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VOTRIENT

KJones1969
Posts: 158
Joined: Mar 2012

I am checking to see if anyone who has used Votrient can give me information on it? We were told today my husband needs to start that in a few weeks to hopefully maintain the size of the nodules in his lungs that were metastacized from his kidney.

Any and all side effects that any of you would like to share will be greatly appreciated.

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

K,
I don't know anything about Votrient but if you go here:
http://www.cancercompass.com/message-board/cancers/kidney-cancer/1,0,119,8.htm
and type "votrient" into the search box, you will be able to click on "view all message board posts," you should find a lot of info from the folks at that site.
Good luck,
Mike

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

Also a good idea to join/ search on ACOR at KIDNEY-ONC.

ivfour
Posts: 42
Joined: Nov 2011

I have been on votrient since July 2011. I was diagnosed with stage iv rcc with mets to the right lung. I had a radical nephrecotmy in april 2011 and started the votrient in July. I started off with the 800mg (4 tablets) but had to come down to two tablets due to liver enzymes and mouth ulcers. I have had manageable GI symptoms of nausea, vomiting, and diarrhea. Blood pressure has been ok with diastolic below 100. In November this past year, I had all negative scans (brain, abdomen, chest, pelvis). I am still on the two tablets and will come off of them in the next few months and repeat scans after 3months. I seem to have increasing fatigue but have been able to work full time as an administrative RN. It has been wonderful for me and hope that it can do the same for you. God bless.

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

I'm glad votrient is working for you. Hope next scan is even better than last. Votrient is one of two drugs that might be used with MDX1106 in a clinical trial that my husband is interested in joining. May I ask if the votrient had any effect on your lung mets?

KJones1969
Posts: 158
Joined: Mar 2012

Sounds like you have had great results. My husband had a radical nephrectomy in March and has stage iv clear cell rcc that has mestacized to both lungs. From what I have read it sounds like this is the best drug for the least amount of side effects. I hope he has as good results as you have had. I'll be thinking of and praying for you.

mlateacher
Posts: 3
Joined: May 2013

How long does a patient stay on Votrient?  My husband is having his first scan today after 3 months on the drug.  I am nervous.

mrs_blkjak's picture
mrs_blkjak
Posts: 87
Joined: Apr 2013

I think patients stay on Votrient as long as they are showing a positive response. My husband is on Votrient and had his first scan about a month ago, and I understand hoe nervous you feel. Hoping for shrinking rumors for your husband!

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

Your husband and mine continue on similar paths. Votrient is one of two drugs that may be combined with MDX1106 in a clinical trial that my husband is interested in joining.

You asked me earlier why Chris Battle left Duke and I went back and reread a lot of his entries and I think it may have been to participate in a clinical trial that probably wasn't available at Duke. Plus Hopkins is probably a little closer to his home (Va/D.C. area).

Keep me posted on hubby. You both continue to be in my thoughts and prayers.

KJones1969
Posts: 158
Joined: Mar 2012

Thank you so much for your words. It does seem like they are on similiar paths. They told my hubby this was the best drug on the market to hopefully help him. We just found out the cost Monday and WOW it is astronomical. Luckily our insurance will pay 1/2 of it and we have applied for help on the other half but haven't heard yet.

They said a clinical trial would not work for my hubby so I am just praying this will.

You and your husband are in our thoughts and prayers.

ivfour
Posts: 42
Joined: Nov 2011

The nodules on my lungs were gone after 5 months of Votrient.

KJones1969
Posts: 158
Joined: Mar 2012

That is awesome!!!!!!!!!!! I'm praying for the same thing.

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

Thank you. That is encouraging!

Wishing you many years of NED.

mlateacher
Posts: 3
Joined: May 2013

How are you doing now?  I am hoping for the same results for my husband.

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

KJones,

I know these drug costs are sky high, and I so hope you can get some help on it. Are you going through pharmaceutical company?

I'm sorry if I'm asking a question you've already answered, but why is he not eligible for clinical trial?

KJones1969
Posts: 158
Joined: Mar 2012

The doctor said he would not be a good candidate due to age and there were none out there right now that would help him since the cancer is so aggressive. Told him the best thing on the market for him is Votrient.

I checked with Glaxo Smithkline and was told we could pay as much as $600 monthly. I talked with the pharmacy about it and they suggested another non-profit since they can hopefully pay most of what we are responsible for which is $2900.

You are not asking to many questions, the more anyone ask or share the more knowledgeable we all become.

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

Votrient is still quite a recent introduction. With luck, if it proves its worth it will become better priced. I'm in the UK. Does anyone know how cancer drug pricings go in the US - any evidence that price comes down as the market for a drug expands?

KJones1969
Posts: 158
Joined: Mar 2012

Texas Wedge,

I hope it lives up to what we have been told. I guess we will see in the next few weeks. I am still fighting trying to get funding that our insurance don't cover to get help with it. I don't know the cost of any other drugs but know this one is $6300.00 for 28 day supply. Our insurance only pays half, with that being said if he can stay on it up to 11 months like the doctor says we would be BROKE.

How is drug pricing in the UK?

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

Totally different situation here. With our NHS the drugs are free. If you want something that's not on the approved list and are paying privately then I imagine the costs would be comparable with yours, Statesside, but I don't actually know. Everywhere there is a perception that the financial models of Big Pharma are unacceptable but when we'll see real change, who knows?

mlateacher
Posts: 3
Joined: May 2013

My husband is part of the Commitment to Access program from Glaxso Smith Kline.  We pay nothing for the drug.

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

My mom is also part of the commitment to access program with glaxo smith Kline.

we pay $25 a month for her votrient and they said it could come down to $0, after a certain amount of time that she's on it.

I called my moms health insurance company when I was sorting out the commitment to access paperwork...they said votrient is over $10,000 a month. Her insurance was willing to pay 40% and then gsk picked up the rest.

 

They have a website here with a bit more information too:

 

http://www.gskcta.com/

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