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May be a good time for another long term STAGE III & IV survivor stories update

Forums General Melanoma Community May be a good time for another long term STAGE III & IV survivor stories update

  • Post
    jenny22
    Participant

      Good morning everyone-

      Its been a tough few days on the board…..after reading recent posts from Josh, Paul, and others….(and wondering about Jamieth29)  I thought it might be a good time to for another LONG TERM Stage III and IV survivor roll call.

      Any long term STAGE III survivor stories….anyone after multiple recurrnces?

      And any long term Stage IV survivor stories?

      Melanoma is one tough battle, and this time of year is often tougher.

      Hoping some of the longer term folks will chime in…those good stories are so encouraging and  a great reminder for everyone.

      Wishing everoyne happy holidays, and lots of hope for a healthy 2017!!!!!

      LONG TERM III AND IV SURVIVORS PLEASE POST!!!!!!

       

       

       

    Viewing 44 reply threads
    • Replies
        snow white
        Participant

          Looking forward to any and all responses.  It gives us all some hope 🙂

          snow white
          Participant

            Looking forward to any and all responses.  It gives us all some hope 🙂

              msitz
              Participant

                My dad was diagnosed in March 2015 with stage 4 melanoma of unknown primary with brain, lung, bowel and lymph node metastases. He was given a prognosis of 2 months at diagnosis and had a melanoma related bowel perforation prior to initiating therapy (which was managed with antibiotics because he was not a surgical candidate). We brought him to MD Anderson as immunotherapy had not yet been approved in Canada  

                He was started on Keytruda as first line therapy and had a dramatic response. His most recent PET scan had just one intraabdominal lesion left that is still shrinking. There is talk of surgically removing it which would leave him NEAD.

                His original tumour burden was very high (8cm lung and bowel tumours) so there is still hope with those with high tumour burden widespread metastatic disease. The crew at MD Anderson (and Keytruda) definitely saved my dad's life!

                 

                 

                 

                Patrisa
                Participant

                  Wow, that´s amazing, i am sooo happy for your dad!

                   

                  Patrisa
                  Participant

                    Wow, that´s amazing, i am sooo happy for your dad!

                     

                    Patrisa
                    Participant

                      Wow, that´s amazing, i am sooo happy for your dad!

                       

                      msitz
                      Participant

                        My dad was diagnosed in March 2015 with stage 4 melanoma of unknown primary with brain, lung, bowel and lymph node metastases. He was given a prognosis of 2 months at diagnosis and had a melanoma related bowel perforation prior to initiating therapy (which was managed with antibiotics because he was not a surgical candidate). We brought him to MD Anderson as immunotherapy had not yet been approved in Canada  

                        He was started on Keytruda as first line therapy and had a dramatic response. His most recent PET scan had just one intraabdominal lesion left that is still shrinking. There is talk of surgically removing it which would leave him NEAD.

                        His original tumour burden was very high (8cm lung and bowel tumours) so there is still hope with those with high tumour burden widespread metastatic disease. The crew at MD Anderson (and Keytruda) definitely saved my dad's life!

                         

                         

                         

                        msitz
                        Participant

                          My dad was diagnosed in March 2015 with stage 4 melanoma of unknown primary with brain, lung, bowel and lymph node metastases. He was given a prognosis of 2 months at diagnosis and had a melanoma related bowel perforation prior to initiating therapy (which was managed with antibiotics because he was not a surgical candidate). We brought him to MD Anderson as immunotherapy had not yet been approved in Canada  

                          He was started on Keytruda as first line therapy and had a dramatic response. His most recent PET scan had just one intraabdominal lesion left that is still shrinking. There is talk of surgically removing it which would leave him NEAD.

                          His original tumour burden was very high (8cm lung and bowel tumours) so there is still hope with those with high tumour burden widespread metastatic disease. The crew at MD Anderson (and Keytruda) definitely saved my dad's life!

                           

                           

                           

                        snow white
                        Participant

                          Looking forward to any and all responses.  It gives us all some hope 🙂

                          Toby0987
                          Participant

                            Stage 3b since feb 2013-mole on inner forearm-macromet to armpit. 39 yoa then. Removed 40 some lymph nodes just one fat one, mitosis 4-chose watch and wait and no problems since then. Go in every 6 months to get a PET. Have one more year of PETs then only get one a year after that. 

