Not eligible for trial - now starting Votrient

patriciaa

It's been a couple of months since I posted and the time has been spent having every imaginable test to see if I might be eligible for the Niviolumab/Ipilimumab versus Sutent trial starting here in Melbourne, It was only a 50/50 chance I would get the Niv/Ipi combination and in the end my kidney function was found to be below the required number required for trial.

I am now about to start taking Votrient and would appreciate any hints or tips from those who are on the drug re side effects - from the vosts I have read, it seems to be reasonably well tolerated so here's hoping

Patricia

angec

Votrient is a very good

Votrient is a very good drug.  There can be side affects, high blood pressure (which you can face with most drugs), low thyroid function, loose stools, mouth sore etc. But, let's not go down the whole list, let's hope you are one of the fortunate ones who tolerates the drug very well, everyone has different reactions. The good part is, those that tolerate the drug usually get a great response!  You can search further (you may have already) on here by doing a search for Votrien/pazopanib. Wishing you the best, come back and let us know how you are doing! Hugs!

PS

If your pressues does go up, be sure to work closely with your gp to monitor it and the doc will add more bp meds until the pressure is controlled.  Do this instead of giving up the drug.  You will evetually hit the right dosage of bp meds to get it in control.

My mom, now 82 1/2 is only on 200 mgs once a day. That was enough to get her to NED!  Keep that in mind!

angelsnls

angec said:

Votrient is a very good

Votrient is a very good drug.  There can be side affects, high blood pressure (which you can face with most drugs), low thyroid function, loose stools, mouth sore etc. But, let's not go down the whole list, let's hope you are one of the fortunate ones who tolerates the drug very well, everyone has different reactions. The good part is, those that tolerate the drug usually get a great response!  You can search further (you may have already) on here by doing a search for Votrien/pazopanib. Wishing you the best, come back and let us know how you are doing! Hugs!

PS

If your pressues does go up, be sure to work closely with your gp to monitor it and the doc will add more bp meds until the pressure is controlled.  Do this instead of giving up the drug.  You will evetually hit the right dosage of bp meds to get it in control.

My mom, now 82 1/2 is only on 200 mgs once a day. That was enough to get her to NED!  Keep that in mind!

i'm on votrient

hi patriciaa and angec I am taking votrient and have been on it for 21weeks now, side effects encountered are hair turning white, occasional diahorrea, occasional nauseous, cramps in stomach and very high blood pressure, this caused really bad headaches then the drs tried different BP meds and found two that really helped so I am feeling pretty good at the moment apart from some tiredness which is to be expected I suppose. 

I get my 2nd scan (after starting votrient) results on Friday and I hope that lung mets are still shrinking and the kidney bed recurrence (seen on 1st scan) has also started to shrink or even just stop growing,

my love to everyone on here and I would also like to say an amazing thank you to everyone on here for their brilliant knowledge and information, without you guys us newbies would be searching and searching

THANK you xx

patriciaa

Thanks to Angec and Angelsnis

Thanks so much for your encouraging and positive posts re Votrient. I have only taken 4 800mg doses so far but it's great to hear from people who are going through the same thing. I really appreciate the comments as have not been able to find any site as good as the CSN (in Australia that is)

Will keep you posted!

thaxter

Three months for me and great results

I have been on Votrient for three months now and got the great news last week that all four of my lung mets shrank by a total of 50%. I started one week on 400 mg one week on 600 and then 800 mg. the first six weeks side effects were pretty bad with mouth issues, BP, and diarrhea and I lost fifteen pounds. Changed dose to 600 one day and 400 the next and side effects have gradually gotten better. Not losing weight, mouth better and diarrhea not as often. My thyroid might be causing dry skin and fatigue but doc hasn't put me on synthroid as of yet. 

patriciaa

4 weeks on Votrient

Hi all,

I have  been on Votrient 800mg for 4 weeks now and so far so good - only side effects experienced have been occasional headaches and slight nausea but no vomitting or diarrhea.Stomach cramps were also an issue but settled down now. My oncologist believes in "hitting it hard at first" so am hoping that I will go on a lower dose once some change in tumours is shown. (I have scans in 2 weeks so keep your fingers crossed for me) Great to read about the good results some on the list have experienced:)

Patricia

patriciaa

everolinimus? Afinitor?

Hi everyone,

Well I had 6 montths on Votrient - it worked for the first 3 with slight decreases in all tumours but then topped working and I had scans on Juy 13th to find that all tumours had grown (right kidney, pancreas and lung plus 2 new little spots on brain !) Just completed 10 days radiation to knock the brain ones on the head - excuse the pun!) and go back to my oncologist on Aug 17th to discuss futher options - he is suggesting everolinimus - n0t quite sure of spelling. I would love to hear from anyone who has iexperience of this line of treatment. As I have said before, I am in Melbourne,Australia and haven't found a site as wondrful as this anywhere else and so appreciate everyone's generosity in sharing their stories; thank you all and keep well,

Patricia