treatment of sub-qs

Hi –

I can't really answer your questions but found your story (at least for the orginal mel) very similiar to mine.  Had a round pink raised lesion on my upper right back that my regular GP said was nothing.  In Sept of 2010 it started to grow like crazy.  Ended up being Nodular Mel (4.5 mm, 15 miotic rate, sentinel lymph node positive, no other nodes involved).  All done Oct/Nov 2010.   I did end up having mets in my lungs though – caught in a CT scan by Sloan Jan 2011 when they tried to get me in an ipi trial.

Good news is that I've been NED for almost a year now.  Tomorrow is the 1 year mark that I found out mel was in my lungs.  While trying to get in BRAF trial I had to wait several weeks.  By the time they scanned me in April and then again in May 2011 all the spots in my lungs had gone away.  I'm doing a watch and wait also.  Get check ups every 3 months.  I'm surprised that a scan wouldn't have picked that up in Nov?  Positive thoughts and prayers your way!

Erin

Hi –

I can't really answer your questions but found your story (at least for the orginal mel) very similiar to mine.  Had a round pink raised lesion on my upper right back that my regular GP said was nothing.  In Sept of 2010 it started to grow like crazy.  Ended up being Nodular Mel (4.5 mm, 15 miotic rate, sentinel lymph node positive, no other nodes involved).  All done Oct/Nov 2010.   I did end up having mets in my lungs though – caught in a CT scan by Sloan Jan 2011 when they tried to get me in an ipi trial.

Good news is that I've been NED for almost a year now.  Tomorrow is the 1 year mark that I found out mel was in my lungs.  While trying to get in BRAF trial I had to wait several weeks.  By the time they scanned me in April and then again in May 2011 all the spots in my lungs had gone away.  I'm doing a watch and wait also.  Get check ups every 3 months.  I'm surprised that a scan wouldn't have picked that up in Nov?  Positive thoughts and prayers your way!

Erin

Hi –

I can't really answer your questions but found your story (at least for the orginal mel) very similiar to mine.  Had a round pink raised lesion on my upper right back that my regular GP said was nothing.  In Sept of 2010 it started to grow like crazy.  Ended up being Nodular Mel (4.5 mm, 15 miotic rate, sentinel lymph node positive, no other nodes involved).  All done Oct/Nov 2010.   I did end up having mets in my lungs though – caught in a CT scan by Sloan Jan 2011 when they tried to get me in an ipi trial.

Good news is that I've been NED for almost a year now.  Tomorrow is the 1 year mark that I found out mel was in my lungs.  While trying to get in BRAF trial I had to wait several weeks.  By the time they scanned me in April and then again in May 2011 all the spots in my lungs had gone away.  I'm doing a watch and wait also.  Get check ups every 3 months.  I'm surprised that a scan wouldn't have picked that up in Nov?  Positive thoughts and prayers your way!

Erin

This is all too familiar.  After being NED for 8 years, in 2009,  I had a small nodule show up in my neck (primary was in my right thigh with no lymph nodes ever being involved).  They excised the neck nodule +melanoma and PET negative.  Watch and wait.  A year later, another small neck nodule, + melanoma – cut it out.  Wait.  6 months later, PET shows 2 new SC nodules and a lung nodule and a spot on my femur. 

If I could go back to that first lesion in 2009 when I was NED I think I'd be looking for some type of treatment.  I think there are trials out there for people who've had metastatic lesions and are now NED getting Anti-PD1, maybe ipi….. I would be talking to the big melanoma centers to get multiple opinions. 

After reading many peoples bios on this message board it seems many have been through much the same scenario.  Best of luck to you!  I hope you can remain NED forever – you just might need a little help. 

This is all too familiar.  After being NED for 8 years, in 2009,  I had a small nodule show up in my neck (primary was in my right thigh with no lymph nodes ever being involved).  They excised the neck nodule +melanoma and PET negative.  Watch and wait.  A year later, another small neck nodule, + melanoma – cut it out.  Wait.  6 months later, PET shows 2 new SC nodules and a lung nodule and a spot on my femur. 

If I could go back to that first lesion in 2009 when I was NED I think I'd be looking for some type of treatment.  I think there are trials out there for people who've had metastatic lesions and are now NED getting Anti-PD1, maybe ipi….. I would be talking to the big melanoma centers to get multiple opinions. 

After reading many peoples bios on this message board it seems many have been through much the same scenario.  Best of luck to you!  I hope you can remain NED forever – you just might need a little help. 

This is all too familiar.  After being NED for 8 years, in 2009,  I had a small nodule show up in my neck (primary was in my right thigh with no lymph nodes ever being involved).  They excised the neck nodule +melanoma and PET negative.  Watch and wait.  A year later, another small neck nodule, + melanoma – cut it out.  Wait.  6 months later, PET shows 2 new SC nodules and a lung nodule and a spot on my femur. 

If I could go back to that first lesion in 2009 when I was NED I think I'd be looking for some type of treatment.  I think there are trials out there for people who've had metastatic lesions and are now NED getting Anti-PD1, maybe ipi….. I would be talking to the big melanoma centers to get multiple opinions. 

After reading many peoples bios on this message board it seems many have been through much the same scenario.  Best of luck to you!  I hope you can remain NED forever – you just might need a little help. 

Lear,

I hate to hear that this has come back……  IF, this is within the node region, and not deep within the area (that is what had changed my staging in 06) it would be thought of as an intransit which would make you 3B. At least that's my thinking. 

If this can be surgically removed and the rest of you are clear you most likely will continue "watch and wait".  If you have not done interfuron or Yervoy yet there might be a trial in your area in Delaware but that would be your decision. 

Lot's of stress right now but gather all of the information first.  For me in the past I've had 1 tumor show up at a time and surgically has worked the best for me, saving something systemically if needed in the future.

Linda

Lear,

I hate to hear that this has come back……  IF, this is within the node region, and not deep within the area (that is what had changed my staging in 06) it would be thought of as an intransit which would make you 3B. At least that's my thinking. 

If this can be surgically removed and the rest of you are clear you most likely will continue "watch and wait".  If you have not done interfuron or Yervoy yet there might be a trial in your area in Delaware but that would be your decision. 

Lot's of stress right now but gather all of the information first.  For me in the past I've had 1 tumor show up at a time and surgically has worked the best for me, saving something systemically if needed in the future.

Linda

Lear,

I hate to hear that this has come back……  IF, this is within the node region, and not deep within the area (that is what had changed my staging in 06) it would be thought of as an intransit which would make you 3B. At least that's my thinking. 

If this can be surgically removed and the rest of you are clear you most likely will continue "watch and wait".  If you have not done interfuron or Yervoy yet there might be a trial in your area in Delaware but that would be your decision. 

Lot's of stress right now but gather all of the information first.  For me in the past I've had 1 tumor show up at a time and surgically has worked the best for me, saving something systemically if needed in the future.

Linda