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2nd Ipi today, not feeling great

Forums General Melanoma Community 2nd Ipi today, not feeling great

  • Post
    TracyLee
    Participant

      Hi y'all,

      2nd Ipi transfusion today. Can't come a moment too soon. My neck is a landmine of lumpy nodes, and the left (good) side is now popping nodes too. I'm prayerful that this means Ipi is already kicking melanoma's butt!

      This has been a rough week, 2 migraines this week. Can't tell if just "normal" migraines, which I haven't had at all since my surgery 2 months ago, or an Ipi side effect.

      Anxious to move on and get this done!

      Hi y'all,

      2nd Ipi transfusion today. Can't come a moment too soon. My neck is a landmine of lumpy nodes, and the left (good) side is now popping nodes too. I'm prayerful that this means Ipi is already kicking melanoma's butt!

      This has been a rough week, 2 migraines this week. Can't tell if just "normal" migraines, which I haven't had at all since my surgery 2 months ago, or an Ipi side effect.

      Anxious to move on and get this done!

      I know several are getting treatments, scan results, etc. I pray for each of us to have nothing but good news and positive outcomes.

      TracyLee

    Viewing 25 reply threads
    • Replies
        nicoli
        Participant

          Praying for you right now, Tracy.

          Nicki, Stage 3b

          nicoli
          Participant

            Praying for you right now, Tracy.

            Nicki, Stage 3b

            Carol Taylor
            Participant

              Holding you in prayer, Tracy!

              Lord, in Your mercy, grant Tracy and all others getting scans & treatments & having procedures, positive outcomes and good news. Thank You. Amen.

              Grace and peace to you fearless leader,

              Posse member Carol

              Carol Taylor
              Participant

                Holding you in prayer, Tracy!

                Lord, in Your mercy, grant Tracy and all others getting scans & treatments & having procedures, positive outcomes and good news. Thank You. Amen.

                Grace and peace to you fearless leader,

                Posse member Carol

                Carmon in NM
                Participant

                  Praying for and thinking of you Tracy!

                  Carmon in NM
                  Participant

                    Praying for and thinking of you Tracy!

                    shellebrownies
                    Participant

                      Get in there and kick melanoma' butt, Fearless Leader! wink

                       

                      Michelle, wife of Don

                      shellebrownies
                      Participant

                        Get in there and kick melanoma' butt, Fearless Leader! wink

                         

                        Michelle, wife of Don

                        FormerCaregiver
                        Participant

                          Wishing you good luck with your treatment today.

                          You are in my prayers.

                          Frank from Australia

                          FormerCaregiver
                          Participant

                            Wishing you good luck with your treatment today.

                            You are in my prayers.

                            Frank from Australia

                            MichaelFL
                            Participant

                              Keeping my fingers crossed that this is a inflammatory response and your immune system is doing what needs to be done to kick this to the curb. From what I understand, if this is a response, the nodes (and hopefully tumors) should start shrinking again, perhaps around your fourth infusion.

                              Good luck,

                              Michael

                              MichaelFL
                              Participant

                                Keeping my fingers crossed that this is a inflammatory response and your immune system is doing what needs to be done to kick this to the curb. From what I understand, if this is a response, the nodes (and hopefully tumors) should start shrinking again, perhaps around your fourth infusion.

                                Good luck,

                                Michael

                                lhaley
                                Participant

                                  Been thinking of you my Delaware buddy!  One of the issues with ippi is that it can plump up those tumors before it shrinks them.  They've got to come up with a way to figue out if this is a positive or negative response!!

                                  Sending prayers and hugs that this is all part of your way to shrinking this down to nothing! 

                                  Linda

                                  lhaley
                                  Participant

                                    Been thinking of you my Delaware buddy!  One of the issues with ippi is that it can plump up those tumors before it shrinks them.  They've got to come up with a way to figue out if this is a positive or negative response!!

                                    Sending prayers and hugs that this is all part of your way to shrinking this down to nothing! 

                                    Linda

                                    vivian
                                    Participant

                                      TracyLee,

                                       I am thinking of you and hoping everything goes smoothly and easily today.  Big hugs from your other Delaware buddy!

                                      Lear

                                        MaryBeth and Jeff
                                        Participant

                                          Praying for you.  My husband had his 2nd IPI treatment June 2,  Just as with the first treatment, he felt crummy a week later.  He has similair symptoms as you..lumpy nodes…except he has lumps on various areas of his trunk as well. He also has bad migraines and nausea.  Hang in there. Kick that melanoma butt!!!

                                          MaryBeth and Jeff
                                          Participant

                                            Praying for you.  My husband had his 2nd IPI treatment June 2,  Just as with the first treatment, he felt crummy a week later.  He has similair symptoms as you..lumpy nodes…except he has lumps on various areas of his trunk as well. He also has bad migraines and nausea.  Hang in there. Kick that melanoma butt!!!

                                          vivian
                                          Participant

                                            TracyLee,

                                             I am thinking of you and hoping everything goes smoothly and easily today.  Big hugs from your other Delaware buddy!

                                            Lear

                                            Linny
                                            Participant

                                              Hang in there. Someone else who's on Ipi had posted a note about having lumps and bumps upon starting it, which subsided after awhile.

                                              Am praying for you, Tracy. You're going to get through this!

                                              Linda

                                              Linny
                                              Participant

                                                Hang in there. Someone else who's on Ipi had posted a note about having lumps and bumps upon starting it, which subsided after awhile.

