adjuvant therapy for stage 1b?

Forums General Melanoma Community adjuvant therapy for stage 1b?

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    kspfjsaf
    Participant

       

      My wife was just diagnosed a few weeks ago, and we had the wide area excision and SLNB last week.  I know we are so lucky to have everything come back negative.    The oncologist is saying that at this point the standard of care is just to come back every 3 months and he'll do an exam, feel the lymph nodes, ask how she's doing, and thats about it.   We just have to hope that she's not in the 10-20% where she gets hit with a stage 4 metastasis down the road.     He doesn't even want to think about doing a PET scan down the road because he says the chances of getting a false positive (and the resulting surgeries and complications from it) are too high.

      I guess we're just not feeling too happy about this course of action, although I understand from doing a lot of reading it does seem to be the norm.   Although the mitosis rate is 2, the depth was just barely over 1mm (1.12).  The SNLB tracer localization was supposed to be very strong, so the surgeon feels very good that we got the 3 lymph nodes that the cancer would have spread to.  

      Is it just crazy to try to push for some of the new drugs as adjuvant therapy (I know we'd have to pay out of pocket, yervoy is ~140k and the PD-1 inhibitors are more?).    But setting aside the monetary cost, the oncologist seemed to think that the toxicity risk of the new drugs outweighs any positive benefit we might get.  However I feel like it has to be a lot easier to nip any microtumors in the bud right now rather than wait until they are so large they will be caught be a physical exam.  Although I guess if your system/cancer reacts well to the new drugs, it will react when the tumor is large, and you don't necessarily need to try to get a jump on the process?

      Interferon doesn't seem like a great option at all (although it did work for my nephew at stage 3, 8 years disease free now!).   Neither are the vaccines from the data I've seen.

      Should I at least look at getting her to another melanoma center for a 2nd opinion and push for the PET scan in a few months? 

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        stars
        Participant

          Hi kspfjsaf

          From what I know, the treatment your wife has been given and the follow up are what's recommended for stage 1b (I am in Australia). It sounds like textbook treatment to me, any other intervention would be premature and possibly do more harm than good. I can't add much more than to say I'm pleased that the WLE and SLNB were clear, and for all intents and purposes your wife is now considered NED.  I've heard of much higher mitotic rates than 2 (though 0 is ideal…) and much deeper mels than 1.12. I'm hoping this is the end of your wife's brush with melanoma and that over time she just goes from strength to strength. That said, I'm all for 2nd opinions so going to another mel centre won't hurt.

          Stars

          stars
          Participant

            Hi kspfjsaf

            From what I know, the treatment your wife has been given and the follow up are what's recommended for stage 1b (I am in Australia). It sounds like textbook treatment to me, any other intervention would be premature and possibly do more harm than good. I can't add much more than to say I'm pleased that the WLE and SLNB were clear, and for all intents and purposes your wife is now considered NED.  I've heard of much higher mitotic rates than 2 (though 0 is ideal…) and much deeper mels than 1.12. I'm hoping this is the end of your wife's brush with melanoma and that over time she just goes from strength to strength. That said, I'm all for 2nd opinions so going to another mel centre won't hurt.

            Stars

            stars
            Participant

              Hi kspfjsaf

              From what I know, the treatment your wife has been given and the follow up are what's recommended for stage 1b (I am in Australia). It sounds like textbook treatment to me, any other intervention would be premature and possibly do more harm than good. I can't add much more than to say I'm pleased that the WLE and SLNB were clear, and for all intents and purposes your wife is now considered NED.  I've heard of much higher mitotic rates than 2 (though 0 is ideal…) and much deeper mels than 1.12. I'm hoping this is the end of your wife's brush with melanoma and that over time she just goes from strength to strength. That said, I'm all for 2nd opinions so going to another mel centre won't hurt.

              Stars

              Janner
              Participant

                The shock is real but the plan of action set out by your doc is realistic.  No insurance company will pay for any treatment or scans for stage 1b.  Truthfully, scans haven't been shown to increase survival rates and some institutions won't even do them for stage 3/4 unless you have symptoms.  PET scans are only so helpful because they don't pick up microscopic disease, only tumors of about 5mm and larger.  They also are prone to false positives.  All the new treatments are still experimental as adjuvant therapy and not  available outside a trial for stage 3 let alone stage 1b.  More isn't always better, some times it,just is more!  No melanoma center will do anything differently than what you described.  Remember, they see a lot of melanoma and know that the chances are good your wife won't deal with this again.  Also, the drug field is changing rapidly.  Doing treatments now may disqualify you later in clinical trials when it counts.  And less toxic drugs may be on the horizon.  Your wife is following the standard protocol for her stage.

