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LMD treatment decision
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LMD treatment decision

› Forums › General Melanoma Community › LMD treatment decision

  • Post
    • January 28, 2017 at 1:29 pm
    maperny
    Participant

      Hi, 

      I have been trying to post this for a while, we have a tough situation to swallow and for nearly 4 years we have focussed on Hope and the next solution that is round the corner.  I recommend that approach for everyone on this board and for the newly diagnosed there are lots of new, exciting options that will bring up the survival and complete cure %'s I am completely convinced.

      We saw Dr Glitza as recommended to discuss the possible LMD treatment for Juan.  She was excellent, explained everything and the expected prognosis without treatment.  After going through multiple hospital stays, surgeries, radiation, immunotherapy, chemo, TIL…  Juan has decided that he wants to spend as much quality time with me and our 11-year-old son as he can while he is feeling well.  This means that he will have no more treatment except palliative pain management.  They have put him on steroids finally and the difference in pain and energy levels has been wonderful.  He is feeling better than he has been for a year!

      He wants to go to the mountains so on Feb 7th we will be off to Steamboat, we haven't been able to go for three years and we love going there.  Juan won't ski of course but will be enjoying the beautiful mountains and fresh air, a million miles away from the hospital.  Eduardo can't wait to ski again.

      Juan is so strong and has a wonderful attitude about it all, he wants to be in control and to enjoy his time with dignity.  That helps me hold it together for the sake of both of them although my heart is breaking.  

      Sending love, hope, prayers and thanks to everyone.  

      Maria

       

       

    Viewing 17 reply threads
    • Replies
        • January 28, 2017 at 3:52 pm
        _Paul_
        Participant

          Oh Maria,

          Juan is so lucky to have you. I know it is far more difficult for the caregiver than for the patient. I hope that if my journey meets that path that the people in my life are able to summon the love and grace that you are.

          You are all firmly in my prayers, my heart goes out to you.

          – Paul

          • January 28, 2017 at 3:52 pm
          _Paul_
          Participant

            Oh Maria,

            Juan is so lucky to have you. I know it is far more difficult for the caregiver than for the patient. I hope that if my journey meets that path that the people in my life are able to summon the love and grace that you are.

            You are all firmly in my prayers, my heart goes out to you.

            – Paul

            • January 28, 2017 at 3:52 pm
            _Paul_
            Participant

              Oh Maria,

              Juan is so lucky to have you. I know it is far more difficult for the caregiver than for the patient. I hope that if my journey meets that path that the people in my life are able to summon the love and grace that you are.

              You are all firmly in my prayers, my heart goes out to you.

              – Paul

              • January 28, 2017 at 4:05 pm
              BBrakhane
              Participant

                I truly admire his courage and decisions.  He is lucky to have you, have a GREAT time in Steamboat!

                • January 28, 2017 at 4:05 pm
                BBrakhane
                Participant

                  I truly admire his courage and decisions.  He is lucky to have you, have a GREAT time in Steamboat!

                  • January 28, 2017 at 4:05 pm
                  BBrakhane
                  Participant

                    I truly admire his courage and decisions.  He is lucky to have you, have a GREAT time in Steamboat!

                    • January 28, 2017 at 4:40 pm
                    Bubbles
                    Participant

                      So sorry that things have come to this point, Maria.  You and Juan have put up an amazing and hope filled fight for years!!!  Clearly, you can both feel certain that you have done all that you could and then some.  I too agree that my disease and treatments have been much harder on my family than they have been on me.  You are a blessing, not just to Juan and Eduardo and the rest of your loved ones, but to all of us here as well.  I hope you have a lovely trip.  We should all live by Juan's example….enjoy today.  None of us can be certain about tomorrow.  Much love, celeste

                      • January 28, 2017 at 4:40 pm
                      Bubbles
                      Participant

                        So sorry that things have come to this point, Maria.  You and Juan have put up an amazing and hope filled fight for years!!!  Clearly, you can both feel certain that you have done all that you could and then some.  I too agree that my disease and treatments have been much harder on my family than they have been on me.  You are a blessing, not just to Juan and Eduardo and the rest of your loved ones, but to all of us here as well.  I hope you have a lovely trip.  We should all live by Juan's example….enjoy today.  None of us can be certain about tomorrow.  Much love, celeste

                        • January 28, 2017 at 4:40 pm
                        Bubbles
                        Participant

