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Inlyta (axitinib) roll call

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

Who here has taken or is taking Inlyta? What were your prior treatments? What strength dose are you taking and how are the side effects?

I had taken Sutent for 10 months and everything in my lungs had disappeared or diminished. In late June, my scan showed that 2 nodules had started growing again. On July 5th I started taking Inlyta 5 mg/2 tabs per day. Side effects are minimal...fatigue seems to be the major side effect for me. Won't have another scan till next month.

Could really use some encouraging news...

Thanks.

Paula

myboys2's picture
myboys2
Posts: 50
Joined: Nov 2011

I might suggest posing this question on another site, the ACOR site. Many at that location have been in the trials or are currently taking this drug. I read their posts and most say the SE's are minimal in comparison to Sutent.

Limelife50's picture
Limelife50
Posts: 420
Joined: Nov 2011

Try kidney-onc on your web search then you should find the ACOR web site then set up account,good luck

Limelife50's picture
Limelife50
Posts: 420
Joined: Nov 2011

i did do a quik web search on lnyta,i guess what i got from my web search and this had to do when the FDA approved this drug was that the biggest concearn about this drug was the potential for elavation of liver enzymes which left unchecked could become an issue.The upside of this drug is that overall the side effects are more tollerable than SUTENT.Then again and this me talking have you talked to your onc about entering a clinical trial and if not i know i mentioned this before but i still think HD-IL2 might be somthing to think about,i wish you the best June keep us posted

alice124's picture
alice124
Posts: 881
Joined: Mar 2012

Just wanted to see how you are feeling under Inlyta. Been thinking about you and hope the treatment is going well with no bad side effects. Let me know. If you'd like to respond privately, send me an email in the CSN email.

Soulnergy with you always,

foxhd's picture
foxhd
Posts: 2056
Joined: Oct 2011

As Alice says, I've been thinking of you also.I wish I knew something about Inlyta to offer. We will have to follow your lead. You are another pioneer. FLY.

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

I have been taking 5 mg of Inlyta twice a day for the last 16 days. The side effects are different from Sutent. The biggest one is fatigue. My energy level has dropped considerably. Also, I have had some light headedness, nothing unmanageable, but stlll a little disturbing. My reflux issues have gone away. My hands and feet are improved, but the soreness is not entirely gone.

I went for blood work yesterday and white, red, and platelets look fine. Got a B12 shot and do feel pretty good this morning. Getting ready to go on an amazing trip on Monday...a river cruise on the Danube. The trip has been planned since last year, and quite honestly I wasn't sure if I'd still be here....Hello Hungary, Austria, Germany and the Czech Republic. Screw you, cancer!

I am honored to help light the way on Inyta, as you, Fox, are my beacon of hope with MDX.

Much affection to all of you who are helping me on this journey.

Paula

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hi Paula,

Good to hear you are managing the Inlyta well, I pray it kicks cancer's a$$ for you. Sounds like an amazing trip, enjoy yourself, YOU'VE EARNED IT!!

Gary

Limelife50's picture
Limelife50
Posts: 420
Joined: Nov 2011

i am pulling for you Paula and i am glad your ses are minimal on this new drug you are on.

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

Just returned from an incredible 2 week trip. We spent 8 days cruising up the Danube River and 5 days in Budapest and 3 days in Prague. It was a wonderful adventure. I felt well and kept up with everyone. Walked 5-10 miles every day. I was AMAZING!!! Now I am back in Atlanta and I don't know what day it is and what time it really is. Kind of fun! Seriously, the cancer did NOT slow me down I enjoyed everything! Went to the doctor today and he increased my Inlyta to 7 mg twice a day. We'll see how it does . Hope it really kicks some of cancer's butt. Will post pictures tomorrow . Our trip
of a lifetime extravaganza!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Superb! A fine example to everyone of how to get on with life and have a great time. it seems as though the side-effects of axitinib can't be too bad if you could happily walk like that - gosh, it's like one or two rounds of golf each day!!

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hi Paula,

That sounds spectacular!!! By not allowing cancer to run your life, your attitude and spirit set an example for us all, way to go. You are a fighter, a warrior, and RCC doesn't stand a chance!

Rock on,

Gary

foxhd's picture
foxhd
Posts: 2056
Joined: Oct 2011

Way to go Paula! Glad you are feeling good and had a wonderful trip. Keep it up!

alice124's picture
alice124
Posts: 881
Joined: Mar 2012

That's remarkable Paula! Doesn't sound like fatigue is any longer an issue and you've become much stronger. Plus you have 2 weeks of wonderful memories to motivate you on to the next big trip.

I'm so happy you are tolerating the Inlyta so well. Keep kickin' and take no prisoners.

Would love to see pictures.

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