Axitinib / Inlyta

GSRon said:

OK, one more posting before I

OK, one more posting before I call it a day.. and what a day it was..!!  Of course I did some work on my racer, before heading to my doctor appointment.. of course the first part caused me to be an hour late for the doctor...  But of course I called to let them know I would be late..  They handle this with ease.. just put a few people in front of me..  I got there, had my blood drawn.. chatted with a few people in there about my bike and the races on the IOM...  hated to rush off...

So, I checked in with reception.. then ran off to get some soup.. they have great soups at Stanford...  Only got half of it down before I got called in.. that was FAST..!!  The first thing, I got weighed.. I lost less than one pound in the last six weeks.. this is a huge improvement..!  In fact my doctor visits are on a 12 week schedule normally.. but the reason for the early check up was to see how my weight was doing... there were no new scans, just the blood tests, which were still being processed when I got to the check up room...

Soon, my Onc came in... she was pleased with my weight.. we re-reviewed my last scans, and my concerns about them... she looked it all back up.. and we agreed that the slight difference in the results can easily be due to the person doing the scans, or the machine, etc.  She is not worried and that the Inlyta is doing OK for me..   We talked about side effects and I told her the diarrhea is less now that I doubled up on the Immodium.   That is when she gave me that nice pat on the thigh, a big smile and said that she would see me in six weeks and she would set up the scans...  Actually she would have her assistant come in to the room and set up my scans and help with the paperwork from my job...

This is where I had a big meltdown... no not that kind of melt down...  I have a hunch you all think that I am always ready with a response to what ever someone says to me... well, there are times... and today was one of those times... the assistant came in... and we were talking about appointments, and I mentioned that I never had a 6 week appointment before... well then it happened.. I was stunned.. I did not know what to say...  Now this assistant is a very attractive mature blue eyed blonde... and she gave me a look..right in the eye.. and said.. "don't you know..??  We all love you  around here.... we like seeing you..!!"  That did it.. I was speechless..    Yes she made my day....

I hope you all had a good day.. and for those that did not have a good day.. I hope tomorrow is awesome for you..!!

Ron  - Life can be very good..!

Hi Everybody!  I would really like to know who is still on Inlyta, what dosage, and how it's going for you.  There have been about 3 friends here who have posted that they have moved on to other treatments. 

My husband is still on Inlyta 7 mg twice a day.  He started in April 2013.  His next scans are in August.  The MRI of his spine is being done on a 6 month time frame instead of 3 or 4 months now, and his CT/PET scan is done every 4 months.  His side effects continue to be that he has fatigue, and bouts of diarrhea.  No other side effects and his lab values are all good.  He has no pain in his bones except for where he had the back surgery, but he does take some medications for pain, and obviously they are working well.  His appetite is pretty good.  He does complain of being cold, but thankfully summer is here.  Yes, his thyroid levels are okay. 

Thank you. 

Annie

melindaahall said:

side effects

Hi all,

I am new to this forum, but looking for any info I can find!

My husband was diagnosed with RCC-clear cell, stage 4 with lung mets, Nov. 2013.  He had one kidney/adrenal gland and some? nodes removed in January 2014.  He is currently in a trial that pairs a vaccine made from his tumor with an approved drug.  He was on Sutent for a few months, but after initial shrinkage, there was progression, so they have switched him to Inlyta.

The side effects are definitely more harsh on this one, but still not horrible.  (Easy for me to say)  He has constant diarrhea (that Immodium does not help), the raspy voice and his feet hurt.  Does anyone have insight on duration of the foot pain or treatments that have helped.  And any recommendations for the diarrhea?

He has been on 5mg/2x day for about 6 weeks.

Thanks for any help!

Melinda

 

Hi Melinda, 

I am sorry to hear about your husband.  I understand what you are going through.  My husband was diagnosed in January 2012.  He is also Stage 4 with mets to bones and one lymph node. 

Re Inlyta side effects:  My husband takes Immodium every time he eats a meal and that has been approved by his doctor.  It is working for him.  He has also made some dietary changes like not eating as much fruit as he used to.  His voice has been raspy all this time.  Some days he sounds better than others.  I'm sorry I can't be of any help re foot pain.  My husband has not experienced that side effect.

I think you should make a new post, because you are a new person and this Inlyta post is huge.  I think you might get more help that way. 

My husband just had his latest scans in August and he remains NED on Inlyta.  I think it's been a year and a half now on Inlyta.  I hope that your husband will have the same wonderful results.

Best wishes and welcome.   Annie