No clue how to proceed
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No clue how to proceed

› Forums › General Melanoma Community › No clue how to proceed

  • Post
    • March 31, 2016 at 3:48 am
    Bobman
    Participant

    I will have the sutures  removed this Monday  from primaries  8,and 9. Primary  number  7 was just a few weeks  earlier .  In the meantime,  I have several  new lesions  popping  up all over. Forehead , neck,back,legs,and abdomen . They all look as funky as can be…a few dark as coal. Even among my sea of a typicals the new ones stand out. I saw my primary  care nurse practitioner  on Monday ,who helps with biopsies  between  visits to the dermatologist .  I told her I  am now experiencing  fatigue  like I have never known .  She asked me what the oncologist  wanted to do,and I explained  that he said nothing  he could  offer until I reached  a different  stage. He did send me for a pet/CT scan  a couple  of years  ago when I was on about my 4th,or 5th primary , combined  at that time, with put me on the floor pelvic bowl  pain. I lit up both scans in exactly  the same area  of my pain. Was scoped front and back,with nothing  found,and in general  have only experienced  that same pain a few times since. She suggested  another  pet scan now.

    I am totally  confused  as what to do here. Technically  I  am still stage 1,but something  is definitely  going on. I've  only  been  on this road for 5 ,or 6 years  now but the changes  on my body  are speeding  up. If I had Mets to anywhere  would  I  still  be throwing  out all these InSitu , and stage 1 lesions ?  My surgeon  actually  said to me after primary  number  7 that I was a ticking  time bomb. I actually  appreciated  the comment , as it seemed  real,and mirrored my thinking . Then a week  later we were  at it again , and most  likely  it's going  to be repeated  in a couple  of  weeks . …..wtf ?

    Appreciate  any thoughts  on this you all may have.

    Aloha , 

    Bob

Viewing 11 reply threads
  • Replies
      • March 31, 2016 at 7:56 am
      stars
      Participant

      Bob – I'm at a loss, but looked at the best source I could find – the only possibilities I see are a) just plain bad luck, multiple primary melanomas, luckily in situ, or b) epidermatrophic metastatic melanoma, which frankly I have never heard of until I looked at this source. Definition: Epidermotropic metastatic melanoma is rare. In this case, the metastases develop more superficially than usual, within the epidermis. Epidermotropic metastatic melanoma is often initially misdiagnosed as primary melanoma. The diagnosis of epidermotropic metastatic melanoma should be considered if multiple lesions arise with similar pathology. Source:

      https://www.melanoma.org/comment/reply/31717#comment-form

      This might be something to query with your doc – it's very rare, apparently, but if your lesions have the same pathology (whatever that means), it might be worth looking into. If for no other reason than to strike it off the list of possibilities. It's not right that you are in the dark like this, you need some certainty.

      • March 31, 2016 at 7:56 am
      stars
      Participant

      Bob – I'm at a loss, but looked at the best source I could find – the only possibilities I see are a) just plain bad luck, multiple primary melanomas, luckily in situ, or b) epidermatrophic metastatic melanoma, which frankly I have never heard of until I looked at this source. Definition: Epidermotropic metastatic melanoma is rare. In this case, the metastases develop more superficially than usual, within the epidermis. Epidermotropic metastatic melanoma is often initially misdiagnosed as primary melanoma. The diagnosis of epidermotropic metastatic melanoma should be considered if multiple lesions arise with similar pathology. Source:

      https://www.melanoma.org/comment/reply/31717#comment-form

      This might be something to query with your doc – it's very rare, apparently, but if your lesions have the same pathology (whatever that means), it might be worth looking into. If for no other reason than to strike it off the list of possibilities. It's not right that you are in the dark like this, you need some certainty.

      • March 31, 2016 at 7:56 am
      stars
      Participant

      Bob – I'm at a loss, but looked at the best source I could find – the only possibilities I see are a) just plain bad luck, multiple primary melanomas, luckily in situ, or b) epidermatrophic metastatic melanoma, which frankly I have never heard of until I looked at this source. Definition: Epidermotropic metastatic melanoma is rare. In this case, the metastases develop more superficially than usual, within the epidermis. Epidermotropic metastatic melanoma is often initially misdiagnosed as primary melanoma. The diagnosis of epidermotropic metastatic melanoma should be considered if multiple lesions arise with similar pathology. Source:

      https://www.melanoma.org/comment/reply/31717#comment-form

      This might be something to query with your doc – it's very rare, apparently, but if your lesions have the same pathology (whatever that means), it might be worth looking into. If for no other reason than to strike it off the list of possibilities. It's not right that you are in the dark like this, you need some certainty.