                            Toby0987
                            Participant

                              Stage 3b since feb 2013-mole on inner forearm-macromet to armpit. 39 yoa then. Removed 40 some lymph nodes just one fat one, mitosis 4-chose watch and wait and no problems since then. Go in every 6 months to get a PET. Have one more year of PETs then only get one a year after that. 

                              Toby0987
                              Participant

                                Stage 3b since feb 2013-mole on inner forearm-macromet to armpit. 39 yoa then. Removed 40 some lymph nodes just one fat one, mitosis 4-chose watch and wait and no problems since then. Go in every 6 months to get a PET. Have one more year of PETs then only get one a year after that. 

                                Kim K
                                Participant

                                  Stage IV, currently NED 6.5 YEARS and was let go by my onc's this year.  Lung surgery & IL-2, 23 bags later cool.

                                  Kim K
                                  Participant

                                    Stage IV, currently NED 6.5 YEARS and was let go by my onc's this year.  Lung surgery & IL-2, 23 bags later cool.

                                    Kim K
                                    Participant

                                      Stage IV, currently NED 6.5 YEARS and was let go by my onc's this year.  Lung surgery & IL-2, 23 bags later cool.

                                        Kim K
                                        Participant

                                          Oh yeah, I was originally diagnosed stage 2A in 2002 which would make me a 15 year survivor!

                                          Kim K
                                          Participant

                                            Oh yeah, I was originally diagnosed stage 2A in 2002 which would make me a 15 year survivor!

                                            Kim K
                                            Participant

                                              Oh yeah, I was originally diagnosed stage 2A in 2002 which would make me a 15 year survivor!

                                            Richard_K
                                            Participant

                                              Stage IV diagnosis 7 years 3 months ago. Been on vemurafenib now for 6 years 9 months.

                                              Richard_K
                                              Participant

                                                Stage IV diagnosis 7 years 3 months ago. Been on vemurafenib now for 6 years 9 months.

                                                Richard_K
                                                Participant

                                                  Stage IV diagnosis 7 years 3 months ago. Been on vemurafenib now for 6 years 9 months.

                                                  Fen
                                                  Participant

                                                    Hard to tell what stage I was since there was an unknown primary but at least 3 with a met to a lymph node in my parotid gland.  That was 2005 and haven't had any recurrences.  Did 6 months of interferon but frankly, I don't think that helped at all.   So very concerned and praying hard for all on the board.

                                                    Fen
                                                    Participant

                                                      Hard to tell what stage I was since there was an unknown primary but at least 3 with a met to a lymph node in my parotid gland.  That was 2005 and haven't had any recurrences.  Did 6 months of interferon but frankly, I don't think that helped at all.   So very concerned and praying hard for all on the board.

                                                      Fen
                                                      Participant

                                                        Hard to tell what stage I was since there was an unknown primary but at least 3 with a met to a lymph node in my parotid gland.  That was 2005 and haven't had any recurrences.  Did 6 months of interferon but frankly, I don't think that helped at all.   So very concerned and praying hard for all on the board.

                                                        liberty04281
                                                        Participant
                                                          Almost 7 years since I was diagnosed with stage 1, than year and half later stage 3. I had a few surgeries to remove my lymph nodes than radiation. Two years ago stage 4, small tumors in my lungs. I had treatment with Yervoy. Most of the tumors shrank, and since than I am stable, feeling good, working full time and living my life in fullness. Hoping next scan in January will be good.
                                                          There is always Hope.
                                                          Hope is everything!.
                                                          liberty04281
                                                          Participant
                                                            Almost 7 years since I was diagnosed with stage 1, than year and half later stage 3. I had a few surgeries to remove my lymph nodes than radiation. Two years ago stage 4, small tumors in my lungs. I had treatment with Yervoy. Most of the tumors shrank, and since than I am stable, feeling good, working full time and living my life in fullness. Hoping next scan in January will be good.
                                                            There is always Hope.
                                                            Hope is everything!.
                                                            liberty04281
                                                            Participant
                                                              Almost 7 years since I was diagnosed with stage 1, than year and half later stage 3. I had a few surgeries to remove my lymph nodes than radiation. Two years ago stage 4, small tumors in my lungs. I had treatment with Yervoy. Most of the tumors shrank, and since than I am stable, feeling good, working full time and living my life in fullness. Hoping next scan in January will be good.
                                                              There is always Hope.
                                                              Hope is everything!.
                                                              marta010
                                                              Participant

                                                                My husband was diagnosed in March 2012 with unknown primary, mets to brain and other areas in his body.  Has been battling every day since –  treatments include radiation, multiple gamma knife procedures, 2 craniotomies, zelboraf, ipi, Tafinlar, Keytruda.   He is truly a miracle and we are thankful for every additional day.  He's been able to see our kids graduate from college and our daughter get married this past October.  We take life one day at a time – each treatment buys him time until the next one comes along.  

