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Tough Day
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Tough Day

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  • Post
    • January 13, 2017 at 5:07 am
    maperny
    Participant

      Yesterday my husband, Juan, had 4 hours of MRI's under sedation due to current back pain levels.  They did spine, pelvis and brain.  Today CT to check abdomen/chest.  

      Got results back from MRI's and devastated to learn from spine Drs/radiologist here at MDA that he has LMD plus brain mets for the first time.  

      Not sure about rest of results yet.

      This has been such a fight since stage 4 diagnosed in Oct 2014, high dose IL-2. Ipi, Opdivo, Il-10, Keytruda, CVD chemo, ipi/Nivo combo, surgeries, radiation and TIL.  And now leptomeningeal disease.  I have always had hope and tried to keep us all upbeat but this news feels like a punch in the stomach.

      Waiting to hear next steps.  Any advice from anyone about LMD treatments and what we should expect would be much appreciated.

      Maria

    Viewing 23 reply threads
    • Replies
        • January 13, 2017 at 6:05 am
        UBContributor
        Participant

          So sad and scaring to hear…we are with you!

          • January 13, 2017 at 6:05 am
          UBContributor
          Participant

            So sad and scaring to hear…we are with you!

            • January 13, 2017 at 6:05 am
            UBContributor
            Participant

              So sad and scaring to hear…we are with you!

              • January 13, 2017 at 6:10 am
              adriana cooper
              Participant

                Sorry he has joined this part of the club. I imagine he will likely be getting one or more lumbar punctures to test his CSF in order to make a definitive diagnosis. Please see my post here

                https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/please-readi-am-scared

                and here

                https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/md-anderson-0

                MDA Dr.Glitza would be the place for treatment. I would be interested what the other doctors there have to say on the subject.

                Yes new information of this sort is very much a kick in the stomach. Although you can't change the diagnosis or the prognosis, you control what you do with the information and your time. Stay positive, make a conscious effort to not stress. Cry when you need and then enjoy what happiness you can. I understand from others that the IT-IL2 treatment that may be offered there is rough (less so than IV-IL2 ??) and continuous but some have done it with months and years of success. I hope it is successful for your husband if it is right for him and he chooses it and I also understand if he doesn't. 

                BRAF status?? Give it a try for some relief even if re-introduction, if appropriate.

                Above all live, love and enjoy each other and life. 

                Best wishes, Rob

                • January 13, 2017 at 6:10 am
                adriana cooper
                Participant

                  Sorry he has joined this part of the club. I imagine he will likely be getting one or more lumbar punctures to test his CSF in order to make a definitive diagnosis. Please see my post here

                  https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/please-readi-am-scared

                  and here

                  https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/md-anderson-0

                  MDA Dr.Glitza would be the place for treatment. I would be interested what the other doctors there have to say on the subject.

                  Yes new information of this sort is very much a kick in the stomach. Although you can't change the diagnosis or the prognosis, you control what you do with the information and your time. Stay positive, make a conscious effort to not stress. Cry when you need and then enjoy what happiness you can. I understand from others that the IT-IL2 treatment that may be offered there is rough (less so than IV-IL2 ??) and continuous but some have done it with months and years of success. I hope it is successful for your husband if it is right for him and he chooses it and I also understand if he doesn't. 

                  BRAF status?? Give it a try for some relief even if re-introduction, if appropriate.

                  Above all live, love and enjoy each other and life. 

                  Best wishes, Rob

                  • January 13, 2017 at 6:10 am
                  adriana cooper
                  Participant

                    Sorry he has joined this part of the club. I imagine he will likely be getting one or more lumbar punctures to test his CSF in order to make a definitive diagnosis. Please see my post here

                    https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/please-readi-am-scared

                    and here

                    https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/md-anderson-0

                    MDA Dr.Glitza would be the place for treatment. I would be interested what the other doctors there have to say on the subject.

                    Yes new information of this sort is very much a kick in the stomach. Although you can't change the diagnosis or the prognosis, you control what you do with the information and your time. Stay positive, make a conscious effort to not stress. Cry when you need and then enjoy what happiness you can. I understand from others that the IT-IL2 treatment that may be offered there is rough (less so than IV-IL2 ??) and continuous but some have done it with months and years of success. I hope it is successful for your husband if it is right for him and he chooses it and I also understand if he doesn't. 

                    BRAF status?? Give it a try for some relief even if re-introduction, if appropriate.

                    Above all live, love and enjoy each other and life. 

                    Best wishes, Rob

                      • January 13, 2017 at 2:24 pm
                      maperny
                      Participant

                        Thank you so much, Rob

                        Juan is not BRAF positive unfortunately.

                        We are waiting to hear back on next steps, will keep you posted.

                        Your words of positivity are so helpful.