      • March 31, 2016 at 12:04 pm
      JuTMSY4
      Participant

      Hi Bob,

      Your situation sounds very difficult and I'm sorry you have to deal with it.

      It sounds to me like you're in insurance "hell."  I'm not sure where your located, but your language suggests the USA – so I'll assume that.

      Your problem is your treatment options are hamstrung by the insurance protocols.  Similar would be true in countries with national systems.  In either case, as you probably recognize, protocols don't provide for treatments at stage 1 or 2 (really).  I suppose if a doctor was okay with it, you could pay to have certain more advanced protocols.  The world we operate in, with many issues, is just not designed for people like you.  And as much as a cure for cancer or melanoma, or whatever, would be great, the reality is, we certainly should also focus on people like you, who may be a "timebomb," but that we could do something about.

      What you may want to look into are potential trials or see of your doctor would allow an off-label use.  As someone mentioned above, if all the melanomas are of a similar path, you really might qualify for a lot more treatment than is apparent on its face.

      My biggest advice though, is to be aggressive.  It sucks, but while your hamstrung on on level, you have some time to really investigate and look for options.

      Best of luck

      -Justin

        • April 1, 2016 at 8:46 am
        Bobman
        Participant

        Yes Justin ,  I live on the big island  of Hawaii . Learning  to navigate  the system  is at times as challenging  as the disease  itself  for me. I take your  advice  to heart,and thank  you  for your words,and encouragement  to go full steam ahead . ..which is exactly  what I  plan on doing . 

        Aloha , 

        Bob  

        • April 1, 2016 at 8:46 am
        Bobman
        Participant

        Yes Justin ,  I live on the big island  of Hawaii . Learning  to navigate  the system  is at times as challenging  as the disease  itself  for me. I take your  advice  to heart,and thank  you  for your words,and encouragement  to go full steam ahead . ..which is exactly  what I  plan on doing . 

        Aloha , 

        Bob  

        • April 1, 2016 at 8:46 am
        Bobman
        Participant

        Yes Justin ,  I live on the big island  of Hawaii . Learning  to navigate  the system  is at times as challenging  as the disease  itself  for me. I take your  advice  to heart,and thank  you  for your words,and encouragement  to go full steam ahead . ..which is exactly  what I  plan on doing . 

        Aloha , 

        Bob  

      • March 31, 2016 at 12:04 pm
      JuTMSY4
      Participant

      Hi Bob,

      Your situation sounds very difficult and I'm sorry you have to deal with it.

      It sounds to me like you're in insurance "hell."  I'm not sure where your located, but your language suggests the USA – so I'll assume that.

      Your problem is your treatment options are hamstrung by the insurance protocols.  Similar would be true in countries with national systems.  In either case, as you probably recognize, protocols don't provide for treatments at stage 1 or 2 (really).  I suppose if a doctor was okay with it, you could pay to have certain more advanced protocols.  The world we operate in, with many issues, is just not designed for people like you.  And as much as a cure for cancer or melanoma, or whatever, would be great, the reality is, we certainly should also focus on people like you, who may be a "timebomb," but that we could do something about.

      What you may want to look into are potential trials or see of your doctor would allow an off-label use.  As someone mentioned above, if all the melanomas are of a similar path, you really might qualify for a lot more treatment than is apparent on its face.

      My biggest advice though, is to be aggressive.  It sucks, but while your hamstrung on on level, you have some time to really investigate and look for options.

      Best of luck

      -Justin

      • March 31, 2016 at 12:04 pm
      JuTMSY4
      Participant

      Hi Bob,

      Your situation sounds very difficult and I'm sorry you have to deal with it.

      It sounds to me like you're in insurance "hell."  I'm not sure where your located, but your language suggests the USA – so I'll assume that.

      Your problem is your treatment options are hamstrung by the insurance protocols.  Similar would be true in countries with national systems.  In either case, as you probably recognize, protocols don't provide for treatments at stage 1 or 2 (really).  I suppose if a doctor was okay with it, you could pay to have certain more advanced protocols.  The world we operate in, with many issues, is just not designed for people like you.  And as much as a cure for cancer or melanoma, or whatever, would be great, the reality is, we certainly should also focus on people like you, who may be a "timebomb," but that we could do something about.

