Votrient Side Effects

KJones1969 said:

Inlyta
Just realized I forgot to ask you how your husband did with Inlyta? In January they are talking about putting my husband on it, but I am still pushing for a clinical trial.

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?

KJones1969 said:

bry4856
Hello bry4856, I hope the Votrient has as few side effects for you as it did for my hubs. I just wish it would of worked for him longer than 3 months. I am sorry you have a torn rotator cuff, my hubs has had both of those worked on and it is no fun till they are repaired. Did you apply to cancercare for help on the meds? If not please do because it will help.

Meds cost
I had both rotator cuffs repaired 2007 left side2010 right side. The pain still persistsI had a MRI and a week later ultra sounds, after that reports I asked if cancer could be the cause. I had a bone scans on Thursday and told Friday that cancer on the shoulder was the cause of severe pain. Waiting to hear from Oncolgist Monday. I have a feeling that radition will be next. The Votrient 800mg is not helping this. I'm stressed out right now. I got my 1st bottle free from the hospital, next supply came Friday from OncoMed Pharmacy. The $8000 AFTER CO-PAY IS $2563.41 OUT OF POCKET We hope some help will follow

one putt said:

more side effects
Tex,I have been dealing with joint pain for several months and thought it was due to my age. S ince reading your post, I intend to mention this to my research nurse this coming Wed. I also have problems with dysphonia,although not as often as when I began taking votrient. I can appreciate you finding it "mildly annoying". In my 35 yrs. of practicing law I have often had judges comment on my "Stentorian tones". Since votrient, there are days when I just hope they can hear me. I'm also experiencing nausea and vomiting more frequently and severely than in the past. I've had two bouts (including simultaneous diarrhea and vomiting)in the past two weeks. I've always attributed my lack of diarrhea to the constipating effects of my pain meds. Given some of the problems others have had with side effects, I consider myself fortunate that mine have been so few.

extra side effects
Thanks for the response, John. One of these days, when you're golfing again, if I'm still around, we'll have to stagger round a course. We'll have moved from the grade of golfers who talk mostly about the latest football/baseball game into the ranks of those who talk exclusively about the medications they're on!

Ice, snow and rain have prevented me from playing much since getting on to Votrient. Otherwise I would probably echo your story - I've often been accused of putting people off, several fairways away, with my ringing endorsements, such as "Great golf shot!!" My dysphonia varies and I think, like yours, it may be getting a little better.

I'll be keen to hear what your nurse says about the joint pains. I'll probably ask the same question of my onc in early January. Meanwhile, after rejoicing in not having side-effects from my calcium channel blocker for hypertension, I've just started getting slight peripheral edema - a known and potentially serious s-e of Amlodipine. I'll ask my cancer nurse tomorrow if possible. So far it's just slight puffiness of my feet and a 5,000m rowing session today put it into reverse (and knocked my BP back to 108/74, with which I'm pleased) so i hope I can stay on it. Have you experienced any adverse events on BP meds? [There, we're getting plenty of material for golf round conversation already!]

Sorry to hear about your other s-es. Your having simultaneous vomiting and diarrhea won't be amusing - especially not knowing which direction to point yourself in! Like you. I'm sure my painkillers help to combat any Votrient-induced diarrhea.

You're plainly having a harder time than I am, so far at least, but I agree with you that we're getting off very lightly compared with some. Doubtless it's a consequence of being virtuous - being lawyers and all :-)

Texas_wedge said:

Pain still less than it was and I'm taking less than max. dose of paracetamol now and nothing else, except a very occasional ibuprofen, and yes, Ange, I take a daily B complex tablet.

Saw my GP and she's given me a nasal med that helps with the nose-bleeds. You were right - it was 'Phoenix Rising', correct save for the fact that Phoenix is certainly female - you may recall her chiding me, in fun, when I suggested she might treat us to a picture of herself - rising, of course!

Has your Mom got her meds now? I'm so hoping that they are just what she needs. So far as I can tell, Votrient is doing a good job for me and I'm sure you'll communicate that to her, along with my good wishes to you all.

