Nexavar.....side effects

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I have RCC I had my left kidney removed but still have spots on my lung and in my lymph nodes. I tried nexavar, I was only on the medication (which hard for me to get in the 1st place, I had to practically beg) for 11 days and had SEVERE side effects, I had huge painfull blisters on hands and feet which made my skin peel off. I also had sores in my mouth and throat, two of my teeth cracked. I don't know if this has happened to anyone else, but I'd like to hear from you if you have!!!!

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Frankandcindy

My husband had the same hand-foot reaction after only 8 days. He also had a rash so severe that he looked severely sunburned from head to toe, his hair started falling out and his voice sounded like he was on helium. He took a break to heal and tried a half dose. Same reaction, it just took a few days longer. Finally he tried a 1/4 dose and then had to quit altogether. He is now into his second rount on Sutent. So far (knock on wood) the side effects have been neglible by comparison.

Cindy

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Nysp10

Cindy,

Thank you for responding. I'm not sure that I want to try any other meds. this is such a scary situation for me. Has your husband had any tests done since he started the new meds. to say wether or not they are working?

Tom

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Marymaz

My husband had the similar side effects. His whole body was as red as a beat and he had to be taken off nexavar. He was hospitalized with the side effects for 7 days. The skin on his body all peeled off (and I mean all from head to toe). He chose to try sutent. There are side effects but not as severe. The results for him so far on sutent (did 4 cycles) have shown the tumors in his lung and peritoneal area are "smaller". He is continuing on with sutent for now. Hope this helps Mary aka Mazzy

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My3sons

Tom, I know this situation is scary. But I would encourage you to talk to your kidney cancer specialist about Sutent. My husband was diagnosed with kidney cancer in December 2004 and had surgery to remove the tumor just days later. Believing that was all that needed to be done, we didn't pursue other treatments nor did we meet with an oncologist. When the cancer metastasized to his liver in May 2005 we decided it was time for us to become more aggressive concerning his treatment. He had another surgery and we made an appointment with an oncologist at the University of Minnesota Hospitals in Minneapolis, MN. Unfortunately, by the time my husband had recuperated from his liver surgery and we met with this oncologist, the cancer and returned to the liver site. Nexavar and Sutent were both in clinical trials at the time. The U of M was involved with the Sutent trial and my husband was approved for participation. He started taking Sutent in late August of 2005. While we can't speak for Nexavar having never been on it, we can say we feel the side effects suffered on the Sutent seem more tolerable from things we've heard. And, for us, the results were worth the ill effects. By October of 2005, he had shown a 35% reduction in tumor size (there were 3 when scanned in August). By February 2006, no metabolic activity was visible in scans, and by April 2006, the doctors could not see any signs of the tumors and the decision was made to quit taking the Sutent. Scans to date show no signs of recurrence. Each individual will handle medications differently. But I would encourage you to talk to your onocologist and give this drug a try. If you do decide to give it a chance, we would hope you show the same success that we saw with my husband. Good Luck.

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Frankandcindy

Tom,

We don't know yet if the meds are working, but we have tons of hope that they are. We were leary of the Sutent after his Nexavar reaction, but it really was nothing by comparison.

Hang in there and don't be afraid to try whatever it takes. Too bad we can't wish or pray this away, but we've tried that too and it just doesn't work.

God bless!

Cindy

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Marymaz

When I replied before I neglected to tell you that when my husband was on nexavar he had a good responce within 3 months. The side effects were what caused him to go off it and it was HIS decision to try nexavar. His oncologist wanted him to try the nexavar again but he was leary and scared. Our oncologist does promote nexavar and she has told us that patients she has on nexavar are responding well. Sutent is doing the trick for my husband and it made him feel more at ease trying sutent however the jury is still out. He will continue on with the side effects as the are "tolerable". The difference for him between nexavar and sutent was the major skin rash reaction. However the stomach issues with sutent are a real concern. So you have to way the pro's and con's and do what is best for you. Hope this helps Mary aka Mazzy

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Norman

my husband went the same route as you. kidney removed, cancer came back, tried natureopath, then tried nexavar. same results with hands and feet. feet so tender could not walk. finally after about two months, gave up on that. tried avastin but too expensive and not guaranteed to work. what a battle, but he felt good when he was not trying a drug. i wish you well.

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Yeffoc5

I had an outbreak at day 8 and have had to be off my feet for 3 days so far. I want to try the medicine again. Has anyone found ways to avoid the outbreaks and painful hand and foot syndrome?

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Arlene29

I also have kidney cancer with mets. I have been on Sutent sine 7/07. We are talking about changing to Nexava, because I am not responding well to the Sutent. In reading the message boards, it appears that the Nexavar symptoms are worse than Sutent, this really worries me.

With regard to the PPE. Duke Universiy did a study where patients with PPE took 400 Units of Vit. E every day and within 7 to 10 days the PPE disappeared or was lessened. I have been using Acquaphor on my feet every night with socks and on my hands and taking VIT E daily since before starting on the Sutent and have only two minor break outs of PPE. On the Sutent, I have had just about every side effect possible at one time or another, and since it's supposedly more toxic than Nexavar I confused as to why the side effects on Nexavar seem greater. Good luck and ask your Doc. about the Vit.E. (my son clued me into this. He is also a doc.)

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