Votrient Side Effects

Jean Chen said:

falied with Sunitinib plan to start with Votrient
My father was diagnosed with kidney cancer of stage 1 RCC in my high school graduating summer. At that time,my family especially my mother felt all the way darkness in her life. In China, maybe this bad news meant that I could loss my dear father when he was only 45 years old and I could not get to my college as both of them needs a lot of money. But we still did not faced with the worst situation, the following two years the cancer got to the lungs one of the adrenals, and now the bones after the nephrectomy.One and half years , Sunitnib faided just goes like my guess and now I plan to start with Vortrient which may ease the crazy cancer cell. Anybody who wants to know the side effects or the effect of Sunitinib can contact Tracychen002@hotmail.com
I wish our experience wil give you courage.

Jean, sorry to hear that your dad didnt do eight with the first treatment.  Votrient might be Bette although not sure it works on the bones. Did they offer him radiation for the bones?  Is there any hope of going into a trial for Nivolumab or MDX/BMS?  They call it by all different names. You might be able to look into where you live.  I pray well goes well and he is at a good hospital where they have alot of expertise with RCC.

my mom 80 started Votrient about ten days ago. Her blood pressure shot up to 200/110 and that is with already taking the meds for it before she started.  They lowered the dose to 200 and now back to 400 but it looks like that will be the max for her. They have her on norvasec 5 mgs am/pm and metoprolol and lysinipril.  Her pressure still remains high. She has water retention in ankles, headaches, leg pains, some loose stools and no appetite. A bit difference from being on homeopathy for almost a year and looking and feeling great!  Such a shame. One thing she noticed is that her sugar levels are lower and she has not needed to take her insulin some days. I have not heard of that before. We don't see the doctor until the 17th.  But her gp she has been in to see but he hasn't taken any blood tests so worried about that.  I sure hope with all of these side affects the meds prove useful to her.  

Texas_wedge said:

Latest?

Ange, what's the news on how Mom is doing?  When will Dr. Motzer's input be accessible?  How are you getting on yourself?  When you have a moment, how about that photo - is Jaden too shy for you to put that pic of you with him up again - it was so sweet?

On another thread, Pink Sugar has just posted:

"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!"

Pink sugar, you seem to be very unlucky in suffering much more severe side-effects than most people on your trial (and most people under Votrient treatment).  Do you know if the doctors know whether there is any gender difference in response to the drug?

You said that going into the trial was a no-brainer, but there is no evidence that the drug has any effect in preventing recurrence and since no other drug has been found to have, it seems very unlikely that it would.

Did your doctors suggest increasing the dose to lessen the side-effects???  It's generally thought that both efficacy and side-effects actually increase with increased dosage!  You've dropped back to 600mg.  If you keep getting bad side-effects, you should maybe drop down to 400mg. - many seem to do very well on that dose level and also shrug off most of the side-effects.  That may be worth discussing with your medical advisers.

On reporting: do you know the procedures for appraising side-effects, Statesside? (I'm in the UK).  I would think that after gathering info. on side-effects that might, or might not, be due to the drug, care would be taken to try to establish whether or not they are due to it. Most drug info sheets attempt to classify side-effects in terms of frequency of occurrence, and there are also sites which indicate whether some experiences are possibly due to the drug but where the jury is still out.  Can you (or others here) tell me how this problem is dealt with in the US,  i.e. avoiding having experiences wrongly attributed to the drug when they may have another cause?  Presumably great rigour is necessary, since it will be very much in the manufacturer's interest to try to find a different cause, to exculpate their own product.

angec said:

Hello all, TW. I am sorry for

Hello all, TW. I am sorry for the lack of update. It is not for the sake of trying. I have posted lenghty replies only to get lost in error land. Most times i cannot even get on. Well, we have had the flu for two weeks now so there went my ambition to keep trying to post.

