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Digesting last week’s SLNB conversation

Forums General Melanoma Community Digesting last week’s SLNB conversation

  • Post
    Bobman
    Participant

      I have  read ,and re-read the conversation  here last week , as well  as Celeste's blog on the subject  of snb for people  with multiple  primaries . I think I  have a good  understanding  now,but wanted  to check in here before  starting  up again  with  my surgeon  in the next couple  of  weeks  to make sure ,so I can  discuss  with  him. My first  four  primaries  had depths  between .5 and .8. My surgeon  said  that since they were shy of the standard 1 mm  for the snb I  was good  to  go. My next 7 primaries  have all been in situ .  After I was on about primary  5,or six they started scanning me. Three  pet scans  and a couple  mri's and CT's later, all with "could  be mets"  written  somewhere  in the report , and I  still  don't  have anything  concrete  on different  staging  from the original  lesions . I'm  wondering  now if I   would  be much better  served  getting  a snb,rather than  continuing  the scans? For the first time ever,just a few days  ago I  felt what I believe  to be an enlarged  node under my left pectoral  muscle .  I'm  not  sure  how ,or where nodes react in relation  to primaries , but I have had 4 in situs  on my left side. One on left shoulder , one on left elbow,and two  on my left side near the armpit. Would  this be considered  reactive enough  worthy  of a look? Every practitioner  I have seen in the last few years  has poked around  for anything  palpable , however  cursory  it was. But I   certainly  felt  it the other day,and my palpation  skills are excellent . Could  positive  nodes be responsible  for the string of in situs ?  I have an excellent  relationship  with my surgeon , so I just  want to go in armed with as much  as I   can. Really  appreciate  the earlier  conversation  by you all on the snb for those  with  multiple  primaries . ….it got me really  thinking . 

      Thanks  in advance . ..all I  learn about  this stuff , I  learned  from you all.

      Bob

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    • Replies
        doragsda
        Participant

          To determine which are the sentinal nodes for a particular primary, they use a radioactive tracer injected at the site of the primary and track to which nodes that area drains.   With as many primaries as you've had, that sounds like it would be a complicated ordeal and would require SLNB in multiple locations possibly.

          I'm not a medical practictioner, but if you are receiving regular scans, I think that is a better surveillance technique than the SLNB.   If you have a palpapable node, it seems that a PET would be able to tell you if it has tumor activity in it.  The biopsy would be able to find microscopic metastases that the PET wouldn't pick up, but if it's large enough to feel I'm thinking a PET would tell them a lot.

          As a point of reference, my wife had a clear SLNB after a 4mm depth primary removal, all clear PET, no signs of melanoma, and six months later she was stage 4 with two brain mets, so the SLNB isn't the end – all that some facilities like to claim it is, in my opinion.

            Bobman
            Participant

              Thanks  doragsda…every  bit of feedback  I  get helps  me more  than  I  can say. Every time  I   think  I've  got it figured  out , a slight change  makes me  second  guess  everything  again .  Means  a lot  to me you took time to share that information . Wishing  all  the  best for  your  wife's  recovery .

            MAKeller
            Participant

              I think Jennier has pointed this out once before.

              If your primary is >1mm, excuse me, now >.8mm, MM can be in your blood.

              We should all be getting the immunotherapy drugs, Opdiva, but the system is slow to react.

              I bet it will be another couple years before they swith gears.

              Janner
              Participant

                So Bob, it would be hard to do any type of SNB now.  You wouldn't know exactly where to inject the tracer.  They typically do that before the WLE because the WLE may change the drainage paths.  They inject right at the primary center and that would be long gone in your case.  There would be no way to know really where to start the tracer and hope for a decent chance to actually hit the original sentinel node.

                SNB vs scan.  SNB catches microscopic mets, scans only catch tumors typically around 5mm and larger depending on the resolution of the machine.  At this point, I think scans are more realistic.

                I would think the pectoral area is a tough stretch for most of those primaries.  The ones on the arm itself would drain first to the armpit.  The shoulder would most likely drain there too but could also do neck or clavicle.  So the pectoral area would not be the 1st drainage basin for any of those (shoulder one is the iffy one).  If any of your primaries were on the trunk, those could also be candidates.