                Best wishes,

                Janner

                stage 1b since 1992, 3 mm primaries

                Janner
                Participant

                  The shock is real but the plan of action set out by your doc is realistic.  No insurance company will pay for any treatment or scans for stage 1b.  Truthfully, scans haven't been shown to increase survival rates and some institutions won't even do them for stage 3/4 unless you have symptoms.  PET scans are only so helpful because they don't pick up microscopic disease, only tumors of about 5mm and larger.  They also are prone to false positives.  All the new treatments are still experimental as adjuvant therapy and not  available outside a trial for stage 3 let alone stage 1b.  More isn't always better, some times it,just is more!  No melanoma center will do anything differently than what you described.  Remember, they see a lot of melanoma and know that the chances are good your wife won't deal with this again.  Also, the drug field is changing rapidly.  Doing treatments now may disqualify you later in clinical trials when it counts.  And less toxic drugs may be on the horizon.  Your wife is following the standard protocol for her stage.

                  Best wishes,

                  Janner

                  stage 1b since 1992, 3 mm primaries

                  Janner
                  Participant

                    The shock is real but the plan of action set out by your doc is realistic.  No insurance company will pay for any treatment or scans for stage 1b.  Truthfully, scans haven't been shown to increase survival rates and some institutions won't even do them for stage 3/4 unless you have symptoms.  PET scans are only so helpful because they don't pick up microscopic disease, only tumors of about 5mm and larger.  They also are prone to false positives.  All the new treatments are still experimental as adjuvant therapy and not  available outside a trial for stage 3 let alone stage 1b.  More isn't always better, some times it,just is more!  No melanoma center will do anything differently than what you described.  Remember, they see a lot of melanoma and know that the chances are good your wife won't deal with this again.  Also, the drug field is changing rapidly.  Doing treatments now may disqualify you later in clinical trials when it counts.  And less toxic drugs may be on the horizon.  Your wife is following the standard protocol for her stage.

                    Best wishes,

                    Janner

                    stage 1b since 1992, 3 mm primaries

                    273c
                    Participant

                      Just wait… The stories I have read are, removed a skin met went on lived my life thought everything was fine and 6-10 years later found several internal mets. Then started something.

                       

                      In 6-10 years the technology is going to be much more advanced.  We seem to be on the edge of all sorts of things, like testing for PD-1.  Right now we are giving PD-1s to lots of people and it is working in less then half.  In the next couple years I think they will be able to test to see if a PD-1 will work before they give it.  There is also a vaccine that goes directly into the tumor in the works.  Definitely keep doing skin checks and keep asking the docs about scans (because that technology will advance also) but at this point wait and watch.  Vitamin D testing/supplements might be worth looking into if you want to do something proactive.

                      273c
                      Participant

                        Just wait… The stories I have read are, removed a skin met went on lived my life thought everything was fine and 6-10 years later found several internal mets. Then started something.

                         

                        In 6-10 years the technology is going to be much more advanced.  We seem to be on the edge of all sorts of things, like testing for PD-1.  Right now we are giving PD-1s to lots of people and it is working in less then half.  In the next couple years I think they will be able to test to see if a PD-1 will work before they give it.  There is also a vaccine that goes directly into the tumor in the works.  Definitely keep doing skin checks and keep asking the docs about scans (because that technology will advance also) but at this point wait and watch.  Vitamin D testing/supplements might be worth looking into if you want to do something proactive.

                        273c
                        Participant

                          Just wait… The stories I have read are, removed a skin met went on lived my life thought everything was fine and 6-10 years later found several internal mets. Then started something.

                           

                          In 6-10 years the technology is going to be much more advanced.  We seem to be on the edge of all sorts of things, like testing for PD-1.  Right now we are giving PD-1s to lots of people and it is working in less then half.  In the next couple years I think they will be able to test to see if a PD-1 will work before they give it.  There is also a vaccine that goes directly into the tumor in the works.  Definitely keep doing skin checks and keep asking the docs about scans (because that technology will advance also) but at this point wait and watch.  Vitamin D testing/supplements might be worth looking into if you want to do something proactive.

                          CHD
                          Participant

                            First I want to say that I do agree with the above.  What Janner said about sometimes more is not better, it's just more is very, very true, and it is something many of us faced with a cancer diagnosis will struggle with.

                            I will also say that my oncologist told me she has a stage I melanoma patient who comes in yearly for followup, for lymph node checks, blood work, and she pays for her own PET CTs out of pocket because it makes her feel better.  Insurance won't cover them so she does this on her own.  She is 10 years out and still free of recurrence.  This particular clinic offers greatly reduced rates on PET CTs to patients who choose to do this when insurance won't pay.  If you can find a clinic or can afford to pay for a PET CT and having negative results will be reassuring to you, why not?  Aside from the risk of false positive findings as your doctor pointed out, maybe it WILL make you both feel better.  And my feeling is that if it makes the two of you feel better, why not get a second opinion?  There IS some variability in followup plans even among melanoma specialists.

