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Affinitor Side Effects/Does It Work?

KJones1969
Posts: 158
Joined: Mar 2012

After 5 1/2 months on Votrient my husband had his second scans on Friday. They showed the spots on his lungs that had decreased in size with the first scans were double the size they originally started and there were new spots. They are going to try affinitor starting this week, does anyone have any information on what to expect with affinitor?

He had a radical nephrectomy in March of the left kidney and original tumor.

Thanks for any advice.

I am alive
Posts: 217
Joined: Jul 2012

KJones
I'm 10 weeks into a clinical trial for non clear cell RCC that uses Afinitor in combination with Avastin. So far side effects have been quite manageable. Occasional mouth sores (have had 3) that last 5 or 6 days and are treated with medicine. Sore throat that can also last several days and comes and goes. Hoarse voice, several days at a time, comes and goes,. Runny nose, often with splatters of blood in the mucous. Rarely fatigued. Lately have had some shortness of breath with exertion. For instance, will get short of breath when rushing to catch a train or walking quickly up a flight of stairs, but can easily walk 30-40 city blocks if just strolling.

KJones1969
Posts: 158
Joined: Mar 2012

Sounds like the Afinitor is working our as far as side effects for you. I hope my hubby does as well with this as he did with Votrient as far as side effects. I'll be praying for you that you get GREAT results on your bloodwork and scans.

I am alive
Posts: 217
Joined: Jul 2012

KJones,
How sweet of you! Thank you so much for your good wishes and prayers. Right back at you! I hope your husband and Afinitor get along like old friends for a very long time.

I am alive
Posts: 217
Joined: Jul 2012

KJones,
Have you checked out the kidney-onc site? There's a fellow there taking Afinitor who just posted. Mathew Woomer.

KJones1969
Posts: 158
Joined: Mar 2012

Thanks for telling me that, I'll look right now.

KJones1969
Posts: 158
Joined: Mar 2012

Will you please give me the website address for that? I can't seem to find it.

Thanks

KJones1969
Posts: 158
Joined: Mar 2012

Will you please give me the website address for that? I can't seem to find it.

Thanks

I am alive
Posts: 217
Joined: Jul 2012

Google kidney-onc. Several things will come up. Go to kidney-onc@listserv.acor.org (usually the second on the list - don't use it as the address. I always go in the back door by googling it first. As you can tell, tech savy I'm not.) Go into the kidney-onc@listserv.acor.org site, scroll to where you see "subscribe." You'll have to subscribe. You can opt to have posts go directly to your email so you're always getting them. Some people have private off-site conversations as well. I like to monitor both Kidney Cancer Survivors Network and the Kidney-onc site. Between the two of them I feel I get a pretty darn good assessment of the situation.

There's probably a better person than I on this site who can get you to kidney-onc more directly. I believe Texas Wedge has posted this info more succinctly.

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

"Succinctly" Peg?! You're confusing me with someone else! However, I did set up a thread expressly for this purpose. It's now sunk to somewhere on page 2 and it's entitled:

"ACOR - how to join lists, such as KIDNEY-ONC, RARE CANCERS, CHROMOPHOBE-RCC, CANCER-DEPRESSION, CANCER-FINANCE, CAREGIVERS"

Otherwise, you can find it by a quick copy and paste at:

http://csn.cancer.org/node/247312

Better yet, for K and others, I'll bring that thread forward again right now. It has just carried a mention of Fox, by the way - his fame continues to spread!

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