                          So sorry that things have come to this point, Maria.  You and Juan have put up an amazing and hope filled fight for years!!!  Clearly, you can both feel certain that you have done all that you could and then some.  I too agree that my disease and treatments have been much harder on my family than they have been on me.  You are a blessing, not just to Juan and Eduardo and the rest of your loved ones, but to all of us here as well.  I hope you have a lovely trip.  We should all live by Juan's example….enjoy today.  None of us can be certain about tomorrow.  Much love, celeste

                          • January 28, 2017 at 6:19 pm
                          Polymath
                          Participant

                            Maria,

                            You and Juan sound so wonderful.  I often contemplate how I the patient, and my wife will handle defeat if it comes to that.  I want to go with dignity and am inspired by your story.  Despite living in Hawaii, with all the beautiful scenery, absolutely nothing gives me more joy, and soothes my soul, than walking through a snow white forest and luckily despite it all, make sure I do go snowboarding every Spring Break with my daughter.  May peace and love surround your family through it all.

                            Gary

                            • January 28, 2017 at 6:19 pm
                            Polymath
                            Participant

                              Maria,

                              You and Juan sound so wonderful.  I often contemplate how I the patient, and my wife will handle defeat if it comes to that.  I want to go with dignity and am inspired by your story.  Despite living in Hawaii, with all the beautiful scenery, absolutely nothing gives me more joy, and soothes my soul, than walking through a snow white forest and luckily despite it all, make sure I do go snowboarding every Spring Break with my daughter.  May peace and love surround your family through it all.

                              Gary

                              • January 28, 2017 at 6:19 pm
                              Polymath
                              Participant

                                Maria,

                                You and Juan sound so wonderful.  I often contemplate how I the patient, and my wife will handle defeat if it comes to that.  I want to go with dignity and am inspired by your story.  Despite living in Hawaii, with all the beautiful scenery, absolutely nothing gives me more joy, and soothes my soul, than walking through a snow white forest and luckily despite it all, make sure I do go snowboarding every Spring Break with my daughter.  May peace and love surround your family through it all.

                                Gary

                                • January 28, 2017 at 11:40 pm
                                debwray
                                Participant

                                  Hi Maria,

                                  May God bless you and your family.I was hoping it would not get to this point but your dignity in adversity is inspiring. hope you make many happy memories in this so precioustime together.We had Christmas courtesy of steroids and it beat nausea hands down,…..

                                  Thank you for sharing this difficult choice andI hope you gert the best palliative care possible,,

                                  Hugs- no more words

                                  DEb

                                  • January 28, 2017 at 11:40 pm
                                  debwray
                                  Participant

                                    Hi Maria,

                                    May God bless you and your family.I was hoping it would not get to this point but your dignity in adversity is inspiring. hope you make many happy memories in this so precioustime together.We had Christmas courtesy of steroids and it beat nausea hands down,…..

                                    Thank you for sharing this difficult choice andI hope you gert the best palliative care possible,,

                                    Hugs- no more words

                                    DEb

                                    • January 28, 2017 at 11:40 pm
                                    debwray
                                    Participant

                                      Hi Maria,

                                      May God bless you and your family.I was hoping it would not get to this point but your dignity in adversity is inspiring. hope you make many happy memories in this so precioustime together.We had Christmas courtesy of steroids and it beat nausea hands down,…..

                                      Thank you for sharing this difficult choice andI hope you gert the best palliative care possible,,

                                      Hugs- no more words

                                      DEb

                                      • January 30, 2017 at 3:24 am
                                      casagrayson
                                      Participant

                                        Maria,

                                        I'm truly sorry that you and Juan were faced with this decision.  I know it is a hard one for you to accept, but proud of you for being so strong for him.  Make wonderful memories with he and Eduardo at Steamboat.  

                                        • January 30, 2017 at 3:24 am
                                        casagrayson
                                        Participant

                                          Maria,

                                          I'm truly sorry that you and Juan were faced with this decision.  I know it is a hard one for you to accept, but proud of you for being so strong for him.  Make wonderful memories with he and Eduardo at Steamboat.  

                                          • January 30, 2017 at 3:24 am
                                          casagrayson
                                          Participant

                                            Maria,

                                            I'm truly sorry that you and Juan were faced with this decision.  I know it is a hard one for you to accept, but proud of you for being so strong for him.  Make wonderful memories with he and Eduardo at Steamboat.  

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