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Mum – Sadly missed but not forgotten

Forums General Melanoma Community Mum – Sadly missed but not forgotten

  • Post
    Ashykay
    Participant

      Unfortunately I am here to post sad news about my Mum. Mum had been on Yervoy up until around February/March 2012. It was hard to say whether it was working, though she showed signs of an immune response – e.g. rash, heavy foot, some other side effects (though not particularly significant). Unfortunately her larger tumour on her spine eventually restricted her ability to walk and she became wheelchair bound.

      Unfortunately I am here to post sad news about my Mum. Mum had been on Yervoy up until around February/March 2012. It was hard to say whether it was working, though she showed signs of an immune response – e.g. rash, heavy foot, some other side effects (though not particularly significant). Unfortunately her larger tumour on her spine eventually restricted her ability to walk and she became wheelchair bound.

      Mum got to enjoy a fantastic holiday with my Dad in late March/early April. Upon her return, she was not feeling right, and it was discovered that after almost 11 months of jher sacrum tumour just growing where it was and not "spreading", it had spread to her stomach, kidney and liver as well as her upper body. After the controversy of Yervoy (ipi) being rejected on the Australian Pharmaceutical Benefits Scheme around the same time, I proactively campaigned against this decision so that people like my Mum would have subsidised access to Yervoy again even after their tumours had spread elsewhere. This would have been a different start for Mum, as they finally could safely access some of her tumours to do a vaccine + Yervoy (when before they could only do a vaccine with other people's tumours + Yervoy due to the location of her initial tumour). Unfortunately we did not get time to take this further nor even to try raise the $120,000 it would've cost to go on Yervoy again.

      Sadly, Mum quickly deteriorated within the month, and on 16 May 2012, she passed away at home with all of her family by her side (as she wished). She is deeply missed and we are all lost without her. Not sure how we will go on in future, but my campaigning of the PBS decision and other melanoma treatments I hope will bring some meaning to my purpose in life, as well as the love between my family, who I believe are far closer due to Mum. A researcher is doing research into Mum's melanoma (melanoma with an unknown primary), who connected with Mum's story, and is doing fundraising for his research in her honour, which is truly inspiring. I know Mum is proud of everything we have done, and she will never, ever be forgotten. We love her SO very much & she was just such an amazing, inspiring and beautiful person.

    Viewing 17 reply threads
    • Replies
        aldakota22
        Participant

          So sorry on the loss oy your mum.Way too young.Will be in my prayers tonite.Keep the fight for funding of Yervoy for people like your mum.She was one amazing woman cause iher true grit was ingrained in her family.God bless        Al

            deardad
            Participant

              Im sorry to hear that you lost your dear mum.

              My heart goes out to you and your family.

              Take care

              Nahmi from Melbourne

              deardad
              Participant

                Im sorry to hear that you lost your dear mum.

                My heart goes out to you and your family.

                Take care

                Nahmi from Melbourne

                deardad
                Participant

                  Im sorry to hear that you lost your dear mum.

                  My heart goes out to you and your family.

                  Take care

                  Nahmi from Melbourne

                aldakota22
                Participant

                  So sorry on the loss oy your mum.Way too young.Will be in my prayers tonite.Keep the fight for funding of Yervoy for people like your mum.She was one amazing woman cause iher true grit was ingrained in her family.God bless        Al

                  aldakota22
                  Participant

                    So sorry on the loss oy your mum.Way too young.Will be in my prayers tonite.Keep the fight for funding of Yervoy for people like your mum.She was one amazing woman cause iher true grit was ingrained in her family.God bless        Al

                    Ali
                    Participant

                      I am so sorry.  Your campaigning sounds like just the way to honor her.  I wish you and your family the best.

                      Ali
                      Participant

                        I am so sorry.  Your campaigning sounds like just the way to honor her.  I wish you and your family the best.

                        Ali
                        Participant

                          I am so sorry.  Your campaigning sounds like just the way to honor her.  I wish you and your family the best.

                          FormerCaregiver
                          Participant

                            Ashley, I am deeply saddened to read about the loss of your mum. You have my sincere condolences.

                            I feel that the PBS decision to reject Yervoy is surprising and very disappointing. Apparently, this follows negative comments expressed by authorities in the UK recently. Therefore, I encourage you to keep campaigning against the PBS decision. We certainly need more treatments that are approved for late stage melanoma, especially here in Australia.

