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VOTRIENT

relda
Posts: 4
Joined: Aug 2009

Stage 4 RCC -- just started a new drug, "Votrient" --- anyone out there familiar with this medication ?? Please advise - and thanks.

clbl77
Posts: 6
Joined: Mar 2010

Have you gotten any info? This medication was suggested to my mom as well. I hope this message finds you well!

WhackAMole
Posts: 1
Joined: Mar 2011

I have a dear friend who was diagnosed with both clear cell and sarcomatoid kidney cancer in December. This is the first drug the oncologist has put him on. It seems, from what I've read that it's pretty well tolerated by the body. I can post links to the drug information if you'd like. About the only thing else I've heard about it is it costs about $7000 a month for the drug. Yikes.

This is the best site I've found for researching medications. It covers everything. Hope this helps.

http://www.rxlist.com/votrient-drug.htm

Bettie7752
Posts: 14
Joined: Oct 2013

I am new to the CSN and this is my first post.  I was diagnosed in May with clear cell renal carcinoma and, in June, the MD removed my right kidney, right adrenal gland--a radical nephrectomy--and removed thrombus tumors in my vena cava and in the atriam of my heart.  My oncologist put me on Votrient for clear cell metastasis to my right shoulder the first of Sept.   I had a rough time with my blood pressure and the MD stopped the Votrient totally a week and a half ago.  I found out yesterday, to my surprise, that there is no tumor showing up on the tests done yesterday and all the Dr can see wrong is my right shoulder fracture in a healing stage, but no tumor in the bone.  He wants to put me on Votrient again, but two pills instead of four.  I was so thrilled that I told him YES.

GSRon's picture
GSRon
Posts: 1270
Joined: Jan 2013

There are several posts here on Votrient, if you do a search you will find all kinds of good info.  But in short, Votrient is known to work with the dose level down to 200 MG per day.  Seems some Oncs like to start at the max of 800 MG, but for some that is way too much.  Votrient has two side effects to be monitored, blood pressure and liver enzymes.  The rest is usually either tolerable or can be minimized with other methods. Most of the time blood pressure can be handled with a BP drug(s).

Good Luck,

Ron

Bettie7752
Posts: 14
Joined: Oct 2013

How long were you on Votrient?  I was on 800 mg/day and it tore me up.  Now the Dr. put me on 400 mg/day.  Did your hair come out?  Also, did anybody cry every time they had to have an MRI or CT with contrast?  I am an RN and I cry like a baby.  I don't know your rules, just trying to manage.

 

Thanks,

Bettie

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

Everyone here cries

angec's picture
angec
Posts: 622
Joined: Mar 2012

Hi Betty, glad to see the wonderful response you already experienced with Votrient in such a short time! Relax! Votrient is Very good drug. My mom, 81, is on 200 mgs and has very good results on her last scan in JuLy! She was on 400 but it was too much for her and they lowered her to 200.  I don't know why they start at 800, but like our friend, Ron, said, people get good results even on 200 and that dose is safest!

You have to have a good gp and onc to monitor your liver numbers and your pressure. A good sign that it is working if the bp goes up! The doc should add bp meds until he gets it managed, no reason to stop the drug for good! So now the dose is less but the pressure will still go up a bit. Just keep tweaking the bp meds with the doc.  Hopefully the doc has experience with the drug or can confer with ither docs.

hair doesn't fall out, it usually turns white! The side affects are usually tolerable on the lower dose, once the pressure is managed. Don't go go the higher dose if you can't tolerate 400. Also, keep 200 an option if 400 still tears you up!

Read the posts of this thread for much more info!

all my best!

Bettie7752
Posts: 14
Joined: Oct 2013

I have never experienced cancer before and still try to work, even though I am out short-term.  Thanks for telling me all about Votrient.  I 'hit the bottle' as far as hair color goes anyway these days, but one pharmacist from the pharmaceutical company said that it will be impossible to dye it because it strips all color out.  Is this so?  I still have a little vanity left (and a cool new wardrobe--hey, a girl's gotta smile).

Thanks,

Bettie

one putt
Posts: 72
Joined: Sep 2012

I have been on Votrient, 800mg/day, since May 10, 2012 . I have missed only 7 doses in all that time due to  a minor lung issue. I'm in a trial with votrient and nivolumab and my blood is tested every 3 weeks. My BP has remsined within acceptable limits without medication and as of Oct.17,2013 all of my liver functions are normal. Everyone's different, but I have found side effects to be very manageable.Good luck.

angec's picture
angec
Posts: 622
Joined: Mar 2012

John, glad to hear all is going well!   Love to Alice!

