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Starting Votrient this week

Suekub's picture
Suekub
Posts: 113
Joined: Apr 2013

After so many investigations and procedures I finally get to start drug treatment. MRI done this past Saturday shows L1  lesion a little reduced in size with no spinal cord encroachment and oncologist is happy for me to go ahead with drug treatment just wants to chat with both spinal surgeon and radiation oncologist to confirm results. Further CT scan and nuclear bone scan for comparison also needed but this will not delay commencement.

I know we are all different and not likely to have the same reaction to medication but wanted any advice from Votrient users about what I may expect and how long after taking the drug before any side effects and suggestions in dealing with them gladly accepted. The list of side effects in the printed document is quite scary!

Wishme luck and here's hoping for  minimal side effects.

 

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

I wish you only the best and most positive results!

Take no prisoners!

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

Sue, I hope that 2013 will prove to be as good a year as 2011 was a terrible one for you.  Good luck with the Votrient - a very good choice and this is looking like a vintage year for it, according to so many terrific reports of success from patients who've been on it for a few months or more.

You've obviously not done a search on this forum, or you wouldn't need to ask for info about it!  Just a little way down the threads list, you'll see one of our two giant threads - Votrient Side Effects.  There's certainly enough there to give you a very fast start!!!

Over on Smart Patients, I have a major project on, in which I'm collating feedback from many members there who are on Votrient, with particular reference to the effects of different dose levels, breaks in treatment and side-effects. Once you've got your teeth into the topic, you might want to join in over there as well, for a lot more info.   I'll be happy to answer questions you may have once you've done a little orientation on the forums with all the accumulated wisdom they can give you.  

Votrient acts fairly quickly so you'll be monitored frequently initially - probably weekly - to check on your liver enzymes levels and your blood pressure so that your docs can tweak the administration as necessary.   Good luck.

GSRon's picture
GSRon
Posts: 1181
Joined: Jan 2013

Hi Sue..!  OK, that list you read is scarey.. but as you said we are all different.. some people have few if any side effects some have more of them.  Yes, read some of the more in depth info from the Votrient Posings. So what can you expect..?  Blood pressure issues, white hair (yes everywhere), fatigue, sensitive skin, and sometimes Liver issues.  OK, so I need to mention nausea, but for me it was minor and happened near the end of the first week and never returned..  Fatigue can be a biggie if you are a working person, for me, I work all week and sleep most of the weekends.

So, I suggest a Cardio Doc for the blood pressure, make sure that Doc KNOWS about Votrient.  Get a home BP tester a good one, not just a cheap one (mine records the data for play back later).  Skin issues, use sunblock if you go out in the sun..   Get some good skin cream for sensitive areas if needed. The hair, forget about it... 

Liver issues.. that is a biggie as you will not likely know until the blood test results are in.  This also depends on the dosage, 800 MG being max, and 200 being min. 

Overall (for me) the Votrient is pretty easy, and the good news is that it did what it is supposed to do..  but due to Liver issues I am on a hiatus.. hope to re-start soon.

Good Luck.!

Ron

BLKJAK
Posts: 108
Joined: Apr 2013

First, I really want to wish you well on Votrient. It has had some really great results with some of the folks here. I had my first 3 month CT scan last week and all of my tumors have shrunk a bit. I'm happy as any tumor shrinkage is a good thing.

I'd like to add to GSRon's post and mention diarrhea. Oh the damn diarrhea. I didn't have any issues with it until the first week of July. It's pretty bad, but can be managed with Immodium or as GSRon suggested and I confirmed, the generic varient. Be extremely careful if you experience flatulence if you catch my drift. The bottle says you can take no more than 4 per day, but my oncologist said I could take 8 safely. You may want to see what your doc says. I hope you aren't affected by this.

Lately the fatigue has been pretty bad for me. I have to force myself to get out of bed or I'll sleep at day. It's Votrient added to all the other drugs I take which cause fatigue (Oxycontin, Oxycodone, BP meds and antidepressant and antianxiety meds). It's probably the worst side effect I have. If I could, I would sleep all week, day and night.

I hope this bit of information helps you out. Like Texas_Wedge said, there's a huge topic which covers this in greater depth. This are just the cliffs notes.

