first pet scan results now what?

Sorry I can't give any advise on what direction to take for you.  My husband unfortunately went from excision to stage IV.,  I do wish you luck in whatever you decide to do.  This is a horrible disease.

Linda/Kentucky

Sorry I can't give any advise on what direction to take for you.  My husband unfortunately went from excision to stage IV.,  I do wish you luck in whatever you decide to do.  This is a horrible disease.

Linda/Kentucky

Sorry I can't give any advise on what direction to take for you.  My husband unfortunately went from excision to stage IV.,  I do wish you luck in whatever you decide to do.  This is a horrible disease.

Linda/Kentucky

Sorry I can't give any advise on what direction to take for you.  My husband unfortunately went from excision to stage IV.,  I do wish you luck in whatever you decide to do.  This is a horrible disease.

Linda/Kentucky

Hi Pat,

Even though your PET was good (YAY!) you still need the WLE & SNB because there could be micro-mets lurking.  The SNB's job is to look (in the most likely place) for those micro-mets too small for the PET scan to detect.  Your primary depth was nine mm?  Not 0.9?  If so, that's quite thick and your risk of recurrence is fairly high.

My thoughts on INF – it's doable, not that bad, IF you have good benefits at work.  I ended up needing the last 3 months of home injections off as disability because I was so severely fatigued I needed 12 hours of sleep and a nap every day.  INF appears to lengthen the time to recurrence, so you get more good time before you have to deal with this again.  I got 8 years, not a bad trade.

My thoughts on the Ipi trial – I'm not familair with the trial you're speaking of – it must be for fully resected, high risk individuals?  Compassionate use is available only with active disease if you have failed at least one prior conventional systemic therapy, so you would not qualify after surgery.  The presence of a placebo in the trial isn't as high of a risk in the case of a fully resected individual because you will be NED, so doing nothing (a placebo) is a valid, medically accepted option.  If you did get the placebo, you'd benefit from close monitoring of your status even without getting the drug.  And if you got the drug, well, you'd have a chance of trialing Ipi as an adjuvant instead of INF.  I can't express an opinion on what you should do; that's totally up to you.

Best wishes, so glad the PET was positive news.

KatyWI

Hi Pat,

Even though your PET was good (YAY!) you still need the WLE & SNB because there could be micro-mets lurking.  The SNB's job is to look (in the most likely place) for those micro-mets too small for the PET scan to detect.  Your primary depth was nine mm?  Not 0.9?  If so, that's quite thick and your risk of recurrence is fairly high.

My thoughts on INF – it's doable, not that bad, IF you have good benefits at work.  I ended up needing the last 3 months of home injections off as disability because I was so severely fatigued I needed 12 hours of sleep and a nap every day.  INF appears to lengthen the time to recurrence, so you get more good time before you have to deal with this again.  I got 8 years, not a bad trade.

My thoughts on the Ipi trial – I'm not familair with the trial you're speaking of – it must be for fully resected, high risk individuals?  Compassionate use is available only with active disease if you have failed at least one prior conventional systemic therapy, so you would not qualify after surgery.  The presence of a placebo in the trial isn't as high of a risk in the case of a fully resected individual because you will be NED, so doing nothing (a placebo) is a valid, medically accepted option.  If you did get the placebo, you'd benefit from close monitoring of your status even without getting the drug.  And if you got the drug, well, you'd have a chance of trialing Ipi as an adjuvant instead of INF.  I can't express an opinion on what you should do; that's totally up to you.

Best wishes, so glad the PET was positive news.

KatyWI

You will have to wait until after your surgery.

Ipilimumab clinical trials are out for you right now. Ipi compassionate use requires a failure of a systematic treatment and a current and measurable tumor. In regards to the other Ipi trial- Complete and adequate resection of Stage III melanoma with histologically confirmed melanoma metastatic to lymph node.

I recently saw a study that stated with Interferon there was no significant diference between the high dosage induction period followed by 11 month self injections and high dosage followed by three months of self injections.

I would not watch and wait. Your node biopsy will direct you which way to go.

You will have to wait until after your surgery.

Ipilimumab clinical trials are out for you right now. Ipi compassionate use requires a failure of a systematic treatment and a current and measurable tumor. In regards to the other Ipi trial- Complete and adequate resection of Stage III melanoma with histologically confirmed melanoma metastatic to lymph node.

I recently saw a study that stated with Interferon there was no significant diference between the high dosage induction period followed by 11 month self injections and high dosage followed by three months of self injections.

I would not watch and wait. Your node biopsy will direct you which way to go.

First off, recover from your surgery.  

When that is all done, the most important thing you can do is to be vigilant and go to all of your scans.  

If it were me, I would do the ipilimumab with a vaccine as in this trial which is available.

http://www.clinicaltrials.gov/ct2/show/NCT01082198?term=melanoma+vaccine&rank=9

Interferon has many side effects and has shown to increase time until recurrence, but not overall survival.  Therefore I would skip that option.

First off, recover from your surgery.  

When that is all done, the most important thing you can do is to be vigilant and go to all of your scans.  

If it were me, I would do the ipilimumab with a vaccine as in this trial which is available.

http://www.clinicaltrials.gov/ct2/show/NCT01082198?term=melanoma+vaccine&rank=9

Interferon has many side effects and has shown to increase time until recurrence, but not overall survival.  Therefore I would skip that option.

Pat,  I am assuming you are seeing a Melanoma sepcialist or you would not have been given these options.   9mm is deep.  I am stage 3a and chose to wait and watch,  since you are deeper and ulcerated if ipi is open to you go for it  (it wasn't for me)!  Personally for me I did not think interferon offered results good enoungh that made them worth comprimising my immune system.  But this is a very personal decision. 

On the good news side I found the surgery you are facing pretty easy.  Now, I suppose I was pretty lucky mine was on the waiste (I lost 2" belt size ) and the nodes in my arm pit were involved.  I hope your surgery goes as easily as mine, but you are clear!

Just a note: for compassionate use you must have tried other things, be stage IV and basically out of options.

Pat,  I am assuming you are seeing a Melanoma sepcialist or you would not have been given these options.   9mm is deep.  I am stage 3a and chose to wait and watch,  since you are deeper and ulcerated if ipi is open to you go for it  (it wasn't for me)!  Personally for me I did not think interferon offered results good enoungh that made them worth comprimising my immune system.  But this is a very personal decision. 

On the good news side I found the surgery you are facing pretty easy.  Now, I suppose I was pretty lucky mine was on the waiste (I lost 2" belt size ) and the nodes in my arm pit were involved.  I hope your surgery goes as easily as mine, but you are clear!

Just a note: for compassionate use you must have tried other things, be stage IV and basically out of options.