 

Mom is doing a little better with the pressure. They added a 5 mg pill in the am and pm an upped one of the two others she takes in the morning. Leaving out the names now because i am tired and can't remembr off hand. But it is the one that CaptMike mentioned with the N.  She has swelling ankles on and off, fatigue, lack of appteitie or taste, voice goes in and out.  But the symptoms are tolerable and come and go, they are not present all the time.  She does have to figure out her pressure though as it is still a bit too high, but not as bad as before. She see her oncologist for the first time on Thursday but has been phoning him regularly when issus come up. And he is speaking with Dr. M from sloans i believe.  Her belly pain has gone away and the cough she had also slightly has gone away and she says her breathing is better a bit. We have to check into the bp meds she has taken for a few years, we found out it causes the breathing issues as she has been out of breath since before the rcc and her heart is fine. The lysinipol is the one that causes issues and i know i don't have the name right.  If anyone is on it and has breathing issues, dizziness etc, it can be the reason as a good friend was on it she said she suffered like mom and they changed it and in two week was feeling better.  But check with the doctor on that.

No pic yet.   I guess i have a phobia about putting pics up.  But i will work on it. LOL!

 

TW, i always enjoy your posts and would not like it very much if you shyed away! You are a very intelligent man, a lawyer, and you say things matter of factly but it doesn't mean you are insulting anyone.  Sometimes when peope have bad days or are not themselves they can see things differently, but i appreciate all you do and your posts are very valuable to us so please, keep them coming.  I posted on your bog as well.

For everyone one out there fighting the good fight, keep on going, be positive and strong and let's make each day a good one.  Don't forget to smile and remember that we are here for each other.  Prayers for everyone and big hugs!  xxoo

So annoying that when talking about disease 'progress' is good but 'progression' is bad!  Thanks for the update on Mom - it sounds to me as if she will get good results and the side-effects will be manageable, with care, and it sounds as though she is geeting the level of care she needs.  If there's a useful working relationship beteen her front line doctor and Dr. Motzer that's great.  You're always there for her but I guess you'll not be physically with her with the 'flu'.  Sorry to hear that you, Henry and Jaden are all down with it - please say hi to everyone for me and tell them I hope  all are in better health soon.  Make sure you don't rush your fences in trying to get fully back to things - I've seen the cost all too painfully (we've discussed ME/PVFS and fibro in the past).

I suppose there will be a lot of viruses doing the rounds at present.  The hospitals I will be in, in the next couple of weeks, have both had several wards closed due to norovirus - the 'winter vomiting virus' - not what one fancies on top of cancer!  I called to confirm that my golf Winter League was on this morning and not affected by snow and was told 'yes, although it's raining'.  It's about a forty minute drive there; I got delayed by a heavy nose-bleed and called when part way there to say I would be a little late.  The organiser told me that since we'd spoken the snow had come on and the whole course was white and unplayable and I might as well head back home, as I did. I'm looking out of the window now and it's started here.  We're told to expect it will get sharply colder in the next few days and may be about -10C inland tonight with consequent dangers on icy roads.  Having never needed to visit doctors or hospitals until recently, I'm suddenly discovering the possible real problems when one needs to!  I hope your Family isn't too affected in that way.

Your Mom and I seem to be having very similar responses to Votrient, although I'm presently spared the fatigue and loss of appetite and taste and also the edema due to BP med is only slight and varies, like hers.  She strikes me as very courageous and I so hope she continues to improve. Do you think she might need an appetite stimulant at some stage? However,  if her sense of taste recovers maybe that will solve that problem.  I was delighted to hear her cough is improving and her that her breathing can be improved by a change of BP meds - that seems to be a bit of an art and getting the meds right can be very helpful.

The point about your Mom's sugar levels is interesting and is, perhaps, worthy of further enquiry? With that extra dimension of diabetes, careful management is obviously necessary but it's good to hear that the change is in the right direction at the moment.

I hope you'll all take due care in getting over the 'flu' and that you'll eventually get brave enough to put up a nice family pic for us!

angec said:

TW  would hate to say that a

TW  would hate to say that a nose bleed is good, but in this case it was. It saved you a trip on a cold snowy day. How are you doing now? Did you find out if your plateletts are lower? Mom's are a litle lower than the lowest on her tests. The doctor said her blood work was fine which surprised me. He also said her first check up was good but to see if she can get a handle on the  pressure so she can take at least 600 mgs.  He said her chest seems to sound better than the last visit and she is coughing less and able to get around more.  I can only hope and pray the meds are wworking.  She has been getting nose bleeds but light though daily, water retention in feet, no taste in food though she does have an appetite but stops eating because the food tastes like metal.  She has some fatigue and at times headaches and daily lose stools on and off. Immodium ad has helped her today.  Her eyes seem to bother her and she does have some swelling there too. Her pressure stays up a bit but am not sure if it is the wrist cuff so i ordered the arm one for her. At the doctors office her presssure was 126/78 which was great, at home it is about 165/88 so don't know if it is right.  Over all she says she is ok, although i dont' like the way she looks since she is on the meds.   Her scan will be in March sometime. When do you get yours?  I hope you are doing ok. Love to all!  PS i hate the new boards, wasting alot of time doing nothing...