TW glad the votrient is
TW glad the votrient is working for you, i think it is also. Well mom started her meds finally on Friday. She took 2 of the 200 mgs. She did quite well yesterday but was tired. Last night she went to three pills. Today she awoke with a bad headache and eye pain. I am assuming it is her blood pressure. She has a machine that she says is broken but tried it anyway. It read 204 over 99. Needless to say, i am hoping it is broken. I will go over tomorrow to check on her but i told her to take only two pills. It would have been my choice to ask her to skip tongiht but don't think she will. Her bp was 120/70 a the docs last week, she does take bp meds already. No doc in until Thursday. She has a slight headache on her right temple today. I am so worried. But she noticed the pains in her stomach she has had for three days went away. Can't work that fast can it? Praying for us all! In the meantime wishing everyone a safe, healthy week ahead and praying the new year brings better health for us all. I have been having chest pains, probably worry and also my good friends live in Ct. and her kids are ok but lost some of their friends last week. Was very hard to deal with. Love to all. TW, can you try the gatorade to see if your body needs electrolites? xxoo

Moonsgirl said:

My husband and the "last option"
Hi Siler, my husband has stage 4 RCC, he had a left nephrectomy March 2011,as the main tumor was 10 cm it had already spread to nearby lymph nodes to an extent that they said they could not surgically remove them. Thus far he was on Sutent, cancer progressed, Torisel, cancer progressed,Inlyta, cancer doubled. Cancer is now in lungs, liver, legs basically systematic. I got a call on 12/10/12 that the DR was putting him on Votrient,because " I don't think it will change the outcome I am putting him on it more as a way to make him feel that I am still trying to slow this very aggressive cancer", when asked why Votrient he said he choose it for least side effects and it can help 20% of patients however he informed me that this man I love with every ounce of my soul who is only 53 " may live till Christmas, however he definitely won't be here by summer". I found this discussion and find some reports here to offer us a glimmer of hope, I will let you all know how it goes.

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.

Texas_wedge said:

extra side effects
Thanks for the response, John. One of these days, when you're golfing again, if I'm still around, we'll have to stagger round a course. We'll have moved from the grade of golfers who talk mostly about the latest football/baseball game into the ranks of those who talk exclusively about the medications they're on!

Ice, snow and rain have prevented me from playing much since getting on to Votrient. Otherwise I would probably echo your story - I've often been accused of putting people off, several fairways away, with my ringing endorsements, such as "Great golf shot!!" My dysphonia varies and I think, like yours, it may be getting a little better.

I'll be keen to hear what your nurse says about the joint pains. I'll probably ask the same question of my onc in early January. Meanwhile, after rejoicing in not having side-effects from my calcium channel blocker for hypertension, I've just started getting slight peripheral edema - a known and potentially serious s-e of Amlodipine. I'll ask my cancer nurse tomorrow if possible. So far it's just slight puffiness of my feet and a 5,000m rowing session today put it into reverse (and knocked my BP back to 108/74, with which I'm pleased) so i hope I can stay on it. Have you experienced any adverse events on BP meds? [There, we're getting plenty of material for golf round conversation already!]

Sorry to hear about your other s-es. Your having simultaneous vomiting and diarrhea won't be amusing - especially not knowing which direction to point yourself in! Like you. I'm sure my painkillers help to combat any Votrient-induced diarrhea.

You're plainly having a harder time than I am, so far at least, but I agree with you that we're getting off very lightly compared with some. Doubtless it's a consequence of being virtuous - being lawyers and all :-)

even more side effects

Tex, I spoke to my nurse about my joint pain and she said it has been a side effect in some patients. A more common side effect has been sharp spiking pain(I forgot the term she used for this) that she 's seen. It appears my simultaneous vomiting and diarrhea,thankfully, is not a side effect but some sort of bug that's going around. Unfortunately, I infected Alice, who spent the majority of Christmas day sick as a dog. I have not,for the most part, had any HBP issues. I have not been on BP meds since July,2011, 3 months prior to my diagnosis. My reading just before my mdx infusion was 118/65. My BP readings between hospital visits are usually between 110-130 over 60-80. Based on the experiences of others, I consider myself very fortunate. I will look forward to that round of golf in the future,especially being asked by other golfers if you and I learned to whisper in a sawmill.