                                                                Ann

                                                                marta010
                                                                Participant

                                                                  My husband was diagnosed in March 2012 with unknown primary, mets to brain and other areas in his body.  Has been battling every day since –  treatments include radiation, multiple gamma knife procedures, 2 craniotomies, zelboraf, ipi, Tafinlar, Keytruda.   He is truly a miracle and we are thankful for every additional day.  He's been able to see our kids graduate from college and our daughter get married this past October.  We take life one day at a time – each treatment buys him time until the next one comes along.  

                                                                  Ann

                                                                  marta010
                                                                  Participant

                                                                    My husband was diagnosed in March 2012 with unknown primary, mets to brain and other areas in his body.  Has been battling every day since –  treatments include radiation, multiple gamma knife procedures, 2 craniotomies, zelboraf, ipi, Tafinlar, Keytruda.   He is truly a miracle and we are thankful for every additional day.  He's been able to see our kids graduate from college and our daughter get married this past October.  We take life one day at a time – each treatment buys him time until the next one comes along.  

                                                                    Ann

                                                                    Gene_S
                                                                    Participant

                                                                      My husband was diagnosed with his first melanoma in Jan. 2008 with a 10.5 mm tumor with a Stage III and after 3 more surgeries he became Stage IV in Oct. of 2010.  He stated a clinical trial for Ipi (Yervoy) 10mg/kg and GM-CSF in March of 2011 with metastisis to the liver, lungs and an unresectable tumor pushing on the C1-C2 spine.  He became NED in July 2012 and went off of the Ipi and GM-CSF in Dec. 2013.  So he has been NED for 4.5 years.

                                                                      Judy (loving wife of Gene Stage IV and now NED for 4.5 years)

                                                                      Gene_S
                                                                      Participant

                                                                        My husband was diagnosed with his first melanoma in Jan. 2008 with a 10.5 mm tumor with a Stage III and after 3 more surgeries he became Stage IV in Oct. of 2010.  He stated a clinical trial for Ipi (Yervoy) 10mg/kg and GM-CSF in March of 2011 with metastisis to the liver, lungs and an unresectable tumor pushing on the C1-C2 spine.  He became NED in July 2012 and went off of the Ipi and GM-CSF in Dec. 2013.  So he has been NED for 4.5 years.

                                                                        Judy (loving wife of Gene Stage IV and now NED for 4.5 years)

                                                                        Gene_S
                                                                        Participant

                                                                          My husband was diagnosed with his first melanoma in Jan. 2008 with a 10.5 mm tumor with a Stage III and after 3 more surgeries he became Stage IV in Oct. of 2010.  He stated a clinical trial for Ipi (Yervoy) 10mg/kg and GM-CSF in March of 2011 with metastisis to the liver, lungs and an unresectable tumor pushing on the C1-C2 spine.  He became NED in July 2012 and went off of the Ipi and GM-CSF in Dec. 2013.  So he has been NED for 4.5 years.

                                                                          Judy (loving wife of Gene Stage IV and now NED for 4.5 years)

                                                                          Linny
                                                                          Participant

                                                                            Stage III, Unknown Primary. NED since November 2010. Christmas and New Year's that year were friggin' awful but it's all behind me now. I was in a phase III clinical trial for the MAGE A3 vaccine that was discontinued because it was shown to not have much of a benefit. I guess that's just a fancy way of saying that the both the vaccine group and the placebo group were doing well. <sigh>

                                                                            Have a CT Scan coming up in February 2017. Overall I am feeling well and enjoying life. Have resumed doing many of the things I loved doing prior to my diagnosis, like training my dog, playing music, and photography. 