Betti, I am not sure about dying the hair, although my mom said she was going to dye hers, she hasn't since she is on Votrient.  I would look for organic natural dye if you can find it, others have said they were told to use it.

We all (even caregivers) cry! My mom has the RCC and I have the colitis, ulcer and all else your bowels can destroy you with! LOL  We all, on these boards, care so much for each other.  This is a scary road but we try to be brave.  We have some mighty warriors here that make us proud!  But we also let our feelings show when need be.  So, you go ahead and cry, pout and stomp your feet, if it makes you feel better! Then come here on Fridays and get a good laugh out of Gary's jokes!  Some of them are a doosy!

I wanted to ask you if you had a verified met in your bone?  The reason I ask that is because they usually add another drug for bone mets, besides the Votrient.  The name escapes me and others can chime in, but I think it is zometa??? Or something like that.  I have not been aware that Votrient worked on bone mets, but great that you are clear!  Keep up the good work!  

There is also another sight that we visit that has very knowledgable people on it called smartpatients.com.  You might want to check it out and post your questions or do a search for some topics you might have in mind!  Very helpful!

Keep in touch!

Bettie7752
Posts: 14
Joined: Oct 2013

Yes, I had a verified met in my right shoulder--clear cell renal.  Stupid me did not realize that metastasis can go through the bloodstream as well as through lymph nodes.  I am obviously not an oncology RN.  They didn't put me on anything else.  I go to Duke University Hospital, the Raleigh branch.  Thanks to everybody for being so nice as I am so new and sometimes confused.

Goodnight and God Bless,

Bettie

GSRon's picture
GSRon
Posts: 1270
Joined: Jan 2013

Just look what the Votrient did to my hair....

Aug 2013

Bettie7752
Posts: 14
Joined: Oct 2013

Ron, I should be so lucky.  LOL.  This made my day.

Thanks,

Bettie

NanoSecond's picture
NanoSecond
Posts: 532
Joined: Oct 2012

It is absolutely essential that they put you on either Xgeva (Denosumab) or Zometa inaddtion to Votrient for any bone mets. I have limited internet access until tomorrow else I would explain why.  Xgeva is to be preferred.  Please do a search regarding this in the meantime.  This is very important and don't settle for a "no" from your onc.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hi Bettie,

Welcome to the club everyone wishes they never had to join, you are amoung friends.

Actually we only have two rules;

Rule No. 1; We are here any time you need us and for any reason

Rule No. 2; Refer to Rule No. 1

Seriously, we'll support you any way we can, feel free to ask questions, seek advice, or just to vent as needed.  We've all been there and we understand.

A fellow survivor,

Gary

Southern Gent
Posts: 2
Joined: Nov 2013

I have been on Votrient since July 2010. It does work. Tests have been good since then. Side effects are as discussed. My Onc starte me om iron pills recently and stopped the diarehia in its tracks. Wish I did that a longtime ago. A whole different quality of life without worring about the bathroom.

Southern Gent
Posts: 2
Joined: Nov 2013

I have been on Votrient since July 2010. It does work. Tests have been good since then. Side effects are as discussed. My Onc starte me om iron pills recently and stopped the diarehia in its tracks. Wish I did that a longtime ago. A whole different quality of life without worring about the bathroom.

one putt
Posts: 72
Joined: Sep 2012

I agree with neal.  I have shoulder and hip mets and my onc insisted on Xgeva as part of my treatment plan. As neal said, Xgeva is preferable  but I beleive it's almost twice the cost of  Zometa. You should check with your insurance carrier.

Bettie7752
Posts: 14
Joined: Oct 2013

I appreciate all the input about the extra meds.  So far my insurance carrier has been great.  My oncologist is really young, but very willing to sit down and discuss everything.  I go back this week.

