects.  And while I generally agree with Tex - his pointed statement about high blood pressure got me motivated to look more deeply into the issue.

This is what I found:

"Hypertension (systolic blood pressure ≥150 or diastolic blood pressure ≥100 mm Hg) and hypertensive crisis were observed in patients treated with Votrient. Blood pressure should be well-controlled prior to initiating Votrient. Hypertension occurs early in the course of treatment (40% of cases occurred by Day 9 and 90% of cases occurred in the first 18 weeks). Blood pressure should be monitored early after starting treatment (no longer than one week) and frequently thereafter to ensure blood pressure control. Approximately 40% of patients who received Votrient experienced hypertension. Grade 3 hypertension was reported in 4% to 7% of patients receiving Votrient [see Adverse Reactions (6.1)]."

The above and lots more important information can be found here:

http://www.drugs.com/pro/votrient.html

Hope you found that helpful.  And, in particular, sufficient reason to wait until jumping to any conclusions about whether or not Votrient is working.

GSRon's picture
GSRon
Posts: 1124
Joined: Jan 2013

Hi All..!  As an aside note.. the last few days I have been real busy doing something for ME... that is racing my little motorpickle..  What is interesting is that most of the side effects kind of held off, until I got home... then bang..  My take is that I was running on adrenaline.. and thus was able to function at a pretty high level for the two plus days..!   When I got home, almost instantly I had sweats.. and diarrhea...  Took a warm shower and drank a bunch of water, then slept..  My BP was not overly high...   Today mostly had the diarrhea.. took an Imodium and am a lot better...

As an extra aside, talked to a pal at the track, he has E.C.  Esophogial..? (can't spell that word..)..  So it does not take much to find out lots of people I know have the Crud in some version or another... sigh..

Just hope it works for everyone on it..!

Cheers.!!

Ron

foxhd's picture
foxhd
Posts: 1855
Joined: Oct 2011

Keep on riding Ron. People speak of my attitude but I don't have anything over you. Maybe it is the motorcycles? I do know that I won't be racing. I will be out camping with my bike for most of June. Take care of yourself. Fox.

GSRon's picture
GSRon
Posts: 1124
Joined: Jan 2013

Yes, Fox.. I do think having some important hobby in our lives helps us to move forward..  Does not matter what the hobby is.. it helps..  But then, I do also think us bike guys (and gals) have a special bond with the open air and we see the countryside a bit differently than others..  You take care as well... keep riding..  Both of my street bikes are down for repairs... I need to get to the garage and fix them..  The olde bikes often need repairs.. they NEED me..!

To the rest of you.. keep doing what you love..   The last few days there were times that I almost forgot about the RCC...  I felt "normal" for a while..  I hope this works for all of you as well...

Be Well...

Ron

BLKJAK
Posts: 108
Joined: Apr 2013

I've been on Votrient for a week now. Week 2 begins tonight for me. I have had my blood pressure go up a bit, but that's about it for side effects. I have a bit of loose stool, but that might be attributed to the Buffalo Wing Pizza I had for dinner. TMI perhaps? If it continues, it will be the second side effect from Votrient. So far, so good. I hope the other side effects never present themselves.

I have been using the MAARS program and hopefully that is helping to get this damn cancer out of my body. I haven't been allowing cancer to get the best of me. I show it no respect and it needs to know it's not welcome here. I really want to prove the first oncologist wrong and live a nice long life.

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

Please go right on, full steam ahead, and do just what you're planning.

moe1131
Posts: 8
Joined: Apr 2013

 BLKJAK,  glad to hear you don't have too many side effects from the Votrient. I start Votrient in a few weeks I just had surgery to remove a tumor so I have to wait until I'am healed. I was wondering what dosage you are on I'am suppost to start at 800mg 4tablets which I plan to take at night. I have been on the site and reading about the side effects of the Votrient which has been very helpful so I thank all, and hope I will not have too many.I have good blood pressure so if it goes up a little i'am not to worried. I don,t have renal cancer I have Leiomyosarcoma cancer of the smooth muscle some people with my type of cancer have had good results on the  Votrient. I'm hopeful and thankful there is something else to try besides chemo. thanks 

saintmont
Posts: 39
Joined: Feb 2013

Hi all, Had my CT scan last Tuesday, saw my oncologist thursday the scan were good all nodules are shrinking, I haven't got measurements my oncologist show us the scan so we could see the difference. As for side effect still trying to get my BP under control, a little bit of diarrhea sometimes and slightly sore feet. I take 800mg mid morning and still work full time.

