First ipi infusion scheduled. Advice, suggestions, etc…
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First ipi infusion scheduled. Advice, suggestions, etc…

› Forums › General Melanoma Community › First ipi infusion scheduled. Advice, suggestions, etc…

  • Post
    • February 8, 2014 at 2:22 am
    sjwilken
    Participant

    I will be having my first ipi infusion on the 14th.  I have read post about some of the side effects.  I know everyone is different and how they tolerate tx.  What side effects did you have?  Any advice anything?  Or suggestions? 

Viewing 11 reply threads
  • Replies
      • February 8, 2014 at 5:43 am
      Marianne quinn
      Participant

      Use moisturizing lotion. Try to keep a bland diet- no nuts, seeds,popcorn. Avoid foods that caused you to have loose stools before you started yervoy. Have Benadryl and immondium on hand so you can jump om your side effects quickly. Good luckluck

      • February 8, 2014 at 5:43 am
      Marianne quinn
      Participant

      Use moisturizing lotion. Try to keep a bland diet- no nuts, seeds,popcorn. Avoid foods that caused you to have loose stools before you started yervoy. Have Benadryl and immondium on hand so you can jump om your side effects quickly. Good luckluck

      • February 8, 2014 at 5:43 am
      Marianne quinn
      Participant

      Use moisturizing lotion. Try to keep a bland diet- no nuts, seeds,popcorn. Avoid foods that caused you to have loose stools before you started yervoy. Have Benadryl and immondium on hand so you can jump om your side effects quickly. Good luckluck

        • February 8, 2014 at 6:34 am
        Patina
        Participant

        Watch out for diarrhea and your potassium levels.  I'd suggest keeping a diary.

        You'll get a lot of phone calls with people asking how you are…  Be sure that the person who is helping you through this, going to the appointments…knows what's going on.

        From experience, my Mom did not communicate everything to me and we had a few issues that could have been avoided.  It was frustrating for me and she felt terrible later. She could have also been in some real trouble if I hadn't know what was going on.  Be honest and don't get frustrated if the people who love you are worried.

        • February 8, 2014 at 6:34 am
        Patina
        Participant

        Watch out for diarrhea and your potassium levels.  I'd suggest keeping a diary.

        You'll get a lot of phone calls with people asking how you are…  Be sure that the person who is helping you through this, going to the appointments…knows what's going on.

        From experience, my Mom did not communicate everything to me and we had a few issues that could have been avoided.  It was frustrating for me and she felt terrible later. She could have also been in some real trouble if I hadn't know what was going on.  Be honest and don't get frustrated if the people who love you are worried.

        • February 8, 2014 at 6:34 am
        Patina
        Participant

        Watch out for diarrhea and your potassium levels.  I'd suggest keeping a diary.

        You'll get a lot of phone calls with people asking how you are…  Be sure that the person who is helping you through this, going to the appointments…knows what's going on.

        From experience, my Mom did not communicate everything to me and we had a few issues that could have been avoided.  It was frustrating for me and she felt terrible later. She could have also been in some real trouble if I hadn't know what was going on.  Be honest and don't get frustrated if the people who love you are worried.

        • February 8, 2014 at 5:45 pm
        Pink
        Participant

        I had my first infusion and my second due this Tuesday. This week I am having a little diarrhea not bad though and also a little itching. Other than that I feel good

        • February 8, 2014 at 5:45 pm
        Pink
        Participant

        I had my first infusion and my second due this Tuesday. This week I am having a little diarrhea not bad though and also a little itching. Other than that I feel good

        • February 8, 2014 at 5:45 pm
        Pink
        Participant

        I had my first infusion and my second due this Tuesday. This week I am having a little diarrhea not bad though and also a little itching. Other than that I feel good

      • February 8, 2014 at 7:38 pm
      momof4boys
      Participant

      I have had my first 4 infusions with not many problems at all. I have had some stomach issues and some bouts of diarrhea but it always cleared up on it's own and in this season it could have just been a bug. I have had a terrible time with the itching. My husband bought me a wooden back scratcher and it was the best gift ever! I lube up quite often and that helps. I also take benadryl every night, which is good because it helps you sleep as well. I do know that on days that I get treatment I have an hours drive back home and I usually crash for the night when I get home. Something about it makes me really tired. I don't have a whole lot of energy but I've been through alot this past 7 months and I don't know if it's just everything or from the ipi. I would say it is way better than some treatments are. Although some do have serious problems. Just make sure you keep in close contact with your onc if you have any symptoms.