BLKJAK

 

GSRon's picture
GSRon
Posts: 1181
Joined: Jan 2013

Thanks BLKJAK... how could I forget the diarhea..?  That tells you what 2 weeks off of the drugs can do..!!   And yes no getting around it.. passing gas will NOT likely be the same... you will likely pass a lot more than just gas..!!   I am so glad that no one else has to do my laundry....

Hope if works for you too..!

Ron

Suekub's picture
Suekub
Posts: 113
Joined: Apr 2013

Thanks guys for your replies.

I have started to read the many threads re side effects. Happily my blood results have always been relatively normal apart for slightly raised GGT levels which the doctor does not seem to be concerned about. Further blood taken yesterday. My creatinine levels have continued to be very good since nephrectomy 2 years ago.

I had a period of 12 months where I was taking sorafenib  whilst involved in the SORCE trial and experienced loss of hair (which has grown back curly after a lifetime of dead straight hair and looks like I can look forward to having curly white hair - reminds me of my grandmother!) diarrhoea, foot pain, slight fatigue, raised BP and loss of appetite. Appears many similar side effects as Votrient.

I will keep touching base here after I start the drug.

Best wishes to everyone.

 

saintmont
Posts: 40
Joined: Feb 2013

Hi, I started votrient 5 months ago, started on 800 down to 600 due diarrea havent not had any problems since. I take gastro stop if i occassionly have diarrea and that stops it. Sometime the diarrea will come if i eat certain foods. I work full-time have not had issue with tireness but I make sure I do get my 8 hours rest. I had scans last week and saw my oncolgist today everything is stable.

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

Have you encountered any problems with hepatotoxicity, like, for instance, Ron and myself?  We have both been forced into breaks from Votrient treatment by our liver enzymes going wild.  If you have any record of your labs results and could give info on tests like ALT, ALP, bilirubins etc I'd love to see those figures.

Suekub's picture
Suekub
Posts: 113
Joined: Apr 2013

After 3 days my BP has spiked and my medication has not made a difference. Luckily a phone call to the hospital today (Sunday here in Aus) found my oncologist doing rounds who advised to miss tonight's dose and she will discuss with other renal specialists tomorrow to review BP medication. Otherwise I feel OK.

let's hope they can get the hypertension sorted so Votrient can do it's job.

hope everyone is keeping well and having a relaxing weekend.

 

Suekub's picture
Suekub
Posts: 113
Joined: Apr 2013

Oncologist has added a further BP drug after discussing with cardiologist which seems to have done the trick.. No other SE's yet but have noticed I seem to be incredibly tired - having a shower this morning was hard work! First lot of blood tests tomorrow.

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Good to hear you are back on track.  I hope your imminent spring brings all sorts of good things into your life!

Thanks for the updates!  Keep kicking it in the rear!

Michael

saintmont
Posts: 40
Joined: Feb 2013

Hi, my bloods were good, My creatinine was slighly up and urea was slighly up. the other results were fine. My BP is starting to get under control. I will have a look at my blood test time. 

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

saintmont, glad to hear you're doing well. Do you have any actual figures you can quote, for ALT, bilirubins etc,  for purposes of rough comparison?  We're all so different but some ball-park guidance is often helpful in knowing what to look out for.

Suekub's picture
Suekub
Posts: 113
Joined: Apr 2013

I have had to stop Votrient due raised liver enzymes, creatinine was also raised which is a first. Anyway more bloods done today with a view to re-starting Votrient at a reduced dose (I started on full 800mg). Stay tuned!

Sue

 

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

As you'd guess, Sue, I'll be following your fortunes closely.  What were the numbers that caused them to take you off for now? 

I've reduced my dose from 600 to 400 and will inform my Onc at an extra appointment she's asked me to go to on Friday.  I'll have my weekly tests tomorrow and will have the latest analysis before I see her on Friday.  I must say I'm more than usually apprehensive about  what we're going to learn at that appoimtment!!

GSRon's picture
GSRon
Posts: 1181
Joined: Jan 2013

Hi Sue..!  I am beginning to think that perhaps Onc's should start people out at 600 MG and not the 800..  but then I am no doctor.  My liver enzymes were good at 600.  And the great news is that the Votriet did have good succes in a short period of time.. well about 5 months.  Hang in there and kick Cancer butt... (Yes in the end, my Liver Bilirubin got me of Votrient, but..).

