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first pet scan results now what?

Forums General Melanoma Community first pet scan results now what?

  • Post
    makedoandmend
    Participant

      I posted a few weeks back about just being diagnosed.  I had an ulcerated primary on my calf at a breslow depth of 9mm and satelitte lesion beneath/next to the primary.  Pet Scan came back NED or "unremarkable" as it says in the report.   So that leaves me a stage 3 with a surgery on October 4th where they will do a sentinal node biospy and wide incision.  My onc gave me three options.

      I posted a few weeks back about just being diagnosed.  I had an ulcerated primary on my calf at a breslow depth of 9mm and satelitte lesion beneath/next to the primary.  Pet Scan came back NED or "unremarkable" as it says in the report.   So that leaves me a stage 3 with a surgery on October 4th where they will do a sentinal node biospy and wide incision.  My onc gave me three options. 1) watch and wait 2) high dose interferron followed by the home injections 3) stage three ipilimumab clinical trial (he says the trial will have a placebo, but what about compassionate use?  So my question is what are the positives and negatives of 2 and 3.  Do I even need treatment?  The nodes in my groin are ned so I don't know if I need treatment. On the other hand the primary was very deep and ulcerated which leaves me with some bad percentages.  Also I'm thinking that melanoma is easier to fight at stage 3. Why not start the battle now rather than waiting till its at stage iv.   Any insight would be much appreciated. I've learned a lot over the last few weeks, hopefully I can contribute more on the board.  The strength and knowledge I've gotten from this board is invaluable. Thanks!
      -pat on long island

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    • Replies
        Linda/Kentucky
        Participant

          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

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          Linda/Kentucky
          Participant

            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

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            Linda/Kentucky
            Participant

              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

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              Linda/Kentucky
              Participant

                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

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                KatyWI
                Participant

                  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

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                  KatyWI
                  Participant

                    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

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                    Kevin from Atlanta
                    Participant

                      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.

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                      Kevin from Atlanta
                      Participant

                        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.

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                        jag
                        Participant

                          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.

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                            jag
                            Participant

                              Sorry Pat, I have never done interferon, and my data was inaccurate.

                              Here is a study to show the actual numbers for interferon vs. vaccine.

                              http://jco.ascopubs.org/content/19/9/2370.full

                              If it were me, I would still choose the IPI w/vaccine trial.

                              Best 

                              John 

                               

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                              jag
                              Participant

                                Sorry Pat, I have never done interferon, and my data was inaccurate.

                                Here is a study to show the actual numbers for interferon vs. vaccine.

                                http://jco.ascopubs.org/content/19/9/2370.full

                                If it were me, I would still choose the IPI w/vaccine trial.

                                Best 

                                John 

                                 

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                              jag
                              Participant

                                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.

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                                washoegal
                                Participant

                                  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 cheeky) 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.

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                                    makedoandmend
                                    Participant

                                      wow thanks guys. I really appreciate everyones responses.  There is so much knowledge and support on this board it is amazing. When I was meeting with my oncologist he asked me "how do you know so much about this disease"  I said MPIP.org of course!  That board has given me every bit of ammunition I have.  I then noticed him jot down the web address! haha.  I am really gratefull for how much I have learned in a short period of time from you guys.  If the sential node biopsy confirms stage 3  I am thinking about going with the adjuvant ipi stage 3 trial and also be agressive with the scans.  The fact that it was 9mm and ulcerated obviously means that there is a high chance I will be stage IV at some point.  I am thinking that it is better to start the fight at stage three than stage iv.  I guess for now I can just wait until the surgery is completed and I am healed up to decide what to do.  I know there are some positive results from high dose interferron but I don't know if I can deal with those side affects for so long. Of course ipee has its own set of side effects but they seem to be controlable with steroids.  I did hear that two people died from ipee side effects ( i believe they were stage iv and weren't being treated with steroids).   Also it hasn't been approved by the FDA so who knows what the long term side effects are.  And who knows if ipee even helps at stage 3. I mean it seems like results would be hard to track.  Thanks guys!
                                      -pat on long island

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                                      makedoandmend
                                      Participant

                                        wow thanks guys. I really appreciate everyones responses.  There is so much knowledge and support on this board it is amazing. When I was meeting with my oncologist he asked me "how do you know so much about this disease"  I said MPIP.org of course!  That board has given me every bit of ammunition I have.  I then noticed him jot down the web address! haha.  I am really gratefull for how much I have learned in a short period of time from you guys.  If the sential node biopsy confirms stage 3  I am thinking about going with the adjuvant ipi stage 3 trial and also be agressive with the scans.  The fact that it was 9mm and ulcerated obviously means that there is a high chance I will be stage IV at some point.  I am thinking that it is better to start the fight at stage three than stage iv.  I guess for now I can just wait until the surgery is completed and I am healed up to decide what to do.  I know there are some positive results from high dose interferron but I don't know if I can deal with those side affects for so long. Of course ipee has its own set of side effects but they seem to be controlable with steroids.  I did hear that two people died from ipee side effects ( i believe they were stage iv and weren't being treated with steroids).   Also it hasn't been approved by the FDA so who knows what the long term side effects are.  And who knows if ipee even helps at stage 3. I mean it seems like results would be hard to track.  Thanks guys!
                                        -pat on long island

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                                      washoegal
                                      Participant

                                        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 cheeky) 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.

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