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Ipi Swelling and Pain
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Ipi Swelling and Pain

› Forums › General Melanoma Community › Ipi Swelling and Pain

  • Post
    • July 29, 2013 at 12:00 am
    DeniseK
    Participant

      Hello Everyone,

      Hello Everyone,

      I'm hoping someone can help me.  I just had my second infusion of Ipi on Thursday July 25th.  Saturday I woke up with the worst pain in my arm just around the sub q on my forearm.  It feels like someone is stabbing me in my arm.  My chest also feels heavy and more back and chest pain than normal.  The sub q on my arm appears to be getting larger as well.  I looked and looked and I could have sworn that this might be normal and a sign that it's working??  I don't know what to do?  Should I call my doctor? I don't think I have much room for growth with my mets and it's scaring the (bleep) out of me.

      Thanks for your help

      Denise

    Viewing 5 reply threads
    • Replies
        • July 29, 2013 at 1:15 am
        ecc26
        Participant

          Hi Denise,

          I just got my third dose on Friday.

          Regarding the arm subQ- I've had a handful of my subQ's get inflamed (the skin even turns red over the top, or bruises) and they can be quite painful. They also seem to suddenly get bigger (up to twice their size). For each one it lasted a couple of days (2-4), then they shrink down over the next week or so. None of mine have completely gone away, but the ones this happened to are much smaller. I would take that as a good sign (for now).

          I don't know what to tell you about the chest and back pain- that I would call your doctor about and at least report your symptoms (including the subQ stuff, they should know everything that's going on). If your doctors are anything like mine they will get back to you quickly (within the day) and tell you whether they are concerned enough to want to see you (or have you seen somewhere) or if it's ok. Do you have lung/back mets? Is it possible those are inflamed like the one on your arm and that's where the pain is coming from? I'd still call tomorrow (Monday) and check in with your doctor(s).

          I'm not convinced I'm going to get a very good response from Ipi- i've found a couple new subQ's lately. I've got an MRI coming up this week and I'm hoping for some good news there. 

          Talk to your doctors and try not to worry until they tell you it's time to worry- Ipi can take some time to kick in (one of the things I find so scarry about being on it) so try to be patient. I hope they can ease your mind some, and wish you the best of luck.

          -Eva

          • July 29, 2013 at 1:15 am
          ecc26
          Participant

            Hi Denise,

            I just got my third dose on Friday.

            Regarding the arm subQ- I've had a handful of my subQ's get inflamed (the skin even turns red over the top, or bruises) and they can be quite painful. They also seem to suddenly get bigger (up to twice their size). For each one it lasted a couple of days (2-4), then they shrink down over the next week or so. None of mine have completely gone away, but the ones this happened to are much smaller. I would take that as a good sign (for now).

            I don't know what to tell you about the chest and back pain- that I would call your doctor about and at least report your symptoms (including the subQ stuff, they should know everything that's going on). If your doctors are anything like mine they will get back to you quickly (within the day) and tell you whether they are concerned enough to want to see you (or have you seen somewhere) or if it's ok. Do you have lung/back mets? Is it possible those are inflamed like the one on your arm and that's where the pain is coming from? I'd still call tomorrow (Monday) and check in with your doctor(s).

            I'm not convinced I'm going to get a very good response from Ipi- i've found a couple new subQ's lately. I've got an MRI coming up this week and I'm hoping for some good news there. 

            Talk to your doctors and try not to worry until they tell you it's time to worry- Ipi can take some time to kick in (one of the things I find so scarry about being on it) so try to be patient. I hope they can ease your mind some, and wish you the best of luck.

            -Eva

            • July 29, 2013 at 1:15 am
            ecc26
            Participant

              Hi Denise,

              I just got my third dose on Friday.

              Regarding the arm subQ- I've had a handful of my subQ's get inflamed (the skin even turns red over the top, or bruises) and they can be quite painful. They also seem to suddenly get bigger (up to twice their size). For each one it lasted a couple of days (2-4), then they shrink down over the next week or so. None of mine have completely gone away, but the ones this happened to are much smaller. I would take that as a good sign (for now).

              I don't know what to tell you about the chest and back pain- that I would call your doctor about and at least report your symptoms (including the subQ stuff, they should know everything that's going on). If your doctors are anything like mine they will get back to you quickly (within the day) and tell you whether they are concerned enough to want to see you (or have you seen somewhere) or if it's ok. Do you have lung/back mets? Is it possible those are inflamed like the one on your arm and that's where the pain is coming from? I'd still call tomorrow (Monday) and check in with your doctor(s).

              I'm not convinced I'm going to get a very good response from Ipi- i've found a couple new subQ's lately. I've got an MRI coming up this week and I'm hoping for some good news there. 