                String of in situs coming from positive nodes?  No.  In situ grows from the epidermis downward.  Metastatic lesions grow from the lymph vessels deeper in the dermis.  Mets can grow upward toward the epidermis, or stay deeper along the lymph paths.  But if your pathologist has any credentials at all, he should be able to determine primary vs met.  Growth patterns are one way they do that.  Granted, there are some lesions that can't be determine for certain, but they are not typically in situ and it would be noted as such.  One veteran here had a 6.8mm primary/met that never could be resolved. 

                We know you are a unique case, and nothing in this field is ever absolute.  My info above is generally how it works.  Feel free to ask more/comment – you know where to find me!  🙂

                  Bobman
                  Participant

                    Thanks  as always  Janner .  Was getting  in the head too much  thinking  I may  have been off course , and you answered  everything  I  was concerned  and  confused  about . I  did a pretty  good  job over  the  past  few months  of trying  to forget  about  melanoma . Beer helped!  But new lesions  popping  up  brought  me back  into  reality . The break  was great , and I  feel  ready  to  get back to the fight now. I guess  the closer I was getting  to the knife again  brought  all the unpleasant  stuff right back  up . It still  does a number  on my  head  at time's . That earlier  conversation  on snb got me in a tizzy  thinking  I'd  missed something . Your  words  and rationale  have really  grounded  me,which  is  exactly  what  I  needed  to kick  off this next step . That is big medicine  in itself . 

                    Mahalo !

                  Bubbles
                  Participant

                    Hey Bob,

                    Sorry you are back up for more melanoma crap.  I agree with everything Janner said.  I wish it were otherwise….that something….SLNB…anything….could give you answers and stop what you're dealing with.  Right now, for all the reasons Janner noted, I don't thnk SLNB would do you any good.  We have come so far in melanoma with targeted therapy for BRAF+ melanoma and immunotherapy for many others.  Still, ever so many remain without effective therapy….all those who are not BRAF+, those for whom immunotherapy is not effective, those with 'strange' mutations, with mucosal and ocular melanoma, with multiple primaries, etc., etc.  I hope with everything I am, that the knowledge researchers have amassed about how melanoma works, what we do know to be effective ~ will lead to clarification, better treatment and management for all melanoma peeps.  And in our small ways, I think smart discussions and sharing of our thoughts and experiences here, can help do that as well.  Hang in there!!  I wish you my best.  Celeste

                      Bobman
                      Participant

                        Hey Celeste !  You  know  I read just  about  everything  you write , and for several  years , much of it was not sinking  in because I  just  couldn't  apply it  to what was happening  to me personally . Then,over time and further  down  the road  of experience  with  this , I  go back,read again  and pick out the jewels  of information  that weren't  apparent  at a more innocent  time. And finally ,  after I think  I'm  getting  it but still  have questions  ,you ,or someone  else  always  custom fits an intelligent , understandable  answer to my personal  situation .  That is no small  thing,and  I   thank my lucky star's  for all of you who are truly  using your energy  for the well being  of humanity . 

                        With gratitude , 

                        Bob  

                        Bubbles
                        Participant

                          Bob, 

                          Thanks for the kind words. I've been thinking of you today.  The only recommendation I can make that I might consider were I in your shoes would be genetic testing (if you haven't already had that done) and to try to access an institution or investigator who is working on evaluating circulating tumor cells (via blood draw) or detecting tumor DNA or RNA (also blood draw) to detect the presence of melanoma beyond the skin.  It might even be possible to just send your blood…and not your entire self!!!  I'm speaking a little out of school here.  But, these tests are real, though they are still in development.  (A lot of this work is being done in Australia.)  However, if you found the right investigator and you (or your doc) could work with them, forward your history to them, it might be something that could be very beneficial.  It would possibly tell you something you don't currently know in regard to the spread of your disease, and/or, help determine if adjuvant therapy with nivo, or something else, might be helpful.  It is also possible that you are a good candidate for a vaccine trial.  Sadly, vaccines have not proven out yet, but I still hold out hope for them in the future.  Don't know if any of this interests you…but…that is what I was thinking.  I wish you well.  c

