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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

bry4856's picture
bry4856
Posts: 14
Joined: Nov 2012

Yes and a good set of Dr's sure help. With the holiday I have not gotting word about co-pay help. Starting at $8000 but after medicare and BS / BC in Ma The pharmacy called to get me help with the balance $2570 due. I am waiting news from OncoMed Oncology Pharmacy
They say no news is good news, but does not help in the stress. Also had a MRI Friday for a possible tear in rotor cuf. Never has been easy, I take one at a time. Thanks for your posts. This is a first time for me to blog

BDS's picture
BDS
Posts: 103
Joined: Aug 2012

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

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

Please tell us more about yourself. I reckon you're a bit younger than I am but our approach and beliefs appear to be the same. Has your blood pressure risen much on this drug and are you on medication for it? You seem to have got off to a fast start.

May I also ask how soon your side-effects started. I've lately read someone saying they start after 14 days or so and I'm going to take my 15th day's dose when I've sent this message and I have zero side-effects so far, other than elevated BP.

BDS's picture
BDS
Posts: 103
Joined: Aug 2012

I am 52 years old and have two children (18 and 21). On May 29 2012 a 10 cm tumor was discovered on my left kidney. On June 11, 2012 my left kidney was surgically removed at Fox Chase Cancer Center in Philadelphia. Afterwards, I was informed that my cancer contained a 5 percent sacomatoid; which is a more aggressive form of kidney cancer. The cancer spread to my lymph nodes and I have 13 tumors/nodules in my lungs with one large residual tumor in my abdomen they could not remove with surgery. I have been taking 800 mg Votrient which elevated my blood pressure – now controlled with meds (40mg of Lisinopril). My blood pressure started to go up within two weeks of taking Votrient. Diarrhea started after a month and was just gotten worse. Since I work in an office it is not a big deal but when traveling or on vacation I have to take anti-diarrhea medicine and hope for the best. White hair and change of taste started after the second month. I am sorry to say I do not think anybody escapes the side effects of Votrient.

PS
Elevated blood pressure may be a good thing I have read that doctors are using it an important bio-marker to prove that the drug is working. – Got to go now my wife is taking me to a yoga class tonight. Carpe Diem – BDS

foxhd's picture
foxhd
Posts: 2025
Joined: Oct 2011

You've got the right attitude and perspective. Keep going. We are pulling for you! Side effects smide effects. They are adaptable. Tex, keep going!

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

Will do if you do Fox (and I can be sure you will).

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

Thanks for all of that BDS. While it's not actually a bio-marker guaranteeing success, it does seem strongly indicative and I'm glad, therefore, that we have both been thus affected. Mine shot up almost the moment I started taking Votrient, so I've been put on a BP med from tomorrow.

Sorry to hear you have a sarcomatoid component but, thankfully, it's small - I'm mostly sarcomatoid, which is bad news. Is your underlying histology clear-cell?

Any tips on how to head off/mitigate the main side-effects?

angec's picture
angec
Posts: 653
Joined: Mar 2012

Has anyone had any heart issues on Votrient to report. Imodium for loose stools works. Gatorade and a multi complex vitamin b, avemar to help the drugs work better and help immune system. Going to have all things ready for mom. Need to purchase Avemar o line, bet she won't use it though, very fussy eater. Lol

angec's picture
angec
Posts: 653
Joined: Mar 2012

Has anyone had any heart issues on Votrient to report. Imodium for loose stools works. Gatorade and a multi complex vitamin b, avemar to help the drugs work better and help immune system. Going to have all things ready for mom. Need to purchase Avemar o line, bet she won't use it though, very fussy eater. Lol TW how is your pressure?

KJones1969
Posts: 158
Joined: Mar 2012

Angec I haven't heard of any heart issues and my hubs hasn't didn't have any while he was on it. Now with him being on Afinitor at a lower dose we are full prepared for the side effects he experienced on the higher dose. We have Mighty Mouthwash, a prescription cream for his arms and a prescription lotion for his face. I'm like you now, better to be overprepared than not at all.

angec's picture
angec
Posts: 653
Joined: Mar 2012

Kjones, my mom will actually be the one taking either Votrient or the dreaded Sutent soon. She is 80 and was just wondering if anyone had issues with the heart before, thank you and I hope the affinitor works. If not maybe he can get into a trial or use Torisel or one of the others, there are so many out there and a new one being approved sometime in June or July of 2013 that is very promising with less side affects.

bevans1942
Posts: 14
Joined: Sep 2010

Every time I visit the Doctor, on my 3 moths checkup, 

I get blood work to check for liver problems, and EKG to

check the heart, and a CT scan of the upper and lower body.

I have been on Votrient for 3 years now and hve been NED

with just some minor side effects. My onc said to take imodine

before the diahrrea starts. Sometimes that gets pretty bad.

