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Ascites edema low albumin low sodium low b/p high heart rate
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Ascites edema low albumin low sodium low b/p high heart rate

› Forums › General Melanoma Community › Ascites edema low albumin low sodium low b/p high heart rate

  • Post
    • November 8, 2015 at 6:40 pm
    Debbieamccoy
    Participant

      What a weekend , was admitted for all the above this weekend . Finally got b/p and heart rate normal . Sodium rising and slow increase in albumin. I have liver mets and have had 2 rounds of Ipi and nivio .. Does it ever get better . I'm increasing my diet to increase protein but will it help with the abdominal ascites . I'm feeling like a hot mess . My liver labs are stable my LDH dropped 4000 , but it seems for every step forward I go back 4. I need some encouragement 

    Viewing 8 reply threads
    • Replies
        • November 8, 2015 at 7:41 pm
        jbronicki
        Participant

          Hi Debbie,

          That is a lot to go through in one weekend, so sorry.  I can't speak to the ipi/nivo treatment as my husband hasn't had any but I can speak to the research I used to coordinate, which was dialysis, where we often saw a balancing act between treatment and side effects.  The treatments can definitely throw a lot of things out of whack at one-time, and it can be overwhelming and turn into a cascade of things like you are dealing with.  So many of these things are connected such as electrolytes that lead to other temporary conditions such as low bp, etc..  I hope that things level out for you soon and these are temporary .  Many thoughts for you and hope the side effects level out. 

          best,

          jackie

          • November 8, 2015 at 7:41 pm
          jbronicki
          Participant

            Hi Debbie,

            That is a lot to go through in one weekend, so sorry.  I can't speak to the ipi/nivo treatment as my husband hasn't had any but I can speak to the research I used to coordinate, which was dialysis, where we often saw a balancing act between treatment and side effects.  The treatments can definitely throw a lot of things out of whack at one-time, and it can be overwhelming and turn into a cascade of things like you are dealing with.  So many of these things are connected such as electrolytes that lead to other temporary conditions such as low bp, etc..  I hope that things level out for you soon and these are temporary .  Many thoughts for you and hope the side effects level out. 

            best,

            jackie

            • November 8, 2015 at 7:41 pm
            jbronicki
            Participant

              Hi Debbie,

              That is a lot to go through in one weekend, so sorry.  I can't speak to the ipi/nivo treatment as my husband hasn't had any but I can speak to the research I used to coordinate, which was dialysis, where we often saw a balancing act between treatment and side effects.  The treatments can definitely throw a lot of things out of whack at one-time, and it can be overwhelming and turn into a cascade of things like you are dealing with.  So many of these things are connected such as electrolytes that lead to other temporary conditions such as low bp, etc..  I hope that things level out for you soon and these are temporary .  Many thoughts for you and hope the side effects level out. 

              best,

              jackie

              • November 8, 2015 at 8:44 pm
              AshleyS
              Participant

                Hi Debbie,

                I'm sorry about your setback. I believe that is all it is! I was on this combo as part of a trial this spring.  After my third infusion, I got very ill and was hospitalized. I never received the fourth combo treatment. However… My results were excellent! All of my subcutaneous mets were gone and my liver mets shrunk by 95%. I've known people to only have one dose of this combo and have great results. The good news is, you'll be feeling better soon and even if they take you off of the combo, you may have excellent results! 

                Best wishes,

                Ashley

                • November 8, 2015 at 8:44 pm
                AshleyS
                Participant

                  Hi Debbie,

                  I'm sorry about your setback. I believe that is all it is! I was on this combo as part of a trial this spring.  After my third infusion, I got very ill and was hospitalized. I never received the fourth combo treatment. However… My results were excellent! All of my subcutaneous mets were gone and my liver mets shrunk by 95%. I've known people to only have one dose of this combo and have great results. The good news is, you'll be feeling better soon and even if they take you off of the combo, you may have excellent results! 

                  Best wishes,

                  Ashley

                  • November 8, 2015 at 8:44 pm
                  AshleyS
                  Participant

                    Hi Debbie,

                    I'm sorry about your setback. I believe that is all it is! I was on this combo as part of a trial this spring.  After my third infusion, I got very ill and was hospitalized. I never received the fourth combo treatment. However… My results were excellent! All of my subcutaneous mets were gone and my liver mets shrunk by 95%. I've known people to only have one dose of this combo and have great results. The good news is, you'll be feeling better soon and even if they take you off of the combo, you may have excellent results! 