                        Maria

                        • January 13, 2017 at 2:24 pm
                        maperny
                        Participant

                          Thank you so much, Rob

                          Juan is not BRAF positive unfortunately.

                          We are waiting to hear back on next steps, will keep you posted.

                          Your words of positivity are so helpful.

                          Maria

                          • January 13, 2017 at 2:24 pm
                          maperny
                          Participant

                            Thank you so much, Rob

                            Juan is not BRAF positive unfortunately.

                            We are waiting to hear back on next steps, will keep you posted.

                            Your words of positivity are so helpful.

                            Maria

                          • January 13, 2017 at 3:17 pm
                          Bubbles
                          Participant

                            So very sorry, Maria.  You two have been through so much. I can offer no additional advice other than echo the good information that Rob has given you.  Hang in there.  Celeste

                            • January 13, 2017 at 3:17 pm
                            Bubbles
                            Participant

                              So very sorry, Maria.  You two have been through so much. I can offer no additional advice other than echo the good information that Rob has given you.  Hang in there.  Celeste

                              • January 13, 2017 at 3:17 pm
                              Bubbles
                              Participant

                                So very sorry, Maria.  You two have been through so much. I can offer no additional advice other than echo the good information that Rob has given you.  Hang in there.  Celeste

                                • January 13, 2017 at 4:36 pm
                                Tim–MRF
                                Guest

                                  Maria:

                                  I am sorry to hear this report. LMD and brain mets remain challenging, as you know. In December of 2015 the MRF hosted a summit on brain mets and LMD, bringing together experts from melanoma but also from breast cancer and the primary brain tumor field. This resulted in a publication that lays out the current best practices for treatment and the rational path forward for additional research. 

                                  The summit was chaired by Harriet Kluger of Yale and Mike Davies of MDA. Mike did the majority of the work on the paper. I say all of this to assure you that through MDA you have access to the best thinking and expertise around brain mets and LMD. Other places might be as good–and some are–but no-one is better.

                                  I have drafted a lay-language summary of the published paper. It is rather long and still somewhat complicated–needs another good round of editing. I am happy to send it to you if you are interested. Just drop me a note:  [email protected]

                                  Tim–MRF

                                   

                                   

                                    • January 13, 2017 at 6:14 pm
                                    Spl25
                                    Participant

                                      To Original Poster: Have you spoken to Dr. Davies at MDA about any possible (non-BRAF) targeted therapies?

                                      • January 13, 2017 at 7:20 pm
                                      maperny
                                      Participant

                                        Thanks for pointer, we will discuss with MDA.

                                        • January 13, 2017 at 7:20 pm
                                        maperny
                                        Participant

                                          Thanks for pointer, we will discuss with MDA.

                                          • January 13, 2017 at 7:20 pm
                                          maperny
                                          Participant

                                            Thanks for pointer, we will discuss with MDA.

                                            • January 13, 2017 at 6:14 pm
                                            Spl25
                                            Participant

                                              To Original Poster: Have you spoken to Dr. Davies at MDA about any possible (non-BRAF) targeted therapies?

                                              • January 13, 2017 at 6:14 pm
                                              Spl25
                                              Participant

                                                To Original Poster: Have you spoken to Dr. Davies at MDA about any possible (non-BRAF) targeted therapies?

                                                • January 13, 2017 at 7:20 pm
                                                maperny
                                                Participant

                                                  Just emailed you, Tim.  Thanks

                                                  • January 13, 2017 at 7:20 pm
                                                  maperny
                                                  Participant

                                                    Just emailed you, Tim.  Thanks

                                                    • January 13, 2017 at 7:20 pm
                                                    maperny
                                                    Participant

                                                      Just emailed you, Tim.  Thanks

                                                    • January 13, 2017 at 4:36 pm
                                                    Tim–MRF
                                                    Guest

                                                      Maria:

                                                      I am sorry to hear this report. LMD and brain mets remain challenging, as you know. In December of 2015 the MRF hosted a summit on brain mets and LMD, bringing together experts from melanoma but also from breast cancer and the primary brain tumor field. This resulted in a publication that lays out the current best practices for treatment and the rational path forward for additional research. 

                                                      The summit was chaired by Harriet Kluger of Yale and Mike Davies of MDA. Mike did the majority of the work on the paper. I say all of this to assure you that through MDA you have access to the best thinking and expertise around brain mets and LMD. Other places might be as good–and some are–but no-one is better.

                                                      I have drafted a lay-language summary of the published paper. It is rather long and still somewhat complicated–needs another good round of editing. I am happy to send it to you if you are interested. Just drop me a note:  [email protected]

                                                      Tim–MRF

                                                       

                                                       

                                                      • January 13, 2017 at 4:36 pm
                                                      Tim–MRF
                                                      Guest

                                                        Maria:

                                                        I am sorry to hear this report. LMD and brain mets remain challenging, as you know. In December of 2015 the MRF hosted a summit on brain mets and LMD, bringing together experts from melanoma but also from breast cancer and the primary brain tumor field. This resulted in a publication that lays out the current best practices for treatment and the rational path forward for additional research. 

