Nexavar after Liver Transplant and Mets to Lung

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ljw1121
ljw1121 Member Posts: 22
edited March 2014 in Liver Cancer #1
I'm a liver transplant recipient (2yrs ago) that was diagnosed with liver ca to the lungs 6mos ago. I'm on Nexavar and have been for 3mos. Side effects aren't that bad (slight nausea, hair thinning, but I do have fatigue that is worse some days than others and diarrhea that has sent me to the ER). My 1st scan showed no new growth and no change in size which is good. I have heard of some pts. on Nexavar that are 2yrs out and doing well. How about you? Oh and by the way if anyone is experiencing bad diarrhea, drink plenty of gatorade if you can. Hopefully this will keep you out of the ER

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  • slg
    slg Member Posts: 200
    #2
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    Nexavar
    My husband has only been on Nexavar for 3 weeks. So far his labs are good. He has had some side effects, hand/foot issues and tired. Curious as to how you found out about someone who has been on Nexavar for 2 years? Through Nexavar?
    Have you tried Imodium for the diarrhea?
  • ljw1121
    ljw1121 Member Posts: 22
    #3
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    slg said:

    Nexavar
    My husband has only been on Nexavar for 3 weeks. So far his labs are good. He has had some side effects, hand/foot issues and tired. Curious as to how you found out about someone who has been on Nexavar for 2 years? Through Nexavar?
    Have you tried Imodium for the diarrhea?

    Nexconnect
    I found out about the 2yrs out on Nexavar from the oncology nurses with Nexconnect. I was told that the studies only follow people for one yr, so they don't know exactly how well others are doing past that point, but pts that have kept in contact with them since starting Nexavar and are past that point, they can report their progress to people who inquire about it. As long as pts. keep in contact with them they can give others encouraging news about this treatment. And yes I've tried Immodium.but no good results. I just keep hydrated with Gatorade to keep from becoming dehydrated. Thanks for the suggestion anyway. Nexconnect is a 24hr hotline with oncology nurses that have alot of good suggestions for side effects I also had hand/foot syndrome and they gave me some good tips.
    .

    have
  • slg
    slg Member Posts: 200
    #4
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    ljw1121 said:

    Nexconnect
    I found out about the 2yrs out on Nexavar from the oncology nurses with Nexconnect. I was told that the studies only follow people for one yr, so they don't know exactly how well others are doing past that point, but pts that have kept in contact with them since starting Nexavar and are past that point, they can report their progress to people who inquire about it. As long as pts. keep in contact with them they can give others encouraging news about this treatment. And yes I've tried Immodium.but no good results. I just keep hydrated with Gatorade to keep from becoming dehydrated. Thanks for the suggestion anyway. Nexconnect is a 24hr hotline with oncology nurses that have alot of good suggestions for side effects I also had hand/foot syndrome and they gave me some good tips.
    .

    have

    Nextconnect
    Oh, I stay in contact with them on a weekly basis. They are great!
  • ljw1121
    ljw1121 Member Posts: 22
    #5
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    slg said:

    Nextconnect
    Oh, I stay in contact with them on a weekly basis. They are great!

    slg72
    I hope things are goin well with your husband. Haven't heard from u in a while. Let me know how ya'll are doing. My e-mail is lmw1121@yahoo.com .My computer at home is down right now so I get it thru my phone. Sometimes my phone messes up too. So forgive me if u don't hear back from me right away.

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