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Need Advice – Ipi Rash

Forums General Melanoma Community Need Advice – Ipi Rash

  • Post
    Jan in OC
    Participant

    Hi everyone, 

    Hi everyone, 

    I need some advice. My husband has had the worst itchy rash since his third infusion of IPI.  His skin turned really red all over (like a bad sunburn) and feels all bumpy (he says it's gator skin).  The doctor gave him a small dose of steroids, but had to increase it after a week and a half of no results. The rash has improved somewhat, but he still itches like crazy.  We are supposed to go for his 4th infusion tomorrow, but the doc has said he may not give it to him due to this reaction.  Also, the spots on his side have all increased in size and new ones have appeared.  He is really worried that the IPI is not working due to the steroids.  Has anyone gone thru this?  Has anyone had to stop IPI before all 4 infusions?  We don't have a lot of options if he fails this. He has already tried Interferon/BRAF.  Has brain, liver, lung, kidney mets.  Any input would be appreciated. 

    Thanks,

    Jan, wife to Dirk

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  • Replies
      jhoey
      Participant

      Jan

      I started ipi in May of 09 only had 3 infusions & then stopped  because of the rash or it may have been ipi rash plus posion ivy.   Have been NED since probly  Feb of 2010.  They really don't know how much each person needs of ipi. everyone seems to be different.  Sometimes it works right away others it  may take longer.  For how long it will work that is also a question.  I have continued on the maintance program with no ill we effects.  May see the rash as a sign of the drug working. 

      Good luck to both of you

      Janet

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        killmel
        Participant

        Hi Janet,

         

        Glad tohear you are still NED.

        Will your maintence IPI shots still continue  be "free" sinceyou startedthe trialprior tothe FDA approval??

        Dee

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        jhoey
        Participant

        Dee

        That I have been wondering also.  Had my infusion on 3/17.  Next maintance infusion is on 6/20.  This trial was set up with the maintance infusion  to be done every 3 months so it may contiue as an active trial.  The drug co. supplies the ipi, my insurance pays for all the other expenses, scans, infusion site, blood work etc.  I hope Sloan MK  & Dr. Wolchock will inform me of any changes before 6/20 .

        Janet

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        killmel
        Participant

        Janet,

        I would call Dr.Wolchock office now because if BMS is not going to continue IPI free then you will have to make sure that your insurance will pay for it.

        I know of a patient in the compassionate use for IPI, and the consent form states that if the drug is approved by the FDA then BMS will provide the drug free for 30 days for trial patients then it will be up to the patinet to work it out wiht their insurance company.

        My friend need to do get authorization from her insurance that they will pay for the drug. The insurance company toldher the drug is so new that the approval will take time to go through the approval process.

        Hope this help. Please letus know what you find out.

        Dee

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        jhoey
        Participant

        Dee

        I took your suggestion & called the Drs office @ MSK & was told they have been told by drug company that all clinical studies would continue as planned.  If things should change in the future I would be notified ahead of time.  So far so good but nothing is ever written in stone.  Will see what the future brings.  I do feel better that I called.

        Thanks

        Janet

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        jhoey
        Participant

        Dee

        I took your suggestion & called the Drs office @ MSK & was told they have been told by drug company that all clinical studies would continue as planned.  If things should change in the future I would be notified ahead of time.  So far so good but nothing is ever written in stone.  Will see what the future brings.  I do feel better that I called.

        Thanks

        Janet

        Loading spinner
        killmel
        Participant

        Janet,

        I would call Dr.Wolchock office now because if BMS is not going to continue IPI free then you will have to make sure that your insurance will pay for it.

        I know of a patient in the compassionate use for IPI, and the consent form states that if the drug is approved by the FDA then BMS will provide the drug free for 30 days for trial patients then it will be up to the patinet to work it out wiht their insurance company.

        My friend need to do get authorization from her insurance that they will pay for the drug. The insurance company toldher the drug is so new that the approval will take time to go through the approval process.

        Hope this help. Please letus know what you find out.

        Dee

        Loading spinner
        jhoey
        Participant

        Dee

        That I have been wondering also.  Had my infusion on 3/17.  Next maintance infusion is on 6/20.  This trial was set up with the maintance infusion  to be done every 3 months so it may contiue as an active trial.  The drug co. supplies the ipi, my insurance pays for all the other expenses, scans, infusion site, blood work etc.  I hope Sloan MK  & Dr. Wolchock will inform me of any changes before 6/20 .

        Janet

        Loading spinner
        killmel
        Participant

        Hi Janet,

         

        Glad tohear you are still NED.

        Will your maintence IPI shots still continue  be "free" sinceyou startedthe trialprior tothe FDA approval??

