Renal Cell Carcinoma (Kidney Cancer) Support Group

Renal cell carcinoma, also known by a gurnistical tumor, is the most common form of kidney cancer arising from the renal tubule. It is the most common type of kidney cancer in adults. Initial therapy is with surgery. It is notoriously resistant to radiation therapy and chemotherapy, although some cases respond to immunotherapy.

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Nexavar

Hello and my prayer's are with everyone.. I just came off sutent it did work for me, on for almost 1 year. I am on Nexavar started at 800mg two doses of 400mg. But it was too strong broke out in a bad face and head rash like second degree sunburn. We have reduced to 400mg and when it totally clears, which it almost has. Back up 600 mg of nexavar.

The other side effect's are mild. With regards to sutent my stomach did suffer. But hey if it works they can drop bricks on my head. I always say cancer probably will kill me but it never ever will beat me!!!!!!!!

Replies

deleted_user
deleted_user

What a wonderful attitude!!!!

You are not the only person on here who suffers from the rash of Nexavar. And like you, for them the "fix" seems to be reducing the dosage..

I am on Sutent now, midway through my second cycle. I'm curious why your oncologist took you off Sutent and put you on Nexavar.

Keep the faith, my friend and above all, that positive thinking!

Dave
deleted_user
deleted_user

Marc, what was it that brought you off of sutent? Did the growths return or was it other side effects to handling it? I have been on sutent just over 6 months and the decrease in the nodes has slowed but I cant find out from anyone what to expect in the future. I will be starting my 7th cycle soon and find the side effects very liveable so far but have not found anyone who has been on it for a long time. Your attitude is great, however. Best of luck to you.
deleted_user
deleted_user

Hi My name is Mike Plummer. I was on Sutent for about a year and started Nexavar around X-mass time. After 2 months on it my Dr said the groth rate of my lung mets was so fast that it wasn't working for me. I know this is about a $5,300 per month drug and I have an unopened factory sealed bottle of 120, 200mg pills that I would like to give to anyone that needs or can use them. my number is (515) 229-4105. I just hate to see them go to waste.
Mike
deleted_user
deleted_user

What a generous offer, Mike

I hope someone on this site can use it.

If no one can, rather than just throwing it away, offer it to your oncologist. I know many practices do take unopened medicines and keep in reserve for "deserving" cases.

Dave
deleted_user
deleted_user

Hi Dave, I tried my oncologist, the distributing pharmacy and kidneycancer.org. No one seems to want to touch it. I stumbled on this site yeasteday just trying to find someone directly who is on it. I think i would have an easier time getting rid of a bag of dope and charging for it then trying to give away this really expensive drug. Not that I wouild condone such an activity, I'm just saying.

Good luck with your Sutent! I think I made about 10 cycles of that and the last couple of weeks were always draining.
deleted_user
deleted_user

Hi, I am curious if the Sutent was working why did you come off of it? I have been on it for almost 9 months. My stomach always feels a little upset and my appetite is small (not that I can complain about the excess weight I have lost). So, why did you change?
deleted_user
deleted_user

Apparently the rate of growth on my lung mets was increasing and my Dr. believed I had gotten all the good I could out of Sutent. I'm now sitting in a waiting room at the Mayo Clinic in Rochester to see if there is anything eles out there or if I am completly done with conventional treatment.
deleted_user
deleted_user

To All stay positve and up beat there is always hope. There are 2 more new and approved oral chemo drugs besides Nexavar. I just got done with my blood work and ct and mri scans, see my oncologist on the 28 th of April in Philly.

I pray that the Nexavar has stopped or reduced my growth of the tumor on my hip and nodes in my lungs and no new growth.

Never give up the fight - "Strength & Courage" .......