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BeckSTAR

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      BeckSTAR
      Participant

      I read up a little on the website but will def look into the media stuff.  Thanks!  I'm a little anxious right now becuase now he's in the ER for some infectious concerns…. I hope this doesn't delay the study med too much.  At least they ruled out a clot, now thinking cellulitis.  The nurse in me is concerned it is more tumor though :/ 

      BeckSTAR
      Participant

      I read up a little on the website but will def look into the media stuff.  Thanks!  I'm a little anxious right now becuase now he's in the ER for some infectious concerns…. I hope this doesn't delay the study med too much.  At least they ruled out a clot, now thinking cellulitis.  The nurse in me is concerned it is more tumor though :/ 

      BeckSTAR
      Participant

      I read up a little on the website but will def look into the media stuff.  Thanks!  I'm a little anxious right now becuase now he's in the ER for some infectious concerns…. I hope this doesn't delay the study med too much.  At least they ruled out a clot, now thinking cellulitis.  The nurse in me is concerned it is more tumor though :/ 

      BeckSTAR
      Participant

      Great! Haven't seen this info so thanks so much for sharing.

      BeckSTAR
      Participant

      Great! Haven't seen this info so thanks so much for sharing.

      BeckSTAR
      Participant

      Great! Haven't seen this info so thanks so much for sharing.

      BeckSTAR
      Participant

      Under Forida Cancer Specialists and Research Institute in Naples, FL.  My parents just vagely said "it's like Pembro"…should shrink/stop progression and his symptoms/pain should relieve within a couple weeks of starting hopefully. I am not there and haven't been able to speak to the MD.  It's frustrating because I am so far away (in Cali) although I'm taking FMLA to go be there for a month so hopefully can be more involved. 

      BeckSTAR
      Participant

      Under Forida Cancer Specialists and Research Institute in Naples, FL.  My parents just vagely said "it's like Pembro"…should shrink/stop progression and his symptoms/pain should relieve within a couple weeks of starting hopefully. I am not there and haven't been able to speak to the MD.  It's frustrating because I am so far away (in Cali) although I'm taking FMLA to go be there for a month so hopefully can be more involved. 

      BeckSTAR
      Participant

      Under Forida Cancer Specialists and Research Institute in Naples, FL.  My parents just vagely said "it's like Pembro"…should shrink/stop progression and his symptoms/pain should relieve within a couple weeks of starting hopefully. I am not there and haven't been able to speak to the MD.  It's frustrating because I am so far away (in Cali) although I'm taking FMLA to go be there for a month so hopefully can be more involved. 

      BeckSTAR
      Participant

      other med it may be in combination with is varlilumab.

      He is BRAF negative from what I read up on his biopsy from last year.

      BeckSTAR
      Participant

      other med it may be in combination with is varlilumab.

      He is BRAF negative from what I read up on his biopsy from last year.

      BeckSTAR
      Participant

      other med it may be in combination with is varlilumab.

      He is BRAF negative from what I read up on his biopsy from last year.

      BeckSTAR
      Participant

      Wow, that is amazing!  Thank you for this reassurance, I am hoping that this works awhile for him also.  After reading a bit on the trial it mentioned that having a rash initially may be indicative of it working better/longer? Did you experience any rash?  We did receive some good news today that looks like they will start it on Monday, a few days earlier…fingers crossed!  Good luck to you also.

      BeckSTAR
      Participant

      Wow, that is amazing!  Thank you for this reassurance, I am hoping that this works awhile for him also.  After reading a bit on the trial it mentioned that having a rash initially may be indicative of it working better/longer? Did you experience any rash?  We did receive some good news today that looks like they will start it on Monday, a few days earlier…fingers crossed!  Good luck to you also.

      BeckSTAR
      Participant

      Wow, that is amazing!  Thank you for this reassurance, I am hoping that this works awhile for him also.  After reading a bit on the trial it mentioned that having a rash initially may be indicative of it working better/longer? Did you experience any rash?  We did receive some good news today that looks like they will start it on Monday, a few days earlier…fingers crossed!  Good luck to you also.

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