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

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

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

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

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. 

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. 

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. 

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

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

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

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

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

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

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.

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.

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.

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

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

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

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)

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)

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)

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. 

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. 

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. 

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!!!

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!!!

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!!!

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

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

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

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!

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!

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!

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. 

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. 

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. 

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

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

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