Ron

Suekub's picture
Suekub
Posts: 113
Joined: Apr 2013

For your reply. Let's hope just a hiccup and can get started again soon. can I ask if you had any problem with your tongue? Mine feels like it has been burnt - taste buds are not doing their job and quite painful. 

GSRon's picture
GSRon
Posts: 1181
Joined: Jan 2013

Hi Sue... no tongue issues.. mostly fatigue, diarrhea, and slight blood pressure issues..  Hope the big V works for you..!

Ron

Suekub's picture
Suekub
Posts: 113
Joined: Apr 2013

I was given a copy of the pathology today - ALP 140 U/L. GGT 78 U/L interestingly my GGT levels are always above normal but I am not a drinker! Creatinine 98 umol\L don't yet have results of test done yesterday.

Eskimo lily's picture
Eskimo lily
Posts: 43
Joined: Aug 2013

Hi everybody, my name is Gin and I'm new to this network entirely.

 

My mom, who is 50, was just diagnosed mid July of this year, 2013 with clear cell rcc with mets to her lungs and liver. She had her left radical open nephrectomy on aug 1st, 2013 at Sloan Kettering in NYC. Her patholgy report showed the mass was 8.0x6.2x4.5cm. She is back home and recovering...just taking it easy day by day. The good news is she is off her pain medications and she is tolerating just Tylenol fine. She is already up and walking a mile a day.

We have received her Votrient in the mail, and we are supposed to start the first week of September. A few days prior to staring, she will have another CT scan and her first MRI of her brain to check for mets there. 

I don't really know the purpose of this first post...but I just wanted to be able to share her story as well. It's a very good feeling to find other people who are in similar circumstances and understand what we are going through.

Any advice on what to ask our oncologist before we start the Votrient? Or any advice in general about what types of things are good to ask our oncologist?

 

I wonder if her mets to her liver will effect her AST/ALT levels once she starts her Votrient.

Suekub's picture
Suekub
Posts: 113
Joined: Apr 2013

Todays blood test shows liver enzymes back to normal so time to have another try of Votrient - this time commencing at 400mg. Hopefully my liver will cope a little better this time round. Wish me luck.

Sue

Eskimo lily's picture
Eskimo lily
Posts: 43
Joined: Aug 2013

That's great that your liver enzymes came back normal. I also hope this new dose works for you.

 

my mom is meant to start votrient on September 5th so I'll definitely keep everyone posted with progress.

 

 

Suekub's picture
Suekub
Posts: 113
Joined: Apr 2013

How did you go with your last check up? Hope it is was good news.

Sue

 

Eskimo lily's picture
Eskimo lily
Posts: 43
Joined: Aug 2013

Hi sue,

 

how have things been since restarting on the 400mg dose? Hope you've been well!

Suekub's picture
Suekub
Posts: 113
Joined: Apr 2013

i am just awaiting a call from my doctor after having more blood tests on Monday, but have spoken with the nurse who tells me that one of my liver enzymes (AST) is quite high (the same level that reduced me to the lower dose) which is disappointing. Not sure what will happen next but will post again after I speak with the doctor. Also waiting for result of echo also taken on Monday which was done because if irregular heart rate.

I am so disappointed that Votrient doesn't appear to agree with me but hopefully there are other options available.

Thanks for thinking about me.

Sue

 

 

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

Hi Sue, you have been through such a lot, I hope you have better news next week. We will all be thinking of you!

 

Djinnie x

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

Hi, Sue.  I'm afraid my news is also not good.  Latest labs (yesterday) show that I've reached the end of the road.  Votrient is undoubtedly a very good drug and it seemed to be giving me what we were looking for.  However, the hepato-toxicity, even after I reduced my dose to 400 mg,  has proved too much for my liver.  We haven't yet seen the report from my recent scan and I'm due another CT + contrast on Monday, but that's all a bit academic now.  We'll learn at Onc appointment tomorrow whether there is anything else that can be done for me by medical science, apart from hospice. 

I hope there are good next treatment options open to you should your enzymes take you off V. permanently. (No doubt about mine - all main LFTs ("liver function tests") yesterday are showing horrendous numbers.)

