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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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