Thanks,

Bettie

Ed Brabant
Posts: 21
Joined: Apr 2013

I have been on Votrient since April. Side effects are managable. Hair went white. No liver issues. Taste buds went and still go crazy. Diarrhea you will get use to. I am on 800 mg a day. Stopped twice for 3 days per doctors orders. Each time reset the taste buds and the weight loss leveled off from not eating because nothing tastes right for 4-5 days then eat everything for 2-3 days. Doctor said that is normal because Votrient reduces blood flow. And your taste buds rely on blood flow and they regenerate evrey 8-10 days. Thats when I hit the eating cycle. I went from 295-237 not a bad thing. Staying steady at 237. But what makes everyting I am going thru worth it was my last scans showed 30% shrinkage in the tumor in my right lung. Lower lobe had collapsed. With in 2 weeks on the Votrient I was no longer short of breath. Lung reenflated. Next Friday teh 8th I go back for scan #2. And the following Tuesday the 12th I go back to Mass Gen to see the doctor. I feel great working full time. I am 54 year old male. I live in MA. I fish 15-20 bass tournaments a year durring this past sunmmer with my 27 year old son. In the fall I bowl 2 nights a week. I work at the pro shop at the lanes 2 nights a week and bowl tournaments on Sundays 2-3 times a month. Other than I seem to get a bit more tired a little quicker, 5 hour energy drinks help, the only big issues are bathroom issues but you get used to it. And saving on the food bill. ha ha. can do this for years and years. With any luck it will be years and years. Think positive try and resist looking for negitive information. It's way to easy to find on the internet. This is a great place for support sucess stories and informantion.

twiceblessed's picture
twiceblessed
Posts: 12
Joined: Oct 2012

Good morning relda.  In October 2012 my husband was diagnosed with Stage 4 Papillary Renal Cell Carcinoma, unknown primary origin.  He has been on 800mg of Votrient since December 2012.  He seems to be tolerating it pretty well.  All his hair has changed from dark brown to pure white ( I have pics in Expressions), and he is having some skin issues on his face (flaking, redness/splotchiness).  He also goes through spells where something is either too salty or feels "weird" in his mouth.  When that happens I switch around his diet so that I either do a completely sodium free diet if he's in a salty phase, or I make sure there are lots of crunchy things if he's in a phase where things feel soft and mushy etc.  So far all his blood work has come back good so the Votrient is playing nice with his liver, kidneys etc.  Our main concern is that for some reason the past 6 months or so he has started gaining weight (mostly in his stomach) and we are unsure why, his diet is healthier than ever and he's honestly not eating a whole lot.  I keep a record of what he eats, how much etc to keep track and show his dr at every visit.   So his Oncologist sends him for scans every 3 months but so far there is no indication of why he is gaining weight.  He has also developed blood clots in both lungs, but they aren't sure why.  It could either be from the Votrient or it could be a secondary cancer starting.  Not many actual answers so I know it's confusing. 

ivfour
Posts: 42
Joined: Nov 2011

I haven't posted in awhile but I had to change oncologists and he did abdominal and chest CAT scans there months part and they are still great with no evidence of mets.  He feels that the teo spots and an area of theickening are still cancer but the votrient is keeping them from growing since there was shrinkage from them when compared to original scans.  His plan is for me to stay on votrient indefinitelu unless liver enzymes or other side effects prevent it.  So far I have been lucky and liver enzymes have been stable or decreased by reducing my rheumatoid arthritis medication methotrexate,  I guess I will have my white hair longer and th occasional GI upset which is managed with phenergan.  I was just wondering if anyone Else has taken votrient indefinitely.  I have been on votrient 400mg since July 2011 with occassional breaks due to elevated liver enzymes.  He now has me doing every six month scans and having my labs followed up by oncologist and rheumatologist every here months.  I continue to feel very blessed with the results. Thanks again for the suppodt this board has been even though I don't post. Rey often.

BDS's picture
BDS
Posts: 100
Joined: Aug 2012

 

IVfour, long time no hear. How the hell you doing these days? I have been on Votrient since July 28, 2012. So far Votrient has either shrunk my metastasis or has kept them stable. My next scan is on Feb 14th for which I am hoping for continued good results.  So far so good - Votrient has kept the RCC monster at bay. As my oncologist says “You are on this drug forever or until it stops working”.  - BDS

 

one putt
Posts: 72
Joined: Sep 2012

I have been in a trial with nivolumab/votrient since May 12,2012.  All of my liver functions are currently well within normal ranges. I'm guessing 45 years of thoroughly enjoing "adult beveridges" has made my liver think it's on vacation with this votrient. I've only missed 1 week  of 800 mg/day and that was due to a lung issue. Let's hope it keeps working for us for a long time.

ivfour
Posts: 42
Joined: Nov 2011

Sorry I have t posted much but doing great!  I retired from the state and now work part time as needed for a hospice.  I live getting to be a nurse and helping families carry out their loved one's last wishes.  It is an honor to be part of their lives during this difficult time. Glad you and others are having success with  votrient.  My husband also retired so we plan on riding our Harleys more than ever.  Feeling very blessed.

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