BLKJAK
Posts: 108
Joined: Apr 2013

Hey Texas_wedge,

I feel like I've been punched in the gut after reading your post. I can only imagine what you're feeling. Is it possible to go off treatment for a period of time so your liver can recover and then try a 200mg dose?

I'm not a huge religious person but I'm going to offer up some extra prayers for you tonight. There has to be another option.

BLKJAK

GSRon's picture
GSRon
Posts: 1181
Joined: Jan 2013

Geeesh...  T.W.. no way...  There has to be something that won't take your Liver out..   Sure hope so... I know you will be looking hard at that..   BUT, perhaps the Votrient did a good turn on the Mets for the time you were on it.. Hope so.. that could put a lot more time on the clock to research what is next...

Ron

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

Hi Texas, 

I am so shocked and saddened at your news! I will be praying that your Onc gives you some hopeful news tomorrow. 

Djinnie x

Eskimo lily's picture
Eskimo lily
Posts: 43
Joined: Aug 2013

Texas wedge, my heart sank when I read your post.

ill be thinking of you tomorrow during your appointment with your oncologist.

Suekub's picture
Suekub
Posts: 113
Joined: Apr 2013

Texas very sorry to learn of your news. Sending positive thoughts to you. I sincerely hope there are some treatment options still open to you.

I now have a copy of my blood results and it appears the only problem is my ALP level which is 150 I had previousky stated that the AST was high which was incorrect - it is stated as specimen haemolysed (contaminated?), ALT is OK at 27, GGT is 64 (but this has always been above normal levels. Creatinine is stlill within nirmal limits at 86. My TSH is still too high at 9.9 and am hoping that tweaking my thyroxine dose will sort that out.

anyway, I am now off drug again. Further blood test in a week and then see oncologist next Friday.

Sue

GSRon's picture
GSRon
Posts: 1181
Joined: Jan 2013

Well, if misery really loves company, move over pal...  I just got home from my Onc visit.. I was hoping that she would consider me going on 200 mg of Votrient.. got the no, no, and heck no reply..  My Liver won't handle it..   And my Onc did not want to, nor did she show me my scan from Tuesday... however that alone told me it was not good.. Yes my lung mets are back as they were before any treatment.. boooo...

And Inlyta could be just as bad for my liver... but, we will see..!  I take my first pill in a little while here...

So, the fun part.. yes you KNEW I would try to have a fun part..  First my favorite cutey rececptionist flirted with me a while... way too  young for me.. but darn cute and real flirty... takes the edge of, so to speak..  But it gets better, a lot better...  so I do the Onc visit and all that... talk a little bit about my vacation... and the Onc and the student leave...  there I am with the really HOT P.A. and then 3 more women walk in the room...  The hair, the hair..!  They just wanted to stand and look at me... Geeesh.. to be 30 years younger I would of chased all 4 of them..!  At least my brain still has an imagination... 

Back to reality again... time for a pill...

Ron

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

Well, Ron, at least we know the pill you really don't need!!

GSRon's picture
GSRon
Posts: 1181
Joined: Jan 2013

Nope, got a different little odd shaped pill now...  which I did not take last night..  I went to lay down and was out...  My brain is a bit fried right now... FYI, in case I was not clear, Votrient did NOT fail me... rather I failed the Votrient..  that is how I feel... sigh.  I have over a month's supply sitting here yet I must move on...

Thank you all.. love ya all..!

Ron

BLKJAK
Posts: 108
Joined: Apr 2013

I am really praying that Inlyta works for you Ron. I surely wasn't expecting to receive this news right after getting the direct hit from Texas_wedge the other day. I only started on this hellish journey 5 months ago and I'm relatively young at 41 years old. I guess I thought that I'm somewhat invincible and will make it out of this. The recent news has really rocked me. It forces me to accept that this ***** of a disease is ruthless and will have its way with us at will. It really sucks. I'll be praying for you, TW and the rest of us. When one of us gets bad news we all feel it.

Sorry if I rambled or got you down. My mind is a mess. Now where is my Lorazepam?

BLKAJK

GSRon's picture
GSRon
Posts: 1181
Joined: Jan 2013

Hey BLKJAK..!!  You may of guessed, but Da Wedge-a-man and I are brothers from another Mother (and father)..!  Seriously.. we are connected, both for good and the bad... sigh..    I am sure we both are still fighting.. and will do so until... geeesh...

