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Mom recently diagnosed stage IV
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Mom recently diagnosed stage IV

› Forums › General Melanoma Community › Mom recently diagnosed stage IV

  • Post
    • November 9, 2013 at 3:28 am
    BrandyW
    Participant

      My mom went to the doctor for lower back pain. When the did the MRI (looking for disc issues) they saw lesions on her liver and spine. She was told it was metastic melanoma. They did a full scan (ct) and we are waiting on the results until she gets back from vacation on the 18th. Also did a needle biopsy on her liver.   I'm almost certain she has rumors in her lungs as well because she coughs a lot.  I am going with her to her first oncology appt. What questions should I ask? 

      I found this site while searching on info… Most of it looks pretty grim. Anyone here in a similar situation or know someone who is? Any help on treatment and what to expect is greatly appreciated 🙂

    Viewing 5 reply threads
    • Replies
        • November 9, 2013 at 3:49 am
        melissa ann
        Participant

          Brandy, I am sorry about your mom's news.  I understand that the information you are reading can be scary and overwhelming.  The first thing that I will suggest as I am sure others will as well is to make sure you are seeing an oncologist that is a melanoma specialist.  I am not sure where you live, but many of us can help with that.  There are several new treatments/trials that have been very hopeful in the fight against melanoma and a specialist can help you navigate these options.  My husband just lost his battle with melanoma two weeks ago.  However, we had 10 wonderful years where he was basically healthy and lived life even while fighting and participating in trials.  My best to your family….Melissa

          • November 9, 2013 at 3:49 am
          melissa ann
          Participant

            Brandy, I am sorry about your mom's news.  I understand that the information you are reading can be scary and overwhelming.  The first thing that I will suggest as I am sure others will as well is to make sure you are seeing an oncologist that is a melanoma specialist.  I am not sure where you live, but many of us can help with that.  There are several new treatments/trials that have been very hopeful in the fight against melanoma and a specialist can help you navigate these options.  My husband just lost his battle with melanoma two weeks ago.  However, we had 10 wonderful years where he was basically healthy and lived life even while fighting and participating in trials.  My best to your family….Melissa

              • November 9, 2013 at 4:02 am
              BrandyW
              Participant

                We live in San Antonio, Texas.  MD Anderson (Houston) is where most people go. I'm not sure how we get there… I guess we find out the results from the tests first. She has tried to protect me, and so I was not involved until she got the really bad news.  I will push for a melanoma specialist for sure. 

                I am so sorry for your loss. Thank you for the encouragement and response. I know it must be hard, but it's nice to know I am not alone.  Praying for your peace… Brandy

                • November 9, 2013 at 4:02 am
                BrandyW
                Participant

                  We live in San Antonio, Texas.  MD Anderson (Houston) is where most people go. I'm not sure how we get there… I guess we find out the results from the tests first. She has tried to protect me, and so I was not involved until she got the really bad news.  I will push for a melanoma specialist for sure. 

                  I am so sorry for your loss. Thank you for the encouragement and response. I know it must be hard, but it's nice to know I am not alone.  Praying for your peace… Brandy

                  • November 9, 2013 at 4:21 am
                  melissa ann
                  Participant

                    Brandy, We live in North Carolinabut have spent the last year traveling back and forth to MD Anderson.  My husbands melanoma doctor was Dr. Patrick Hwu.  He is one of several at the melanoma clinic.  We were referred there for a clinical trial by our melanoma specialist here in North Carolina.  I am happy to help further if needed.  Peace to you…Melissa

                    • November 9, 2013 at 4:21 am
                    melissa ann
                    Participant

                      Brandy, We live in North Carolinabut have spent the last year traveling back and forth to MD Anderson.  My husbands melanoma doctor was Dr. Patrick Hwu.  He is one of several at the melanoma clinic.  We were referred there for a clinical trial by our melanoma specialist here in North Carolina.  I am happy to help further if needed.  Peace to you…Melissa

                      • November 9, 2013 at 4:21 am
                      melissa ann
                      Participant

                        Brandy, We live in North Carolinabut have spent the last year traveling back and forth to MD Anderson.  My husbands melanoma doctor was Dr. Patrick Hwu.  He is one of several at the melanoma clinic.  We were referred there for a clinical trial by our melanoma specialist here in North Carolina.  I am happy to help further if needed.  Peace to you…Melissa

                        • November 9, 2013 at 12:41 pm
                        Fen
                        Participant

                          https://www2.mdanderson.org/sapp/contact/selfreferral/

                           

                          the link above is for a form that you fill out to get an appt.  It might be easier to get a dr. to refer you, but the info on the link said they would get back to you within days.   I know it's really scary right now, but your best defense is information and action.  Praying for you and your family.

                          Fen

                          • November 9, 2013 at 12:41 pm
                          Fen
                          Participant

                            https://www2.mdanderson.org/sapp/contact/selfreferral/

                             

                            the link above is for a form that you fill out to get an appt.  It might be easier to get a dr. to refer you, but the info on the link said they would get back to you within days.   I know it's really scary right now, but your best defense is information and action.  Praying for you and your family.

                            Fen

                            • November 10, 2013 at 2:20 am
                            BrandyW
                            Participant

                              Thank you so much for the link! I appreciate your prayers and I am doing my best to be informed. I'm so thankful for this board and everyone willing to share their stories. 

                              • November 10, 2013 at 2:20 am
                              BrandyW
                              Participant

                                Thank you so much for the link! I appreciate your prayers and I am doing my best to be informed. I'm so thankful for this board and everyone willing to share their stories. 

