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Afinitor anybody?

Gamecocks's picture
Posts: 30
Joined: Jun 2013

Great doctor @ MD Anderson, Dr. Tinnir, has me now on Afinitor, 10 mg daily, for trial. I spent 3 days @ MDA doing every scan/test under the sun.

He says he can not "cure" me but I signed up for a trial with Afinitor being the first of 3 drugs he will use.

Return every 8 weeks for check-ups.

Anyone ever used this baby?

Really feel like I am in good hands, MD Anderson is the top of the ladder, in my opinion now.

btw, had partial back in May, showed clear on subsequent CT's, but scans now show spread to liver as well as numerous tumors in the sack beside my kidney. 

Crazy disease!!!!

Suekub's picture
Posts: 137
Joined: Apr 2013

I, too am new to this drug and hope I have more luck with this than I did with Votrient. I haven't seen much written on this site about Afinitor but would also like to hear of anyone else's experience.

Hope it does the trick for both of us.




Posts: 7
Joined: May 2012

Was on afinitor for about 12 months before starting the MDX 1106 trial in Nov 2011. The major side effect while on the drug was a problem with my sugar. I became a temporary diebetic and had to go on meds while taking the drug. Sugar jumped to over 450 in a three month period. Was able to keep in check with meds until the 1106 trial start. Two weeks after stopping the afinitor my sugar returned to normal, stopped the suger meds, and it has remained normal. Also had some dry skin issues.

I am alive
Posts: 315
Joined: Jul 2012

I've been in a trial with afinitor and avastin for the past 17 months. What are the other two drugs you are combining with afinitor? This summer I developed lymphedema in one leg which has now spread to both legs. My doc thinks afinitor is the culprit. I wear compression stockings and wraps to control the swelling,which is mild to borderline moderate. No pain..just inconvenience. Beyond this new wrinkle I have had precious few side effects. Bp and triglycerides went up, and I've been on meds to control.them.since last spring. No biggie. For a couple of months early on ground glass opacities were noted in my lungs, but they have disappeared. Afinitor can cause some shortness of breath. Mine comes and goes,most notable on exertion. But again.no biggie. Every one responds differently to these drugs. I hope you have an easy and fruitful ride!


Posts: 567
Joined: Nov 2013

My husband was diagnosed with RCC with mets to bone.  Affinitor was the second drug given to him.  He took the drug for 6 months with good results.  The mets shrunk by 50% within the first three months.  They shrunk more in the next 3 months.  However, my husband still had the tumor in his kidney and it was growing.  It went from being contained within the kidney at 5 cm to growing into his vena cava during this 6 months period of time.  He was taken off of Affinitor and put on Inlyta.  While on Affinitor his voice changed.  It got very raspy and hoarse.  He was tired, but I don't know if that is a side effect of the drug or not.  He also lost his appetite.  Thats the extent of his side effects.  No lab value changes.  Remember everyone responds differently and my husband still had his primary tumor at the time of being on this drug.  Worked great for the bone mets.  I hope you have great success.

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