                          Bobman
                          Participant

                            Celeste, 

                            I'm  sitting  up  straight , and paying  attention  now! That's  the kind  of information  I  can take to the people  I'm working  with . Everyone  was hoping  I would  get to UCSF , but in lieu  of my "body " getting  there anytime  soon, I love  the idea of getting  my blood  to anywhere  someone  could  help . UCSF  has all my records  and has made several  appointments  for me when we all believed  it was going to happen a little  sooner .  I've  got  a dermatologist  on Oahu  who I've  worked  with  in the past that caught wind of me trying to go "out of network  ",and after a lengthy  phone  conversation  with him he said he would  immediately  schedule  genetic  testing  for me   (which  hasn't  been  done  to date)  and get me referred  to an oncologist  he thought  highly  of. My current  oncologist , as well as surgeon  and PC are all willing  to take  direction  from any specialist .  This sounds  like a good  plan  Celeste , and I  will  use the terminology  you posted to perk everyone's  interest out here .  I am more than interested  in doing the things  you  mentioned . I'm  getting  on it immediately . I'll  stay better  in touch  with you all,and post further  information , questions , and help with terminology . This is great stuff. A couple  of cuts,a couple  of flights  to the neighbor  island , and some keener focus  on direction. Yes!

                            Thanks  so much , I'm  feeling  it.

                            Bob

                            Bubbles
                            Participant

                              Okay, Bob.  Get ready for a complicated fight.  I hope I haven't sent you down a rabbit hole…but I think it is worth it.  You certainly deserve to see a top specialist in melanoma.  Additionally, the genetic testing seems rather straight forward to me and I am glad that it is gettting done.  Arm yourself with some nomenclature and print off articles and reports, to take with you when you ask for your blood to be examined for "biomarkers".  I have zillions of posts on my blog about that sort of testing.  Here is a post with a bunch of links within:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-circulating-dna-to-measure.html  

                              Here are two discussions of a blood test, relative to response to anti-PD-1, that I posted this past December:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/12/another-look-at-recent-study-of.html  

                              It can all get pretty complicated quick.  But the main thing is this.  These blood tests exist.  They tell us about the presence of bits and pieces of melanoma in our blood.  That knowledge can help define:  our type of melanoma, our quantity of melanoma, our likelihood of a response to a particular treatment, our response or lack of one to a particular treatment once it is in place.  In your case specifically, this sort of knowledge could also impact how aggressive your search for spread (ie with scans) should be.

                              One other thing.  Dr. Weber (at NYU) never fails to answer questions from patients or docs if they email his office.  I think he is a very straight shooter.  He puts up many videos that are aimed at other oncs…to help them treat their melanoma patients.  So, should you have a doc willing to ask for help from an expert…he would be a good one to contact. 

                              I wish you well.  Hang in there.  Unfortunately, being your own advocate and the canary in the coal mine is still part of melanoma care for far too many.  Ask questions as you need. I will try to help you as much as I can.  Celeste

                              Bobman
                              Participant

                                That's  a  good  bit of information  for  me to absorb  and  get  familiar  with .  I don't  mind  complicated  as long as I know  what I'm  working  towards .  I'll  get up to  speed  over time. Thanks  so  much for giving  me  some  direction , resources  and support .  I'll  stay  in touch ,and share the results .And probably  have plenty  more  questions  along  the  way . I've  got a grease board  in my sitting  room  to keep  the path,and progress  in my face. Great stuff!

                                Many thanks ! !

                                Bob  

                              Gene_S
                              Participant

                                Hello Bob,

                                I just wanted to add that a SNB does not always show melanoma.  My husband had a 10.5 mm lesion on his head in Jan. 2008 and his SNB came back clear.  Nov. of the same year he had another lesion removed from his head.  In Oct. 2010 he became Stage IV after having 4 previous surgeries all in the head and neck area.  He had a unresectable lesion on his head and neck area at the spine C1/C2 area and mets in his lungs and liver.  If you want to read more about his journey you  can read his story on his profile.

                                He did the clinical trial of Ipi (Yervoy) 10 mg/kg and GMCSF (daily injections) and he became NED in July 2012 and has remained that way.  He stayed on the maintenance doses of the trial until Dec. 2013.

                                Judy loving wife of Gene (NED since 2012)

                                  Bobman
                                  Participant

                                    Hiya Judy!  I have followed  Gene's  journey . I appreciate  what how you related  a part of it to me, and what I  was a little  confused  about. I soak up everything in here like a sponge , and it really  helps  educate me ,and gives me such a better understanding  of what worked , didn't  work, or somewhere  in between . May Gene stay NED forever !  He's  lucky  to have you by his  side.

                                    Aloha , 

                                    Bob  

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