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New SLNB post for PTgal and any others in need

New SLNB post for PTgal and any others in need

Posted By
Bubbles
12/30/2017 3:45pm
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Replies: 12

Been meaning to put this post together for a bit and given your recent question, PTgal - thought you might find it valuable.

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/12/sln-biopsy-delay-of-40-days-what-plus.html  

It covers rather new data looking at the timing of the SNLB if you choose to do it and the latest guidelines re SLNB generally.

Wishing you all my best.  Celeste

Hi Celeste, does that journal article come in English or is it published in spainish? I have a thought about the time frame of the data, starting in 2000 and running to 2015. My thought is if they are looking at overall survival and progression free survival, you would think that the effect of adjuvant therapies and stage 4 therapies that would be available to the group in that time frame(2000-2013) were not very good and would make it hard to transfer finding to what is such a drastic land scape change, even in the last year and a half. Now, if they had data from say, MD Anderson from 2014-2016, with the better stage 4 drugs available to patients and Ipi approved in the adjuvant setting. If these observation held up then I could see the value of their study. I think that I am becoming to critical of research studies and wonder too much about alternative motives of researcher's. I had treatment on Friday #100 and there wasn't even a cake or candles or a marching band!!! I love the way that your blog makes me think and ask questions and how important it has been to so many of us,on our melanoma journey's!!! Hugs from a very cold Canadian!!!Ed

Hey Edster!

I think the questions you pose are good ones.  And as I noted in my comments...the data of better outcomes by delaying SLNB by 40+ days...is certainly counter intuitive.  Alternatively, there has been a good deal of data noting that a delay of 1-2 months before SLNB has not adversely affected outcomes.  I had BOTH my SLNB's within 2-3 weeks of my cutaneous biopsy results back in 2003 and 2007. (Maybe that's why I progressed to Stage IV!!  Ha!  Who knows?)   In theory, one would assume that researchers took the time frame of the patient's diagnosis and treatment changes into account.  However, I can't be sure about that.  One other factor to be considered is that adjuvant treatment for NED Stage III or IV patients is a relatively new thing...and many of these peeps would not have had treatment unless they had active disease.  But....it is still an important point to think about when we know the landscape of melanoma treatment has changed so radically just since 2011.  The complete article is in English if you have a mere $39.95!  Hee hee!  https://link.springer.com/article/10.1684/ejd.2017.3065  

I don't think that this article is enough to change current practice...though it is something researchers should think about.  Mostly, it should be very reassuring to those who find themselves...for whatever reason...going longer than they like before having their SNLB.  I know I wanted the suckers out of there!  I  have worked with many here on this forum and via my blog going nutters about any delay, so this should help provide a bit of prospective.

For another point relative to that post...I don't really agree with the new guidelines for SNLB.  For instance, I would still not technically qualify...as my first primary was only 0.61mm with no ulceration.  Yet, I had a positive node, developed a second primary 4 years later, and developed brain and lung mets 3 years after that.  NOT THAT EVERYONE DOES THIS!!!!!!!!!!!!!!!!   But, the more important point is that the positive node, took me from Stage 1b to Stage IIIa in one fell swoop.  Back then - it didn't matter very much.  There was no treatment.  TODAY, it makes a world of difference, because as you pointed out - ADJUVANT care!!!  Soooooo important and now thankfully exists and is FDA approved.

Additionally, the factors that make a difference for a thin melanoma are younger age (less than 40), mitotic rate (which folks don't really look at any more), higher Clark level, and sex.  Ultimately, guidelines are JUST guidelines.  A framework for a starting point...not the end all be all.  It remains very rare for thin melanomas to have lymph node involvement.  However, with a 5% chance of that positive node, now that we have various adjuvant treatment options...finding out if you are in that 5% makes a bigger difference.  

And as to the most important part of your comment - HAPPY 100th TREATMENT day, to you!!!!  I would totally have baked you a cake and had a Timmy with you!!  Salud!! You rock!!  Love you bunches...from a fairly cold Chatt town.  (Do I get to claim being cold if it's 34 degrees????) - c

 

No, you can't claim cold at 34 degrees F. With wind chill they are calling for temp between -30 to -40 degree Celcius over the next day or so!!! -40 degrees celcius = -40 fahrenheit. They have charts up on the news with how many minutes it will take to get frost bite, at the various temps. The good news is the Ottawa out door canal is going to be in great shape for skaters!!!  

So do you think that adjuvant therapy (other than the dreaded interferon) would affect you differently if you had a few cells in your sentinel node versus finding a node clinically?  You .61mm lesion wouldn't qualify and in the upteen years I've been on this site, it is again a very rare situation to have that size lesion have a positive node.  My two (.58mm/.88mm) didn't have positive nodes - well at least I don't think so given I'm 25 and 16 years out with no SNB.  Heck, the SNB didn't exist for my first one.  I guess I'm just asking you do you think the outcome -- for most -- would be different if they found they were stage III via SNB versus waiting for a clinical diagnosis with an enlarged node?   There is still a subset of warriors who do nothing more than CLND and still have complete response.  I understand that a smaller tumor burden is always ideal when it comes to treatment but many who've had a CLND later have still only had a single node affected.   Micro vs macro - how much difference does it make with the new adjuvant therapies.  Something I've always pondered....