                                                                            Linny
                                                                            Participant

                                                                              Stage III, Unknown Primary. NED since November 2010. Christmas and New Year's that year were friggin' awful but it's all behind me now. I was in a phase III clinical trial for the MAGE A3 vaccine that was discontinued because it was shown to not have much of a benefit. I guess that's just a fancy way of saying that the both the vaccine group and the placebo group were doing well. <sigh>

                                                                              Have a CT Scan coming up in February 2017. Overall I am feeling well and enjoying life. Have resumed doing many of the things I loved doing prior to my diagnosis, like training my dog, playing music, and photography. 

                                                                              Linny
                                                                              Participant

                                                                                Stage III, Unknown Primary. NED since November 2010. Christmas and New Year's that year were friggin' awful but it's all behind me now. I was in a phase III clinical trial for the MAGE A3 vaccine that was discontinued because it was shown to not have much of a benefit. I guess that's just a fancy way of saying that the both the vaccine group and the placebo group were doing well. <sigh>

                                                                                Have a CT Scan coming up in February 2017. Overall I am feeling well and enjoying life. Have resumed doing many of the things I loved doing prior to my diagnosis, like training my dog, playing music, and photography. 

                                                                                  jenny22
                                                                                  Participant

                                                                                    Hi Linny- that is great to hear….

                                                                                    I cant seem to shake the feeling lately that progressng to Stage IV is ineveitable, and just a matter of time….especially after 2 recurrences….both local/intransits….i think i need an attitude adjustment…

                                                                                    Reading stories likes yours is so encouraging……

                                                                                    Have a wonderful holiday.

                                                                                    TKS!!!!

                                                                                    jenny

                                                                                    jenny22
                                                                                    Participant

                                                                                      Hi Linny- that is great to hear….

                                                                                      I cant seem to shake the feeling lately that progressng to Stage IV is ineveitable, and just a matter of time….especially after 2 recurrences….both local/intransits….i think i need an attitude adjustment…

                                                                                      Reading stories likes yours is so encouraging……

                                                                                      Have a wonderful holiday.

                                                                                      TKS!!!!

                                                                                      jenny

                                                                                      jenny22
                                                                                      Participant

                                                                                        Hi Linny- that is great to hear….

                                                                                        I cant seem to shake the feeling lately that progressng to Stage IV is ineveitable, and just a matter of time….especially after 2 recurrences….both local/intransits….i think i need an attitude adjustment…

                                                                                        Reading stories likes yours is so encouraging……

                                                                                        Have a wonderful holiday.

                                                                                        TKS!!!!

                                                                                        jenny

                                                                                      jaco
                                                                                      Participant

                                                                                        2010 first diagnosed,  came back 2015 Stage III lymph node dissection in March 2015 right groin followed by radiation. Spread to my lymph node  under right arm and back in right groin, summer 2015. Now stage IV- I started targeted therapy- combo meki/tafinilar in Sept 2015. Pet scan in March 2016 NO SIGN OF CANCER pet scan September 2016 NO CANCER. REMISSION!!!!!! I'm going to make a year cancer free. Then will push for year two.  

                                                                                        Merry Christmas to all!!!

                                                                                        jaco
                                                                                        Participant

                                                                                          2010 first diagnosed,  came back 2015 Stage III lymph node dissection in March 2015 right groin followed by radiation. Spread to my lymph node  under right arm and back in right groin, summer 2015. Now stage IV- I started targeted therapy- combo meki/tafinilar in Sept 2015. Pet scan in March 2016 NO SIGN OF CANCER pet scan September 2016 NO CANCER. REMISSION!!!!!! I'm going to make a year cancer free. Then will push for year two.  

                                                                                          Merry Christmas to all!!!

                                                                                          jaco
                                                                                          Participant

                                                                                            2010 first diagnosed,  came back 2015 Stage III lymph node dissection in March 2015 right groin followed by radiation. Spread to my lymph node  under right arm and back in right groin, summer 2015. Now stage IV- I started targeted therapy- combo meki/tafinilar in Sept 2015. Pet scan in March 2016 NO SIGN OF CANCER pet scan September 2016 NO CANCER. REMISSION!!!!!! I'm going to make a year cancer free. Then will push for year two.  

                                                                                            Merry Christmas to all!!!

