MRF-Logo2019-Horizontal-RGB
Esther update (yet again)
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Esther update (yet again)

› Forums › General Melanoma Community › Esther update (yet again)

  • Post
    • March 17, 2013 at 6:53 pm
    edamaser
    Participant

      Hi Friends,

      Onward with the story, my story, our story.  I made an appointment with Dr. Falchook at MD Anderson for a consultation since I was in Houston anyway for the meeting.  He had labs done before I saw him.  He walked into the room and started by saying "We're not going to talk about cancer, we're going to talk about hospitalizing you–right now!"  My calcium level was critically high.  It took them nine days in the hospital to lower it enough for me to go home.

      Hi Friends,

      Onward with the story, my story, our story.  I made an appointment with Dr. Falchook at MD Anderson for a consultation since I was in Houston anyway for the meeting.  He had labs done before I saw him.  He walked into the room and started by saying "We're not going to talk about cancer, we're going to talk about hospitalizing you–right now!"  My calcium level was critically high.  It took them nine days in the hospital to lower it enough for me to go home.

      The same thing (hypercalcemia) happened to me a year ago about 2 months after my last ipi infusion.  Turns out that now is about 2 months after my last reinduction of ipi.  So, with this little evidence, we are concluding that ipi causes hypercalcemia in me.

      Hypercalcemia causes lots of symptoms, among them mental confusion.  So, when I attended the conference I knew my mind was muddled, but attributed it to effects of aging.  Looking back on it, I am embarrassed by how truly confused I was.  I apologize to any of you out there whom I may not have recognized right off, or with whom I may have had ditzy conversations.  I'm getting back to what passes for "normal" for me in the brain department.

      To remind you, the last treatment I had was a reinduction of ipi, last infusion mid-January.  Two weeks after that scans showed progression, no shrinkage.  I'm in the process of looking for what to do now.  I feel OK, and am grateful for that.

      To those of you I met at the Houston conference, I thoroughly enjoyed seeing old friends, and making new ones, even though I was in a mind-muddle.

      My thoughts are with all of you, along with my best wishes (sounds so trite, but true) in your, our, struggle.

      Esther

    Viewing 17 reply threads
    • Replies
        • March 18, 2013 at 11:51 am
        Tina D
        Participant

          I hadn't ever heard of that side-effect as a posibility. SO glad you had an appt while down there! I hate the mental cloudiness that sometimes comes as a result of some of the treatments, and I am sure you are relieved to be feeling better in that regard. It seems like two weeks after your ipi was quick to determine a non-response… are there more scans scheduled? 

          Tina

          • March 18, 2013 at 11:51 am
          Tina D
          Participant

            I hadn't ever heard of that side-effect as a posibility. SO glad you had an appt while down there! I hate the mental cloudiness that sometimes comes as a result of some of the treatments, and I am sure you are relieved to be feeling better in that regard. It seems like two weeks after your ipi was quick to determine a non-response… are there more scans scheduled? 

            Tina

            • March 18, 2013 at 11:51 am
            Tina D
            Participant

              I hadn't ever heard of that side-effect as a posibility. SO glad you had an appt while down there! I hate the mental cloudiness that sometimes comes as a result of some of the treatments, and I am sure you are relieved to be feeling better in that regard. It seems like two weeks after your ipi was quick to determine a non-response… are there more scans scheduled? 

              Tina

              • March 18, 2013 at 11:04 pm
              eyecancerny
              Participant

                So glad you are feeling better Esther.

                Sending you a big hug.

                Anne Marie

                • March 18, 2013 at 11:04 pm
                eyecancerny
                Participant

                  So glad you are feeling better Esther.

                  Sending you a big hug.

                  Anne Marie

                  • March 18, 2013 at 11:04 pm
                  eyecancerny
                  Participant

                    So glad you are feeling better Esther.

                    Sending you a big hug.

                    Anne Marie

                    • March 19, 2013 at 12:37 am
                    Sue33CT
                    Participant

                      Thank you for sharing your update – you are a real inspiration to many of us who are too new to have met you yet!

                      • March 19, 2013 at 12:37 am
                      Sue33CT
                      Participant

                        Thank you for sharing your update – you are a real inspiration to many of us who are too new to have met you yet!

                        • March 19, 2013 at 12:37 am
                        Sue33CT
                        Participant

                          Thank you for sharing your update – you are a real inspiration to many of us who are too new to have met you yet!

                          • March 19, 2013 at 8:08 am
                          lak
                          Participant

                            i m glad you are feeling well again. I too wonder about why it was decided to class you as a non responder so early. I suppose it could be of benefit is there anything you could ablate or irradiate to get a response?

                            • March 19, 2013 at 8:08 am
                            lak
                            Participant

                              i m glad you are feeling well again. I too wonder about why it was decided to class you as a non responder so early. I suppose it could be of benefit is there anything you could ablate or irradiate to get a response?

                              • March 19, 2013 at 8:08 am
                              lak
                              Participant

                                i m glad you are feeling well again. I too wonder about why it was decided to class you as a non responder so early. I suppose it could be of benefit is there anything you could ablate or irradiate to get a response?

