VOTRIENT

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 said:

There are several posts here

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

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

Bettie7752 said:

How long did you take Votrient/ and crying.

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

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!

angec said:

Put your mind at ease!

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!

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 said:

John, glad to hear all is

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!

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

Bettie7752 said:

Votrient

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

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.

GSRon said:

Just look what the Votrient

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

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

Thanks,

Bettie

Bettie7752 said:

How long did you take Votrient/ and crying.

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

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

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.