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Decisions to make

Posts: 49
Joined: Nov 2011

I saw oncologist this afternoon and everything is still great.  Labs are normal. He is leaving the decision up to me as to if I want to stop the votrient.  I have been on it 2 1/2 years and scans have been clear since December 2011 with exception of a couple of very small nodules in my lungs that are being read by radiologist as benign.  I have also been on methotrexate for 15 plus years that could also cause issues.  Have any of you come off the. votrient?  I am considering getting a second opinion from a kidney oncologist.  Thanks for any suggestions. The side effects are tolerable and definitely don't mind dealing with them for continued remission.

brea588's picture
Posts: 238
Joined: Jul 2012

I would always go for second opinion and maybe a third when in doubt.  It hurts nothing and may give you peace of mind and best of health care.

Posts: 293
Joined: Nov 2013

Hi!  Congratulations on the continued great scan results!  I read your profile but I didn't see what your stage was at the time of surgery, or the grade of the tumor.  I agree with the other post that a second opinion is definitely warranted.  I hesitate to say what I would do if I were you.  I appreciate how difficult the decision will be for you. 

Darron's picture
Posts: 291
Joined: Jun 2013

That question is good for a 2nd opinion. From you history, looks like you are in the DC area. ask your doctor for a referral. NIH is in that area. There were a few people in the Philly area as well.

garym's picture
Posts: 1651
Joined: Nov 2009

very cautious about ending a therapy that is working, perhaps you could cut your dose to 200mg instead of 400mg and reduce the se's even further. The second opinion with a kidny onc is a very good idea.

BDS's picture
Posts: 172
Joined: Aug 2012


IVfour, Well you truly are an extremely blessed individual have been diagnosed at stage 4 RCC and to achieve NED on Votrient alone. Certainly get a second opinion it cannot hurt.


But please consider the fact that Votrient does not work forever. Only a tiny percentage of patients have been on Votrient for over three years.  Votient only has a PFS rating of about 12 months.  Only about 1-2 percent of Rcc patient ever achieve NED on either Sutent or Votrient with stage 4 RCC.  Except for you, I have never heard of another stage 4 patient that has gone NED on Votrient alone. At some molecular level your body responded to Votrient in a way that the great majority do not.  I think you are out of the woods and should consider coming off the drug.   As always you should be vigilant and get regular scans. Should you ever have a recurrence your oncologist will put you on a newer and better RCC medication.

Congratulations - BDS



As for me, after 18 months on Votient and after my latest scans that were on Feb 14th I have come to the painful realization that Votient is no longer working for me. Votient did a great job for 18 months of shrinking the little buggers but it is not working for me anymore.  I am right now desperately trying to get into a clinical trial or I will be starting on the drug Axitinib / Inlyta. I will post more when I have more information. - BDS



Posts: 55
Joined: Oct 2013

Good Morning!

My husband is on Sutent, so I know vefry little about Votrient.  However, our oncologist tells us to think of RCC as a CHRONIC disease, just as something like diabetes is.  Therefore, just as a doctor would not take a diabetic off his insulin that was controlling his illness  he, as an oncologist, would not take a cancer patient off a drug that was keeping that disease in check.  I guess I would want a second opinion as others have suggsted. 

Posts: 49
Joined: Nov 2011

I appreciate all the input.  I am from texas so MD Anderson is probably where I will seek a second opinion.  I have decided to stay on the votrient until my next scans in June.  i had a right noep rectory after a motorcycle wreck and the tumor was about 13 cm and I had mets to lungs and possibly liver.  They told me it was a stage IV but I do not remember the staging of the tumor.  Thanks again for all your thoughts.  BDS, I hope that you are able to get in to a trial. You have always provided lots of valuable input.

Posts: 293
Joined: Nov 2013

Thanks for writing back with more information.  I am excited and really happy for you re the effectiveness of this drug.  Yeah! NED.  I will share that our RCC oncologist thinks that you continue with meds for as long as they work, and that the dosage is not decreased if the patient can tolerate the side effects.   I wish you continued good health and clear scans.

GSRon's picture
Posts: 1306
Joined: Jan 2013

Wow, I just read your info.. a biker gal, saved by a crash..!  And you are in one great position... I think either way you go, you win..!  Thanks for sharing.. and keep the rubber side down..!


Posts: 49
Joined: Nov 2011

Thanks for your reply,  I am kinda leaning towards staying in it since is effects are tolerable.  I am kinda like why try to fix something that is nt broken.

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