 

one putt said:

even more side effects

Tex, I spoke to my nurse about my joint pain and she said it has been a side effect in some patients. A more common side effect has been sharp spiking pain(I forgot the term she used for this) that she 's seen. It appears my simultaneous vomiting and diarrhea,thankfully, is not a side effect but some sort of bug that's going around. Unfortunately, I infected Alice, who spent the majority of Christmas day sick as a dog. I have not,for the most part, had any HBP issues. I have not been on BP meds since July,2011, 3 months prior to my diagnosis. My reading just before my mdx infusion was 118/65. My BP readings between hospital visits are usually between 110-130 over 60-80. Based on the experiences of others, I consider myself very fortunate. I will look forward to that round of golf in the future,especially being asked by other golfers if you and I learned to whisper in a sawmill.

 

even more side effects

"whisper in a sawmill" - I've not heard that before and will need to salt it down for future use. 

Thanks for pursuing the joint pain question with your nurse. I'm continuing to feel it at old injury sites, including both thumbs - a nuisance for golf - and my right knee which has been bad enough lately that I sometimes find it difficult to walk - also not good for golfing. It's not bad when I  get moving but I stiffen up badly when sitting protractedly at the computer and get up like an old man - not something I like. 

Sorry to hear about the bug - could it have been a bout of food poisoning from some festive fare while out and about? I hope you're both over it now. 

I envy you your BP figures.  I'm on max dose of a calcium channel blocker for Votrient-induced elevated BPand it's started to give me mild edema on my feet which I'll monitor carefully.  I haven't had HFS so far and this seems to be a blessing with V. as against Sutent but I have just got a rather sore tail end but that might be due to doing nothing all day, lately, but sit at a computer! If getting up and about a bit more doesn't sort it I'll have to report it as a possible (unique?)  backside-effect!  Any other Votrient takers suffering this 'backside-effect'?!!

 

CAPNMatt said:

HBP

While I was on Votrient my BP shot up to 200/120. I had to take a combination of calcium blockers and beta blockers to get it down. I had to change calcium blockers due to edema. I am finally on Norvasc and Metoprolol. 

Calcium blockers

Which calcium blocker were you on Capn, that gave you the edema? Has the change of blocker solved the problem? How are you doing now, generally?

Texas_wedge said:

Your Mom
It's a bad time to be starting a new drug, if only skeleton staffs are available. I hope you are able to get Mom monitored as necessary. At her age and being diabetic good care is needed. What dosage was she told to take? I think she must stick exactly to what her doc has prescribed, subject to ongoing revision via monitoring, and not decide for herself what dose to take (unless this has been given the green light by her docs).

I guess her BP monitor is kaput - that reading would not be good. It may be necessary to boost her BP dosage if the Votrient pushes her BP up a lot - again an imperative for close monitoring. (Maybe a good idea to buy a new BP monitor - arm, not wrist - they're not terribly expensive these days).

Also monitor your own chest pains carefully. You are bound to be anxious at this time. So sorry to hear about your friends in Ct! No reason to think I need a sports drink, by the way, and I'm continuing fine.

I hope you have an enjoyable Christmas, even though it will maybe not be exactly 'Merry'.