      • February 8, 2014 at 7:38 pm
      momof4boys
      Participant

      I have had my first 4 infusions with not many problems at all. I have had some stomach issues and some bouts of diarrhea but it always cleared up on it's own and in this season it could have just been a bug. I have had a terrible time with the itching. My husband bought me a wooden back scratcher and it was the best gift ever! I lube up quite often and that helps. I also take benadryl every night, which is good because it helps you sleep as well. I do know that on days that I get treatment I have an hours drive back home and I usually crash for the night when I get home. Something about it makes me really tired. I don't have a whole lot of energy but I've been through alot this past 7 months and I don't know if it's just everything or from the ipi. I would say it is way better than some treatments are. Although some do have serious problems. Just make sure you keep in close contact with your onc if you have any symptoms.

      • February 8, 2014 at 7:38 pm
      momof4boys
      Participant

      I have had my first 4 infusions with not many problems at all. I have had some stomach issues and some bouts of diarrhea but it always cleared up on it's own and in this season it could have just been a bug. I have had a terrible time with the itching. My husband bought me a wooden back scratcher and it was the best gift ever! I lube up quite often and that helps. I also take benadryl every night, which is good because it helps you sleep as well. I do know that on days that I get treatment I have an hours drive back home and I usually crash for the night when I get home. Something about it makes me really tired. I don't have a whole lot of energy but I've been through alot this past 7 months and I don't know if it's just everything or from the ipi. I would say it is way better than some treatments are. Although some do have serious problems. Just make sure you keep in close contact with your onc if you have any symptoms.

      • February 8, 2014 at 10:37 pm
      arthurjedi007
      Participant

      My advice is have a plan for the next treatment. Ipi is great but while you are on ipi you might be able to get setup with a plan for a next treatment if needed. I have found that out the hard way.

      • February 8, 2014 at 10:37 pm
      arthurjedi007
      Participant

      My advice is have a plan for the next treatment. Ipi is great but while you are on ipi you might be able to get setup with a plan for a next treatment if needed. I have found that out the hard way.

      • February 8, 2014 at 10:37 pm
      arthurjedi007
      Participant

      My advice is have a plan for the next treatment. Ipi is great but while you are on ipi you might be able to get setup with a plan for a next treatment if needed. I have found that out the hard way.

        • February 9, 2014 at 2:10 am
        sjwilken
        Participant

        Thank you everyone for your suggestions.  I'm Stage 4M1A with now tumors and scans all clear.  I did interferon  years ago, so I'm not able to do any clinical trials.  My dr suggests doing the ipi.  I am on board with trying anything. 

        • February 9, 2014 at 2:10 am
        sjwilken
        Participant

        Thank you everyone for your suggestions.  I'm Stage 4M1A with now tumors and scans all clear.  I did interferon  years ago, so I'm not able to do any clinical trials.  My dr suggests doing the ipi.  I am on board with trying anything. 

        • February 9, 2014 at 2:10 am
        sjwilken
        Participant

        Thank you everyone for your suggestions.  I'm Stage 4M1A with now tumors and scans all clear.  I did interferon  years ago, so I'm not able to do any clinical trials.  My dr suggests doing the ipi.  I am on board with trying anything. 

      • February 9, 2014 at 6:16 pm
      Michelem
      Participant

      This is a timely post – my husband will have his first ipi infusion tomorrow. We did not know about the itching, so we will be prepared!

      • February 9, 2014 at 6:16 pm
      Michelem
      Participant

      This is a timely post – my husband will have his first ipi infusion tomorrow. We did not know about the itching, so we will be prepared!

      • February 9, 2014 at 6:16 pm
      Michelem
      Participant

      This is a timely post – my husband will have his first ipi infusion tomorrow. We did not know about the itching, so we will be prepared!

        • February 10, 2014 at 12:18 am
        Brendan
        Participant

        Hi,

        Good luck with ipi.  My stomach was fine the whole time although I did itch like crazy.  After my third infusion I had a terrible headache (my eyes hurt).  It turned out to be a swollen pituitary gland.  My doctor had dealt with other patients who had this side effect with ipi.  Prednisone took care of it right away.  It does not happen to everyone, so don't be afraid, just report any headaches.

        Good luck!

        Brendnan

         

        • February 10, 2014 at 12:18 am
        Brendan
        Participant

        Hi,

        Good luck with ipi.  My stomach was fine the whole time although I did itch like crazy.  After my third infusion I had a terrible headache (my eyes hurt).  It turned out to be a swollen pituitary gland.  My doctor had dealt with other patients who had this side effect with ipi.  Prednisone took care of it right away.  It does not happen to everyone, so don't be afraid, just report any headaches.

        Good luck!

        Brendnan

         

        • February 10, 2014 at 12:18 am
        Brendan
        Participant

        Hi,

        Good luck with ipi.  My stomach was fine the whole time although I did itch like crazy.  After my third infusion I had a terrible headache (my eyes hurt).  It turned out to be a swollen pituitary gland.  My doctor had dealt with other patients who had this side effect with ipi.  Prednisone took care of it right away.  It does not happen to everyone, so don't be afraid, just report any headaches.

        Good luck!

        Brendnan

         

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