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

Congratulations and keep up the good work!

BLKJAK
Posts: 108
Joined: Apr 2013

I am taking 4 tablets (800mg) every night at bed time. I have started to allow myself a little TV time to settle in before starting the MAARS audio program. I don't have any nausea that I know of and have yet to have a side effect other than the rise in blood pressure that I can absolutely say is because of Votrient. Today I have some soreness in my lips. I don't know what that's about but am applying Carmex to treat it.

Good luck to you! Stay positive!

moe1131
Posts: 8
Joined: Apr 2013

Hi BLKJAK, thanks for getting back to me good to hear your still at 800mg I will look into the MAARS not that familiar with that program. It helps to hear how other cancer patients are doing on this site. I will let you know how I'm doing once I start the Votrient I think in a week I'am ready and very positive this drug will help. Do you still work ?

 

BLKJAK
Posts: 108
Joined: Apr 2013

Yep, I am still working. I am a network engineer so my work doesn't involve much lifting or moving. It's definiitely more mental than physical and I'm grateful for that. The owner of the company is very compassionate about my situation. He told me that if I am tired I should go home and take a nap. I am pretty lucky overall.

moe1131
Posts: 8
Joined: Apr 2013

Hello BLKJAK, I plan to continue to work I work at a hospital so I also have very understanding supervisors and team members who are great.

Sorry to hear about the blood in your urine, but it very well could be UTI I had a few of those and there awful.

 What I have gathered from this site and the Sarcoma Allinnce site sounds like many have had to have their dosage reduced while on this drug, cannot sustain the 800mg. I have to question whether I should start out at 800 mg ? My Oncologist does not have any other patient on this drug. Please keep us posted on how your doing stay strong it's another bump in in the road. I won't start thr drug for another three weeks.

 

 

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

Moe, I'm interested to know what led you to this forum - was it because Votrient is being used for both disorders? 

Leiomyosarcoma is even rarer than the cancer variety that most of us here have and it doesn't have any connection with kidney cancer as such, does it? I'm aware that the difficult differential diagnosis between GIST and leiomyosarcoma was only firmed up very recently, when it was discovered that the treatment for the two entities is very different (much like the various types of RCC, where who should get what is still, as yet, just guesswork).  As I feel sure you discovered, there are a couple of CSN threads that at first glance look more appropriate but one has become irrelevant since the distinction between Leiomyosarcoma and GIST became established and the other, on leiomyosarcoma, has been inactive for the past three years. 

So, it makes sense for you to join us Votrient takers on this forum.  Has Votrient been used much so far for your malady? Of course, generalisations have limited value for individuals - we're all so different - but I've noticed that Votrient seems to be much less dose-dependent than, e.g. Sutent and lots of patients seem to do fine on much lower doses of Votrient - right down to 100 mg/day in some cases.  One important factor is your existing liver function and there has been a recent trial on this matter, looking at the tolerability of pazopanib (Votrient) for folks with different levels of liver health.  [Phase 1 Study of Pazopanib in Patients with Advanced Solid Tumors and Hepatic Dysfunction: A National Cancer Institute Organ Dysfunction Working Group Study] ['Hepatic' meaning liver.]

The trial seems to have established parameters for dose level, at least as far as liver health is concerned:

Conclusions:
In patients with mild liver dysfunction, pazopanib is well tolerated at the FDA-approved dose of 800 mg per day. Patients with moderate and severe liver dysfunction tolerated 200 mg per day.

This may have relevance to your question to BLKJAK, although I don't know what the ramifications are about the efficacy or to different variations among individual patients.  However, it does seem to suggest that the drug is still useful even for patients for whom a lower dose is advisable.

moe1131
Posts: 8
Joined: Apr 2013

Texas _ Wedge, I came to the site because I was trying to find out more information on the

side effects of Votrient that individuals were actually having and how they tolerated the drug.I read all the side effects

listed by the drug company glaxo smith klein which some seem to be very frighting I know they always have to list the very worse.

I'm not exactly sure how they figured out Votrient works on other Sarcomas Leiomysarcoma and Synovial sarcoma,but I'm glad there

  is another option. I have been on the Sarcoma Alliance site also which my partner found after I mentioned this site.

