Long term NED

Hi Jewel – My husband was diagnosed in April 2011 and his only form of treatment has been surgery.  He was NED from May 2011 – Feb 2013.  A scan found a met on his left lung, they went in, took it out and so far so good.  We have a CT next month and if all clear, he will be 1 year NED.

Hope that helps.  If you want to read his profile, see Robert H under Patient Stories.

Hope your husband remains NED for many many years to come 🙂

Julie

Hi Jewel – My husband was diagnosed in April 2011 and his only form of treatment has been surgery.  He was NED from May 2011 – Feb 2013.  A scan found a met on his left lung, they went in, took it out and so far so good.  We have a CT next month and if all clear, he will be 1 year NED.

Hope that helps.  If you want to read his profile, see Robert H under Patient Stories.

Hope your husband remains NED for many many years to come 🙂

Julie

Hi Jewel – My husband was diagnosed in April 2011 and his only form of treatment has been surgery.  He was NED from May 2011 – Feb 2013.  A scan found a met on his left lung, they went in, took it out and so far so good.  We have a CT next month and if all clear, he will be 1 year NED.

Hope that helps.  If you want to read his profile, see Robert H under Patient Stories.

Hope your husband remains NED for many many years to come 🙂

Julie

I was treated by surgery and gamma radiation during surgery. They removed the tumor from my sacrum and treated the area where the tumor was removed with Gamma radiation before closing me up. I have been NED for over 5-1/2 years now.

I was treated by surgery and gamma radiation during surgery. They removed the tumor from my sacrum and treated the area where the tumor was removed with Gamma radiation before closing me up. I have been NED for over 5-1/2 years now.

I was treated by surgery and gamma radiation during surgery. They removed the tumor from my sacrum and treated the area where the tumor was removed with Gamma radiation before closing me up. I have been NED for over 5-1/2 years now.

Beginning in December, 2007 I have had single mets to both lungs, brain and small intestine surgically removed and have been NED since January, 2010.  I was in a vaccine clinical trial in 2009 and have no way of knowing if it has a bearing on my NED status.  The met to the small intestine was discovered after I completed the trial – but it never showed up on any of the CT scans before and during the trail.  A falling iron count led to a PET scan that pinpointed the small met.  So it may have been there before I started the trial as I was told small mets in the small intestine can "hide" from CT scans.

Beginning in December, 2007 I have had single mets to both lungs, brain and small intestine surgically removed and have been NED since January, 2010.  I was in a vaccine clinical trial in 2009 and have no way of knowing if it has a bearing on my NED status.  The met to the small intestine was discovered after I completed the trial – but it never showed up on any of the CT scans before and during the trail.  A falling iron count led to a PET scan that pinpointed the small met.  So it may have been there before I started the trial as I was told small mets in the small intestine can "hide" from CT scans.

Beginning in December, 2007 I have had single mets to both lungs, brain and small intestine surgically removed and have been NED since January, 2010.  I was in a vaccine clinical trial in 2009 and have no way of knowing if it has a bearing on my NED status.  The met to the small intestine was discovered after I completed the trial – but it never showed up on any of the CT scans before and during the trail.  A falling iron count led to a PET scan that pinpointed the small met.  So it may have been there before I started the trial as I was told small mets in the small intestine can "hide" from CT scans.

Small lesion on back and postive sentinel node…both removed with complete axillary lymphadenectomy in 2003.  NED for 4  years...then,2007 – small lesion to left forearm, no positive nodes, but did complete lymphadenectomy anyway .  NED for 3 years…then, 2010 – lesion in lung, when bronch positive for melanoma, MRI found lesion in brain…SRS to brain, surgery to lung.  NED for 6 months….then, still 2010 – tonsil surgically removed, positive for melanoma.  Today….NED 3 years 3 months…but did complete NED, 2 1/2 year trial of Nivolumab in June 2013.  No systemic treatments before Nivo.  So….some people do very well with surgical 'cherry picking'.  Just keep up a routine of scans so nothing escapes your notice!!!  Wishing you all my best.  Celeste

Small lesion on back and postive sentinel node…both removed with complete axillary lymphadenectomy in 2003.  NED for 4  years...then,2007 – small lesion to left forearm, no positive nodes, but did complete lymphadenectomy anyway .  NED for 3 years…then, 2010 – lesion in lung, when bronch positive for melanoma, MRI found lesion in brain…SRS to brain, surgery to lung.  NED for 6 months….then, still 2010 – tonsil surgically removed, positive for melanoma.  Today….NED 3 years 3 months…but did complete NED, 2 1/2 year trial of Nivolumab in June 2013.  No systemic treatments before Nivo.  So….some people do very well with surgical 'cherry picking'.  Just keep up a routine of scans so nothing escapes your notice!!!  Wishing you all my best.  Celeste

Small lesion on back and postive sentinel node…both removed with complete axillary lymphadenectomy in 2003.  NED for 4  years...then,2007 – small lesion to left forearm, no positive nodes, but did complete lymphadenectomy anyway .  NED for 3 years…then, 2010 – lesion in lung, when bronch positive for melanoma, MRI found lesion in brain…SRS to brain, surgery to lung.  NED for 6 months….then, still 2010 – tonsil surgically removed, positive for melanoma.  Today….NED 3 years 3 months…but did complete NED, 2 1/2 year trial of Nivolumab in June 2013.  No systemic treatments before Nivo.  So….some people do very well with surgical 'cherry picking'.  Just keep up a routine of scans so nothing escapes your notice!!!  Wishing you all my best.  Celeste

Hi Jewel: I have been NED for 10.5 years, with only one month of hi-dose Interferon (had to quit after two weeks on low-dose) and 5 positive axillary nodes under left arm. Original site was mole on my upper left back. I have had some scares but non proved to be the melanoma coming back. Keep the faith. It DOES happen. I remain vigilant and have regular scans and bloodwork.

Hi Jewel: I have been NED for 10.5 years, with only one month of hi-dose Interferon (had to quit after two weeks on low-dose) and 5 positive axillary nodes under left arm. Original site was mole on my upper left back. I have had some scares but non proved to be the melanoma coming back. Keep the faith. It DOES happen. I remain vigilant and have regular scans and bloodwork.

Hi Jewel: I have been NED for 10.5 years, with only one month of hi-dose Interferon (had to quit after two weeks on low-dose) and 5 positive axillary nodes under left arm. Original site was mole on my upper left back. I have had some scares but non proved to be the melanoma coming back. Keep the faith. It DOES happen. I remain vigilant and have regular scans and bloodwork.