How long did it take for Ipilimumab/Yervoy to start working for you? What side effects?
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How long did it take for Ipilimumab/Yervoy to start working for you? What side effects?

› Forums › General Melanoma Community › How long did it take for Ipilimumab/Yervoy to start working for you? What side effects?

  • Post
    • June 29, 2014 at 9:39 pm
    O_O
    Participant

    I've been on an Ipi 3mg/kg trial for three weeks now (for stage III, post-surgery adjuvant), but so far I've not felt any different. How long did it take for you? What side effects did you get?

    I heard getting white hairs is a good sign so I'm hoping to see those… especially since I've no measurable tumors so there's no other way to know if it's working.

Viewing 5 reply threads
  • Replies
      • June 30, 2014 at 5:16 pm
      Julie in SoCal
      Participant

      Hi Friend,

      Ipi can take a little while to kick in, as it sets your immune system to attack melanoma.  

      I had 4 bags of ipi earlier this year and I didn't have any significant side effects until afer the 3rd bag. I was always tired after the treatment, but could sleep it off mostly.  But after the 3rd bag I had a killer headache, and a strange rash and aches and pains in my joints. And of course the most important effect:  all my in transit mets melted away! Oh Happy Day!

      Now I'm a few months out and I feel good!  Keep talking to your Onc about what's going on with you and you'll get through this too.

      Blessings,

      Julie 

      Stage 3c: 10+ WLE, 2 SNB, HDINF, GM-CSF, IPI = NED!!

      • June 30, 2014 at 5:16 pm
      Julie in SoCal
      Participant

      Hi Friend,

      Ipi can take a little while to kick in, as it sets your immune system to attack melanoma.  

      I had 4 bags of ipi earlier this year and I didn't have any significant side effects until afer the 3rd bag. I was always tired after the treatment, but could sleep it off mostly.  But after the 3rd bag I had a killer headache, and a strange rash and aches and pains in my joints. And of course the most important effect:  all my in transit mets melted away! Oh Happy Day!

      Now I'm a few months out and I feel good!  Keep talking to your Onc about what's going on with you and you'll get through this too.

      Blessings,

      Julie 

      Stage 3c: 10+ WLE, 2 SNB, HDINF, GM-CSF, IPI = NED!!

      • June 30, 2014 at 5:16 pm
      Julie in SoCal
      Participant

      Hi Friend,

      Ipi can take a little while to kick in, as it sets your immune system to attack melanoma.  

      I had 4 bags of ipi earlier this year and I didn't have any significant side effects until afer the 3rd bag. I was always tired after the treatment, but could sleep it off mostly.  But after the 3rd bag I had a killer headache, and a strange rash and aches and pains in my joints. And of course the most important effect:  all my in transit mets melted away! Oh Happy Day!

      Now I'm a few months out and I feel good!  Keep talking to your Onc about what's going on with you and you'll get through this too.

      Blessings,

      Julie 

      Stage 3c: 10+ WLE, 2 SNB, HDINF, GM-CSF, IPI = NED!!

      • June 30, 2014 at 5:16 pm
      Julie in SoCal
      Participant

      Hi Friend,

      Ipi can take a little while to kick in, as it sets your immune system to attack melanoma.  

      I had 4 bags of ipi earlier this year and I didn't have any significant side effects until afer the 3rd bag. I was always tired after the treatment, but could sleep it off mostly.  But after the 3rd bag I had a killer headache, and a strange rash and aches and pains in my joints. And of course the most important effect:  all my in transit mets melted away! Oh Happy Day!

      Now I'm a few months out and I feel good!  Keep talking to your Onc about what's going on with you and you'll get through this too.

      Blessings,

      Julie 

      Stage 3c: 10+ WLE, 2 SNB, HDINF, GM-CSF, IPI = NED!!

      • June 30, 2014 at 5:16 pm
      Julie in SoCal
      Participant

      Hi Friend,

      Ipi can take a little while to kick in, as it sets your immune system to attack melanoma.  

