Rash is getting a little crazy
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Rash is getting a little crazy

› Forums › General Melanoma Community › Rash is getting a little crazy

  • Post
    • December 25, 2016 at 8:14 pm
    Nicklindner
    Participant

    Merry Christmas everyone. I was hoping to get a little guidance. I receive my first ipi/nivo combo on the 12/15 and about 3 days ago started getting rashes on the back of my arms( which from reading posts on this board I believe is a good thing?). However the rash is growing to my stomach and chest and midsection. Just now starting to itch on my arms. Should I reach out to my doctor or will this rash start to subside?  

    Also I have been getting some really wild calf cramps. Anybody experience that?  For about 3 minutes it kills and go away. 

    Thanks everybody!

Viewing 14 reply threads
  • Replies
      • December 25, 2016 at 8:55 pm
      ed williams
      Participant

      Hi NickLindner, I have a short video for you that is current and features Evan Lipson of John Hopkins University. The bottom line of the video is stay in contact with your doctors, or his or her nurse and with the combination having about a 50% grade 3/4 adverse effect history, being fast acting is the way to go. If you do require steroid treatment the sooner you start the faster you can get off them. Best Wishes!!! Ed  https://www.youtube.com/watch?v=2MAmESB4czA 

      • December 25, 2016 at 8:55 pm
      ed williams
      Participant

      Hi NickLindner, I have a short video for you that is current and features Evan Lipson of John Hopkins University. The bottom line of the video is stay in contact with your doctors, or his or her nurse and with the combination having about a 50% grade 3/4 adverse effect history, being fast acting is the way to go. If you do require steroid treatment the sooner you start the faster you can get off them. Best Wishes!!! Ed  https://www.youtube.com/watch?v=2MAmESB4czA 

      • December 25, 2016 at 8:55 pm
      ed williams
      Participant

      Hi NickLindner, I have a short video for you that is current and features Evan Lipson of John Hopkins University. The bottom line of the video is stay in contact with your doctors, or his or her nurse and with the combination having about a 50% grade 3/4 adverse effect history, being fast acting is the way to go. If you do require steroid treatment the sooner you start the faster you can get off them. Best Wishes!!! Ed  https://www.youtube.com/watch?v=2MAmESB4czA 

      • December 25, 2016 at 9:12 pm
      jennunicorn
      Participant

      You definitely want to contact your doc's office/nurse as soon as possible. Any reaction or side effect you should let your doc know right away, the faster these things are known the faster they can get treated before it gets too bad. I haven't had rashes, just itchy skin all over, but my onc reminds me all the time to give her a ring if a rash pops up.

      Haven't had calf cramps, not sure if that's from the drugs or not. You may be low in potassium, eat some bananas and other potassium rich foods and see if that helps your cramps.

      Merry Christmas!

      • December 25, 2016 at 9:12 pm
      jennunicorn
      Participant

      You definitely want to contact your doc's office/nurse as soon as possible. Any reaction or side effect you should let your doc know right away, the faster these things are known the faster they can get treated before it gets too bad. I haven't had rashes, just itchy skin all over, but my onc reminds me all the time to give her a ring if a rash pops up.

      Haven't had calf cramps, not sure if that's from the drugs or not. You may be low in potassium, eat some bananas and other potassium rich foods and see if that helps your cramps.

      Merry Christmas!

      • December 25, 2016 at 9:12 pm
      jennunicorn
      Participant

      You definitely want to contact your doc's office/nurse as soon as possible. Any reaction or side effect you should let your doc know right away, the faster these things are known the faster they can get treated before it gets too bad. I haven't had rashes, just itchy skin all over, but my onc reminds me all the time to give her a ring if a rash pops up.

      Haven't had calf cramps, not sure if that's from the drugs or not. You may be low in potassium, eat some bananas and other potassium rich foods and see if that helps your cramps.

      Merry Christmas!

      • December 25, 2016 at 9:17 pm
      Nicklindner
      Participant

      Thank you!  I will shoot the Doc a text and let her know. But is it safe to assume that my body is responding to the drugs since I have been experiencing side effects?  This is a good thing right?