      What you may want to look into are potential trials or see of your doctor would allow an off-label use.  As someone mentioned above, if all the melanomas are of a similar path, you really might qualify for a lot more treatment than is apparent on its face.

      My biggest advice though, is to be aggressive.  It sucks, but while your hamstrung on on level, you have some time to really investigate and look for options.

      Best of luck

      -Justin

      • March 31, 2016 at 1:03 pm
      Janner
      Participant

      Hey Bob!  Dang.  Lost my original post so this is a little shorter.

      This sucks, but people with DNS are much more likely to have multiple primaries than others.  Didn't read the other article but I'm not sure you can chock this up to anything else but DNS.  Yes, you could have something else going on with the fatigue.  Depression jumps to mind first, and I can't imagine anyone not being depressed going through what is happening to you.  But there also may be benign things.  I had been so fatigued recently that I asked my derm to do a blood test looking for a cause (no insurance between jobs) and I was immediately admitted to the hospital.  I was critically anemic.  CT revealed no melanoma mets but that was the elephant in the room until ruled out.  I don't see anyone offering adjuvant therapy except possibly Interferon and even that is extremely unlikely.  But Interferon doesn't have great numbers.  I don't see someone offering the newer drugs.  Mainly, these drugs are geared for for systemic control of disease and may have zero effect on new primaries.  Just thinking out loud here but I'm not sure what else to suggest.  PET is a good start but I might also prefer a CT with its better resolution.  Let us know if you get any more input from the medical community – sorry I really can't think of anything constructive to add to your plight.  Maybe you could ask for a phone consult from one of the melanoma guys at UCSF? 

      Janner

      • March 31, 2016 at 1:03 pm
      Janner
      Participant

      Hey Bob!  Dang.  Lost my original post so this is a little shorter.

      This sucks, but people with DNS are much more likely to have multiple primaries than others.  Didn't read the other article but I'm not sure you can chock this up to anything else but DNS.  Yes, you could have something else going on with the fatigue.  Depression jumps to mind first, and I can't imagine anyone not being depressed going through what is happening to you.  But there also may be benign things.  I had been so fatigued recently that I asked my derm to do a blood test looking for a cause (no insurance between jobs) and I was immediately admitted to the hospital.  I was critically anemic.  CT revealed no melanoma mets but that was the elephant in the room until ruled out.  I don't see anyone offering adjuvant therapy except possibly Interferon and even that is extremely unlikely.  But Interferon doesn't have great numbers.  I don't see someone offering the newer drugs.  Mainly, these drugs are geared for for systemic control of disease and may have zero effect on new primaries.  Just thinking out loud here but I'm not sure what else to suggest.  PET is a good start but I might also prefer a CT with its better resolution.  Let us know if you get any more input from the medical community – sorry I really can't think of anything constructive to add to your plight.  Maybe you could ask for a phone consult from one of the melanoma guys at UCSF? 

      Janner

        • April 1, 2016 at 8:36 am
        Bobman
        Participant

        Yeah  Janner, I  am definitely  depressed  and have been  for some time,which is not all that unusual  for me under normal  circumstances . The fatigue  I've  been experiencing  for many months  now is out of the realm of what I would  consider  normal  for me. Even sitting  up straight  does not come easy,which is something  that is relatively  new for me . The energy  I use to maintain  a good  posture while sitting , or driving  etc.,drains me on a scale that's  different  from my "normal  " depression .  Enough  so that I question  what is the cause. So many changes  I am noticing  has thrown  me for a loop. I have tried  medication  in the past,but I am one of those  that gets all the side effects , without  enough  benefits  to justify  continuing  the meds.

        Thanks  as always  for the support , and all you do for everyone  here.

        Aloha , 

        Bob  

        • April 1, 2016 at 8:36 am
        Bobman
        Participant

        Yeah  Janner, I  am definitely  depressed  and have been  for some time,which is not all that unusual  for me under normal  circumstances . The fatigue  I've  been experiencing  for many months  now is out of the realm of what I would  consider  normal  for me. Even sitting  up straight  does not come easy,which is something  that is relatively  new for me . The energy  I use to maintain  a good  posture while sitting , or driving  etc.,drains me on a scale that's  different  from my "normal  " depression .  Enough  so that I question  what is the cause. So many changes  I am noticing  has thrown  me for a loop. I have tried  medication  in the past,but I am one of those  that gets all the side effects , without  enough  benefits  to justify  continuing  the meds.

        Thanks  as always  for the support , and all you do for everyone  here.

