A little slice of hope for LMD

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  • Post
    • February 14, 2017 at 7:12 pm
    adriana cooper
    Participant

      I found this the other day during my research on WBRT.

      Long-term stabilization of leptomeningeal disease with whole-brain radiation therapy in a patient with metastatic melanoma treated with vemurafenib: a case report

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3880202/

       

      Adriana got to come home yesterday and has been managing pain relatively well. Day 4 of lumbar and WBRT coming up. Boy that mask doesn't look fun but only about three minutes of treatment duration. The worst part was making it and targeting which took considerable time. She wished she had accepted the drugs in hindsight. She is awesome always with a smile on her face even though she has to put up with me. 

      Need to get a new bed for her and new chair as ours are not comfortable for her. Occupational therapy discussed the potential for a hospital bed at home but she was discharged before they could arrange it. 

      Any info on hospital bed rentals and specifically Medicare/Medicaid coverage would be appreciated.

       

      Rob

       

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    • Replies
        • February 14, 2017 at 7:40 pm
        adriana cooper
        Participant

          BTW, Lego Batman tonight. Happy Valentines Day to all. Hug and cherish your loved ones every day. 

          Although we or our loved ones have cancer don't let it take your lives. Live every moment.

          Rob

            • February 15, 2017 at 12:07 am
            Bubbles
            Participant

              You two are awesome examples of the power of the heart.  Glad she is feeling a bit better.  Hang in there. love, c

              • February 15, 2017 at 12:07 am
              Bubbles
              Participant

                You two are awesome examples of the power of the heart.  Glad she is feeling a bit better.  Hang in there. love, c

                • February 15, 2017 at 12:07 am
                Bubbles
                Participant

                  You two are awesome examples of the power of the heart.  Glad she is feeling a bit better.  Hang in there. love, c

                • February 14, 2017 at 7:40 pm
                adriana cooper
                Participant

                  BTW, Lego Batman tonight. Happy Valentines Day to all. Hug and cherish your loved ones every day. 

                  Although we or our loved ones have cancer don't let it take your lives. Live every moment.

                  Rob

                  • February 14, 2017 at 7:40 pm
                  adriana cooper
                  Participant

                    BTW, Lego Batman tonight. Happy Valentines Day to all. Hug and cherish your loved ones every day. 

                    Although we or our loved ones have cancer don't let it take your lives. Live every moment.

                    Rob

                    • February 15, 2017 at 12:21 pm
                    rosa1
                    Participant

                      You're a wonderful, loving husband. I wish you both the best. Stay strong.

                      Rosa

                      • February 15, 2017 at 12:21 pm
                      rosa1
                      Participant

                        You're a wonderful, loving husband. I wish you both the best. Stay strong.

                        Rosa

                        • February 15, 2017 at 12:21 pm
                        rosa1
                        Participant

                          You're a wonderful, loving husband. I wish you both the best. Stay strong.

                          Rosa

                          • February 15, 2017 at 8:14 pm
                          maperny
                          Participant

                            That is certainly encouraging, Rob.  Lots of positive energy being wished to both you and Adriana.

                            Maria

                            • February 15, 2017 at 8:14 pm
                            maperny
                            Participant

                              That is certainly encouraging, Rob.  Lots of positive energy being wished to both you and Adriana.

                              Maria

                              • February 15, 2017 at 8:14 pm
                              maperny
                              Participant

                                That is certainly encouraging, Rob.  Lots of positive energy being wished to both you and Adriana.

                                Maria

                                • February 16, 2017 at 4:51 pm
                                snow white
                                Participant

                                  Thank you for the post Rob, any and all info on LMD is of great interest to us.  So happy to hear that your girl got to come home, so AWESOME!!  I am hoping that Adriana will have great relief with the radiation.  You have a lot of people on here cheering for you both.  Stay positive and keep loving each other, you set such a great example of grace and positivity.

                                  xo Jen

                                  • February 16, 2017 at 4:51 pm
                                  snow white
                                  Participant

                                    Thank you for the post Rob, any and all info on LMD is of great interest to us.  So happy to hear that your girl got to come home, so AWESOME!!  I am hoping that Adriana will have great relief with the radiation.  You have a lot of people on here cheering for you both.  Stay positive and keep loving each other, you set such a great example of grace and positivity.

                                    xo Jen

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