I wonder why Inlyta is not available for you T.W..?    I also wonder what other alternatives are out there..??

Ron

foxhd's picture
foxhd
Posts: 1873
Joined: Oct 2011

It sucks big time to be young and have a cancer diagnosis. At least I'm in my 60's. I know there gets to be a point when the perspective changes. I'm fortunate to be able to stumble along. Ron and Tex are 2 tough son of a guns. And for all others, LEARN HOW TO LIVE!. These guys could have played poker with James Bond. ..and the beat goes on....I guess time moves along and we learn to live it.

GSRon's picture
GSRon
Posts: 1181
Joined: Jan 2013

Fox... I am not tough... just too darn chicken to give up easily..!  Speaking of tough... you fit that moniker..

Ron

Suekub's picture
Suekub
Posts: 113
Joined: Apr 2013

Blood tests this week have all come back within normal range. As it is only ALP levels that seem to go up we are trying 400mg again and try it for longer than 1 week to see if it plateaus at a reasonable range. If this does not work it may may moving on to sunitinib. 

Here's hoping for a longer stay on Votrient.

 

 

angec's picture
angec
Posts: 621
Joined: Mar 2012

Suekub, can you stop the med for a week or so then restart at even 200 mgs?  Is this an option? I think  you have already stopped once before but may be wrong. (I am not as sharp as TW, I cannot even remember my own name at times! ;)  Is there any other factors in the rate going up that they can think of?

 

I hope it works out for you.  More and more I am starting to feel that they start at too high a dose on Votrient.  Just my opinon.

xxoo

Eskimo lily's picture
Eskimo lily
Posts: 43
Joined: Aug 2013

Hey ange, I totally agree.

 

from everything I've read so far, wouldn't it make sense to start on a lower dose of 400mg and if it is tolerated well with positive results,  to keep at that dose and then think about increasing it? That's why it's so important for us to talk to one another and share experiences so we know what else is happening out there!!

Eskimo lily's picture
Eskimo lily
Posts: 43
Joined: Aug 2013

Hi Sue,

 

Just checking in to see how you're doing?? I hope the votrient 400mg is working for you! 

Suekub's picture
Suekub
Posts: 113
Joined: Apr 2013

Hi Gin

Thanks for asking about me! I gave been away for about a week and without internet. Blood test last week was good - all liver enzymes in normal range, only abnormality is TSH level which is still too high,  blood pressure OK with treatment. I had another blood test yesterday to make sure still OK but gave not yet received results. I am booked in to see endocrinologist on October 10 (thyroid was removed in July) to monitor TSH etc.

no other side effects from Votrient apart from sensitive tongue which makes eating spicy food and hot drinks difficult which I aM finding difficult as I love spicy foods and hot coffee and tea. I am open to suggestions re tongue issues!

Sue

 PS doctor rang me late yesterday afternoon and advised liver enzymes still all within normal range. Calcium a little low but probably related to thyroid (or lack of) but calcium supplement will take care that.

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

Sue,

John's (one putt) TSH level has been an ongoing challenge since his Nivolumab/Votrient trial.  Synthroid (in various dosages) utilized to normalize.  TSH behaving over the past few months, but his most recent bloodwork shows a spike to 6.75 (range s/b .50-4.50).  His doctor will wait until next bloodwork (three weeks) to tweek current dosage if necessary.  Just a fyi to let you know you're not alone.

Suekub's picture
Suekub
Posts: 113
Joined: Apr 2013

I have not posted for a while but wanted to update on my Votrient experience. Have been able to continue with 400mg dose without too many side effects. The LFTs have continued to play nice and have been within normal range, BP still under control, no diarrhoea (yet!), a little fatigued still, tongue issues continue but all in all coping very well. Forgot to mention the white hair which is creeping in, am considering getting it all cut off and going a la naturale (thinking Judi Dench as she always looks fabulous). 

Due to have CT and further blood work on 13 November and next oncologist appointment on the 18th - fingers crossed for a good result.

Best wishes and good health to everyone.

 

GSRon's picture
GSRon
Posts: 1181
Joined: Jan 2013

Nice to see your smiling face..!  Glad the Votrient has been kind to you... hope your CT yields great results..!

Ron

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