Votrient - side effects/ long term use?

Hi. I am also in Australia so thought I would add a comment but it won't be very helpful I am afraid! I was on Votrient for a short period of about 3 months. I was unable to use the full initial dose of 800mg after about 2 weeks due to raised liver enzymes. There are several people on this site who have had some success for a period of time who may comment soon. I have also had/have mets to thyroid, pancreas and quite a few other areas and have taken part in several clinical trials and presently awaiting review after recently ceasing another drug trial.

best of luck to you.

Sue

patriciaa said:

Votrient use

Thanks so much for your reply. I have been offered Votrient immediately but have decided not to start yet as there is a new trial starting (hopefully soon) using Nivolumab. The catch is its a blind trial and Sunitinib (sutent) is the other drug they are using so if I go on it, I have a 50/50% chance of getting the new drug:) I believe Sutent is less easy to toleraate than Votrien but am assured if I get the Sutent and don't do well on it, then I can leave the trial and maybe give Votrient a go!

I wish you all the best too,

Patricia

 

If there is a chance to get PD-1 now do it. You never know. It may be your only

chance to get it. It may work. You will have more drug choices. Of course

you can try Votrient later. If there is a long delay,  3 or more months, can you try

Votrient now and come back to it later, if the Votrient works? 

patriciaa said:

Votrient use

Thanks so much for your reply. I have been offered Votrient immediately but have decided not to start yet as there is a new trial starting (hopefully soon) using Nivolumab. The catch is its a blind trial and Sunitinib (sutent) is the other drug they are using so if I go on it, I have a 50/50% chance of getting the new drug:) I believe Sutent is less easy to toleraate than Votrien but am assured if I get the Sutent and don't do well on it, then I can leave the trial and maybe give Votrient a go!

I wish you all the best too,

Patricia

 

I am on Phase I arm of Sutent+Nivolumab And have a friend on Votrient + Nivolumab, another in Ipilumamab + Nivolumab. 

I am NED after 20 months. My votrient friend is stable after 60% reduction thru 24 months. The ipi friend is only 6 months in and has seen almost 50% reduction and is continuing.

Even a 50% shot at Nivo is worth it. I can also say that Sutent is tolerable. I am on cycle 16 I believe. Started at 50 mg with 4weeks on 2 weeks off And have dropped to 35 mg. My friend on votrient started at 800 mg and dropped to 400. 

my understanding is that Nivo+Sutent is very effective, but many bad side effects And will not be continuing. Nivo+Ipi is a close 2nd with less side effects. Votrient + Nivo has been dropped, too many SE's.

My friend in the Votrient arm is the person that encouraged me When considering the trial....I think both of us would agree you have nothing to lose. Best case, you get a "coming down the pike" drug combination, worst case, you get Sutent, a Proven drug with a history of success in tumor shrinkage...even if not as durable as we would like.

with growth starting, I encourage you to be aggressive. Pick the most aggressive drug to attack the cancer, you will find the strength to deal with side effects. yiu can adjust doses and learn to deal with the side effects. 

I say go for it!

Hi Patriciaa,

I have been on Votrient since around March of this year. I was initially placed on 800 mg but my liver couldn't handle it. I changed Oncologists and she took a more cautious view, she started me on 200mg and I quickly worked up to 400mg which stabilised the tumours. My liver gradually accommodated the increase, which has now allowed me to raise it to 600mg.

I do get side effects, I suffer nausea most days, skin issues and eye problems. I have a cough but it is difficult to know if that is related to the Votrient or not. My hair has thinned substantially and is snowy white. I also get very painful hands and feet which I have learnt to get around. Nothing is too drastic on the whole in the scheme of things, if you can take it I wouldnt hesitate!

Djinnie x

patriciaa said:

Thanks

Thanks for your encouraging comments - I will certainly keep you posted . It helps to hear from a patient rather than just the oncologist/medical personnel.

Patriciaa

This February I will be on Votrient 800 mg for 2 years. Close to 50% reduction in size. And still "hopefully" shrinking. In the 2 years I have had to stop 6 times for 3-4 days each time. Stopping for me did like a reset. Appetite came back felt better. My wife could hear it in my voice when I needed to stop. Doctor said doing that helps my body better cope with the Votrient. I go for a scan January 8^th and see the doctor January 9^th. Every blood test has been fine to date. Been on a heck of a ride for sure. But I am staying on the ride till it ends. I have good days and bad days. Bad days I don’t go far from the bathroom. I take 2 diphenoxylate or as I call them the magic little white pills 2-3 times a day really helps keep me regulated. I also learned what I can and can’t eat. Beef makes the bathroom trips more often. And I LOVE steak!!!! Chicken, shrimp and lobster “thank god lobster” are fine. Or like we say it here in New England Lobsta. Stay strong and don’t give up. Every day they are getting closer and closer to finding a drug that will work for us all….