Starting Votrient this week

Suekub said:

Round 3!

Blood tests this week have all come back within normal range. As it is only ALP levels that seem to go up we are trying 400mg again and try it for longer than 1 week to see if it plateaus at a reasonable range. If this does not work it may may moving on to sunitinib. 

Here's hoping for a longer stay on Votrient.

 

 

Suekub, can you stop the med for a week or so then restart at even 200 mgs?  Is this an option? I think  you have already stopped once before but may be wrong. (I am not as sharp as TW, I cannot even remember my own name at times!  Is there any other factors in the rate going up that they can think of?

I hope it works out for you.  More and more I am starting to feel that they start at too high a dose on Votrient.  Just my opinon.

xxoo

Eskimo lily said:

Agreed.

Hey ange, I totally agree.

 

from everything I've read so far, wouldn't it make sense to start on a lower dose of 400mg and if it is tolerated well with positive results,  to keep at that dose and then think about increasing it? That's why it's so important for us to talk to one another and share experiences so we know what else is happening out there!!

Hi Sue,

Just checking in to see how you're doing?? I hope the votrient 400mg is working for you! 

Suekub said:

Update

Hi Gin

Thanks for asking about me! I gave been away for about a week and without internet. Blood test last week was good - all liver enzymes in normal range, only abnormality is TSH level which is still too high,  blood pressure OK with treatment. I had another blood test yesterday to make sure still OK but gave not yet received results. I am booked in to see endocrinologist on October 10 (thyroid was removed in July) to monitor TSH etc.

no other side effects from Votrient apart from sensitive tongue which makes eating spicy food and hot drinks difficult which I aM finding difficult as I love spicy foods and hot coffee and tea. I am open to suggestions re tongue issues!

Sue

 PS doctor rang me late yesterday afternoon and advised liver enzymes still all within normal range. Calcium a little low but probably related to thyroid (or lack of) but calcium supplement will take care that.

Sue,

John's (one putt) TSH level has been an ongoing challenge since his Nivolumab/Votrient trial.  Synthroid (in various dosages) utilized to normalize.  TSH behaving over the past few months, but his most recent bloodwork shows a spike to 6.75 (range s/b .50-4.50).  His doctor will wait until next bloodwork (three weeks) to tweek current dosage if necessary.  Just a fyi to let you know you're not alone.

Suekub said:

Update

I have not posted for a while but wanted to update on my Votrient experience. Have been able to continue with 400mg dose without too many side effects. The LFTs have continued to play nice and have been within normal range, BP still under control, no diarrhoea (yet!), a little fatigued still, tongue issues continue but all in all coping very well. Forgot to mention the white hair which is creeping in, am considering getting it all cut off and going a la naturale (thinking Judi Dench as she always looks fabulous). 

Due to have CT and further blood work on 13 November and next oncologist appointment on the 18th - fingers crossed for a good result.

Best wishes and good health to everyone.

 

Nice to see your smiling face..!  Glad the Votrient has been kind to you... hope your CT yields great results..!

Ron