              Talk to your doctors and try not to worry until they tell you it's time to worry- Ipi can take some time to kick in (one of the things I find so scarry about being on it) so try to be patient. I hope they can ease your mind some, and wish you the best of luck.

              -Eva

              • July 29, 2013 at 3:32 am
              DeniseK
              Participant

                Thanks Eva,

                Yes I have lung mets.  I've had some scary sharp pains but I heard that the mets will get inflammed before they shrink because it has something to do with your T Cells and stuff going to work releasing some IL chemicals to attack the tumors.  I'm taking this as a good sign just hoping my brain mets have not grown.  I'm getting an MRI on Thursday and at this point I'm considered stable but if there's growth I need to start my 8 weeks all over again,  Aaarrghh!  I'm staying hopeful that the Ipi is working but sometimes the side effects of the drugs make me wonder if it's the cancer or medicine.  I don't have any new sub q's as of yet but I heard that can happen as well.  

                It makes me feel better that it will only last a couple of days.  Thanks for your help Eva, all mu best to you too.

                Denise

                 

                • July 30, 2013 at 1:46 am
                POW
                Participant

                  Hi, Denise-

                  How are you doing with your pain? Is it subsiding? Did you talk to your doctor about it?

                    • July 29, 2013 at 3:32 am
                    DeniseK
                    Participant

                      Thanks Eva,

                      Yes I have lung mets.  I've had some scary sharp pains but I heard that the mets will get inflammed before they shrink because it has something to do with your T Cells and stuff going to work releasing some IL chemicals to attack the tumors.  I'm taking this as a good sign just hoping my brain mets have not grown.  I'm getting an MRI on Thursday and at this point I'm considered stable but if there's growth I need to start my 8 weeks all over again,  Aaarrghh!  I'm staying hopeful that the Ipi is working but sometimes the side effects of the drugs make me wonder if it's the cancer or medicine.  I don't have any new sub q's as of yet but I heard that can happen as well.  

                      It makes me feel better that it will only last a couple of days.  Thanks for your help Eva, all mu best to you too.

                      Denise

                       

                      • July 29, 2013 at 3:32 am
                      DeniseK
                      Participant

                        Thanks Eva,

                        Yes I have lung mets.  I've had some scary sharp pains but I heard that the mets will get inflammed before they shrink because it has something to do with your T Cells and stuff going to work releasing some IL chemicals to attack the tumors.  I'm taking this as a good sign just hoping my brain mets have not grown.  I'm getting an MRI on Thursday and at this point I'm considered stable but if there's growth I need to start my 8 weeks all over again,  Aaarrghh!  I'm staying hopeful that the Ipi is working but sometimes the side effects of the drugs make me wonder if it's the cancer or medicine.  I don't have any new sub q's as of yet but I heard that can happen as well.  

                        It makes me feel better that it will only last a couple of days.  Thanks for your help Eva, all mu best to you too.

                        Denise

                         

                      • July 30, 2013 at 10:22 pm
                      DeniseK
                      Participant

                        Hi Pat,

                        The pain is subsiding, although it's still painful and swollen.  Today is day 4 of the swelling so I'm hoping it will also start disolving the tumors.  I'm worried that my brain tumors have also swollen and when I go in for Gamma Knife Thursday the MRI will show growth.  I need to keep my brain stable so this is my only worry at this point.

                        Thanks for asking Pat. 🙂

                        Denise

                        • July 30, 2013 at 1:46 am
                        POW
                        Participant

                          Hi, Denise-

                          How are you doing with your pain? Is it subsiding? Did you talk to your doctor about it?

                          • July 30, 2013 at 1:46 am
                          POW
                          Participant

                            Hi, Denise-

                            How are you doing with your pain? Is it subsiding? Did you talk to your doctor about it?

                            • July 30, 2013 at 10:22 pm
                            DeniseK
                            Participant

                              Hi Pat,

                              The pain is subsiding, although it's still painful and swollen.  Today is day 4 of the swelling so I'm hoping it will also start disolving the tumors.  I'm worried that my brain tumors have also swollen and when I go in for Gamma Knife Thursday the MRI will show growth.  I need to keep my brain stable so this is my only worry at this point.

                              Thanks for asking Pat. 🙂

                              Denise

                              • July 30, 2013 at 10:22 pm
                              DeniseK
                              Participant

                                Hi Pat,

                                The pain is subsiding, although it's still painful and swollen.  Today is day 4 of the swelling so I'm hoping it will also start disolving the tumors.  I'm worried that my brain tumors have also swollen and when I go in for Gamma Knife Thursday the MRI will show growth.  I need to keep my brain stable so this is my only worry at this point.

                                Thanks for asking Pat. 🙂

                                Denise

                            Viewing 5 reply threads
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