        Dee

        Loading spinner
      jhoey
      Participant

      Jan

      I started ipi in May of 09 only had 3 infusions & then stopped  because of the rash or it may have been ipi rash plus posion ivy.   Have been NED since probly  Feb of 2010.  They really don't know how much each person needs of ipi. everyone seems to be different.  Sometimes it works right away others it  may take longer.  For how long it will work that is also a question.  I have continued on the maintance program with no ill we effects.  May see the rash as a sign of the drug working. 

      Good luck to both of you

      Janet

      Loading spinner
      killmel
      Participant

      Ji Jan,

      Jan,

      I think that since your husband's rash is so bad, I would think that your doctor would tell you that was an indication that IPI is working & your husband is a responder.What is your doctor telling does you?

       

      Try to hang in there!

      Dee

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        killmel
        Participant

        Jan,

        I have followed your post and my heart goes out to you & Dirk. If anyone deserves a miracle, you do.

        I read in one of your post that  your doctor is saying Dirk is not a responder when he has such a bad rash. I just do not understand how the doctor knows Dirk is not a responder. If you can, please explain that…maybe you need another doctor'sopinion!

        God Bless you both

        Dan

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        Jan in OC
        Participant

        We saw the docs at UCLA yesterday.  They were not going to give him the 4th IPI Infusion because his rash was so bad and they thought the steroids reduced the effect  of IPI.  Also, the spots on his chest grew quite large and he has developed lots of new ones.  

        After 45 minutes of discussion, they gave him IPI #4, but doc is pushing up the timetable for the scans…doesn't want to wait, because his "opinion" is that IPI is not working.  I brought up the thoughts that the rash and growth of spots may indicate that the IPI is starting to work, his response was: " there was no empirical evidence to prove that".  

        Doc wanted us to immediately start Temodar, but Dirk said no. We are going to hold to the course we have set for now.  If we get positive proof from the scans that he is not responding, then we will decide what to do next.  We will not be rushed or pushed into another treatment option, but I do have the list handy, and I am always looking at new trials.

        Overall, it was a very discouraging visit and my husband was not a happy camper.  I gave him lots of positive energy, told him to stay strong and let the drug do it's work!  So now we wait and watch for a few weeks. 

        In the meantime, having a garage sale every week, trying to lighten the load and find us a place to live.  The bank will own our house at the end of April!  Need a 3 bed, 2 bath, with garage that accepts dogs (oh yeah, and poor credit report) all for under 1200/mo.  Not possible in SoCal.  What to do????

        Nope, no stress here…just give me some damn PROZAC!!!!!!!!!   LOL

        Jan, wife to Dirk

        Loading spinner
        Jan in OC
        Participant

        We saw the docs at UCLA yesterday.  They were not going to give him the 4th IPI Infusion because his rash was so bad and they thought the steroids reduced the effect  of IPI.  Also, the spots on his chest grew quite large and he has developed lots of new ones.  

        After 45 minutes of discussion, they gave him IPI #4, but doc is pushing up the timetable for the scans…doesn't want to wait, because his "opinion" is that IPI is not working.  I brought up the thoughts that the rash and growth of spots may indicate that the IPI is starting to work, his response was: " there was no empirical evidence to prove that".  

        Doc wanted us to immediately start Temodar, but Dirk said no. We are going to hold to the course we have set for now.  If we get positive proof from the scans that he is not responding, then we will decide what to do next.  We will not be rushed or pushed into another treatment option, but I do have the list handy, and I am always looking at new trials.

        Overall, it was a very discouraging visit and my husband was not a happy camper.  I gave him lots of positive energy, told him to stay strong and let the drug do it's work!  So now we wait and watch for a few weeks. 

        In the meantime, having a garage sale every week, trying to lighten the load and find us a place to live.  The bank will own our house at the end of April!  Need a 3 bed, 2 bath, with garage that accepts dogs (oh yeah, and poor credit report) all for under 1200/mo.  Not possible in SoCal.  What to do????

        Nope, no stress here…just give me some damn PROZAC!!!!!!!!!   LOL

        Jan, wife to Dirk

        Loading spinner
        killmel
        Participant

        Jan,

        I have followed your post and my heart goes out to you & Dirk. If anyone deserves a miracle, you do.

        I read in one of your post that  your doctor is saying Dirk is not a responder when he has such a bad rash. I just do not understand how the doctor knows Dirk is not a responder. If you can, please explain that…maybe you need another doctor'sopinion!

        God Bless you both

        Dan

        Loading spinner
      killmel
      Participant

      Ji Jan,

      Jan,

      I think that since your husband's rash is so bad, I would think that your doctor would tell you that was an indication that IPI is working & your husband is a responder.What is your doctor telling does you?

       

      Try to hang in there!

      Dee

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