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ljohnston

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      ljohnston
      Keymaster
        To advance the development of new diagnostic tools the MRF collaborates with multiple partners who are committed to ensuring the patient perspective is included in their mission against melanoma. As an organization,  we share this  commitment to making sure the patient voice is elevated during the development of  prevention, diagnostic and treatment resources.
        ljohnston
        Keymaster
          Celeste and group-

          My apologies for the mis-information on the FDA approval.  Before posting this today I made sure our team triple checked everything and communicated with our science teams.

          I know this group looks for the correct information and I extend my apologies for any misdirection, especially since we strive to push out the most up to date info on all treatments, trials, etc.

          Again, sincerest apologies.

          ljohnston
          Keymaster
            All-

            Thank you for the threads on this post regarding the ask the expert series related to gene expression testing.

            The MRF’s education program fields many questions about the testing and treatment pipeline which is why we engage with leaders in the field to offer more information that may be helpful to melanoma patients and caregivers evaluating their options. This is especially important when it comes to rare melanoma subtypes like OM, as the limited number of FDA-approved treatments puts a greater focus on tests and therapies currently in development in the emerging field of personalized medicine. As noted in the presentation the series was/is for educational purposes only and any medical questions should be directed to your healthcare professional for discussion.

             

            ljohnston
            Keymaster
              All-

              First, thank you to all for your comments and concerns regarding the gene expression testing series.

              The MRF’s education program fields many questions about the testing and treatment pipeline which is why we engage with leaders in the field to offer more information that may be helpful to melanoma patients and caregivers evaluating their options. This is especially important when it comes to rare melanoma subtypes like OM, as the limited number of FDA-approved treatments puts a greater focus on tests and therapies currently in development in the emerging field of personalized medicine. As noted in the presentations, the series was/is for educational purposes only and any medical questions should be directed to your healthcare professional for discussion.

               

              ljohnston
              Keymaster
                This reply has been marked as private.
                ljohnston
                Keymaster
                  HI Ed!

                  This test has been approved by the FDA for both cutaneous and ocular melanoma to detect gene expressions.

                  https://castlebiosciences.com/products/decisiondx-melanoma/

                  ljohnston
                  Keymaster
                    Hi all- just wanted to let you know that the reply issues will hopefully be fixed by end of today. Sorry for all the trouble!!- Lauren
                    ljohnston
                    Keymaster
                      Thanks for all your work on assisting with the replies Celeste!
                      ljohnston
                      Keymaster
                        I can see the frustration with what you and your family have been dealing with the past few months.  Thank you for reaching out to CURE OM and our ocular melanoma program.  The Melanoma Research Foundation has a great wealth of knowledge and resources, that may be able to help you with these difficult decisions.  Here is the link to our main Patient Information Page, which also has another forum for melanoma patients that might be of great use.  https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page.  I want to also post a link to our resource page which I hope will assist with looking into different treatments, treatment centers, and other options. https://www.melanoma.org/understand-melanoma/melanoma-treatment
                        In addition, Melanoma Research Foundation has a buddy program that allows individuals to be connected to others who have been through similar treatments, etc, to be a support system.  http://www.melanoma.org/find-support/phone-buddy
                        Phone Buddy | Melanoma Research Foundation
                        The MRF’s Phone Buddy Program offers a supportive lifeline for people newly diagnosed with melanoma.

                         

                        If you need any further assistance, please know that we are here and ready to support you.
                         
                        ljohnston
                        Keymaster
                          I can see the frustration with what you and your family have been dealing with the past few months.  Thank you for reaching out to CURE OM and our ocular melanoma program.  The Melanoma Research Foundation has a great wealth of knowledge and resources, that may be able to help you with these difficult decisions.  Here is the link to our main Patient Information Page, which also has another forum for melanoma patients that might be of great use.  https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page.  I want to also post a link to our resource page which I hope will assist with looking into different treatments, treatment centers, and other options. https://www.melanoma.org/understand-melanoma/melanoma-treatment
                          In addition, Melanoma Research Foundation has a buddy program that allows individuals to be connected to others who have been through similar treatments, etc, to be a support system.  http://www.melanoma.org/find-support/phone-buddy
                          Phone Buddy | Melanoma Research Foundation
                          The MRF’s Phone Buddy Program offers a supportive lifeline for people newly diagnosed with melanoma.

                           

                          If you need any further assistance, please know that we are here and ready to support you.
                           
                          ljohnston
                          Keymaster
                            I can see the frustration with what you and your family have been dealing with the past few months.  Thank you for reaching out to CURE OM and our ocular melanoma program.  The Melanoma Research Foundation has a great wealth of knowledge and resources, that may be able to help you with these difficult decisions.  Here is the link to our main Patient Information Page, which also has another forum for melanoma patients that might be of great use.  https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page.  I want to also post a link to our resource page which I hope will assist with looking into different treatments, treatment centers, and other options. https://www.melanoma.org/understand-melanoma/melanoma-treatment
                            In addition, Melanoma Research Foundation has a buddy program that allows individuals to be connected to others who have been through similar treatments, etc, to be a support system.  http://www.melanoma.org/find-support/phone-buddy
                            Phone Buddy | Melanoma Research Foundation
                            The MRF’s Phone Buddy Program offers a supportive lifeline for people newly diagnosed with melanoma.

                             

                            If you need any further assistance, please know that we are here and ready to support you.
                             
                            ljohnston
                            Keymaster
                              Cindy- I’m so glad that you continued with the appointments and that it was caught!  The test is not 100% accurate, as most tests aren’t unfortunately, I’m sure that the company tries to improve it on a regular basis.  There are many OM patients that were diagnosed class 1 (lowest risk) and then like yourself metastasized.  Based on the information that science has and the markers, that is how the test is used. Unfortunately, every person’s cancer journey is different. I am so glad that you are responding to Keytruda!

                               

                              ljohnston
                              Keymaster
                                Hi Ed-

                                I’m not an expert on the test, but its definitely a question that we can pass to their team or you can ask during the Ask the Expert session.  Happy to assist either way!

                                 

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