Mom was told to take 800 mgs

Mom was told to take 800 mgs right off the top but she didnt' feel comfortable doing that so she started with 200 then went to 400 the second night and did ok.  Then the third night she took the 3 pills 600 mgs and her head will badly hurting her. Her pressure after the third pill did go up as high as the 200/110.  She called the oncologist and he said he has to change the medicine. Mom asked why don't they try to adjust the pressure meds first and he told her to call her gp. Her oncologist (not Dr. M from sloans) isn't familiar with the workings of Votrient and has only used Sutent so he doesn't know how to deal with the pressure.  Her GP raised her bp meds just a tad.  Her Onc told her to stop the meds for a few days then start again and to call him this coming week. So she was on three days and off theree days.  While off her pressure remained high but the headache went away. Now she has been back on only 1 pill and the headache already came back, she is retaining water in her feet and her pressure is 177/88 with the new bp meds added.  I don't know what will happen from here but her headache is slight but back and only on 200 mgs.  This is very frustrating.  He told her to go ahead and start 800 mgs but with her pressure so high she is afraid to do it. I wonder if more meds would make it go even higher or if it doesn't make a difference if it is 200 or 800. When she took the three pills it was very high. So it seems the machine was in fact working.  She did get a new one but they gave her the wrist cuff. I can barely sleep with so much worry and hoping mom does ok.  Love to all!

angec said:

Mom was told to take 800 mgs

Mom was told to take 800 mgs right off the top but she didnt' feel comfortable doing that so she started with 200 then went to 400 the second night and did ok.  Then the third night she took the 3 pills 600 mgs and her head will badly hurting her. Her pressure after the third pill did go up as high as the 200/110.  She called the oncologist and he said he has to change the medicine. Mom asked why don't they try to adjust the pressure meds first and he told her to call her gp. Her oncologist (not Dr. M from sloans) isn't familiar with the workings of Votrient and has only used Sutent so he doesn't know how to deal with the pressure.  Her GP raised her bp meds just a tad.  Her Onc told her to stop the meds for a few days then start again and to call him this coming week. So she was on three days and off theree days.  While off her pressure remained high but the headache went away. Now she has been back on only 1 pill and the headache already came back, she is retaining water in her feet and her pressure is 177/88 with the new bp meds added.  I don't know what will happen from here but her headache is slight but back and only on 200 mgs.  This is very frustrating.  He told her to go ahead and start 800 mgs but with her pressure so high she is afraid to do it. I wonder if more meds would make it go even higher or if it doesn't make a difference if it is 200 or 800. When she took the three pills it was very high. So it seems the machine was in fact working.  She did get a new one but they gave her the wrist cuff. I can barely sleep with so much worry and hoping mom does ok.  Love to all!

BP and headaches

Ange, I'm not surprised but, of course, very sorry about the situation.  As you know, I was a little concerned at Mom starting at a time when the necessary support levels weren't around.  You'll see in the posts below this that CAPNMatt had his BP climb to 200/120 but with judicious change of meds they have got it back under control (in fact to an ideal level).  I'm not qualified to give any advice at all and it seems even her onc and GP are a bit at sea in this very specialised field.  The sooner you can get in touch with Ropert Motzer the better, but then I'm sure you already appreciate that.

I don't  know how much the BP effect is dose-dependent but, like you, I imagine it must be to some extent and Mom has already found that that is the case with the headache.  I suppose it's good news that the Votrient seems to be working. The bad news is the strength of the side-effects.  The water retention at her feet is doubtless due to the BP med and, as CAPNMatt found, changing her med, possibly to 2 or 3 different meds in different groups of drug, may solve that problem. 

We have seen that ivfour is doing well on the 1/2 dose of 400 mg of Votrient so let's hope your Mom can get all the necessary benefit with changes to her BP medication and maybe 400 mg daily Votrient.  It's a judgment call requiring relevant expertise, so trying to get hold of Motzer asap seems to me to be very desirable.  Failing that, might some colleague of his at MSK, be available?  Please tell Mom that I'm hoping they soon get the strategy sorted out and that she feels better.  She's obviously still very smart to have raised the question about handling the situation by staying on the Votrient but tweaking the BP meds.  I don't imagine a few days off the Votrient will matter greatly while regaining full control but, again, I'm no expert, just a concerned friend.  The best of luck to you all and please try to look after yourself as well as you can in these worrying circumstances.