› Forums › General Melanoma Community › Digesting last week’s SLNB conversation
- This topic has 13 replies, 6 voices, and was last updated 5 years, 4 months ago by Bobman.
- January 9, 2018 at 10:34 am
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.
- January 9, 2018 at 7:10 pm
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.
- January 10, 2018 at 10:09 am
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 .
- January 9, 2018 at 11:10 pm
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.
- January 10, 2018 at 1:38 am
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! 🙂
- January 10, 2018 at 10:35 am
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 .
- January 10, 2018 at 3:17 pm
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
- January 10, 2018 at 7:37 pm
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 ,
- January 11, 2018 at 1:36 am
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
- January 11, 2018 at 10:05 am
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.
- January 11, 2018 at 4:38 pm
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
- January 12, 2018 at 8:32 am
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 ! !
- January 10, 2018 at 3:56 pm
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)
- January 10, 2018 at 7:48 pm
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.
- You must be logged in to reply to this topic.