                                                                                            Bubbles
                                                                                            Participant

                                                                                              I figure you all know my history…but if it helps:

                                                                                              Stage IIIb in 2003. Stage IV with brain and lung mets in 2010. SRS to brain, upper right lobe of lung removed then a Phase 1 nivolumab (now Opdivo) trial for 2 1/2 years…last dose was in June of 2013. So…that's 13 years in melanoma world. More than 6 years Stage IV, but also more than 6 years NED, and more than three years since my last treatment.

                                                                                              All my best to each of you. Celeste

                                                                                              Bubbles
                                                                                              Participant

                                                                                                I figure you all know my history…but if it helps:

                                                                                                Stage IIIb in 2003. Stage IV with brain and lung mets in 2010. SRS to brain, upper right lobe of lung removed then a Phase 1 nivolumab (now Opdivo) trial for 2 1/2 years…last dose was in June of 2013. So…that's 13 years in melanoma world. More than 6 years Stage IV, but also more than 6 years NED, and more than three years since my last treatment.

                                                                                                All my best to each of you. Celeste

                                                                                                Bubbles
                                                                                                Participant

                                                                                                  I figure you all know my history…but if it helps:

                                                                                                  Stage IIIb in 2003. Stage IV with brain and lung mets in 2010. SRS to brain, upper right lobe of lung removed then a Phase 1 nivolumab (now Opdivo) trial for 2 1/2 years…last dose was in June of 2013. So…that's 13 years in melanoma world. More than 6 years Stage IV, but also more than 6 years NED, and more than three years since my last treatment.

                                                                                                  All my best to each of you. Celeste

                                                                                                    jenny22
                                                                                                    Participant

                                                                                                      Hi Celeste-

                                                                                                      Yes, you're right we do know your history….BUT it nver hurts to see it over and over and over again to reinfroce that there are success stories….

                                                                                                      Have a happy holiday!!!!!

                                                                                                      Jenny

                                                                                                      jenny22
                                                                                                      Participant

                                                                                                        Hi Celeste-

                                                                                                        Yes, you're right we do know your history….BUT it nver hurts to see it over and over and over again to reinfroce that there are success stories….

                                                                                                        Have a happy holiday!!!!!

                                                                                                        Jenny

                                                                                                        jenny22
                                                                                                        Participant

                                                                                                          Hi Celeste-

                                                                                                          Yes, you're right we do know your history….BUT it nver hurts to see it over and over and over again to reinfroce that there are success stories….

                                                                                                          Have a happy holiday!!!!!

                                                                                                          Jenny

                                                                                                        Becky
                                                                                                        Participant

                                                                                                          My son was diagnosed 2009 right before his 21st birthday…very rare oral melanoma on the tip of his tongue. It has spread to one lymph node making him stage 3. All the stats for oral melanoma were horrible..I was a wreck. He did a year of interferon ( kind of the standard back then) and has been NED ever since!

                                                                                                           

                                                                                                          Becky
                                                                                                          Participant

                                                                                                            My son was diagnosed 2009 right before his 21st birthday…very rare oral melanoma on the tip of his tongue. It has spread to one lymph node making him stage 3. All the stats for oral melanoma were horrible..I was a wreck. He did a year of interferon ( kind of the standard back then) and has been NED ever since!

                                                                                                             

                                                                                                            Becky
                                                                                                            Participant

                                                                                                              My son was diagnosed 2009 right before his 21st birthday…very rare oral melanoma on the tip of his tongue. It has spread to one lymph node making him stage 3. All the stats for oral melanoma were horrible..I was a wreck. He did a year of interferon ( kind of the standard back then) and has been NED ever since!

                                                                                                               

                                                                                                              Jahendry12
                                                                                                              Participant

                                                                                                                Husband diagnosed stage 3 in April 2011.  Met on lung in 2012 – now stage IV. NED until November 2015. On keytruda from Jan – May 2016. NED since May 2016. Next scan is January. Praying for continued NED status. Praying for all of you in this board as well. 

                                                                                                                Jahendry12
                                                                                                                Participant

                                                                                                                  Husband diagnosed stage 3 in April 2011.  Met on lung in 2012 – now stage IV. NED until November 2015. On keytruda from Jan – May 2016. NED since May 2016. Next scan is January. Praying for continued NED status. Praying for all of you in this board as well. 