      I had 4 bags of ipi earlier this year and I didn't have any significant side effects until afer the 3rd bag. I was always tired after the treatment, but could sleep it off mostly.  But after the 3rd bag I had a killer headache, and a strange rash and aches and pains in my joints. And of course the most important effect:  all my in transit mets melted away! Oh Happy Day!

      Now I'm a few months out and I feel good!  Keep talking to your Onc about what's going on with you and you'll get through this too.

      Blessings,

      Julie 

      Stage 3c: 10+ WLE, 2 SNB, HDINF, GM-CSF, IPI = NED!!

        • June 30, 2014 at 6:10 pm
        O_O
        Participant

        Wow ok, congrats! 

        • June 30, 2014 at 6:10 pm
        O_O
        Participant

        Wow ok, congrats! 

        • June 30, 2014 at 6:10 pm
        O_O
        Participant

        Wow ok, congrats! 

        • July 1, 2014 at 1:45 pm
        Ginger8888
        Participant

        I'm doing my second treatment Thursday and was curiouse also..So far no side effects for me either..Good luck ..Let's hope this kicks melanoma butt!!

        • July 1, 2014 at 8:36 pm
        adriana cooper
        Participant

        I just started on IPI this past Thursday so only 6 days out and already have had reactions to it. I am stage 4 with lung mets. I started with itching while getting IPI then the next day the joint pain, nausea, vomiting and headaches started. I have trouble walking now.  I have also had 5 high doses of radiation to the recurrence on my arm just prior so apparently my immune system is in high gear. Everyone is different I just get to be the lucky one and get it all at once​.indecision  

        Good​ luck with your treatments. I am hoping that in three months with all these fun side effects my cancer will be gone. smiley

         

        • July 1, 2014 at 8:36 pm
        adriana cooper
        Participant

        I just started on IPI this past Thursday so only 6 days out and already have had reactions to it. I am stage 4 with lung mets. I started with itching while getting IPI then the next day the joint pain, nausea, vomiting and headaches started. I have trouble walking now.  I have also had 5 high doses of radiation to the recurrence on my arm just prior so apparently my immune system is in high gear. Everyone is different I just get to be the lucky one and get it all at once​.indecision  

        Good​ luck with your treatments. I am hoping that in three months with all these fun side effects my cancer will be gone. smiley

         

        • July 1, 2014 at 8:36 pm
        adriana cooper
        Participant

        I just started on IPI this past Thursday so only 6 days out and already have had reactions to it. I am stage 4 with lung mets. I started with itching while getting IPI then the next day the joint pain, nausea, vomiting and headaches started. I have trouble walking now.  I have also had 5 high doses of radiation to the recurrence on my arm just prior so apparently my immune system is in high gear. Everyone is different I just get to be the lucky one and get it all at once​.indecision  

        Good​ luck with your treatments. I am hoping that in three months with all these fun side effects my cancer will be gone. smiley

         

        • July 1, 2014 at 1:45 pm
        Ginger8888
        Participant

        I'm doing my second treatment Thursday and was curiouse also..So far no side effects for me either..Good luck ..Let's hope this kicks melanoma butt!!

        • July 1, 2014 at 1:45 pm
        Ginger8888
        Participant

        I'm doing my second treatment Thursday and was curiouse also..So far no side effects for me either..Good luck ..Let's hope this kicks melanoma butt!!

      • June 30, 2014 at 5:16 pm
      Julie in SoCal
      Participant

      Hi Friend,

      Ipi can take a little while to kick in, as it sets your immune system to attack melanoma.  

      I had 4 bags of ipi earlier this year and I didn't have any significant side effects until afer the 3rd bag. I was always tired after the treatment, but could sleep it off mostly.  But after the 3rd bag I had a killer headache, and a strange rash and aches and pains in my joints. And of course the most important effect:  all my in transit mets melted away! Oh Happy Day!

      Now I'm a few months out and I feel good!  Keep talking to your Onc about what's going on with you and you'll get through this too.

      Blessings,

      Julie 

      Stage 3c: 10+ WLE, 2 SNB, HDINF, GM-CSF, IPI = NED!!

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