I have been in contact with a person who has Synovial cancer and has been battling this cancer for twenty years who is now on

Votrient a  very strong women who has been a inspiration to me since it's only been two years for me. I see you are very active on

this site with very good advice and knowledge thank you and thanks to all the site is very informative. I will keep in touch.

BLKJAK
Posts: 108
Joined: Apr 2013

I know it's hard to believe, but I think Votrient has made me better looking. :) Seriously though, no real side effects other than elevated blood pressure from being on Votrient for 8 days now. I had what I thought was diarhea from Votrient, but it has cleared up. Must have been the Buffalo Chicken pizza I ate. I am getting more sleep at night since being on Votrient and using the MAARS program. I spend less time watching TV in bed and actually sleep now. 

I am staying positive and not giving cancer any respect. It's not welcome in my body and I want it out!

saintmont
Posts: 39
Joined: Feb 2013

Hi BLKJAK, That is the right attitude. I know we all think about it but we don't let it run our lives. We can all have bad days, but we can also bounce back and tell this cancer I'm running my life and not it. By the way I have got the white hair.

BLKJAK
Posts: 108
Joined: Apr 2013

I agree on the bad days comment. I was doing great for over a week, then yesterday I had pain in my left side and blood in my urine again. That took the wind out of my sails. A good night's rest works wonders though. I can't let it get me down.

angec's picture
angec
Posts: 614
Joined: Mar 2012

Blkjak perhaps you an a uti infection.  Please be sure to see your GP and also maybe a call to your oncologist?     I hope you feel better!  Keep up the positive attitude, a good looking person such as yourself won't have it any other way!! ;)

 

 

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Perhaps that blood in urine is a UTI but don't dismiss it. Make sure you give your doctor a call and let him decide if it should be a wait and see situation. He may well want to see you. Err on the side of caution - Please!

 

Keep us posted.

BLKJAK
Posts: 108
Joined: Apr 2013

The blood in my urine is what started this whole thing. No UTI or kidney stones were noted. It comes and goes. I was told it could be from the cancer and that blood in the urine is a sign of kidney cancer. It's not all the time. If I do too much moving (lifting, twisting, bending) it might happen. It cleared up pretty quickly this last time. I'm not sure what's causing it, but no one seemed overly concerned.

BLKJAK
Posts: 108
Joined: Apr 2013

and I have my first side effect. I have had my sense of taste change a bit. Foods aren't as flavorful as they once were. I have read that this comes and goes, so if that is true it's no big deal. No other side effects have been noted. I just got a call from the insurance companie's pharmacy for my next month's shipment. So far, so good!

Hope everyone is doing well kicking cancer's arse!

GSRon's picture
GSRon
Posts: 1124
Joined: Jan 2013

Hi All..!!

OK, a short recap.. Dx Feb 2012, Radical Neph on March 15 (yes the Ides of March..).  Clear scans until Feb 2013, started Votrient March 1, 2013.  5 weeks later had high Liver Enzymes (almost 1,000.!!), took a 17 day hiatus, liver recovered.  Been back on the Votrient for 5 weeks now..  NO scans yet.. 7 more weeks until I get scanned...

So, typical side effects, fluctuating blood pressure, diarrhea, major fatigue, hair color (what little I got) changed, weight loss..  This time I also have some skin peeling.. overall not bad...

 

Also, on the Liver Enzymes, one way to tell if your Enzymes may be elevated is to look at the color of your pee.!  If it is more orange in color, then I would suggest you get checked out...  My Dr today confirmed that is a reasonable "do it yourself" Dx.

Be Well All...

Ron

BLKJAK
Posts: 108
Joined: Apr 2013

I have white hair. I normally have my hair cut short, I use a clipper with no guard every 4-5 days for reference. Well, it was 5 days and I didn't "see" the typical stubble. That is because it is WHITE! I was so hoping to miss this side effect. Maybe I can grow out my hair and beard and be one of the youngest Santa's in the mall this coming winter? Man that side effect came on quick. No indication it was coming. Just BAM - white hair. (Sigh).

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

Wow - that's fast - let's hope that it indicates that the drug is also having a marked therapeutic effect already, as well as setting you up for Christmas.