Can't agree more with you about the boards, Ange.  Last night I gave up after a while - couldn't get on at all.  I think there was probably a bout of unannounced maintenance work going on.  For me this morning, though, with only 7 members online (you'll all be asleep in the US?) it's working fine.

I have a CT with contrast in two days time, then a physio appt next morning; following week bloods at GP and on Friday (Feb 1) will see Angela, my onc, and get the scan results and the bottom line on what's happening.

I'm glad to hear how well your Mom is doing - she really does have what it takes, doesn't she! I think you're right about the home monitor, given the excellent measure at the doc's office and I'll be interested to learn what figures she gets with the arm cuff monitor.

As regards the food, tell her to try using plastic cutlery - I read recently that, as against normal metal cutlery, it helps to reduce that metallic taste in the mouth.   Must be worth a try?

Not wanting to worry her, or you, but I'm a little concerned about her eyes.  There is an unpublicised adverse effect with Votrient that merits further enquiry.  Rather than bother you with details, may I suggest that you get Robert Motzer's input on the matter?  Can you tell me a little more about the way in which her eyes are being affected and also why you say you don't like the way she looks?  I hope there's no problem and that she and I both continue to do well on Votrient.

Texas_wedge said:

Votrient side-effects

Can't agree more with you about the boards, Ange.  Last night I gave up after a while - couldn't get on at all.  I think there was probably a bout of unannounced maintenance work going on.  For me this morning, though, with only 7 members online (you'll all be asleep in the US?) it's working fine.

I have a CT with contrast in two days time, then a physio appt next morning; following week bloods at GP and on Friday (Feb 1) will see Angela, my onc, and get the scan results and the bottom line on what's happening.

I'm glad to hear how well your Mom is doing - she really does have what it takes, doesn't she! I think you're right about the home monitor, given the excellent measure at the doc's office and I'll be interested to learn what figures she gets with the arm cuff monitor.

As regards the food, tell her to try using plastic cutlery - I read recently that, as against normal metal cutlery, it helps to reduce that metallic taste in the mouth.   Must be worth a try?

Not wanting to worry her, or you, but I'm a little concerned about her eyes.  There is an unpublicised adverse effect with Votrient that merits further enquiry.  Rather than bother you with details, may I suggest that you get Robert Motzer's input on the matter?  Can you tell me a little more about the way in which her eyes are being affected and also why you say you don't like the way she looks?  I hope there's no problem and that she and I both continue to do well on Votrient.

TW I wilto suggest themplasric cutlery and hope that works.  With her eyes it can be confusing. She had cataract surgery two years ago and at times she said she saw blurry. They gave her drops to put on and that helped for a while. Now she is seeing blurry and they want her to clean out her eyes somehow, don't know how they do it  but will do it when th cold weather dies down.  But her else's have been swollen  all around since she is on the meds, don't know if it is wrated retention or even from the new by meds.  What was the report About?  When we go to th me doctor on Friday we will see if the swollen eyes are water or not, the  I can field out questions to dr. M.  So far thouturner Doctor says she is doing ok.  while she was on on,y homeopathy foAlthea year she looked fantastic.  She ate, gained weight and you wouldn't know she was sick at all. She haa sister and more energy and go to the  myself. One month on Votrient and she looks sick, tired, losing weight no desire to do anything, swollen and just looks like all the life is draining out of her. I do pray that the meds are helping and this is all worth it. Bjust is I see a terrible difference between the homeopathic meds and the allopathic ones.  Mom also said it is a big difference in how she feels and looks.

