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HDIL2 to Sutent update

Posts: 102
Joined: Jun 2013

It has been awhile since I have posted, sorry.  My prayers go out to those struggling.  Thanks to those that are leading the way in trials. I am very happy to read that some of you are having success. 

My run on HDIL2 came to a halt as my kidney and liver could not take the stress. Doctors stated that if I continued and levels rose 3 times above norms, it could possibly preclude me from many future treatments.  It was really disapointing as the follow up CT showed that the lung nodules were reduced in size to some degree.  The good news is that the nodules were reduced in size, no growth.

I am now on Sutent 50mg, two weeks on, one week off.  Side effects have been minimal and manageable. Dry mouth, diarrhea, no taste,  tired.  I am still working full time with travel, playing a little golf (if you can call it that), walked my daughter down the isle and many other enjoyabe moments.  I scan again after a few morevrounds and will keep the board posted.  

The nivolumab trials are very incouraging,  thank Darron, Fox and the rest for leading the way.

A good friend fighting breast cancer with mets to her lungs recently said it best:

"Yesterday is the past, tomorrow has never been a guarantee,  make sure you make the most of today".

I will take her recommendation and hope you all do as well.  Thank you all for being here when I have needed it the most, you regulars are serving a great purpose imho.



angec's picture
Posts: 924
Joined: Mar 2012

Bell, glad the mets are shrinking! That certainly is good news!  IL-2 is some rough stuff, any amount you can get in makes you a hero in my book! I hope the Sutent works fantasticly for you!  The IL-s keeps on working as time goes by and also can make the sutent more effective! I hope you ace it!  

Darron's picture
Posts: 310
Joined: Jun 2013

I have to admit, the reason I went to the Nivo trial becauae I was scared to death if IL-2. You are brave and strong for even giving it a go. I recently read an opinion from my own doctor on how IL-2 combinations should continue te be explored. Here's to Sutent and IL-2 working some magic!!!

I was on Sutent from Feb to October. since you are on a 2-1 cycle, your side effects should be easier to manage and will change slightly every cycle. The taste comes back, not everything tastes like a spoon forever.

just some Sutent thought on side effects:

use neutrasal for dry mouth, my dentist prescribed it.

use udder cream after a round of golf to avoid hand foot syndrome

 certain foods gave me diarrhea, keep a journal of what you eat an a few things will jump out as triggering it

Keep us posted on progress.

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