                                                                                                                  Jahendry12
                                                                                                                  Participant

                                                                                                                    Husband diagnosed stage 3 in April 2011.  Met on lung in 2012 – now stage IV. NED until November 2015. On keytruda from Jan – May 2016. NED since May 2016. Next scan is January. Praying for continued NED status. Praying for all of you in this board as well. 

                                                                                                                    Charlie S
                                                                                                                    Participant

                                                                                                                      Stage III unknown primary 1987.

                                                                                                                      Stage IV 1996

                                                                                                                      Seven recurrences since.

                                                                                                                      Surgeries, interferon, interleukin, keytruda.

                                                                                                                      So that makes 30 years coming up since Stage III

                                                                                                                      20 Since Stage IV

                                                                                                                      Last recurrence this year.

                                                                                                                      NED——-Not Expecting Death. 

                                                                                                                       

                                                                                                                      Cheers,

                                                                                                                      Charlie S

                                                                                                                        jenny22
                                                                                                                        Participant

                                                                                                                          Hey Charlie-

                                                                                                                          Thanks for posting and nice to see you…..

                                                                                                                          GOTTA say I love your new definition of NED!!!!!

                                                                                                                          Hope you are doing ok….

                                                                                                                          Best,

                                                                                                                          jenny

                                                                                                                          jenny22
                                                                                                                          Participant

                                                                                                                            Hey Charlie-

                                                                                                                            Thanks for posting and nice to see you…..

                                                                                                                            GOTTA say I love your new definition of NED!!!!!

                                                                                                                            Hope you are doing ok….

                                                                                                                            Best,

                                                                                                                            jenny

                                                                                                                            jenny22
                                                                                                                            Participant

                                                                                                                              Hey Charlie-

                                                                                                                              Thanks for posting and nice to see you…..

                                                                                                                              GOTTA say I love your new definition of NED!!!!!

                                                                                                                              Hope you are doing ok….

                                                                                                                              Best,

                                                                                                                              jenny

                                                                                                                            Charlie S
                                                                                                                            Participant

                                                                                                                              Stage III unknown primary 1987.

                                                                                                                              Stage IV 1996

                                                                                                                              Seven recurrences since.

                                                                                                                              Surgeries, interferon, interleukin, keytruda.

                                                                                                                              So that makes 30 years coming up since Stage III

                                                                                                                              20 Since Stage IV

                                                                                                                              Last recurrence this year.

                                                                                                                              NED——-Not Expecting Death. 

                                                                                                                               

                                                                                                                              Cheers,

                                                                                                                              Charlie S

                                                                                                                              Charlie S
                                                                                                                              Participant

                                                                                                                                Stage III unknown primary 1987.

                                                                                                                                Stage IV 1996

                                                                                                                                Seven recurrences since.

                                                                                                                                Surgeries, interferon, interleukin, keytruda.

                                                                                                                                So that makes 30 years coming up since Stage III

                                                                                                                                20 Since Stage IV

                                                                                                                                Last recurrence this year.

                                                                                                                                NED——-Not Expecting Death. 

                                                                                                                                 

                                                                                                                                Cheers,

                                                                                                                                Charlie S

                                                                                                                                jenny22
                                                                                                                                Participant

                                                                                                                                  Thanks to everyone who posted. 

                                                                                                                                  It is always good to hear long term success stories..

                                                                                                                                  Anyone else out there, who has good news to share?

                                                                                                                                  Wishing everyone a happy and VERY HEALTHY 2017

                                                                                                                                  Best,

                                                                                                                                  jenny

                                                                                                                                  jenny22
                                                                                                                                  Participant

                                                                                                                                    Thanks to everyone who posted. 

                                                                                                                                    It is always good to hear long term success stories..

                                                                                                                                    Anyone else out there, who has good news to share?

                                                                                                                                    Wishing everyone a happy and VERY HEALTHY 2017

                                                                                                                                    Best,

                                                                                                                                    jenny

                                                                                                                                    jenny22
                                                                                                                                    Participant

                                                                                                                                      Thanks to everyone who posted. 

                                                                                                                                      It is always good to hear long term success stories..

                                                                                                                                      Anyone else out there, who has good news to share?

                                                                                                                                      Wishing everyone a happy and VERY HEALTHY 2017

                                                                                                                                      Best,

                                                                                                                                      jenny

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