melonoma getting worse. going to start YERVOY
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melonoma getting worse. going to start YERVOY

› Forums › General Melanoma Community › melonoma getting worse. going to start YERVOY

  • Post
    • September 4, 2011 at 1:11 pm
    j.m.l.
    Participant

    Please help. This is all new to me. Am I doing the right  thing in starting this treatment given the serious side effects. Operation now not possible. Had 4 prev. opeations and cancer progressing. thank you for fast response.

    Please help. This is all new to me. Am I doing the right  thing in starting this treatment given the serious side effects. Operation now not possible. Had 4 prev. opeations and cancer progressing. thank you for fast response.

Viewing 7 reply threads
  • Replies
      • September 4, 2011 at 3:18 pm
      lhaley
      Participant

      All drugs have some toxic side effects. Many have done quite well on Yervoy. The key is communication with your Dr. Don't ignore the side effects and don't self medicate.  While I haven't gone on a systemic treatment except for GMCSF 5 years ago they thought they were going to put me on Yervoy last month (ended up being benign). What I wrote was the exact words my mel specialist said to me. 

      Let us know how you are doing,

      Linda

      stage IV since 06 , currently NED

      • September 4, 2011 at 3:18 pm
      lhaley
      Participant

      All drugs have some toxic side effects. Many have done quite well on Yervoy. The key is communication with your Dr. Don't ignore the side effects and don't self medicate.  While I haven't gone on a systemic treatment except for GMCSF 5 years ago they thought they were going to put me on Yervoy last month (ended up being benign). What I wrote was the exact words my mel specialist said to me. 

      Let us know how you are doing,

      Linda

      stage IV since 06 , currently NED

      • September 4, 2011 at 5:10 pm
      washoegal
      Participant

      You are at one of the best cancer centers, you need to trust your doctor.  Do a search hear for hints  on how to deal with the effect of Yervoy/Ipi.  There are some helpful hints.  But as stated before don't self medicate and do keep an open dialog with your doctor.  Any treatment that is going to attack cancer is NASTY that's the facts of life. 

       

      If this is a new primary and you are still stage 3, inoperable, this may be you best option.

       

      Good Luck

      Mary

      Stage 3

      • September 4, 2011 at 5:10 pm
      washoegal
      Participant

      You are at one of the best cancer centers, you need to trust your doctor.  Do a search hear for hints  on how to deal with the effect of Yervoy/Ipi.  There are some helpful hints.  But as stated before don't self medicate and do keep an open dialog with your doctor.  Any treatment that is going to attack cancer is NASTY that's the facts of life. 

       

      If this is a new primary and you are still stage 3, inoperable, this may be you best option.

       

      Good Luck

      Mary

      Stage 3

        • September 4, 2011 at 6:18 pm
        Lisa13
        Participant

        I've been on Yervoy for 4 weeks and havn't had any side effects yet. Everyone is very different and only a small percentage of people have serious side effects from this drug. I'm currently in a clinical trial, so I read every conceivable side effect I could get, but most of them I likely won't experience.  Side effects can only become very serious if you don't notify your Dr. of any symptoms you are experiencing.  

        Best of luck to you!

        Lisa – Stage 4

        • September 4, 2011 at 6:18 pm
        Lisa13
        Participant

        I've been on Yervoy for 4 weeks and havn't had any side effects yet. Everyone is very different and only a small percentage of people have serious side effects from this drug. I'm currently in a clinical trial, so I read every conceivable side effect I could get, but most of them I likely won't experience.  Side effects can only become very serious if you don't notify your Dr. of any symptoms you are experiencing.  

        Best of luck to you!

        Lisa – Stage 4

      • September 4, 2011 at 11:30 pm
      LynnLuc
      Participant

      When you compare the side effects of "Ipi" to mostly every other drug, they are nothing to write home about. The conventional chemo and the IL-2 are the ones you really don't want to go through unless its the last option…I am on Anti PD 1 and no side effects to really complain about- it did not out my thyroid basically and I have patchy dry peeling skin on my fingers I believe is a side effect…hopefully it continues to keep me NED!

      • September 4, 2011 at 11:30 pm
      LynnLuc
      Participant

      When you compare the side effects of "Ipi" to mostly every other drug, they are nothing to write home about. The conventional chemo and the IL-2 are the ones you really don't want to go through unless its the last option…I am on Anti PD 1 and no side effects to really complain about- it did not out my thyroid basically and I have patchy dry peeling skin on my fingers I believe is a side effect…hopefully it continues to keep me NED!

        • September 5, 2011 at 4:30 am
        JerryfromFauq
        Participant

        I agree that PD-1 clinical trials sound very interesting. I do not know just which mutations it is expected to work on outside of BRAF and C-kit,  I disagree with waiting to try IL-2 until the last resort.  When I went to stage IV, I contacted a list of peple that had considered/tried il-2 anad learned that many had planned on IL-2 as a last resort.  The prolem was that most of their spouses had died while waiting to recover from the chemo effects of other treatments and never got back into shape to take the IL-2 treatments.

        • September 5, 2011 at 4:30 am
        JerryfromFauq
        Participant

        I agree that PD-1 clinical trials sound very interesting. I do not know just which mutations it is expected to work on outside of BRAF and C-kit,  I disagree with waiting to try IL-2 until the last resort.  When I went to stage IV, I contacted a list of peple that had considered/tried il-2 anad learned that many had planned on IL-2 as a last resort.  The prolem was that most of their spouses had died while waiting to recover from the chemo effects of other treatments and never got back into shape to take the IL-2 treatments.

      • September 5, 2011 at 2:45 am
      nickmac56
      Participant

      My wife did Yervoy and had virtually no side effects. I think you can count on side effects with IL-2; with Ipi/Yeroy, it all depends.  Just approach it with a positive attitude.

      • September 5, 2011 at 2:45 am
      nickmac56
      Participant

      My wife did Yervoy and had virtually no side effects. I think you can count on side effects with IL-2; with Ipi/Yeroy, it all depends.  Just approach it with a positive attitude.

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