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Tracey FL
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Tracey FL

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      • January 18, 2011 at 1:45 am
      Tracey FL
      Participant

        Mom is finishing 4 weeks of WBR for her head.  She  also has big lumps on neck and torso.  She has tried two vaccine trials without success and is now heading to MD Anderson for evaluation for the IPI trial.  I dont know how the radiation would work on the torso and we will find out how it worked on the brain in 4 weeks at the next scan.  The radiation Dr should be able to help answer your questions.  I would find out if the radiation treatments keep you from any trials.  Wish I could answer your question.

        Tracey

        • January 18, 2011 at 1:45 am
        Tracey FL
        Participant

          Mom is finishing 4 weeks of WBR for her head.  She  also has big lumps on neck and torso.  She has tried two vaccine trials without success and is now heading to MD Anderson for evaluation for the IPI trial.  I dont know how the radiation would work on the torso and we will find out how it worked on the brain in 4 weeks at the next scan.  The radiation Dr should be able to help answer your questions.  I would find out if the radiation treatments keep you from any trials.  Wish I could answer your question.

          Tracey

          • January 10, 2011 at 3:22 am
          Tracey FL
          Participant

            Thank you Warren for the time you took to share your testimony  We all need hope, and stories like yours give us that.

            Tracey

            Mom is stage lV.

            • January 10, 2011 at 3:22 am
            Tracey FL
            Participant

              Thank you Warren for the time you took to share your testimony  We all need hope, and stories like yours give us that.

              Tracey

              Mom is stage lV.

              • January 10, 2011 at 2:38 am
              Tracey FL
              Participant

                I am so sorry for your stress.  My mom was the same way and I asked the Dr to give her a pill to calm her down, he gave her ten pills and they worked.  They seem to keep her mind from so many thoughts.  I don't have the meds here but I think the name of the med was lordispan or something like that in a very small dose.  Also it did not make her sleepy.

                Tracey

                • January 10, 2011 at 2:38 am
                Tracey FL
                Participant

                  I am so sorry for your stress.  My mom was the same way and I asked the Dr to give her a pill to calm her down, he gave her ten pills and they worked.  They seem to keep her mind from so many thoughts.  I don't have the meds here but I think the name of the med was lordispan or something like that in a very small dose.  Also it did not make her sleepy.

                  Tracey

                  • December 26, 2010 at 5:29 am
                  Tracey FL
                  Participant

                    Hi,   Have you tried to contact the American cancer society for any help? 

                    Tracey

                    • December 26, 2010 at 5:29 am
                    Tracey FL
                    Participant

                      Hi,   Have you tried to contact the American cancer society for any help? 

                      Tracey

                      • August 22, 2010 at 4:02 am
                      Tracey FL
                      Participant

                        Hi

                        I am so encouraged by your post.  It is great to hear that some things are helping in this battle.

                        That might be one of my moms next choices if the PD-1 does not work.  She is Stage IV and failed the first trial of vaccines.  Now we are on to the second and newer one.  Did they take a tumor off for the BRAF to test it?  She has two large ones that would be easy to get to.  Like 2 inch by 1 3/4 inch.  Are these large? 

                        Tracey

                        • January 10, 2011 at 3:02 am
                        Tracey FL
                        Participant

                          Sharyn, I really would like to keep intouch with you.  Your response really helped mom.  I just got back from the surgeon and he wants to do the wait and see approach to see if I will need surgery.  I am not in to much pain now and  he said maybe I can live with the broken rods in my back, a month would tell.  I am glad because this would be a bad time for major back surgery.  Sounds like you and mom have a lot of the same things going on.  She has an apt on the 27th for the ipi consult.  I really want to know what the ipi involves how long, how often and what is it (shots,drip).

                          She has 10 more days of WBR.    What state do you  live in?  We are in FL.

                          Tracey

                          • January 10, 2011 at 3:02 am
                          Tracey FL
                          Participant

                            Sharyn, I really would like to keep intouch with you.  Your response really helped mom.  I just got back from the surgeon and he wants to do the wait and see approach to see if I will need surgery.  I am not in to much pain now and  he said maybe I can live with the broken rods in my back, a month would tell.  I am glad because this would be a bad time for major back surgery.  Sounds like you and mom have a lot of the same things going on.  She has an apt on the 27th for the ipi consult.  I really want to know what the ipi involves how long, how often and what is it (shots,drip).

                            She has 10 more days of WBR.    What state do you  live in?  We are in FL.

                            Tracey

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