I have to plan my traveling acording to the bathrooms available.

I have tried depends but they do not really work well. Any suggestion 

will be appreaciated. 

 

KJones1969
Posts: 158
Joined: Mar 2012

My husband had very few side effects on Votrient, mostly just being tired and the white hair, it just stopped working after 5 1/2 months. Sounds like you are having success with the Votrient, I will keep you in my prayers and please keep us updated!

bry4856's picture
bry4856
Posts: 14
Joined: Nov 2012

This is my 3rd day on Votrient and the only side effect has been very tired, some nasurea
Still having pain because of the tear on my rotaror cuff, causing a lot of extra stress.Still no word on help with co-pay for meds.

KJones1969
Posts: 158
Joined: Mar 2012

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.

bry4856's picture
bry4856
Posts: 14
Joined: Nov 2012

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

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

Glad you are tolerating well so far. Did MRI confirm your pain is due to a torn rotator cuff?

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

I almost started a new thread on this topic but forebore doing so since what prompted it is specifically about Votrient. I came across this posting (on another forum) from almost two years ago:

"My husband was taking Votrient before going to bed (at least 2 hours after eating) the tumors all shrunk. His side effects were diarreha and headache. His oncologist suggested he switch to the first thing in the morning to see if that would be better. His side effects all went away, but the drug stopped working and the tumors started to grow back. He switched back to the evening and the tumors are shrinking again."

I've long believed that the importance of chronotherapeutics isn't accorded the attention it merits and this posting is the sort of item that reinforces my feeling.

Has anyone here got any useful thoughts on the topic? Votrient should be taken in a "fasting" state - not within an hour before, or two hours after a meal. However, apart from the general point that, to keep it in an even state in the body, it should be taken at about the same time every day, there doesn't seem to be any 'official' guidance on the time of day that might be best for most people (we all vary so generalisations may be difficult to arrive at)?

Ange, quickest way to update on my experience is to look at my blog - since then the main development is that I seem to be a bit sleepier and my BP is still at too high a level, despite doubling my hypertensive drug dose to max. I hope it's just a matter of time before the Votrient-induced hypertension is got under control.

I am so glad you have a modus operandi with Dr. Motzer and your local onc. Do you have a recommendation for a first-line drug for your Mom now? Please say hi to both her and your pupil - I hope both he and you are doing OK - I still miss that lovely pic of the two of you!

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

Rather than start a new thread :) I thought it would reach those interested if I posted the link below on this thread. It's a longish thread on Cancer Compass, covering many Stage 4 patients' experiences taking Votrient, over the last couple of years.

http://www.cancercompass.com/message-board/message/all,50378,0.htm

It makes cheering reading for those of us who are also stage 4 and on Votrient - there are many cases where there has been considerable success on this drug.

angec's picture
angec
Posts: 653
Joined: Mar 2012

Mom will start on Votrient as early as this Friday or the coming Monday. I was so surprised that the doc agreed to give it to her. Dr. M had said to prescribe whatever he feels comfortable writing but he felt that he wanted to try what Mom wanted. The question is this. He said to start right at 800 mgs. I am a bit worried about that since she does take blood pressure meds and insulin and is 80. I was trying to start a post about it on Acor to see if the famous Dr. Dutcher and others would weigh in, but alas that site doesn't like me. I can never navigate it without it crashing.

Anyone have any thoughts?

That was a wonderful thread TW. Sounds very promising indeed! Thanks for sharing!

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

Ange, if you really want to thank me, please put up that lovely mother and son pic again or, if Jaden is too shy, a pic of yourself that you're confident won't scare the mice!

If Mom's BP is under satisfactory control now all that is likely to be necessary is to keep monitoring it and tweaking dosages if necessary. Dr. Motzer's inclination to go with what Mom fancies makes a lot of sense to me and I'm hopeful she'll do well on it.

I'm glad you found that thread encouraging - I certainly did.

Jan Dutcher receives universal praise on ACOR but she doesn't post there (so far as I've seen) - doubtless far too busy treating people, researching etc.

What happens to crash your use of KIDNEY_ONC? Maybe I can help you sort it out?

All the best to your whole Family.

angec's picture
angec
Posts: 653
Joined: Mar 2012

TW, everytime i go on the site and try to post something it takes me to the front page when i try to submit it. I wrote to them but no answer. So i stopped. I can read the other posts just fine though. Thank you.

I will see what pic i can put back up. LOL

Mom's onc told her to come back 4 weeks after starting the medicine and so i was thinking that was too long. I am pretty concerned about it. Shouldn't it be every two weeks? Everyone else seems to be checked that way on Votrient when they start, or maybe I am wrong? How often do you go TW, if you don't mind me asking? Well we have an appt. to see him on Januray 17th, but i would have felt better seeing him at the end of December. This whole things has me in knots, i am just the caregiver. :( We don't go back to Sloans unless we need to, we stay with her local onc right now.

