Votrient - side effects/ long term use?

I have had renal cell for the last 8 years, recurrence occured in the remaining kidney, pancreas and lung 5 years ago but as I was well and considered stable, with mm growth at each 6 monthly scan I had no treatment.Now my last scans show considerable growth and I have fluid in the lung. My oncologist has suggested Votrient and I would love to hear from anyone who has been on it for some time. (I live in Australia and have not found a forum like this one in my country!)

Comments

  • Suekub
    Suekub Member Posts: 137
    Votrient 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
    patriciaa Member Posts: 9
    Suekub said:

    Votrient 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

     

    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

     

  • vinnyc
    vinnyc Member Posts: 19
    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

     

    Votrient

    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? 

  • GailN
    GailN Member Posts: 14 Member
    CheckMate 214 trial

    I think this is the CheckMate trial involving nivolumab (anti- PD1)plus Ipilimumab (Yervoy)vs sunitinib. In Australia, there are very few trials in RCC let alone one with a checkpoint inhibitor combination with a good response rate with RCC. If you start treatment with votrient you will no longer be eligible for this trial. I would break an arm and a leg to enter this trial and hope for the combination. Keep us posted on your journey with the trial. Another good forum is Smart Patients - still USA though. The kidney Assocation of Australia has a new interactive forum but there are very few patients interacting on this list.

    http://www.kidney.org.au/KidneyCancer/tabid/799/Default.aspx

  • Darron
    Darron Member Posts: 310 Member
    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

     

    Trials

    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!

  • Suekub
    Suekub Member Posts: 137
    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

     

    Trial

    Hi Patricia. Can I ask where this trial is being done? I am due to see my oncologist tomorrow and would love to know further details regarding this as my next treatment in the cards is Sutent but would love to be able to be able to have a chance at nivolumab.

    regards

    Sue

  • Djinnie
    Djinnie Member Posts: 945
    Votrient

    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

  • Rea
    Rea Member Posts: 28
    Djinnie said:

    Votrient

    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

    Eyes

    hi dj! You have mentioned you have eye issues with votrient. may i know what is it in particular? Lately I've been very teary, which I assume my eyes are so dry that I am shedding tears involuntar. I've on 800mg for a month now. Thabks :)

  • patriciaa
    patriciaa Member Posts: 9
    vinnyc said:

    Votrient

    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? 

    Pd-1

    Thanks for your comments.if I start Votrient now I am automatically disqualified from the trial as participants have to have had no previous drug treatments as far as I know>

  • patriciaa
    patriciaa Member Posts: 9
    Djinnie said:

    Votrient

    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

    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

  • Ed Brabant
    Ed Brabant Member Posts: 61
    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

    Votrient

    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 8th and see the doctor January 9th. 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….

  • batch61
    batch61 Member Posts: 1

    Votrient

    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 8th and see the doctor January 9th. 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….

    Votrient

    I started Votrient 7 weeks ago after IL-2 treatment failed to work. I wound up in the hospitol for 3 days with throbbing pains in my chest and after bone scans they discovered the IL-2 didn't work and was put on Votrient. I was having a terrible cough with lots of blood coming up and about 3 weeks into the votrient the cough went away and now after 7 weeks I am back at work and feel like my old self. Healthy appetite and started gaining back some weight. I'm riding my dirtbike again. My voice is strong my lungs are clear and my tastebuds are good again. Only side effects are occasional diahrea and my hair has thinned and my beard and mustache are completely white. Ifeel like i'm going to live a long time to come which is a 360 from how I felt 2 months ago