                                • March 19, 2013 at 3:44 pm
                                Nan in Nebraska
                                Participant

                                  Hi Esther,

                                     So sorry to hear about the hypercalcemia, but glad they discovered it and you're doing well. It was nice to see you in Houston. When do you scan again? Hopefully you will see positive results then.

                                      I also had re-induction of Ipi and the lesions in my liver, abdomen have been relatively stable. Dr. Sato's recommendation was continuation with imaging and not to do any treatment at this time.(don't rock the boat) I saw Dr. Patel for a consultation when I was in Houston and I was surprised as she recommended surgery, if possible, to remove liver lesions and while in to get the larger lesion by my stomach (which had been cyberknifed AND IS SHRINKING). I thought if you had more than one lesion in the liver and extrahepatic disease surgery wasn't recommended. Her reason was since I'd had the disease as long as I have (Oct., 2001) and that I've stayed ahead of it and have taken just about every medication they're talking about, plus Ipi twice, there is not much else other than off-label and Phase I trials.

                                    Let us know what you decide.

                                  Hugs,

                                  Nan

                                  • March 19, 2013 at 3:44 pm
                                  Nan in Nebraska
                                  Participant

                                    Hi Esther,

                                       So sorry to hear about the hypercalcemia, but glad they discovered it and you're doing well. It was nice to see you in Houston. When do you scan again? Hopefully you will see positive results then.

                                        I also had re-induction of Ipi and the lesions in my liver, abdomen have been relatively stable. Dr. Sato's recommendation was continuation with imaging and not to do any treatment at this time.(don't rock the boat) I saw Dr. Patel for a consultation when I was in Houston and I was surprised as she recommended surgery, if possible, to remove liver lesions and while in to get the larger lesion by my stomach (which had been cyberknifed AND IS SHRINKING). I thought if you had more than one lesion in the liver and extrahepatic disease surgery wasn't recommended. Her reason was since I'd had the disease as long as I have (Oct., 2001) and that I've stayed ahead of it and have taken just about every medication they're talking about, plus Ipi twice, there is not much else other than off-label and Phase I trials.

                                      Let us know what you decide.

                                    Hugs,

                                    Nan

                                    • March 19, 2013 at 3:44 pm
                                    Nan in Nebraska
                                    Participant

                                      Hi Esther,

                                         So sorry to hear about the hypercalcemia, but glad they discovered it and you're doing well. It was nice to see you in Houston. When do you scan again? Hopefully you will see positive results then.

                                          I also had re-induction of Ipi and the lesions in my liver, abdomen have been relatively stable. Dr. Sato's recommendation was continuation with imaging and not to do any treatment at this time.(don't rock the boat) I saw Dr. Patel for a consultation when I was in Houston and I was surprised as she recommended surgery, if possible, to remove liver lesions and while in to get the larger lesion by my stomach (which had been cyberknifed AND IS SHRINKING). I thought if you had more than one lesion in the liver and extrahepatic disease surgery wasn't recommended. Her reason was since I'd had the disease as long as I have (Oct., 2001) and that I've stayed ahead of it and have taken just about every medication they're talking about, plus Ipi twice, there is not much else other than off-label and Phase I trials.

                                        Let us know what you decide.

                                      Hugs,

                                      Nan

                                      • March 19, 2013 at 7:33 pm
                                      edamaser
                                      Participant

                                        Thank you all so much for your kind thoughts and wishes.

                                        The reason I was deemed a non-responder so soon after my last ipi infusion is that it was my second go-round with ipi, and I showed no shrinkage at all, only slow progression. 

                                        I'm now trying to get my calcium and creatinine under control before I launch into another treatment.

                                        I very much appreciate everyone's overlooking my poor state at the conference.  It felt really good to me to be among my OM family.

                                        Esther

                                        • March 19, 2013 at 7:33 pm
                                        edamaser
                                        Participant

                                          Thank you all so much for your kind thoughts and wishes.

                                          The reason I was deemed a non-responder so soon after my last ipi infusion is that it was my second go-round with ipi, and I showed no shrinkage at all, only slow progression. 

                                          I'm now trying to get my calcium and creatinine under control before I launch into another treatment.

                                          I very much appreciate everyone's overlooking my poor state at the conference.  It felt really good to me to be among my OM family.

                                          Esther

                                          • March 19, 2013 at 7:33 pm
                                          edamaser
                                          Participant

                                            Thank you all so much for your kind thoughts and wishes.

                                            The reason I was deemed a non-responder so soon after my last ipi infusion is that it was my second go-round with ipi, and I showed no shrinkage at all, only slow progression. 

                                            I'm now trying to get my calcium and creatinine under control before I launch into another treatment.

                                            I very much appreciate everyone's overlooking my poor state at the conference.  It felt really good to me to be among my OM family.

                                            Esther

                                        Viewing 17 reply threads
                                        • You must be logged in to reply to this topic.
                                        About the MRF Patient Forum

                                        The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                        The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                                        Popular Topics