i pray all goes well with your scanJust to to be clear, your scans are this week Friday but in a week from Friday you get the results?  How are you feeling! I know things are working for you, I think you can tell. And probably for mom too as her breathidal really improve.  We just need ther press pressure and wareference toon squared away.  Have you lost any weight TW?  I miss our little private chats. Please say hello to the family for me. Oh, did you get my email a few weeks back where I explained about the sacomatoid changes n the new path report from dr. M?  Also that it is still unclassified, but they believe it is RCC but that is all they have.  Her slides also tested positive for two other things but wasn't table to research it yet as I didn't get my hands on the full reports.   feel good, be good and chat soon!

angec said:

Well, mom has been on 400 mgs

Well, mom has been on 400 mgs of votrient for about a month now.  She has had high blood pressure and they changed and added new meds for her but it remained high.  She has a severe sinus infection at the moment.  But her ankles continued to swell. She went to the doctor and since her last ECG a few weeks ago this new ekg showed a skipped beat in her heart.  Her stomach sonogran now shows a tiny blockage in her aorta which was not there 5 weeks ago on her last petscan and she had a bit of blood when she urinated with no UTI that showed up, she also now has some sort of blockage in her belly. Could be stool but not sure since she has had the runs ob and off for a while.  They changed her pressure meds and we hope it helps.  She is not feeling too good with the Votrient and they might be thinking about changing it, which i hope they don't unless we find it is not helping the growths. Mom is very depressed because she did so well all year on the homopathic meds but now since Votrient she feels very bad, not herself...    Please add her in your prayers.. i will do the same for us all!  xxoo

Ange,

I keep your mom in my prayers. And it's discouraging to hear all she's going through. Let's hope and pray they are growing pains in the Votrient fight. Perhaps it's a bumpy road start to be followed by smooth paved highway..

I know how much you believe in homeopathic meds for good reason. But do you think her mental set is accepting Votrient or has she mentally convinced herself it won't work? The mind is a strong tool that can work for and against you. Have you convinced her that you believe in Votrient? I believe that would be an absolute necessity based on how close the two of you are. I'm not trying to put my voice in something that's none of my business, but drawing for straws trying to help. . .

 Keep the faith. Think of you and your mom lots.

I am having problems with my feet.  I already had a couple of pressure points on the "baby toes" that caused pain, but since I started Votrient I have 4 to 5 new spots have appeared-- turning into corns and all are VERY painful.  Cute shoes are out of the question and I am reduced to wearing flats, gym shoes, or my leather clogs which are a little wide at the toe. If I can get my foot in a particular shoe, my toes hurt like heck when I step down.  I can't get my foot in some shoes at all.  When I mentioned this to the oncologist he said it's not the medication. 

I never had this problem before the medicine.  One night, I missed the Votrient and guess what I had in the morning... no foot pain. I took the meds later that night and what did I have the morning after that?  Foot pain.

Still a small price to pay though.

Texas_wedge said:

A small price

Yes, a small price if the drug is doing what we hope for. 

We do know that Votrient has fewer nasty side-effects than most/all other current treatments for RCC, though not for everyone - we're all different.  However, it's a very new drug and, as such, the full AE profile isn't yet fully established.  For instance, I've had an increase in  pains in joints affected by arthritis (consequent upon old sporting injuries).  After enquiry on KIDNY_ONC, I've found others have had the same experience, even though it's not mentioned in the drug leaflet.  apparently TKIs can cause arthralgia (joint pain) and myalgia (muscle pain) but it's probably not a big deal in the order of things. 

More importantly, there are really serious, though rare, side-effects that manifest in eye problems (e.g. loss of peripheral vision or blurry vision) that can presage major brain damage.  This isn't generally disclosed but probably should be for the sake of the very few patients who might come to display this response.

Phoenix, are you sure it's the Votrient that's having this effect (your evidence does seem to bear it out, though)?  Are you on any other meds that might be causing or exacerbating it?  I'll continue to avoid "cute shoes" for now - I'm in scandinavian soft slippers most of the time, or trainers, roomy, steel-capped workboots or, not often lately, golf shoes but I don't picture you in any of those.

Hi Alice, thanks for it all! Mom knows I fully back Votrient, i fought like heck to get it for her when the doc wanted to start with Sutent.  But i am kind of worried about it.  She also is having trouble with her eyes after reading the post by TW. But she had that before we started too so i am not sure what is happening. I am really bumbed out as I have been having my own health issues and being i have my 9 year old home schooling and he has asthma, it is hard to get to mom to comfort her. I just hope this all clears up.  If it is the Votrient then i feel this is my fault because i insisted she be on it with the hopes of it being less harmful than the others. She is really down and said she feels she won't get any better.  I am behind her all the way letting her know how others are doing on the Votrient (including John) and telling her the good responses and to keep her chin up.  It is just that her pressure won't go down even more so since they changed her pills again.  She had the body pains but she hasn't complained about it lately.  It is just a sad thing to watch and may i say i hate the C word! Thanks for everything..