                                                Am praying for you, Tracy. You're going to get through this!

                                                Linda

                                                praying for good outcomes and surrounding you with light and love.
                                                Shelly in Switzerland
                                                praying for good outcomes and surrounding you with light and love.
                                                Shelly in Switzerland
                                                NYKaren
                                                Participant

                                                  Hi TracyLee,

                                                  I had my 2nd infusion on Thursday too.  And yesterday was my birthday…all I want is to be NED!

                                                  I had had some bad stomach side-effects starting about 2 weeks ago…doc put me on steriod and bland diet–i fee much better now, so he took me off the steroid on Thursday.  So far, so good. It was early for side-effects but not unheard of.  So much is unknown with ipi, so who knows, maybe it was a bad virus!

                                                  I too have been having some unusual headaches just this past week…maybe it's ipi related, but then again, who the heck knows.

                                                  My doc said that we can definately get worse before getting better, so here's hoping and praying for a good response for all of us.

                                                  Take care,

                                                  karen

                                                  NYKaren
                                                  Participant

                                                    Hi TracyLee,

                                                    I had my 2nd infusion on Thursday too.  And yesterday was my birthday…all I want is to be NED!

                                                    I had had some bad stomach side-effects starting about 2 weeks ago…doc put me on steriod and bland diet–i fee much better now, so he took me off the steroid on Thursday.  So far, so good. It was early for side-effects but not unheard of.  So much is unknown with ipi, so who knows, maybe it was a bad virus!

                                                    I too have been having some unusual headaches just this past week…maybe it's ipi related, but then again, who the heck knows.

                                                    My doc said that we can definately get worse before getting better, so here's hoping and praying for a good response for all of us.

                                                    Take care,

                                                    karen

                                                    Jim M.
                                                    Participant

                                                      Hi TracyLee,

                                                       I was on Ipi in 2008 (10mg/kg). Two weeks before I was to get the 5th infusion I had severe headaches. Tylenol didn't help much as the pain would quickly return. The pain was felt on my whole head. Finally an MRI was done which showed I had  a swollen pituitary gland (or hypothysitis). It was one of those immune breakthrough events that Ipi causes.

                                                       I was taken off Ipi and put on a steroid. My pituitary has regained it's normal size but I'm still on a steroid as a hormone replacement. I may be on it for a long time

                                                       If your headaches continue you may inquire about getting an MRI. If what you have is an Ipi side effect, it also means that Ipi is working. My Dr. said Ipi boosted my immune system at least 5 times over baseline. I did the trial with resected melanoma.

                                                      God Bless and much success,

                                                       Jim M.

                                                       stage 3C

                                                       NED: 3 years, 7 months

                                                      Jim M.
                                                      Participant

                                                        Hi TracyLee,

                                                         I was on Ipi in 2008 (10mg/kg). Two weeks before I was to get the 5th infusion I had severe headaches. Tylenol didn't help much as the pain would quickly return. The pain was felt on my whole head. Finally an MRI was done which showed I had  a swollen pituitary gland (or hypothysitis). It was one of those immune breakthrough events that Ipi causes.

                                                         I was taken off Ipi and put on a steroid. My pituitary has regained it's normal size but I'm still on a steroid as a hormone replacement. I may be on it for a long time

                                                         If your headaches continue you may inquire about getting an MRI. If what you have is an Ipi side effect, it also means that Ipi is working. My Dr. said Ipi boosted my immune system at least 5 times over baseline. I did the trial with resected melanoma.

                                                        God Bless and much success,

                                                         Jim M.

                                                         stage 3C

                                                         NED: 3 years, 7 months

                                                        TracyLee
                                                        Participant

                                                          Hello Posse!

                                                          I'm feeling quite good so far. My neck is a lumpy mess, but we are all prayerful that means ipi is kicking melanoma's butt! I'm having some issues sleeping, but think it's due to lumps and scarring from my last surgery in April. I guess I need to learn to sleep balanced on my nose…

                                                          Not had any side effects to speak of for this second treatment. Lifting my fellow ipi folks to a perfect response with no side effects, too!

                                                          And, a belated happy birthday to Karen in NY.

                                                          My older (15) daughter had her dance recital Saturday, and younger (14) daughter is training to begin her job at McDonalds. Life goes on, and I am happy to be here for the day to day, mundane things.

                                                          All 5 kids (we have a "spare" daughter) made fathers day a great one for hubby. And it is all good, just being here for the small stuff!

                                                          TracyLee

                                                          TracyLee
                                                          Participant

                                                            Hello Posse!

                                                            I'm feeling quite good so far. My neck is a lumpy mess, but we are all prayerful that means ipi is kicking melanoma's butt! I'm having some issues sleeping, but think it's due to lumps and scarring from my last surgery in April. I guess I need to learn to sleep balanced on my nose…

                                                            Not had any side effects to speak of for this second treatment. Lifting my fellow ipi folks to a perfect response with no side effects, too!

                                                            And, a belated happy birthday to Karen in NY.

                                                            My older (15) daughter had her dance recital Saturday, and younger (14) daughter is training to begin her job at McDonalds. Life goes on, and I am happy to be here for the day to day, mundane things.

                                                            All 5 kids (we have a "spare" daughter) made fathers day a great one for hubby. And it is all good, just being here for the small stuff!

                                                            TracyLee

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