                    Best wishes,

                    Ashley

                      • November 8, 2015 at 9:59 pm
                      chrisholder
                      Participant

                        Hi, Debbie,

                        Like you and Ashley I was on ipi/nivo starting in May but could only last for two infusions before side effects and hospitalization (thyroiditis, auto-immune hepatitis & some other complications).  So hard for you to have such a combination of bad effects, but try to remember the statistics: between 50 and 60% of folks who have this therapy have so far experiened positive durable results.  Hopefully, that will include you!   Can't tell about me yet (I am on Pembrolizumab/Keytruda now), but I'm rooting for you!    Chris

                        • November 8, 2015 at 9:59 pm
                        chrisholder
                        Participant

                          Hi, Debbie,

                          Like you and Ashley I was on ipi/nivo starting in May but could only last for two infusions before side effects and hospitalization (thyroiditis, auto-immune hepatitis & some other complications).  So hard for you to have such a combination of bad effects, but try to remember the statistics: between 50 and 60% of folks who have this therapy have so far experiened positive durable results.  Hopefully, that will include you!   Can't tell about me yet (I am on Pembrolizumab/Keytruda now), but I'm rooting for you!    Chris

                          • November 8, 2015 at 9:59 pm
                          chrisholder
                          Participant

                            Hi, Debbie,

                            Like you and Ashley I was on ipi/nivo starting in May but could only last for two infusions before side effects and hospitalization (thyroiditis, auto-immune hepatitis & some other complications).  So hard for you to have such a combination of bad effects, but try to remember the statistics: between 50 and 60% of folks who have this therapy have so far experiened positive durable results.  Hopefully, that will include you!   Can't tell about me yet (I am on Pembrolizumab/Keytruda now), but I'm rooting for you!    Chris

                            • November 9, 2015 at 4:11 am
                            Debbieamccoy
                            Participant

                              I just hate the belly swelling it's hard to breathe 

                              • November 9, 2015 at 4:11 am
                              Debbieamccoy
                              Participant

                                I just hate the belly swelling it's hard to breathe 

                                • November 9, 2015 at 4:11 am
                                Debbieamccoy
                                Participant

                                  I just hate the belly swelling it's hard to breathe 

                                • November 9, 2015 at 1:08 am
                                arthurjedi007
                                Participant

                                  Ldh going down like that sounds great. You will look back at these side affects and say wow. You went through a lot but it was worth it. 

                                  Stay strong. Keep fighting. You will get better and hopefully with the help of that combo beat this disease too.

                                  Artie

                                  • November 9, 2015 at 1:08 am
                                  arthurjedi007
                                  Participant

                                    Ldh going down like that sounds great. You will look back at these side affects and say wow. You went through a lot but it was worth it. 

                                    Stay strong. Keep fighting. You will get better and hopefully with the help of that combo beat this disease too.

                                    Artie

                                    • November 9, 2015 at 1:08 am
                                    arthurjedi007
                                    Participant

                                      Ldh going down like that sounds great. You will look back at these side affects and say wow. You went through a lot but it was worth it. 

                                      Stay strong. Keep fighting. You will get better and hopefully with the help of that combo beat this disease too.

                                      Artie

                                        • November 9, 2015 at 2:23 pm
                                        Debbieamccoy
                                        Participant

                                          Currently in ER chest ct shows probable mets to lung. The ER doc is not encouraging I am devastated 

                                          • November 9, 2015 at 2:23 pm
                                          Debbieamccoy
                                          Participant

                                            Currently in ER chest ct shows probable mets to lung. The ER doc is not encouraging I am devastated 

                                            • November 9, 2015 at 6:54 pm
                                            DZnDef
                                            Participant

                                              Debbie, I am so sorry you are going through such a difficult time right now.  If you do have lung mets, it is possible they were already there and the drugs are making them inflamed before they go down.  And don't put too much stock in the ER docs opinion.  His specialty is in urgent care, not melanoma.  Focus on getting well from your immediate crisis.  You're not going to die today or tomorrow.  You have time to figure this out.  I hope you find a way to put your mind at ease and just focus on recovering from this immediate ordeal.

                                              • November 9, 2015 at 6:54 pm
                                              DZnDef
                                              Participant

                                                Debbie, I am so sorry you are going through such a difficult time right now.  If you do have lung mets, it is possible they were already there and the drugs are making them inflamed before they go down.  And don't put too much stock in the ER docs opinion.  His specialty is in urgent care, not melanoma.  Focus on getting well from your immediate crisis.  You're not going to die today or tomorrow.  You have time to figure this out.  I hope you find a way to put your mind at ease and just focus on recovering from this immediate ordeal.

                                                • November 9, 2015 at 7:28 pm
                                                Debbieamccoy
                                                Participant

                                                  Thanks posted a new post you made my day 

                                                  • November 9, 2015 at 7:28 pm
                                                  Debbieamccoy
                                                  Participant

                                                    Thanks posted a new post you made my day 

                                                    • November 9, 2015 at 7:28 pm
                                                    Debbieamccoy
                                                    Participant

                                                      Thanks posted a new post you made my day 

                                                      • November 9, 2015 at 6:54 pm
                                                      DZnDef
                                                      Participant

                                                        Debbie, I am so sorry you are going through such a difficult time right now.  If you do have lung mets, it is possible they were already there and the drugs are making them inflamed before they go down.  And don't put too much stock in the ER docs opinion.  His specialty is in urgent care, not melanoma.  Focus on getting well from your immediate crisis.  You're not going to die today or tomorrow.  You have time to figure this out.  I hope you find a way to put your mind at ease and just focus on recovering from this immediate ordeal.

                                                        • November 9, 2015 at 2:23 pm
                                                        Debbieamccoy
                                                        Participant

                                                          Currently in ER chest ct shows probable mets to lung. The ER doc is not encouraging I am devastated 

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