                                                        The summit was chaired by Harriet Kluger of Yale and Mike Davies of MDA. Mike did the majority of the work on the paper. I say all of this to assure you that through MDA you have access to the best thinking and expertise around brain mets and LMD. Other places might be as good–and some are–but no-one is better.

                                                        I have drafted a lay-language summary of the published paper. It is rather long and still somewhat complicated–needs another good round of editing. I am happy to send it to you if you are interested. Just drop me a note:  [email protected]

                                                        Tim–MRF

                                                         

                                                         

                                                        • January 13, 2017 at 8:31 pm
                                                        jbronicki
                                                        Participant

                                                          Hi Maria,

                                                          So sorry you got such disappointing news.  I can't add to the great advice from the others but if you need anything at all feel free to reach out.  We are in Houston as well (I'm at UH and my husband is at Baylor) so please don't hesitate to ask for support.

                                                          Many hugs,

                                                          • January 13, 2017 at 8:31 pm
                                                          jbronicki
                                                          Participant

                                                            Hi Maria,

                                                            So sorry you got such disappointing news.  I can't add to the great advice from the others but if you need anything at all feel free to reach out.  We are in Houston as well (I'm at UH and my husband is at Baylor) so please don't hesitate to ask for support.

                                                            Many hugs,

                                                            • January 13, 2017 at 8:31 pm
                                                            jbronicki
                                                            Participant

                                                              Hi Maria,

                                                              So sorry you got such disappointing news.  I can't add to the great advice from the others but if you need anything at all feel free to reach out.  We are in Houston as well (I'm at UH and my husband is at Baylor) so please don't hesitate to ask for support.

                                                              Many hugs,

                                                              • January 14, 2017 at 4:42 am
                                                              snow white
                                                              Participant

                                                                Oh goodness Maria.  My heart goes out to you.  I am so very sorry of these new findings. Thank goodness you are at the right place for the treatment of LMD.  Juan has been through so much and is such a fighter!  Please know that you are both in my thoughts and I wish you peace and comfort in this very difficult time.  Take care.

                                                                Jen

                                                                • January 14, 2017 at 4:42 am
                                                                snow white
                                                                Participant

                                                                  Oh goodness Maria.  My heart goes out to you.  I am so very sorry of these new findings. Thank goodness you are at the right place for the treatment of LMD.  Juan has been through so much and is such a fighter!  Please know that you are both in my thoughts and I wish you peace and comfort in this very difficult time.  Take care.

                                                                  Jen

                                                                  • January 14, 2017 at 4:42 am
                                                                  snow white
                                                                  Participant

                                                                    Oh goodness Maria.  My heart goes out to you.  I am so very sorry of these new findings. Thank goodness you are at the right place for the treatment of LMD.  Juan has been through so much and is such a fighter!  Please know that you are both in my thoughts and I wish you peace and comfort in this very difficult time.  Take care.

                                                                    Jen

                                                                    • January 14, 2017 at 9:08 pm
                                                                    _Paul_
                                                                    Participant

                                                                      Oh Maria,

                                                                      I am so sorry for this bad news. I am praying for you and your husband. I know these are only words, but hang in there. This community you are a part of is here to support you both.

                                                                      – Paul 

                                                                      • January 14, 2017 at 9:08 pm
                                                                      _Paul_
                                                                      Participant

                                                                        Oh Maria,

                                                                        I am so sorry for this bad news. I am praying for you and your husband. I know these are only words, but hang in there. This community you are a part of is here to support you both.

                                                                        – Paul 

                                                                        • January 14, 2017 at 9:08 pm
                                                                        _Paul_
                                                                        Participant

                                                                          Oh Maria,

                                                                          I am so sorry for this bad news. I am praying for you and your husband. I know these are only words, but hang in there. This community you are a part of is here to support you both.

                                                                          – Paul 

                                                                          • January 15, 2017 at 5:36 pm
                                                                          JoshF
                                                                          Participant

                                                                            Ugh!!! I'm sorry to hear this…just unbelievable. I'm so tired of this disease. Praying for the best!!!

                                                                            • January 15, 2017 at 5:36 pm
                                                                            JoshF
                                                                            Participant

                                                                              Ugh!!! I'm sorry to hear this…just unbelievable. I'm so tired of this disease. Praying for the best!!!

                                                                              • January 15, 2017 at 5:36 pm
                                                                              JoshF
                                                                              Participant

                                                                                Ugh!!! I'm sorry to hear this…just unbelievable. I'm so tired of this disease. Praying for the best!!!

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