        • December 25, 2016 at 9:25 pm
        jennunicorn
        Participant

        From what we've observed it does seem to mean your immune system is kicked into gear and should get working to kick some melanoma butt! 🙂

        • December 25, 2016 at 9:25 pm
        jennunicorn
        Participant

        From what we've observed it does seem to mean your immune system is kicked into gear and should get working to kick some melanoma butt! 🙂

        • December 25, 2016 at 9:25 pm
        jennunicorn
        Participant

        From what we've observed it does seem to mean your immune system is kicked into gear and should get working to kick some melanoma butt! 🙂

      • December 25, 2016 at 9:17 pm
      Nicklindner
      Participant

      Thank you!  I will shoot the Doc a text and let her know. But is it safe to assume that my body is responding to the drugs since I have been experiencing side effects?  This is a good thing right?

      • December 25, 2016 at 9:17 pm
      Nicklindner
      Participant

      Thank you!  I will shoot the Doc a text and let her know. But is it safe to assume that my body is responding to the drugs since I have been experiencing side effects?  This is a good thing right?

      • December 25, 2016 at 9:41 pm
      Nicklindner
      Participant

      🙂

        • December 25, 2016 at 11:44 pm
        debwray
        Participant

        Hi,

        Not sure how easy it will be to get a reply over the Christmas break-  but grade 1-2  rashes can to be managed initially by over the counter topical hydrocortisone cream and antihistamines.

        http://www.opdivohcp.bmscustomerconnect.com/servlet/servlet.FileDownload?file=00Pi000000Hj19REAR

        see nivo management guide page 16-17.You still need to let your docs know what is going on..but maybe you can stop it getting too crazy  in the meantime??Others on the board  seem to like  oatmeal products -and something with gold in the name. Hope its not too itchy….

         

        Deb

         

        • December 25, 2016 at 11:44 pm
        debwray
        Participant

        Hi,

        Not sure how easy it will be to get a reply over the Christmas break-  but grade 1-2  rashes can to be managed initially by over the counter topical hydrocortisone cream and antihistamines.

        http://www.opdivohcp.bmscustomerconnect.com/servlet/servlet.FileDownload?file=00Pi000000Hj19REAR

        see nivo management guide page 16-17.You still need to let your docs know what is going on..but maybe you can stop it getting too crazy  in the meantime??Others on the board  seem to like  oatmeal products -and something with gold in the name. Hope its not too itchy….

         

        Deb

         

        • December 25, 2016 at 11:44 pm
        debwray
        Participant

        Hi,

        Not sure how easy it will be to get a reply over the Christmas break-  but grade 1-2  rashes can to be managed initially by over the counter topical hydrocortisone cream and antihistamines.

        http://www.opdivohcp.bmscustomerconnect.com/servlet/servlet.FileDownload?file=00Pi000000Hj19REAR

        see nivo management guide page 16-17.You still need to let your docs know what is going on..but maybe you can stop it getting too crazy  in the meantime??Others on the board  seem to like  oatmeal products -and something with gold in the name. Hope its not too itchy….

         

        Deb

         

      • December 25, 2016 at 9:41 pm
      Nicklindner
      Participant

      🙂

      • December 25, 2016 at 9:41 pm
      Nicklindner
      Participant

      🙂

      • December 27, 2016 at 2:41 pm
      Hukill
      Participant

      My dr on the first treatment sent me home with 3 pints of steriod cream and 3 quarts of moisterizer. I have had the rash on the back of my arms and chest since mid july but only 2 or 3 bumps itched for a short period and the steroid cream took care of that. I guess he thought I would have a horrible rash. I have not had cramps. Are you drinking lots of water?

      • December 27, 2016 at 2:41 pm
      Hukill
      Participant

      My dr on the first treatment sent me home with 3 pints of steriod cream and 3 quarts of moisterizer. I have had the rash on the back of my arms and chest since mid july but only 2 or 3 bumps itched for a short period and the steroid cream took care of that. I guess he thought I would have a horrible rash. I have not had cramps. Are you drinking lots of water?

      • December 27, 2016 at 2:41 pm
      Hukill
      Participant

      My dr on the first treatment sent me home with 3 pints of steriod cream and 3 quarts of moisterizer. I have had the rash on the back of my arms and chest since mid july but only 2 or 3 bumps itched for a short period and the steroid cream took care of that. I guess he thought I would have a horrible rash. I have not had cramps. Are you drinking lots of water?

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