                                • November 10, 2013 at 2:20 am
                                BrandyW
                                Participant

                                  Thank you so much for the link! I appreciate your prayers and I am doing my best to be informed. I'm so thankful for this board and everyone willing to share their stories. 

                                  • November 9, 2013 at 12:41 pm
                                  Fen
                                  Participant

                                    https://www2.mdanderson.org/sapp/contact/selfreferral/

                                     

                                    the link above is for a form that you fill out to get an appt.  It might be easier to get a dr. to refer you, but the info on the link said they would get back to you within days.   I know it's really scary right now, but your best defense is information and action.  Praying for you and your family.

                                    Fen

                                    • November 9, 2013 at 4:02 am
                                    BrandyW
                                    Participant

                                      We live in San Antonio, Texas.  MD Anderson (Houston) is where most people go. I'm not sure how we get there… I guess we find out the results from the tests first. She has tried to protect me, and so I was not involved until she got the really bad news.  I will push for a melanoma specialist for sure. 

                                      I am so sorry for your loss. Thank you for the encouragement and response. I know it must be hard, but it's nice to know I am not alone.  Praying for your peace… Brandy

                                      • November 9, 2013 at 6:41 pm
                                      BrianP
                                      Participant

                                        Melissa,

                                        So sorry for you loss.  I know it must be a tough time for you yet you are still taking the time to try and help others.  That is very admirable.  I'm also a NC melanoma warrior (Eastern NC area).  I hope you are doing as well as you can be at this difficult time.

                                        Brian

                                        • November 9, 2013 at 6:41 pm
                                        BrianP
                                        Participant

                                          Melissa,

                                          So sorry for you loss.  I know it must be a tough time for you yet you are still taking the time to try and help others.  That is very admirable.  I'm also a NC melanoma warrior (Eastern NC area).  I hope you are doing as well as you can be at this difficult time.

                                          Brian

                                          • November 9, 2013 at 6:41 pm
                                          BrianP
                                          Participant

                                            Melissa,

                                            So sorry for you loss.  I know it must be a tough time for you yet you are still taking the time to try and help others.  That is very admirable.  I'm also a NC melanoma warrior (Eastern NC area).  I hope you are doing as well as you can be at this difficult time.

                                            Brian

                                          • November 9, 2013 at 3:49 am
                                          melissa ann
                                          Participant

                                            Brandy, I am sorry about your mom's news.  I understand that the information you are reading can be scary and overwhelming.  The first thing that I will suggest as I am sure others will as well is to make sure you are seeing an oncologist that is a melanoma specialist.  I am not sure where you live, but many of us can help with that.  There are several new treatments/trials that have been very hopeful in the fight against melanoma and a specialist can help you navigate these options.  My husband just lost his battle with melanoma two weeks ago.  However, we had 10 wonderful years where he was basically healthy and lived life even while fighting and participating in trials.  My best to your family….Melissa

                                            • November 9, 2013 at 5:33 am
                                            JerryfromFauq
                                            Participant

                                              Great Oncologists at MDA.  Be sure that your family gets their  own copies of all your Mothers paperwork, radiology, patology and surgical, and bloodwork. reports and  CD copies of all the actual scans.  Now is the best time ever to get a diagnosis of Melanoma.  I have been Stage IV and living life without being NED (No Evidence of Disease – on scans) since 2007 when I was told the llife espectancy (statistics) was under 6 months for 50% of people.  We have been changing that, by learning, fighting and LIVING.

                                              • November 9, 2013 at 5:33 am
                                              JerryfromFauq
                                              Participant

                                                Great Oncologists at MDA.  Be sure that your family gets their  own copies of all your Mothers paperwork, radiology, patology and surgical, and bloodwork. reports and  CD copies of all the actual scans.  Now is the best time ever to get a diagnosis of Melanoma.  I have been Stage IV and living life without being NED (No Evidence of Disease – on scans) since 2007 when I was told the llife espectancy (statistics) was under 6 months for 50% of people.  We have been changing that, by learning, fighting and LIVING.

                                                  • November 10, 2013 at 2:21 am
                                                  BrandyW
                                                  Participant

                                                    HOPE. Thank you!

                                                    • November 10, 2013 at 2:21 am
                                                    BrandyW
                                                    Participant

                                                      HOPE. Thank you!

                                                      • November 10, 2013 at 2:21 am
                                                      BrandyW
                                                      Participant

                                                        HOPE. Thank you!

                                                        • November 10, 2013 at 2:22 am
                                                        BrandyW
                                                        Participant

                                                          HOPE. Thank you!

                                                          • November 10, 2013 at 2:22 am
                                                          BrandyW
                                                          Participant

                                                            HOPE. Thank you!

                                                            • November 10, 2013 at 2:22 am
                                                            BrandyW
                                                            Participant

                                                              HOPE. Thank you!

                                                            • November 9, 2013 at 5:33 am
                                                            JerryfromFauq
                                                            Participant

                                                              Great Oncologists at MDA.  Be sure that your family gets their  own copies of all your Mothers paperwork, radiology, patology and surgical, and bloodwork. reports and  CD copies of all the actual scans.  Now is the best time ever to get a diagnosis of Melanoma.  I have been Stage IV and living life without being NED (No Evidence of Disease – on scans) since 2007 when I was told the llife espectancy (statistics) was under 6 months for 50% of people.  We have been changing that, by learning, fighting and LIVING.

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