                            Take care

                            Frank from Australia

                            FormerCaregiver
                            Participant

                              Ashley, I am deeply saddened to read about the loss of your mum. You have my sincere condolences.

                              I feel that the PBS decision to reject Yervoy is surprising and very disappointing. Apparently, this follows negative comments expressed by authorities in the UK recently. Therefore, I encourage you to keep campaigning against the PBS decision. We certainly need more treatments that are approved for late stage melanoma, especially here in Australia.

                              Take care

                              Frank from Australia

                              FormerCaregiver
                              Participant

                                Ashley, I am deeply saddened to read about the loss of your mum. You have my sincere condolences.

                                I feel that the PBS decision to reject Yervoy is surprising and very disappointing. Apparently, this follows negative comments expressed by authorities in the UK recently. Therefore, I encourage you to keep campaigning against the PBS decision. We certainly need more treatments that are approved for late stage melanoma, especially here in Australia.

                                Take care

                                Frank from Australia

                                Gene_S
                                Participant

                                  I am so sorry to hear about your mum.  I pray for you and your family in this difficult time.

                                  Keep up the battle witht he PBS as I am sure your mum is looking down and so proud of you.  I hope the researcher can do some good in your mums name also.

                                  Judy

                                  Gene_S
                                  Participant

                                    I am so sorry to hear about your mum.  I pray for you and your family in this difficult time.

                                    Keep up the battle witht he PBS as I am sure your mum is looking down and so proud of you.  I hope the researcher can do some good in your mums name also.

                                    Judy

                                      NYKaren
                                      Participant

                                        I am so very sorry for your mum.  She certainly had a wonderful advocate and caregiver in you.

                                        You are in my thoughts.

                                        NYKaren
                                        Participant

                                          I am so very sorry for your mum.  She certainly had a wonderful advocate and caregiver in you.

                                          You are in my thoughts.

                                          NYKaren
                                          Participant

                                            I am so very sorry for your mum.  She certainly had a wonderful advocate and caregiver in you.

                                            You are in my thoughts.

                                          Gene_S
                                          Participant

                                            I am so sorry to hear about your mum.  I pray for you and your family in this difficult time.

                                            Keep up the battle witht he PBS as I am sure your mum is looking down and so proud of you.  I hope the researcher can do some good in your mums name also.

                                            Judy

                                            gabsound
                                            Participant
                                              I am so sorry that you have lost your mom to this terrible disease. Losing your mom is especially hard as it is one of the closest relationships you have in life. Thank goodness now she is no longer in pain.

                                              May God bless you and your family,

                                              Julie in Las Vegas

                                              gabsound
                                              Participant
                                                I am so sorry that you have lost your mom to this terrible disease. Losing your mom is especially hard as it is one of the closest relationships you have in life. Thank goodness now she is no longer in pain.

                                                May God bless you and your family,

                                                Julie in Las Vegas

                                                gabsound
                                                Participant
                                                  I am so sorry that you have lost your mom to this terrible disease. Losing your mom is especially hard as it is one of the closest relationships you have in life. Thank goodness now she is no longer in pain.

                                                  May God bless you and your family,

                                                  Julie in Las Vegas

                                                  acortes
                                                  Participant

                                                    Your story hits home. My sister just became wheel charir bound and is very depressed. she is only 38.  My sister just started Yervoy. So your fight means the world to me! Unfortunately doctors are not giving us much hope and give her weeks to live, but we continue to have faith. I truly appreciate your efforts..God Bless you and your family.

                                                    Ana

                                                    acortes
                                                    Participant

                                                      Your story hits home. My sister just became wheel charir bound and is very depressed. she is only 38.  My sister just started Yervoy. So your fight means the world to me! Unfortunately doctors are not giving us much hope and give her weeks to live, but we continue to have faith. I truly appreciate your efforts..God Bless you and your family.

                                                      Ana

                                                      acortes
                                                      Participant

                                                        Your story hits home. My sister just became wheel charir bound and is very depressed. she is only 38.  My sister just started Yervoy. So your fight means the world to me! Unfortunately doctors are not giving us much hope and give her weeks to live, but we continue to have faith. I truly appreciate your efforts..God Bless you and your family.

                                                        Ana

                                                    Viewing 17 reply threads
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