BLKJAK
Posts: 108
Joined: Apr 2013

I cannot believe it myself. Oh well. Like you said, hopefully this means that Votrient is kicking Cancer's arse and kicking it hard!

angec's picture
angec
Posts: 614
Joined: Mar 2012

I can't remember if anyone complained about their tongue being sore without having any physical sores that can be seen.  Anyway, my mom who is on 200 mgs of Votrient seems to be losing weight fast.  Besides the food having no taste, she said her tongue burns when she eats. Although she says she does have an appetite, she won't eat because she can't/doesn't like the taste.  Does anyone have any suggestions? She is using plastic silverware too.  Is there any meds for tongue sores? The doc looked in her mouth but saw nothing.  Scans in July.

 

Love to all and keep up the fight!

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

Ange, snap.   I've been given the above which helps with the mouth sores and the burning tongue. The active ingredient is, I think, Benzydamine hydrochloride - it's for gargling not swallowing and gives pain relief.

As of last night I've started getting a sense of taste back again, but that's probably due to being off Votrient since Thursday past (as is no nose drying, crusting and bleeding, less bloating, making it easier to eat more and less tumour pain and diarrhoea - but that's in part thanks to switching codeine for paracetamol, the former also being a treatment for diarrhoea).   I hope Mom can manage to eat a bit more and stay active.  My weight loss has stopped since coming off Votrient and if I can get back on it I'll doubtless nedd to try a lower dose.

angec's picture
angec
Posts: 614
Joined: Mar 2012

Thank you TW!  Where would i get this item? Is it over the counter by the way?  If not i will call the doc and ask him to prescribe it although if he listens it would be a miracle. He gets angry with me and says I play doctor and do too much reading on the net. Oh well!  LOL  I don't play doctor, i read and ask questions, that might be a bit much for those "God" like doctors!  Good thing he laughs and jokes when he says it, cuz i can see the anger flare up!  

How long will they keep you off of it?  Yes, you need a holiday from it to give your body a chance to heal a bit so to speak. Mom was off for three weeks and was so hungry she gained back 7 pounds at that time, but lost it again.  Maybe if her mouth stops burning it will help, so thank you much for the info.  How much weight did you lose TW?  I also think a lower dose will be warranted.  Any chance of you getting into any trials my friend?  Praying for  you!  '

On the positive side, mom has been getting back to being active a bit. She has been cleaning and cooking (great Italian meals i hear!) and moving about.  The 200 dose sure does work better for her, i hope and pray she does well with her scans next month. She was having increasing pains in her stomach and i was a bit worried but found out she once again has a uti. She seems to continue getting them go no avail.  New round of antibiotics for her.

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

Ange, after a  bit of searching online, I see why you haven't come across it.  It's used in medically leading nations around the planet but doesn't seem to be readily available in the US.  Perhaps you can find someone knowledgeable to help - maybe a good local pharmacist could tell you more?  It's a good enough med to be worth pursuing. 

Glad Mom is picking up a bit and getting more active - that sounds like very good news.  If the UTI problem can be knocked on the head maybe she'll continue to do well on 200 mg/day of Votrient.  I hope you are a bit better youself and looking after yourself as well as everyone else!

I'm hoping to get back onto V. sooner rather than later, maybe on 600.  As things stand at present, there isn't a trial of any kind that I could qualify for - hence the hope to get back on V - asap!  Chances are improving (will update my Blog later today on last couple of days' events).

As you know, I'm a native-speaker of the Fox Language! I'll illustrate:  I have final stage cancer; I have sporadic stomatitis and bouts of gastric problems etc; on Sunday I suddenly contracted what turned out to be a potentially fatal infection and couldn't walk for a day or so; my CRP yesterday was 27  (normal range 0 - 10); today I'm somewhat dehydrated and I'm radioactive from a full-body bone-scan this afternoon and have been having pain from a shoulder muscle (pulled at golf).  Someone asked me how I am and I promptly replied, in Fox, with 

"I'm fine!  How are you keeping, I gather you've been suffering from a heavy cold - I hope you're feeling better." 

Have to think of our friend Fox whenever such an incident occurs!

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Ange - Glad to hear mom is improving on the lower dose of Votrient. 