        Aloha , 

        Bob  

        • April 1, 2016 at 8:36 am
        Bobman
        Participant

        Yeah  Janner, I  am definitely  depressed  and have been  for some time,which is not all that unusual  for me under normal  circumstances . The fatigue  I've  been experiencing  for many months  now is out of the realm of what I would  consider  normal  for me. Even sitting  up straight  does not come easy,which is something  that is relatively  new for me . The energy  I use to maintain  a good  posture while sitting , or driving  etc.,drains me on a scale that's  different  from my "normal  " depression .  Enough  so that I question  what is the cause. So many changes  I am noticing  has thrown  me for a loop. I have tried  medication  in the past,but I am one of those  that gets all the side effects , without  enough  benefits  to justify  continuing  the meds.

        Thanks  as always  for the support , and all you do for everyone  here.

        Aloha , 

        Bob  

      • March 31, 2016 at 1:03 pm
      Janner
      Participant

      Hey Bob!  Dang.  Lost my original post so this is a little shorter.

      This sucks, but people with DNS are much more likely to have multiple primaries than others.  Didn't read the other article but I'm not sure you can chock this up to anything else but DNS.  Yes, you could have something else going on with the fatigue.  Depression jumps to mind first, and I can't imagine anyone not being depressed going through what is happening to you.  But there also may be benign things.  I had been so fatigued recently that I asked my derm to do a blood test looking for a cause (no insurance between jobs) and I was immediately admitted to the hospital.  I was critically anemic.  CT revealed no melanoma mets but that was the elephant in the room until ruled out.  I don't see anyone offering adjuvant therapy except possibly Interferon and even that is extremely unlikely.  But Interferon doesn't have great numbers.  I don't see someone offering the newer drugs.  Mainly, these drugs are geared for for systemic control of disease and may have zero effect on new primaries.  Just thinking out loud here but I'm not sure what else to suggest.  PET is a good start but I might also prefer a CT with its better resolution.  Let us know if you get any more input from the medical community – sorry I really can't think of anything constructive to add to your plight.  Maybe you could ask for a phone consult from one of the melanoma guys at UCSF? 

      Janner

      • April 1, 2016 at 3:07 am
      DZnDef
      Participant

      I googled the information Anonymous provided and found this

      http://www.ncbi.nlm.nih.gov/pubmed/7943535

      It is certainly possible that you have this.  In which case a PET/CT combination would be a really good idea to rule out internal metastasis.

      If you do have this version of the disease, some of your skin lesions would be defined as metastasis and you would likely qualify for the newest drugs.

      • April 1, 2016 at 3:07 am
      DZnDef
      Participant

      I googled the information Anonymous provided and found this

      http://www.ncbi.nlm.nih.gov/pubmed/7943535

      It is certainly possible that you have this.  In which case a PET/CT combination would be a really good idea to rule out internal metastasis.

      If you do have this version of the disease, some of your skin lesions would be defined as metastasis and you would likely qualify for the newest drugs.

        • April 1, 2016 at 7:54 am
        stars
        Participant

        Just realised I posted the wrong link. Here's my source on epidermatropic metastatic melanoma:

        http://www.dermnetnz.org/lesions/metastatic-melanoma.html

        It's mentioned in a tiny paragraph under heading 'cutaneous metastatic melanoma'.

        I'd just like Bob to be able to get to the bottom of his troubles, and this is one option to consider and hopefully dismiss as not applying to him. .

        • April 1, 2016 at 7:54 am
        stars
        Participant

        Just realised I posted the wrong link. Here's my source on epidermatropic metastatic melanoma:

        http://www.dermnetnz.org/lesions/metastatic-melanoma.html

        It's mentioned in a tiny paragraph under heading 'cutaneous metastatic melanoma'.

        I'd just like Bob to be able to get to the bottom of his troubles, and this is one option to consider and hopefully dismiss as not applying to him. .

        • April 1, 2016 at 8:19 am
        Bobman
        Participant

        I really  appreciate  the information  on this. I certainly  never heard of this either , and spent  several  hours  after your  original  post researching  it. I will  go over every  pathology  report  with my team and try to eliminate  this as a possibility . I definitely  fit into  the defining  criteria  to look at this closer. My last 5 lesions  have been InSitu , which from everything  I read last night,and tonight , suggest  that that alone as being worthy  of being  suspicious  of this as a cause.

