Experience of Fotivda/Tivozanib please.

Just giving your Fotivda / Tivozanib question a 'bump'

Hopefully someone will have some info about this TKI

G n' J

Thanks

Hi Bridge18, I am just completing my 5th cycle of Tivo. I have found it very tolerable: side effects are mainly fatigue, sore mouth (I can still eat ok but I avoid very crunchy food), sore feet (I can still walk ok, I don’t have sores...I just avoid high heels), my BP is spiky - sometimes ok, sometimes v high. Occasional unsettled tummy. All these are generally only in the 2nd half of the cycle so I get 2-3 weeks/month feeling pretty normal. The one CT scan I’ve had - after 2 cycles - showed 50% shrinkage in one met (lung) and stable other met (lymph). Next scan later this week so my fingers are x’d. I hope your Tivo experience is as good. 

Thank you Joanie B for your reply and I am sorry that it has taken me so long to say Thank you. I have now finished my second cycle and will start my 3rd cycle later this week.  During the first two cycles - I have become quite tired at the end of the day, usually more so at the end of week 1 beginning of week 2 - so I tend to go to bed quite early read and rest. I too,  have the occasionally upset tummy I'm not a big fan of immodium  but find Boots own brand just as effective. My BP is spiky usually the middle of the cycle but well within - per the Clinical Nurse Specialist - the limits. All in all like you I find the Tivo regime very tolerable. I take the capsule just before I go to bed and the more water I can drink the better I am the next day. I try to drink about half a litre when I take the capsule and between 4 and 5 litres during the day. I'm getting quite good at finding shops with nice loo's!!!! So far, I've had no sore feet  or sore mouth but I do use Benzydmine mouth wash in the morning. Like you, my days tend to be pretty normal. Thank you once again for sharing your experience with me and I wish you well.

Hi Bridge 18, I'm glad to hear your Tivo experience is going OK so far.  Now you just need the great scan result to go with it!  I am with you on the water thing - I too drink a half-litre when I take the tablet at bedtime, and I try to do 2-3 litres during the day as I agree it makes a positive difference, particularly with the fatigue.  I haven't been taking any meds at all for side effects.  Keep me posted on your progress.... us Tivo-ites are a new breed as it was only approved for UK use late last year (I was the first patient to get it at the Royal Marsden in London) and it is not yet approved for use in the USA.  

Hi - Joanie B , thanks again for your wonderful positive response.  I am now on Cycle 3 . After discussion with the Consultant I’m gradually easing off the pain relief and so far I have been ok. Wishing you all good fortune and I’ll let you know how I’m getting on. 

Hello,

I need to decide if getting Tivo is way to go to improve my life. How are the Tivo'tes doing? I can fly to UK to get the treatment. 

Any info is appreciated. Take care!

Hi  

my dad is cutrently on Tivo and tolerating it great, he’s having problems with hypercalcemia but that’s due to bone mets x he’s not having any side effects really other than diarrhoea once, hope things go well for you xx 

Hi ,

That's gr8 to hear. Thanks for sharing! I wish there is easy way out of it.

Thank

Is the drug working? I hear the drug is still not approved in the US for some reasons. 

thanks!