When John developed mouth sores recently, Votrient was discontinued for a week and he was prescribed Chlorhexidine Gluconate (0.12%)  oral rinse. It is the same rinse prescribed to me when I had a root canal a couple of years earlier. It is obtained through prescription and is basically an anti-bacterial rinse,  but-- if you can't get your doc to write--you might try your dentist. Both John and I found it to be rather soothing and refreshing. 

Will keep fingers crossed for scans next month.

 

 

 

 

BDS's picture
BDS
Posts: 90
Joined: Aug 2012

On July 28 2012, I took my first 800 mg dose of Votrient after having my left kidney removed on June 11, 2012. Yesterday, I had my appointment with my oncologist at Fox Chase Cancer Center to review my latest scans taken on June 12th. After almost a year all my metastatic tumors have decreased from their original size and no new tumors have shown up. (Yeah!Laughing) A couple of the tumors are now starting to appear less dense – supposedly that is a good thing. My oncologist was very pleased with my progress so much so that see does not want to see me for four months (Oh I feel SO rejected!).  If all goes well next year I will still be on Votrient and have additional good news to report. During the past year the most difficult side effects have been diarrhea (Not FUN!) and a bit of fatigue. Otherwise, my life is pretty much back to normal, I am still working full time and still exercise at the gym three/four times a week - treadmill, weights, swimming and yoga.

So here is to slow and steady progress – Life is Good! - BDS

Tortise

 

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

What a great way to start a weekend! Congratulations BDS -- job well done (in many ways). Here's to more TUMOR shrinkage or--even better--disappearance!

 

Now we just need to get Tex back on track! You reading this Tex!?!?

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

You betcha Alice!  (Have just responded to Robin with some detail re me and updated my blog. Latest bulletin - nearly 1 a.m. about to retire with hefty pain meds and antibiotics - should sleep tonight, at last.  Going to Edinburgh tomorrow with much to do so need some sleep.)

Wonderful to read BDS, and couldn't happen to a worthier guy (and it's good to see that you come out of your shell occasionally!).

GSRon's picture
GSRon
Posts: 1124
Joined: Jan 2013

Hi All..  OK, so yesterday was interesting..  I take my blood pressure twice a day.   Typically it is slightly high in the morning which is when I take the BP med Metoprolol, and about an hour later my BP starts to decline.  But yesterday it was different.. my BP kept climbing.. sheesh.  Three hours later it was still over 165 / 95.  So, I got out the super pill Norvasc and another two hours still high.  Finally around 4 PM my BP started to drop and by dinner time I was in the OK zone.  FYI, when my BP is just medium high I get a headache.   Today it all was back to the usual routine.  Oh yes and a couple of times over the last few months, my BP would go ultra low..  This just means it is good to monitor your BP at least twice a day while on Votrient.

Be Well All..!

Ron :)

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

Ron, the point of monitoring closely like this is to have important info available to your care team AND to act on it when necessary. 

It sounds to me as if it's worth considering a change of BP meds to look for more dependable control.   I was taking Amlodipine - never again (and it nearly killed me with a burgeoning delayed allergic reaction) and it wasn't doing much of a job on my BP.  I was switched to the lowest dose of each of two other meds with different mechanisms of action and they give far more effective control with neglible side-effects, so far.

GSRon's picture
GSRon
Posts: 1124
Joined: Jan 2013

Hi Wedgie..   Since like February, this has happened twice.  The BP meds are working.. just a blip in the road...  :)   This morning I am at 125 / 72, and that is before I took my BP meds.  If what others have said, this just is a good sign that the Votrient is working.. hope so.. I get my first scans on July 5th...

Ron '-'

Thomalexa's picture
Thomalexa
Posts: 6
Joined: Aug 2013

Hello, 

I'm probably not posting this right, but I'm new to all of this. I'm a 37 year old male and I was diagnosed with RCC via scans in March 2013. The doctors say there are multiple tumors on both kidneys and the first doctor said they wanted to yank out both of my kidneys. Needless to say, the prospect of that freaks me out a little. After getting a confirmation of cancer via a needle biopsy, I am now on votrient. I've only been taking it for about 3 weeks. No side effects to report, thankfully, but I did notice today my stubble is turning white. Other than that, I have a hard time falling asleep at night these past few nights....a lot of back pain. 

I'm really praying this is a sign the medication is working. Other than this, I have no health problems. I'm still working and doing all of my normal activities, but I do feel tired from time to time. I'd rather avoid surgery if at all possible. I've just seen too many instances of people getting surgery and then just going downhill from there. 