Texas_wedge said:

primum non nocere

Ange, as I think you'll have concluded, I've been very anxious about you all.  I'm relieved to gather that Mom's eye problems are not new and therefore not a contra-indication for her carrying on with the Votrient, assuming other issues don't interfere with that.  I'm less happy that her BP is not being better controlled (and my own seems to be spiralling out of control at the moment - something we'll review on Friday). 

I'm convinced that you've made the best decisions and also that you're in expert hands (although even the very best don't know enough about this complicated malaise).    A lot of people are doing very well on Votrient but we're all different and I'm sure you'll be very carefully guided by your medics as to how to proceed. 

I hope a way can be found to keep your Mom on the Votrient, if it seems to be having real benefits, by managing side-effects better and finding ways to lift her low mood. 

I have one question/suggestion right now.  There's a bit in the Hippocratic oath that translates from the Greek as 'abstaining from doing damage' - similar to the oft-quoted Latin dictum "primum non nocere"  - 'first do no harm'.   One thing that can, I believe, be safely said about homeopathy is that it will do no harm - so long as it doesn't make someone turn their back on allopathic medicine.  So my question is: have your Mom's current RCC experts told her not to take any homeopathic remedies and if so on what grounds?  I wonder whether, unless they have suggested convincing reasons for not doing so, she should go back to the homeopathic approach, IN ADDITION TO the meds she is now on.

P.S.  you won't be surprised that Mrs. Brown's Boys has been sweeping the board in awards!

I am not surprised at all that she is sweeping up the awards!  I only wish i would get that station so i can watch the shows. As it is now i am subject to watching partial shows on youtube.  when i watch that show all of my cares go out the window and i laugh until i hurt, a good hurt!

Well, it seems like the PA at mom's new docs office gave us wrong information. When my sister called the doctor back to clarify the instestine blockage and the possible aorta blockage her doctor said there was none of either and was a bit surprised at the questions. It seems that the PA who first checked mom told her all of that.  I personally would not have let the PA check mom, especially when the doctor is there, this is just an office not a big medical clinic, i mean come on.  Anyhoo, there is no blockage anywhere and perhaps the doctor was just feeling some stool left over, sorry for the gross description but want to claify this.  I was under the impression this was an effect from the Votrient so it had me very concerned.

Her pressure is amazingly still high after taking 4 pills a day for bp.  Her leg swelling is going down since they changed meds for bp.  Her eyes seems to be down as well, maybe the anitbiotics are helping the sinus infection.  About her eyes though i am not sure. They seem to swell up all around them and she gets a headache near her temple.  Can you please elaborate on the eye issues while on Votrient, or do you have a link?  I would be interested in reading it.  Thank you.

I appreciate all of the concern. My sister in law is half way through her chemo treatments then she will go for a test to see if it worked. I hope and pray it did, i didn't realize she is so young, only 46 now and about 43 when she first found the uterine cancer the first time.  Sad to watch her go through this and the fear of the not knowing is very painful, which i am sure everyone on these boards go through, even the caregivers. I know i go through it.  We all have to be positive and have a fighting spirit, because we certainly are not giving up by any means.  

As Hamlet would say... "to be or not to be, that is the question."  Right TW?    LOL

I have been on Votrient for four months since my last mets to my lung. Briefly, 53 years old, 2004 diagnosed with RCC and removal of my left kidney. In 2009 had mets to my lung with a wedge removal followed by 12 months of Sutent. 2012 two mets to the lung, radiofrequency ablations to both and now on Votrient. Oncologist says we will stay on the drug as long as we are cancer free. Next scan in March.

Minimal side effects compared to sutent. Mainly fatigue, sore feat and some manageabl GI upset. Oh, and my hair is going white. For now we are coloring it but I will probably let it go if we remain on the drug. Very hopeful the drug works, but I know the future is not if we have another mets, but when.

Good luck!