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

Ange, yes, it was two-weekly visits to see my onc Angela :) but now it's to be only monthly :(

I would have thought your Mom's onc might have wanted to see her a little sooner, the first time around but I guess he's confident his judgment makes sense. Obviously you'll get straight in touch with him meantime if there's anything coming up that bothers either of you but I trust there won't be.

On ACOR, do you hit a problem if you hit "Reply" in the top right corner of an open message and then try to make a posting? If that works OK you may want to enter a new 'SUBJECT' line.

KJones1969
Posts: 158
Joined: Mar 2012

That is good that Dr. M is starting your mom on Votrient. My husband took it 5 1/2 months until it stopped working and really the only side effect he had was lack of energy. He has high bp and is a diabetic as well. I'll be praying for you guys that she responds well to it.

Merry Christmas!

KJones1969
Posts: 158
Joined: Mar 2012

That is good that Dr. M is starting your mom on Votrient. My husband took it 5 1/2 months until it stopped working and really the only side effect he had was lack of energy. He has high bp and is a diabetic as well. I'll be praying for you guys that she responds well to it.

Merry Christmas!

bevans1942
Posts: 14
Joined: Sep 2010

I take my Votrient when I get up in the middle of the night

with water and go back to sleep. When I do that I do not notice the nausea so much. 

I have had good scans for three years. 

bry4856's picture
bry4856
Posts: 14
Joined: Nov 2012

25 days on Votrient, very tired, nausea. Rotator cuff pain has been keeping me awake nights. Mri did not show tear, did a ultra sound and still not helpful. Orthopedic Dr suggest to consult with Oncolgist Decided to do a bone scan on Friday Got unwanted call. Shows cancer on shoulder. Waiting for Monday to receive call from oncolgist at Mass General Boston. I have never had chemo or radiation for all 5 cancer surgeries. Do not know what to expect. A guess I got an early Christmas present. Tomorrow will be another day to move follow.

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

Any word from Boston Mass General? John too has shoulder mets and is currently controlling pain through meds. He's on Nivolumab/Votrient trial. Are you on Zometa or Xgeva for the bone mets?

Hope you get help with shoulder pain and expenses. I know the Votrient is terribly expensive; think John's cost is $6300-6400 a month, but our copay is considerably less. Even though Votrient is part of his trial, it is an FDA approved drug and not covered by trial. We do not pay for Nivolumab, the trial drug. Keep us posted.

 

 

moe1131
Posts: 8
Joined: Apr 2013

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

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

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

I was glad to hear that working out helps.

moe1131
Posts: 8
Joined: Apr 2013

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

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

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

I was glad to hear that working out helps.

bevans1942
Posts: 14
Joined: Sep 2010

I have been NED for three years now on Votrient. I have angiosarcoma.

Good Luck, Join the Sarcoma Alliance

Siler's picture
Siler
Posts: 3
Joined: Dec 2012

I am to diag stage IV clear cell. I'm 24 days into my 800 mg per day regime of votrient. My side effects are mostly lack of energy. I have had a couple of limited nausea. Few headaches, but my big symptom has been the energy loss. God bless you.

angec's picture
angec
Posts: 653
Joined: Mar 2012

Thanks Kjones and siler, I always feel good knowing others are in our corner! Thanks for information on the side affects. Hoping all goes well also. Still waiting for the medicines to arrive, will keep you posted!

TW it doesn't let me do anything even when I hit reply I type the info in and the hit send and it goes to the front page. It doesn't like me! ;)

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

Ange, I can't imagine we have our ACOR lists set up so differently that mine behaves and yours is errant in posting behaviour.

For me what happens is this:- I respond to a post by hitting "Reply" in the top right corner of the post in question. That opens a fresh screen with the text box for my reply. Usually I hit "Quote original message" then delete all the irrelevancies, such as chains of postings and list messages, and then I type in my message. When it's ready, I hit "Send message" and this takes me to a new screen with the dialogue box empty but, at top left, a message in blue that says "Your message has been successfully posted to the KIDNEY_ONC list".

After that I just use the back arrow on my browser to get back to the list on the Home Page. My new post may have already appeared when I refresh the Home Page, or it may not appear until a small time later.

This all pre-supposes that you're on the KIDNEY_ONC Home Page to start with - I presume you are but please confirm.

To start a new topic, it's simpler - just hit "Post New Message" in the right side-bar, type in your message and hit "Send Message". The sofware's response will be as above.

I hope we can get you to have more success there because they're a more professionally informed crowd and could answer authoritatively more of the questions you want to ask about Mom than we are able to here.

