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IPI results
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IPI results

› Forums › General Melanoma Community › IPI results

  • Post
    • July 22, 2011 at 4:24 am
    cfw9186
    Participant

       

       

      south

      Posted a few seconds ago
      Things have gotten pretty rough here lately:  had bad sinus infection since the 6th of July, FINAALLLLLLY got some antibiotics about the 13, took for 5 days still felt like crap, so week, could not eve  get out of bed since the 6th because of head aches, the after the antibiotics, still was so week , then saw spin wheels again called dr.b., had an MRI and found our more tumors, plus my blood showed low on hormones, thyroid, so he put me steroids for the swelling in my brain and thyroid  for my metabolism.     

      .dr b doesn't  seemed very encouraged that my IPI is working although I am holding out for weeks 12-14.  I find it weird that this has all started after the 4 and final infusion.

      He suggests a chemo in pill for my brain may be the next best step……….Have appointments with both Drs. tomorrow,,,,,,,,,,still trying to remain hopefully.

      Hanging on the the edge of a mustard seed.  🙂  Love to all  Kitty

    Viewing 7 reply threads
    • Replies
        • July 22, 2011 at 10:58 am
        triciad
        Participant

          Kitty,

          I am sorry to hear that things are a llittle tough right now.  I will keep you in my prayers for things to turn around soon!

          Tricia

          • July 22, 2011 at 10:58 am
          triciad
          Participant

            Kitty,

            I am sorry to hear that things are a llittle tough right now.  I will keep you in my prayers for things to turn around soon!

            Tricia

            • July 22, 2011 at 1:24 pm
            kylez
            Participant

              Kitty, you're brave. Neurological symptoms like spin wheels (again) are scary. Good luck today with your doc, hope what he proposes sounds right to you.

              Maybe, maybe, just maybe the IPI is doing what it's supposed to do, growing anything it finds "bigger" (I think when the lymphocytes surround any mets they find) before they get smaller. The delayed response as well. None of us know but hang onto your mustard seed.

              – Kyle

                • July 30, 2011 at 7:10 pm
                smap
                Participant

                  What is "spin wheels"?  

                   

                  Thanks Stephanie

                  • July 30, 2011 at 7:10 pm
                  smap
                  Participant

                    What is "spin wheels"?  

                     

                    Thanks Stephanie

                  • July 22, 2011 at 1:24 pm
                  kylez
                  Participant

                    Kitty, you're brave. Neurological symptoms like spin wheels (again) are scary. Good luck today with your doc, hope what he proposes sounds right to you.

                    Maybe, maybe, just maybe the IPI is doing what it's supposed to do, growing anything it finds "bigger" (I think when the lymphocytes surround any mets they find) before they get smaller. The delayed response as well. None of us know but hang onto your mustard seed.

                    – Kyle

                    • July 23, 2011 at 8:26 am
                    cfw9186
                    Participant

                      We have now found another 20 tumors in my brain, I will now begin total brain radiation next week, 15 sessions and begin the chemo for my brain and body, one pill a day, dr. gamma knife believes that is the only way we can keep ahead of the melanoma in my brain, he said with out it he gives me 2.5 months before by brain is taken over, with total brain and chemo 8 -18 months, or until chemo stops working, very disturbing new on this end, but as I had said before we can not determine how the good Lord decides to bring us home. I get my IPI scan on the 5 th of 'august and hope they are helping my lungs and anything else going on, but not working fast enough for my brain, my right hand and side of my body is already losing coordination, so hopefully that will end with the chemo and rad, it is becoming difficult for me to type, something I was always very good at, and my writing which dad spent hours making me proactive as a child looks like ****………scary, all from a mole gone bad, tanning beds or sunburns , share that with you tan friends and it was all first discover less than a year ago, God bless us all. Love Kitty

                        • July 23, 2011 at 11:45 am
                        FormerCaregiver
                        Participant

                          Kitty, I am sorry to read that you are having a tough time at the moment. You are in my
                          thoughts and prayers.

                          May God bless you.

                          Frank from Australia

                          • July 23, 2011 at 11:45 am
                          FormerCaregiver
                          Participant

                            Kitty, I am sorry to read that you are having a tough time at the moment. You are in my
                            thoughts and prayers.

                            May God bless you.

                            Frank from Australia

                            • July 23, 2011 at 4:43 pm
                            kylez
                            Participant

                              Kitty,

                              I'm sorry to hear that's the news you got. That's a tough dilemma. With the chemo and radiation coming next week, I hope you get relief from those symptoms, and that you'll be comfortably continuing to type up a storm and feel better on your right side too.

                              Keep putting one foot in front of the other. You're a warrior and your attitude is inspiring.

                              – Kyle
                              brain mets: 1 (9/10), 1 (11/10), 3 (6/11)

                              • July 23, 2011 at 4:43 pm
                              kylez
                              Participant

                                Kitty,

                                I'm sorry to hear that's the news you got. That's a tough dilemma. With the chemo and radiation coming next week, I hope you get relief from those symptoms, and that you'll be comfortably continuing to type up a storm and feel better on your right side too.

                                Keep putting one foot in front of the other. You're a warrior and your attitude is inspiring.

                                – Kyle
                                brain mets: 1 (9/10), 1 (11/10), 3 (6/11)

                              • July 23, 2011 at 8:26 am
                              cfw9186
                              Participant

                                We have now found another 20 tumors in my brain, I will now begin total brain radiation next week, 15 sessions and begin the chemo for my brain and body, one pill a day, dr. gamma knife believes that is the only way we can keep ahead of the melanoma in my brain, he said with out it he gives me 2.5 months before by brain is taken over, with total brain and chemo 8 -18 months, or until chemo stops working, very disturbing new on this end, but as I had said before we can not determine how the good Lord decides to bring us home. I get my IPI scan on the 5 th of 'august and hope they are helping my lungs and anything else going on, but not working fast enough for my brain, my right hand and side of my body is already losing coordination, so hopefully that will end with the chemo and rad, it is becoming difficult for me to type, something I was always very good at, and my writing which dad spent hours making me proactive as a child looks like ****………scary, all from a mole gone bad, tanning beds or sunburns , share that with you tan friends and it was all first discover less than a year ago, God bless us all. Love Kitty

                                • July 27, 2011 at 11:27 pm
                                kylez
                                Participant

                                  Kitty, check out this post,

                                  http://www.melanoma.org/community/mpip-melanoma-patients-information-page/yervoy-crushed-brain-mets

                                  The timing of the response on IPI to the brain mets is interesting esp. comapred to what you're seeing. For Mary Beth's husband, somewhere around the 3rd IPI treatment he went from 5 to 19 brain mets. 4th IPI treatment was 7/15. Today (10 days or so after 4th IPI) "most brain mets are gone, few remaining are barely visible."

                                  Could be the IPI "it gets worse before it gets better"/delayed resonse scenario? Maybe you're experiencing that too.

                                  • July 27, 2011 at 11:27 pm
                                  kylez
                                  Participant

                                    Kitty, check out this post,

                                    http://www.melanoma.org/community/mpip-melanoma-patients-information-page/yervoy-crushed-brain-mets

                                    The timing of the response on IPI to the brain mets is interesting esp. comapred to what you're seeing. For Mary Beth's husband, somewhere around the 3rd IPI treatment he went from 5 to 19 brain mets. 4th IPI treatment was 7/15. Today (10 days or so after 4th IPI) "most brain mets are gone, few remaining are barely visible."

                                    Could be the IPI "it gets worse before it gets better"/delayed resonse scenario? Maybe you're experiencing that too.

                                Viewing 7 reply threads
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