        Many thanks  

        Bob

        • April 1, 2016 at 8:19 am
        Bobman
        Participant

        I really  appreciate  the information  on this. I certainly  never heard of this either , and spent  several  hours  after your  original  post researching  it. I will  go over every  pathology  report  with my team and try to eliminate  this as a possibility . I definitely  fit into  the defining  criteria  to look at this closer. My last 5 lesions  have been InSitu , which from everything  I read last night,and tonight , suggest  that that alone as being worthy  of being  suspicious  of this as a cause.

        Many thanks  

        Bob

        • April 1, 2016 at 8:19 am
        Bobman
        Participant

        I really  appreciate  the information  on this. I certainly  never heard of this either , and spent  several  hours  after your  original  post researching  it. I will  go over every  pathology  report  with my team and try to eliminate  this as a possibility . I definitely  fit into  the defining  criteria  to look at this closer. My last 5 lesions  have been InSitu , which from everything  I read last night,and tonight , suggest  that that alone as being worthy  of being  suspicious  of this as a cause.

        Many thanks  

        Bob

        • April 1, 2016 at 7:54 am
        stars
        Participant

        Just realised I posted the wrong link. Here's my source on epidermatropic metastatic melanoma:

        http://www.dermnetnz.org/lesions/metastatic-melanoma.html

        It's mentioned in a tiny paragraph under heading 'cutaneous metastatic melanoma'.

        I'd just like Bob to be able to get to the bottom of his troubles, and this is one option to consider and hopefully dismiss as not applying to him. .

        • April 1, 2016 at 8:57 am
        Bobman
        Participant

        Hi Maggie. I also Googled the same thing last night on what anonymous  posted. In much of what I found , it read like a description  of what I am experiencing . I will move forward  with the scans to start ruling out things. 

        Thanks  a lot   for the post,and I do  hope you are doing , and feeling  well ! 

        Aloha , 

        Bob  

        • April 1, 2016 at 8:57 am
        Bobman
        Participant

        Hi Maggie. I also Googled the same thing last night on what anonymous  posted. In much of what I found , it read like a description  of what I am experiencing . I will move forward  with the scans to start ruling out things. 

        Thanks  a lot   for the post,and I do  hope you are doing , and feeling  well ! 

        Aloha , 

        Bob  

        • April 1, 2016 at 8:57 am
        Bobman
        Participant

        Hi Maggie. I also Googled the same thing last night on what anonymous  posted. In much of what I found , it read like a description  of what I am experiencing . I will move forward  with the scans to start ruling out things. 

        Thanks  a lot   for the post,and I do  hope you are doing , and feeling  well ! 

        Aloha , 

        Bob  

        • April 3, 2016 at 4:44 pm
        Cathy M
        Participant
        Definitely get the scan. My husband has been stage 4 since 11/2013 first just right lung. Dermatologist removed a small red spot next to his nose,a lump area from same area and one black spot from the leg. Path came back metastatic melanoma for the nose and evolving for the leg. He now has melanoma both lungs and liver. Definitely get your scan and fight from there. PET scans pick this up after melanoma has grown. Really small stuff won’t get picked up. Good luck and keep searching for answers!
        • April 3, 2016 at 4:44 pm
        Cathy M
        Participant
        Definitely get the scan. My husband has been stage 4 since 11/2013 first just right lung. Dermatologist removed a small red spot next to his nose,a lump area from same area and one black spot from the leg. Path came back metastatic melanoma for the nose and evolving for the leg. He now has melanoma both lungs and liver. Definitely get your scan and fight from there. PET scans pick this up after melanoma has grown. Really small stuff won’t get picked up. Good luck and keep searching for answers!
        • April 3, 2016 at 4:44 pm
        Cathy M
        Participant
        Definitely get the scan. My husband has been stage 4 since 11/2013 first just right lung. Dermatologist removed a small red spot next to his nose,a lump area from same area and one black spot from the leg. Path came back metastatic melanoma for the nose and evolving for the leg. He now has melanoma both lungs and liver. Definitely get your scan and fight from there. PET scans pick this up after melanoma has grown. Really small stuff won’t get picked up. Good luck and keep searching for answers!
      • April 1, 2016 at 3:07 am
      DZnDef
      Participant

      I googled the information Anonymous provided and found this

      http://www.ncbi.nlm.nih.gov/pubmed/7943535

      It is certainly possible that you have this.  In which case a PET/CT combination would be a really good idea to rule out internal metastasis.

      If you do have this version of the disease, some of your skin lesions would be defined as metastasis and you would likely qualify for the newest drugs.

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