Scan fequency

Great question as I am in the same boat.

I was getting PET/CT and brain MRI annually.   After over 9 PET/CT's, multiple chest CT's, an abdominal CT (for appendicitis), chest x-rays……. lost count.  I am asking the same of my docs.

After a lung met & muscle met followed by VATS and 23 bags of IL-2, I was a complete responder and have been NED the summer of this year for 5 years.

Both surgical & medical onc. feel pretty confident I have a durable remission and will remain NED, dare I say the "C" word that will never be applied to me (cure).

Both want me followed by someone at least annually.  Wether or not that means any type of scans or bloodwork at this point?  No one has an answer.  Niether want to dismiss me and are in a gray area of what to do for follow up.

Kind of like when you were a kid and asked your mom for something and she said ask dad.  You ask dad and he says ask your mother…….

I have no problem forgoing scans at this point because I think I am glowing and don't want to start another cancer due to all the radiation exposure.  I was lucky to go from scans every 3 months the firs year out to every 4 months in year 2, and every 6 months for year 3, then annually until now.  My last scan was a year ago and I have my medical onc. visit next month.  I have been harping on them to try to stop scans.  I had no symptoms the entire time.  Unfortunately most don't do as well as we have, so the data on what to do with us is sparse.

I was stage 2A for 8 years then became stage IV.  Indolent melanoma or the cherry picking kind.  The last large IL-2 cohort follow up showed noone relapsed if a complete responder and made it past 30 months NED.  I am haning my hat on that statistic and seem to be following the same course.  I guess for me, if I had any other treatment I would be worried about a reoccurance.  Since I had IL-2 I am more confident I will die from old age or a stupid random accident.

Congrats!

Great question as I am in the same boat.

I was getting PET/CT and brain MRI annually.   After over 9 PET/CT's, multiple chest CT's, an abdominal CT (for appendicitis), chest x-rays……. lost count.  I am asking the same of my docs.

After a lung met & muscle met followed by VATS and 23 bags of IL-2, I was a complete responder and have been NED the summer of this year for 5 years.

Both surgical & medical onc. feel pretty confident I have a durable remission and will remain NED, dare I say the "C" word that will never be applied to me (cure).

Both want me followed by someone at least annually.  Wether or not that means any type of scans or bloodwork at this point?  No one has an answer.  Niether want to dismiss me and are in a gray area of what to do for follow up.

Kind of like when you were a kid and asked your mom for something and she said ask dad.  You ask dad and he says ask your mother…….

I have no problem forgoing scans at this point because I think I am glowing and don't want to start another cancer due to all the radiation exposure.  I was lucky to go from scans every 3 months the firs year out to every 4 months in year 2, and every 6 months for year 3, then annually until now.  My last scan was a year ago and I have my medical onc. visit next month.  I have been harping on them to try to stop scans.  I had no symptoms the entire time.  Unfortunately most don't do as well as we have, so the data on what to do with us is sparse.

I was stage 2A for 8 years then became stage IV.  Indolent melanoma or the cherry picking kind.  The last large IL-2 cohort follow up showed noone relapsed if a complete responder and made it past 30 months NED.  I am haning my hat on that statistic and seem to be following the same course.  I guess for me, if I had any other treatment I would be worried about a reoccurance.  Since I had IL-2 I am more confident I will die from old age or a stupid random accident.

Congrats!

Also concerned about cumulative radiation w PETs.  Husband has been getting every 6 mo & MRIs of neck every 3 mo. Asked to have PET only 1X/yr since no mets anywhere else & primary site unknown.  Tumor on cervical spinal cord continues idle (?shrinking) since resection 10/13 & radiation 2/14 & no symptom progression.  Began Keytruda 9/14.  Overly optimistic??  We're going on w Life, healthy eating, healthy activities, laughing a lot.  Get the best advice you can for your situation.  Good wishes.  A.L.

Also concerned about cumulative radiation w PETs.  Husband has been getting every 6 mo & MRIs of neck every 3 mo. Asked to have PET only 1X/yr since no mets anywhere else & primary site unknown.  Tumor on cervical spinal cord continues idle (?shrinking) since resection 10/13 & radiation 2/14 & no symptom progression.  Began Keytruda 9/14.  Overly optimistic??  We're going on w Life, healthy eating, healthy activities, laughing a lot.  Get the best advice you can for your situation.  Good wishes.  A.L.

Also concerned about cumulative radiation w PETs.  Husband has been getting every 6 mo & MRIs of neck every 3 mo. Asked to have PET only 1X/yr since no mets anywhere else & primary site unknown.  Tumor on cervical spinal cord continues idle (?shrinking) since resection 10/13 & radiation 2/14 & no symptom progression.  Began Keytruda 9/14.  Overly optimistic??  We're going on w Life, healthy eating, healthy activities, laughing a lot.  Get the best advice you can for your situation.  Good wishes.  A.L.

Great question as I am in the same boat.

I was getting PET/CT and brain MRI annually.   After over 9 PET/CT's, multiple chest CT's, an abdominal CT (for appendicitis), chest x-rays……. lost count.  I am asking the same of my docs.

After a lung met & muscle met followed by VATS and 23 bags of IL-2, I was a complete responder and have been NED the summer of this year for 5 years.

Both surgical & medical onc. feel pretty confident I have a durable remission and will remain NED, dare I say the "C" word that will never be applied to me (cure).

Both want me followed by someone at least annually.  Wether or not that means any type of scans or bloodwork at this point?  No one has an answer.  Niether want to dismiss me and are in a gray area of what to do for follow up.

Kind of like when you were a kid and asked your mom for something and she said ask dad.  You ask dad and he says ask your mother…….

I have no problem forgoing scans at this point because I think I am glowing and don't want to start another cancer due to all the radiation exposure.  I was lucky to go from scans every 3 months the firs year out to every 4 months in year 2, and every 6 months for year 3, then annually until now.  My last scan was a year ago and I have my medical onc. visit next month.  I have been harping on them to try to stop scans.  I had no symptoms the entire time.  Unfortunately most don't do as well as we have, so the data on what to do with us is sparse.

I was stage 2A for 8 years then became stage IV.  Indolent melanoma or the cherry picking kind.  The last large IL-2 cohort follow up showed noone relapsed if a complete responder and made it past 30 months NED.  I am haning my hat on that statistic and seem to be following the same course.  I guess for me, if I had any other treatment I would be worried about a reoccurance.  Since I had IL-2 I am more confident I will die from old age or a stupid random accident.

Congrats!