I did have the genetics test for VHL and that came back as positive. So, I guess that means my body has a higher risk of developing cysts that can turn into either benign or malignant masses. 

I go in for scans at the end of the month to see the progress of the medication. I'm quite scared. I have a family and I'm the breadwinner as well. 

I appreciate any thoughts, things to look for, and general experiences that you (or anyone on this thread) can share. 

 

God bless, 

 

Thomas

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

Welcome here Thomas.  There's no denying you're in a tough place at 37 but you seem to be holding up well and approaching it with courage and resolution.

It's too early to say much at this point and the scan will be crucial for further information.  I just want to say two things - it does sound as if Votrient has started to get to work for you AND all the indications are that it's a drug that's having huge success for a rapidly growing number of patients - we're hearing great stories of big successes with it on an almost daily basis lately. 

Stick with us here and keep us posted on developments and we'll give you all the help we can. 

Thomalexa's picture
Thomalexa
Posts: 6
Joined: Aug 2013

Texas, 

 

Thank you for your well wishes. I did meet with the oncologist and they wanted me to be on the medication for longer than four weeks, so they've extended this to an 8 week treatment. I'll have the scans sometime in the middle of September. 

Thomas

BLKJAK
Posts: 108
Joined: Apr 2013

I am so happy for your good report!! It really gives me (and other newbies to Votrient) a great sense of hope. News like this really lifts my spirits and brightens my day. Thank-you for posting, and here's hoping for continues success on Votrient.

saintmont
Posts: 39
Joined: Feb 2013

That is wonderful news, keep going with good work.

Michigan420
Posts: 1
Joined: Aug 2012

Side effects very from what I see, my wife has been on it since Dec 2012, each cycle can bring or take away differnet side effects, or same ones.

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

Yes, that seems to be a common feature of the new targeted therapies - you never know what you're going to get and can't predict from one cycle to anther!   However, Votrient differs from, e.g., Sutent,  in that there aren't actually cycles as such at all because it's given continuously other than with obligatory breaks necessitated by adverse events.  What side-effects does your Wife have - not bad I hope?  She's been on for a while now so have her liver enzymes given any trouble?

redddog
Posts: 6
Joined: Jun 2013

Hello all.

Just checking in with my story. We have a 12 year old son with malignant peripheral nerve sheath tumor(mpnst). He's been fighting for 5 years and last summer was dignosed with recurrent mets. Went through a hellacious few rounds of Irinotecan/Temodar (if you haven't heard of it, you're lucky) and is now on Votrient.

We don't know what to expect but are hoping against hope that this is able to buy us some time. He's starting his second month and we've just learned of the high blood pressure. 138/98 last time we checked and the Drs ordered him to stand down on ANY activity until they see the nephrologist, which is today.

As far as other side efects, he's had some thinning hair (not white), a bit of nausea, some vomiting etc. NOTHING like the hell that was Irinotecan or Docirubicin/Ifosfomide (when he was originally treated 5 years ago).

The other really bummer side effect he's experienced on this is blurry vision. He's been experiencing that after about the first week and is seriously bumming him out. I'm kinda hoping that the vision issue could be a side-effect of the high blood pressure and could be cleared up which BP meds but I don't know.

Any ideas what BP meds they will talk about? Obviously, looking at something with the best side-effect profile is our goal.

Thanks all and I hope you don't mind me crashing your RCC club.

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

reddog,  I post here quite a bit so there are many fellow members who can confirm that I'm not an alarmist by nature.

However, I would urge you to have the vision issue investigated absolutely immediately - it can be a highly dangerous side-effect that's taking place.  Please don't delay in getting expert advice about it.  If it turns out to be nothing serious I'll be delighted but please don't take any chances!

 

 

redddog
Posts: 6
Joined: Jun 2013

Sent you a PM.

Now I'm scared.

redddog
Posts: 6
Joined: Jun 2013

Well, I think I found what you were talking about. RPLS, right?

It would be just his luck to have this happen to him. Unbelievable.

Who would you suggest I ask to spearhead this because the idiot Onc Doc made no mention of it. Would the Nephrologist know or the Ophthamologist?

Thanks for the heads-up. From what I could find there really aren't many cases of this and Votrient, right?

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