                            You can also ask where your wife's melanoma is most likely to metastasize (melanoma does tend to spread to certain locations based on the location of the primary), and ask if it is possible to have an xray done of that area every so often.  You can ask whether it would be worthwhile to check blood LDH levels periodically.  My understanding is that some specialists do this, others don't.

                            Good luck, and may your wife be one of the majority who go on to never have to deal with melanoma again.

                            CHD
                            Participant

                              First I want to say that I do agree with the above.  What Janner said about sometimes more is not better, it's just more is very, very true, and it is something many of us faced with a cancer diagnosis will struggle with.

                              I will also say that my oncologist told me she has a stage I melanoma patient who comes in yearly for followup, for lymph node checks, blood work, and she pays for her own PET CTs out of pocket because it makes her feel better.  Insurance won't cover them so she does this on her own.  She is 10 years out and still free of recurrence.  This particular clinic offers greatly reduced rates on PET CTs to patients who choose to do this when insurance won't pay.  If you can find a clinic or can afford to pay for a PET CT and having negative results will be reassuring to you, why not?  Aside from the risk of false positive findings as your doctor pointed out, maybe it WILL make you both feel better.  And my feeling is that if it makes the two of you feel better, why not get a second opinion?  There IS some variability in followup plans even among melanoma specialists.

                              You can also ask where your wife's melanoma is most likely to metastasize (melanoma does tend to spread to certain locations based on the location of the primary), and ask if it is possible to have an xray done of that area every so often.  You can ask whether it would be worthwhile to check blood LDH levels periodically.  My understanding is that some specialists do this, others don't.

                              Good luck, and may your wife be one of the majority who go on to never have to deal with melanoma again.

                              CHD
                              Participant

                                First I want to say that I do agree with the above.  What Janner said about sometimes more is not better, it's just more is very, very true, and it is something many of us faced with a cancer diagnosis will struggle with.

                                I will also say that my oncologist told me she has a stage I melanoma patient who comes in yearly for followup, for lymph node checks, blood work, and she pays for her own PET CTs out of pocket because it makes her feel better.  Insurance won't cover them so she does this on her own.  She is 10 years out and still free of recurrence.  This particular clinic offers greatly reduced rates on PET CTs to patients who choose to do this when insurance won't pay.  If you can find a clinic or can afford to pay for a PET CT and having negative results will be reassuring to you, why not?  Aside from the risk of false positive findings as your doctor pointed out, maybe it WILL make you both feel better.  And my feeling is that if it makes the two of you feel better, why not get a second opinion?  There IS some variability in followup plans even among melanoma specialists.

                                You can also ask where your wife's melanoma is most likely to metastasize (melanoma does tend to spread to certain locations based on the location of the primary), and ask if it is possible to have an xray done of that area every so often.  You can ask whether it would be worthwhile to check blood LDH levels periodically.  My understanding is that some specialists do this, others don't.

                                Good luck, and may your wife be one of the majority who go on to never have to deal with melanoma again.

                                DZnDef
                                Participant

                                  Your wife is in a very good situation.  If she wants to "do something", I would recommend doing all that she can to support her immune system.  It is said that cancer cannot exist if the immune system is functioning perfectly.  This early stage melanoma could be a warning that its time to take care of her overall health.  Adopt a healthy diet, exercise, reduce stress (really important as chronic stress suppresses the immune system).  Most of all, experience joy and laughter as much as possible.  Truly happy people have lower incidences of many illnesses and tend to live longer.  Doing these things will contribute greatly to quality of life and very much counts as "doing something" to avoid a recurrence.

                                  Cheers!

                                  Maggie

                                  DZnDef
                                  Participant

                                    Your wife is in a very good situation.  If she wants to "do something", I would recommend doing all that she can to support her immune system.  It is said that cancer cannot exist if the immune system is functioning perfectly.  This early stage melanoma could be a warning that its time to take care of her overall health.  Adopt a healthy diet, exercise, reduce stress (really important as chronic stress suppresses the immune system).  Most of all, experience joy and laughter as much as possible.  Truly happy people have lower incidences of many illnesses and tend to live longer.  Doing these things will contribute greatly to quality of life and very much counts as "doing something" to avoid a recurrence.

                                    Cheers!

                                    Maggie

                                    DZnDef
                                    Participant

                                      Your wife is in a very good situation.  If she wants to "do something", I would recommend doing all that she can to support her immune system.  It is said that cancer cannot exist if the immune system is functioning perfectly.  This early stage melanoma could be a warning that its time to take care of her overall health.  Adopt a healthy diet, exercise, reduce stress (really important as chronic stress suppresses the immune system).  Most of all, experience joy and laughter as much as possible.  Truly happy people have lower incidences of many illnesses and tend to live longer.  Doing these things will contribute greatly to quality of life and very much counts as "doing something" to avoid a recurrence.

                                      Cheers!

                                      Maggie

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