Long Term Survival

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Rob Says:


Would like to hear from anyone who has been a long-term user of Nexavar. I am on my 45th cycle and my oncologist has not had anyone else stay on it for such a long time. We are looking for information on side-effects for long-term users.



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Rob Says:

From the lack of responses, I am wondering if Nexavar is used in the USA. I am in South Africa, and we do not have a lot of the facilities, options and drugs that are available there.

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Verwon Says:

It is available here in the U.S., it just appears that it not the common first choice treatment option.

I'm sorry, I wish you'd have gotten some responses and had been provided with more information.

I'm glancing over the information listed by the FDA, but there's really nothing on here regarding long-term use.

Some of the serious side effects that the manufacturer lists on the Nexavar website include decreased blood flow to the heart, high blood pressure, bowel perforations, liver inflammation and QT prolongation of the heart.

Is your doctor monitoring you regularly for such issues?

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Rob Says:

Thanks Verwon, you seem to have confirmed my assumption. I am familiar with the Nexavar literature, my 45 cycles of treatment refers to the four-weekly process of an examination by the oncologist and issue of my next batch of medication, so you see I have been on it for over three years. The longest any other patient has lasted on it with my oncologist is less than twelve months. That is why we are looking for other people who might have similar experiences to mine, and from whom we might be able to learn what to look out for.

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Erin Says:
via mobile

Hi. My father just started using this for AML. I was wondering if you have experienced any itching? He can't sleep at night because his head itches so much. If so, do you have any ideas on how to relieve the itching? The steroid creams are not working.
Also, in my search to help find him help I have stumbled across someone who was on nexavar for 5 years. The post was from a few years ago and I believe the person was using it for kidney cancer.

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Connie Dunseith Says:
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I have taken it since February 2008, the only side effects I have is on my feet, it feels like blisters but nothing is there, besides a callus, only bothersome between seasons, and fatigue, but I'll drink a cup of coffee and if I need to drive late at night I skip the evening dose. I have cancer on both lungs that have stayed stable since.

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Lynn Says:
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Re: Erin (# 4)

Hi Erin, how is your father? Was the Nexavar effective? My son is 18 has Aml with flt3 gene mutation. He has been on 1/2 the recommended dose for 2 weeks now, however the diarrhea & nausea are terrible.

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