Siler's picture
Siler
Posts: 3
Joined: Dec 2012

I've been taking Votrient for 24 days now. Side effects are basically minimal for me but do included brief episodes of the following:
1. Loss of Energy
2. Loss of taste
3. Loss of Appetite
4. Headaches
6. Nauseua
The effects are listed in order of frequecy, with energy loss being the most prevelent. But once again the energy loss is usually about six hours after my dose and doesn't last maybe an hour.

Moonsgirl's picture
Moonsgirl
Posts: 1
Joined: Dec 2012

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.

foxhd's picture
foxhd
Posts: 2025
Joined: Oct 2011

Moonsgirl, please read back in my postings starting december 2011. I also had poor prognosis initially with mets in lungs, liver, nodes, and bones. But now I am strong, fit and full of piss and vinegar. (what the hell does that mean?) Are you at a larger cancer center? There are many here who have seen their fortune change after finding the proper hospital and Doctor. As Jimmy V says, "Don't ever give up."

CAPNMatt's picture
CAPNMatt
Posts: 13
Joined: Jul 2012

I agree with Fox. Mine has more of a Sarcoma feature so we are trying chemo. If you can find an mdx-1106 like Fox, that could also be an option. Good luck.

angec's picture
angec
Posts: 653
Joined: Mar 2012

Where are you located? Try to get in for a trial of sorts ASAP. If you post where you live someone in here I a sure will direct you further. Prayers for you and hubby, never give up!!

KJones1969
Posts: 158
Joined: Mar 2012

Hey Moonsgirl,

Don't give up. My husband is on Afinitor and in January he will have scans to see how it is working. If it does like the doctor speculates and keeps affecting his bloodwork like it is he will come off of it. If you do not have an option for clinical trials look on lines at clinicaltrials.gov and see what trials are available at a cancer center. My husband is a patient at Duke and they have lots of clinical trials for different cancers but because he was on Votrient and it didn't work and now on Afinitor there are limited options. I did find one at Johns Hopkins and one at MUSC that look like the best option. I have talked with his doctor and will push for him to be in one of those trials.

I know as a caregiver it seems grim and hard to fight but you have to fight it for him. My hubs has sarcomatoid features as well and is aggressive. He had a radical left nephrectomy in March of this year and started on Votrient. After 5 1/2 months it stopped working and he started on Afinitor shortly there after. After only 10-12 days he had to come off of the 10mg due to side effects. Now the 7.5 seems to not be as rough. His has spread to his lungs and there is now a small spot on his liver.

Keep your head up, enjoy every minute you have together. Read what a lot of the regulars type on here. There are some great stories from people on here.

Merry Christmas and Godspeed!

KJones1969
Posts: 158
Joined: Mar 2012

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.

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

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?

angec's picture
angec
Posts: 653
Joined: Mar 2012

TW, have you tried to drink gatorade to help with the muscle pains? I have read that it helpe others who were having problems with it. Also, you already take a complex vitamin B correct?
For the bloody noses you can take Arnica (homepathic you can buy in vitamin store) but you would want to clear it with your doctor. Mom's doctor said it was fine for her if she needs it. Just a suggestion.

I did read from (was it phoenix?) that he had splinter nails and also bloody noses.But you know with my memory I can be wrong.

These things aren't taking you away from you games so that is good. Try to dress warmer TW, the cold is enough to make you hurt when you are inside, i cannot imagine being outside in it! ;) Anyway, you are handsome! I hope the pain in the belly is less and you are not taking so many pain pills and getting more rest.

Mom should have her meds tomorrow. Although they have been saying that since last week. She is developing pains on her left side now and i am hoping the meds work!

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

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.

angec's picture
angec
Posts: 653
Joined: Mar 2012

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

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

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'.

angec's picture
angec
Posts: 653
Joined: Mar 2012

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!

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

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.

 

 

Phoenix Rising's picture
Phoenix Rising
Posts: 158
Joined: Jul 2012

I did mention that I had splinter hemmorhaging under most of my fingernails.  They all grew out or disappeared several weeks ago and last week I noticed them under one fingernail.  I don't polish my nails anymoe (and yes, I am female), so I can keep an eye on that. The doctor won't do anything about it but I still like to know.  He said it means the medicine is in my system at the dosage I am taking.  I also had nosebleeds but I thought I had that after Interleulin-- I REALLY cannot remember, but I know I used over-the-counter  Afrin nasal spray to stop it right away.

I also drank Gatorade to get rid of the muscle cramping.  I have to say, the only troublesome side effects left are the gray hair, light eyebrows, and diarrhea-- which is now easily controlled with 2 tablets of over-the-counter Immodium about 1 hour before I take the Votrient. The muscle cramps will return if I go too many days without the Gatorade, so I try to keep some around and drink a half glass or so early in the evening.  My BP remains reasonable and I am taking Lisinopril for it.  On my last visit, the doctor said I am doing great! Scans at the end of this month, results the following week.

 

one putt
Posts: 72
Joined: Sep 2012

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.

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