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Anyone else have problems taking Nexavar?

teresam6464's picture
teresam6464
Posts: 9
Joined: Sep 2010

My husband has been on Nexavar, since Nov. 2010. In the beginning, he was started on the full dose of 800 mg per day. Almost immediately, the side effects kicked in. According to the Nurses from Nexavar, he has every side effect, except high blood pressure. The Onc. has tried everything from taking him off for a week at a time, to lowering the dosage to half, but still these horrible side effects continue. It's gotten to the point where the Onc. is now allowing him to be off the chemo for 2 whole weeks, and then he will start back on only a fourth of the recommended 800 mgs. He will be monitored to see if things get any better, as far as the side effects. I mean these side-effects are so bad, he loses all quality of life, when he's taking this stuff. Onc. really wants him to try and tolerate, but if it doesn't work this time, then he may switch him to Doxirubicin? I'm so afraid at this point, with the Onc. taking him off and on something because of the side-effects, while his liver cancer may be getting worse while he's off of the med. But at the same time it seems we may be at the point where we're having to weigh out quality of life vs. medication. It can't possibly be time for that yet, can it? BTW his blood work is normal. His dxs is HCC with mets to the lungs.

ceeflat
Posts: 8
Joined: Dec 2010

I have been on nexavar since september 2010...I started on a half dose the first
month and have been on the full 800mg since then...I've had a good response with
reduction in tumor size and AFP way down; the sides have been tough at times, but
in my case have been manageable...lately my hemoglobin was down so I have been on
iron supplements to bring my iron levels up. I'm trying to stay at full dose because
there aren't many options to treat large hepatomas (over 18cm at first} like i was
diagnosed with. I have read of a study where nexavar was used in conjunction with
beta blockers (inderal) and anti-inflammatories to make the sides more tolerable.
I don't know if they would help your husband, but you might talk to your doctor about
it.
I wish you the best in your fight against this devastating disease.

slg
Posts: 200
Joined: Jan 2010

Nexavar does work! My husband is proof of that! The Nexavar nurses can be very helpful in managing the side effects. There are creams for the rash, Imodium for the diarrhea etc.
My husband is now on 800 mg a day. He started out at 800mg but had to cut back. He tolerated 600 mg for many months before the doctor upped his dose to 800mg. We are waiting for a Therasphere treatment to shrink the tumors to put him active on the transplant list.
We have made it a practice to stay postive throughout this past year and it has paid off. Keep the faith and don't give up!

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