Karin L
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Karin L

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  • Replies
      • September 30, 2012 at 7:21 pm
      Karin L
      Participant

      So much love and prayers to you both Brenda…Godspeed Kevin.  We love you much. 

      Karin

      • September 30, 2012 at 7:21 pm
      Karin L
      Participant

      So much love and prayers to you both Brenda…Godspeed Kevin.  We love you much. 

      Karin

      • September 30, 2012 at 7:21 pm
      Karin L
      Participant

      So much love and prayers to you both Brenda…Godspeed Kevin.  We love you much. 

      Karin

      • March 6, 2013 at 4:43 pm
      Karin L
      Participant
      Thank you all for the kind thoughts and prayers. Family has always been my source of life and happiness. Three children and 2 small g-kids ..What more can I say?
      Josh I was currently seeing Dr Kaufmann at Rush because he was suppose to get the PD-1 trial which fell through but FYI Univ. of Chicago is accepting patients.
      I never had a real snswer about being a K mutation but that they just don’t know because very few are researching it.
      These Drs are just too busy IMO.

      Karin

      • March 6, 2013 at 4:43 pm
      Karin L
      Participant
      Thank you all for the kind thoughts and prayers. Family has always been my source of life and happiness. Three children and 2 small g-kids ..What more can I say?
      Josh I was currently seeing Dr Kaufmann at Rush because he was suppose to get the PD-1 trial which fell through but FYI Univ. of Chicago is accepting patients.
      I never had a real snswer about being a K mutation but that they just don’t know because very few are researching it.
      These Drs are just too busy IMO.

      Karin

      • March 6, 2013 at 4:43 pm
      Karin L
      Participant
      Thank you all for the kind thoughts and prayers. Family has always been my source of life and happiness. Three children and 2 small g-kids ..What more can I say?
      Josh I was currently seeing Dr Kaufmann at Rush because he was suppose to get the PD-1 trial which fell through but FYI Univ. of Chicago is accepting patients.
      I never had a real snswer about being a K mutation but that they just don’t know because very few are researching it.
      These Drs are just too busy IMO.

      Karin

      • September 30, 2012 at 7:29 pm
      Karin L
      Participant

      I forgot hair loss too.

      Karin

      • September 30, 2012 at 7:29 pm
      Karin L
      Participant

      I forgot hair loss too.

      Karin

      • September 30, 2012 at 7:29 pm
      Karin L
      Participant

      I forgot hair loss too.

      Karin

      • September 30, 2012 at 7:15 pm
      Karin L
      Participant

      Congrats on being able to celebrate your daughter's success! 

      I have been having the worst time taking Z.  When I first began, at day 6 I broke out in a chicken pox like rash starting at my head with progressio down my body. Also chills and very high fevers nonstop.  Bloodshot eyes.  I went off the drug for a few days and started back at 1 pill 2x a day for 3 days, then increased to 2 pills 2x a day and I did pretty well at that point.  Mostly chills and fevers, painful nodules on my hands and feet, joint pain and some eye issues.  I then progressed to 3 pills 2x a day and everything got worse.  The one side affect in addition to those listed above was nausea.  I take nausea pills and they don't work whatsoeve.  I have no desire to eat and little taste of food.  It's the weekend so I went ahead and dropped to 2 pills 2x a day.  I have read that at that dose it doesn't even work!  I have no idea.  Side affects have started to lessen a little bit but not much.  I am so discouraged right now.

       

      Karin

      • September 30, 2012 at 7:15 pm
      Karin L
      Participant

      Congrats on being able to celebrate your daughter's success! 

      I have been having the worst time taking Z.  When I first began, at day 6 I broke out in a chicken pox like rash starting at my head with progressio down my body. Also chills and very high fevers nonstop.  Bloodshot eyes.  I went off the drug for a few days and started back at 1 pill 2x a day for 3 days, then increased to 2 pills 2x a day and I did pretty well at that point.  Mostly chills and fevers, painful nodules on my hands and feet, joint pain and some eye issues.  I then progressed to 3 pills 2x a day and everything got worse.  The one side affect in addition to those listed above was nausea.  I take nausea pills and they don't work whatsoeve.  I have no desire to eat and little taste of food.  It's the weekend so I went ahead and dropped to 2 pills 2x a day.  I have read that at that dose it doesn't even work!  I have no idea.  Side affects have started to lessen a little bit but not much.  I am so discouraged right now.

       

      Karin

      • September 30, 2012 at 7:15 pm
      Karin L
      Participant

      Congrats on being able to celebrate your daughter's success! 

      I have been having the worst time taking Z.  When I first began, at day 6 I broke out in a chicken pox like rash starting at my head with progressio down my body. Also chills and very high fevers nonstop.  Bloodshot eyes.  I went off the drug for a few days and started back at 1 pill 2x a day for 3 days, then increased to 2 pills 2x a day and I did pretty well at that point.  Mostly chills and fevers, painful nodules on my hands and feet, joint pain and some eye issues.  I then progressed to 3 pills 2x a day and everything got worse.  The one side affect in addition to those listed above was nausea.  I take nausea pills and they don't work whatsoeve.  I have no desire to eat and little taste of food.  It's the weekend so I went ahead and dropped to 2 pills 2x a day.  I have read that at that dose it doesn't even work!  I have no idea.  Side affects have started to lessen a little bit but not much.  I am so discouraged right now.

       

      Karin

      • September 16, 2012 at 7:24 pm
      Karin L
      Participant

      Ali….I think of you and pray for you everyday.  This is such AWESOME news!!!!  Now don't disappear on us but go enjoy those boys and hubby and stop in once in a while. 

       

      Karin

      • September 16, 2012 at 7:24 pm
      Karin L
      Participant

      Ali….I think of you and pray for you everyday.  This is such AWESOME news!!!!  Now don't disappear on us but go enjoy those boys and hubby and stop in once in a while. 

       

      Karin

      • September 16, 2012 at 7:24 pm
      Karin L
      Participant

      Ali….I think of you and pray for you everyday.  This is such AWESOME news!!!!  Now don't disappear on us but go enjoy those boys and hubby and stop in once in a while. 

       

      Karin

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