beatricefromPARIS
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beatricefromPARIS

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      • January 28, 2013 at 10:06 pm
      beatricefromPARIS
      Participant

      Same for me but it started when on Zel, several months after I stopped Ipi. Liver also under pressure.

      I hear mostly ears ringing in pillow in the morning when waking up.

      I consulted ear specialists several times. No one has a clue.

      It is still there after 10 months Zel. 

      Beatrice

      • January 28, 2013 at 10:06 pm
      beatricefromPARIS
      Participant

      Same for me but it started when on Zel, several months after I stopped Ipi. Liver also under pressure.

      I hear mostly ears ringing in pillow in the morning when waking up.

      I consulted ear specialists several times. No one has a clue.

      It is still there after 10 months Zel. 

      Beatrice

      • January 28, 2013 at 10:06 pm
      beatricefromPARIS
      Participant

      Same for me but it started when on Zel, several months after I stopped Ipi. Liver also under pressure.

      I hear mostly ears ringing in pillow in the morning when waking up.

      I consulted ear specialists several times. No one has a clue.

      It is still there after 10 months Zel. 

      Beatrice

      • May 10, 2012 at 11:45 am
      beatricefromPARIS
      Participant

      Hi

      I just had Zelboraf for a month and a half at full dose and ….full sample of the registered side effects plus ones that were not on the manufacturer's list such as strange ear noises and hearing changes!

      Had to stop because of fatigue and also liver could not take it. Fever appeared and liver enzyms levels went suddendly sky-rocketing. I think it is the combination of Zelboraf plus med for joint pain (ketoprofen) that did it. Liver took two weeks to go back to nearly normal levels.

      BUT

      scan results at 8 weeks were VERY good with significant decrease and only two visible tumors left!

      So I am about to start Zelboraf again at half dose together with low dose cortico-steroid.

       

      • May 10, 2012 at 11:45 am
      beatricefromPARIS
      Participant

      Hi

      I just had Zelboraf for a month and a half at full dose and ….full sample of the registered side effects plus ones that were not on the manufacturer's list such as strange ear noises and hearing changes!

      Had to stop because of fatigue and also liver could not take it. Fever appeared and liver enzyms levels went suddendly sky-rocketing. I think it is the combination of Zelboraf plus med for joint pain (ketoprofen) that did it. Liver took two weeks to go back to nearly normal levels.

      BUT

      scan results at 8 weeks were VERY good with significant decrease and only two visible tumors left!

      So I am about to start Zelboraf again at half dose together with low dose cortico-steroid.

       

      • May 10, 2012 at 11:45 am
      beatricefromPARIS
      Participant

      Hi

      I just had Zelboraf for a month and a half at full dose and ….full sample of the registered side effects plus ones that were not on the manufacturer's list such as strange ear noises and hearing changes!

      Had to stop because of fatigue and also liver could not take it. Fever appeared and liver enzyms levels went suddendly sky-rocketing. I think it is the combination of Zelboraf plus med for joint pain (ketoprofen) that did it. Liver took two weeks to go back to nearly normal levels.

      BUT

      scan results at 8 weeks were VERY good with significant decrease and only two visible tumors left!

      So I am about to start Zelboraf again at half dose together with low dose cortico-steroid.

       

      • May 6, 2014 at 6:12 pm
      beatricefromPARIS
      Participant

      Hello Tina

      Hope you are bearing your current trial well.

      Picking up on an old thread of messages…

      Just curious to know if the strange-shaped pupil you got when under Zelboraf went back to normal? I am concerned by mine!

      Wishing you the best.

      BeatricefromParis

      • May 6, 2014 at 6:12 pm
      beatricefromPARIS
      Participant

      Hello Tina

      Hope you are bearing your current trial well.

      Picking up on an old thread of messages…

      Just curious to know if the strange-shaped pupil you got when under Zelboraf went back to normal? I am concerned by mine!

      Wishing you the best.

      BeatricefromParis

      • May 6, 2014 at 6:12 pm
      beatricefromPARIS
      Participant

      Hello Tina

      Hope you are bearing your current trial well.

      Picking up on an old thread of messages…

      Just curious to know if the strange-shaped pupil you got when under Zelboraf went back to normal? I am concerned by mine!

      Wishing you the best.

      BeatricefromParis

      • July 6, 2012 at 9:58 am
      beatricefromPARIS
      Participant

      Hi Harriet,

       

      Thanks for asking!

      I am currently on half dose Zelboraf + corticoids and feeling fine apart from a bit of tiredness, curly thinning hair, a few pimples and the occasional sunburn.

      Things seem to be ok on the outside. Petscan in 10 days will tell about the inside…

      Beatrice

      • July 6, 2012 at 9:58 am
      beatricefromPARIS
      Participant

      Hi Harriet,

       

      Thanks for asking!

      I am currently on half dose Zelboraf + corticoids and feeling fine apart from a bit of tiredness, curly thinning hair, a few pimples and the occasional sunburn.

      Things seem to be ok on the outside. Petscan in 10 days will tell about the inside…

      Beatrice

      • July 6, 2012 at 9:58 am
      beatricefromPARIS
      Participant

      Hi Harriet,

       

      Thanks for asking!

      I am currently on half dose Zelboraf + corticoids and feeling fine apart from a bit of tiredness, curly thinning hair, a few pimples and the occasional sunburn.

      Things seem to be ok on the outside. Petscan in 10 days will tell about the inside…

      Beatrice

      • April 14, 2012 at 1:34 pm
      beatricefromPARIS
      Participant

      Vlad,

      I did Dacarbazine 3 months, then Fotemustine (not used in the US), then briefly Sorafenib then Cisplatin, then Interferon.

      This kept me alive for about 2,5 years. Not easy especially Cisplatin, but worth it.

      Doctors over here are not great fans of combos.

      Betarie stage IV 2009

      • April 14, 2012 at 1:34 pm
      beatricefromPARIS
      Participant

      Vlad,

      I did Dacarbazine 3 months, then Fotemustine (not used in the US), then briefly Sorafenib then Cisplatin, then Interferon.

      This kept me alive for about 2,5 years. Not easy especially Cisplatin, but worth it.

      Doctors over here are not great fans of combos.

      Betarie stage IV 2009

      • April 14, 2012 at 1:34 pm
      beatricefromPARIS
      Participant

      Vlad,

      I did Dacarbazine 3 months, then Fotemustine (not used in the US), then briefly Sorafenib then Cisplatin, then Interferon.

      This kept me alive for about 2,5 years. Not easy especially Cisplatin, but worth it.

      Doctors over here are not great fans of combos.

      Betarie stage IV 2009

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