There are at least two key points that you addressed, Janner:

1.  Many (in fact, MOST!!!) folks with a thin melanoma NEVER progress and live fabulous, long lives with no further issue with melanoma no matter if they do an SLNB (sentinel lymph node biopsy),  much less a CLND (complete lymph node dissection).

2.  We now have a ton of data that confirms that all patients respond best to treatment with the least possible disease burden/tumor volume.

First and foremost, especially now (unlike when I was diagnosed in 2003) given the fact that there ARE adjuvant treatment options, it seems super important to determine if you are dealing with Stage I melanoma vs Stage III.  If you ARE Stage III and do not know it....you do not even get to have the discussion of whether or not to do a CLND or adjuvant treatment.  There are many reasons not to do either one of those....but if you don't know you have a positive node...you are not even having the conversation.  Likewise, monitoring for a Stage I melanoma patient is very different from that of a Stage III patient.  Insurance companies will not cover scans you and your doc may want you to have down the road if Stage III status was not documented through SNLB.  Additionally, though the risk of a positive node in thin melanomas is about 5%, many folks will feel much more reassured to KNOW that their SNLB was in fact, NEGATIVE.

From a public health perspective, you have to balance the risk, expense and benefit of 19 negative SNLB's against the risk, expense and benefit of the one positive result in this population of 20 patients with thin melanomas.  I would argue that the benefit of knowing that you the one Stage III patient, out of those 20 peeps, outweighs the risk and cost experienced by the 19 who learn that they are not Stage III.  However, that is a subjective decision and hinges on the individual's tolerance for risk.

Using my own case as an example, I think the guidelines are not specific enough.  Given the particulars of my situation (being younger than 40, etc) and all the many melanoma facts I've learned over these almost 18 years, I suspect that my risk of a positive node was more like 10-15% than the 5% that is touted.  While knowing I had a positive node and it's removal didn't do anything for me in 2003 or 2007 given the barren landscape of melanoma treatment options at that time....if I were to gain that information TODAY, it would make a world of difference in my treatment options and possibly the course of my disease.  Just imagine, if in 2003 after a 0.61mm cutaneous lesion and a positive node I had had adjuvant nivolumab.  Perhaps I would not have gone on to develop a second primary lesion and avoided all the fun and games of brain and lung mets.  As it is, I had nivo after being rendered NED with surgery and radiation (last dose in June of 2013) and thankfully have remained NED.  And to answer your specific question, I think YES!, learning you have a positive node, despite a thin cutaneous lesion, would make a difference for a significant number of individuals, given current treatment options and the fact that waiting for a clinically apparent disease occurrence is much worse prognostically.

I am a firm believer that knowledge is power.  I have learned through personal and shared experience with other melanoma patients that melanoma sucks great big green hairy wizard balls and is unpredictable at best.  Given the craziness that is melanoma, deciding what is the best treatment road to travel must be rooted in knowledge and personal approach to risk and life.  We ratties have endured what we have to save ourselves.  But, we also hope that individuals and science learn from us as well.  I don't want folks to endure what I have if there is ANY way to prevent it.  And...in melanoma world today....there just might be.

I, FINALLY, am feeling quite hopeful about the future for melanoma peeps.  May 2018 be bright and beautiful for us all...and especially, you, Janner.  Your knowledge, reassurance and thought provoking responses have been a blessing to ever so many folks over all these years, my friend.  I wish you well.  c

Of course, if you are the 1 in 20, you want to know.  But if you are the other 19, you had unnecessary surgery.  Since I was never given the option of a SNB, it was a moot point for me.  I only found out that possibility existed after #3.  And at .88mm, I could certainly have fought for it.   But based on your guidelines, I should have had one for both of mine (age alone not even looking at other factors).   I can go along with almost everything you said except the 2nd primary.  Somehow, I'm not convinced that adjuvant is going to fix that.  Question, have you ever been tested for any genetic defects for melanoma?   And a totally off the cuff question, if you had 3 primaries like me, were stage 1 but had the genetic defect CDKN2A making me high risk for more primaries, what are your thoughts on adjuvant therapy?  Has that ever been discussed/researched?

I get that the landscape has changed.  When my father was diagnosed at stage II, he didn't want the SNB and I fought with the medical establishment to that end.  Why do the SNB if you don't want to do a node disection and aren't going to do Interferon?  I certainly wasn't going to recommend interferon for an 80+ year old man.  And the CLND would have been under his dominant arm that he used for a cane.  Didn't make sense.  In the end, he was likely stage III already but his situation was complicated by 3 other cancers and we chose a more conservative approach.  If nivo were available back then as adjuvant, it would have been a totally different conversation.

Given where we have ended up with this disease after dealing with it and helping others for a long time, I can see how we come to slightly different conclusions.  I have dealt with thousands of the "19 in 20" over my 16 years here and on other sites and very few of the "1 in 20".  I'm still digesting the new adjuvant options because I haven't been a big fan of yervoy (or Interferon) based on side effects alone.  I'm glad to see there is finally a better option now for adjuvant.  I'm also glad you're here giving out all your valuable wisdom.  I've been doing this too long and no longer bubbling :) with enthusiasm to do the indepth research like you.  Totally appreciate all you do for everyone here!

Happy New Year!

j

 

No, I've never been tested for any genetic stuff or mutations other than BRAF...unless it was done in my trial (some was) and as such, sadly, I am not privy to it. (If I recur I would certainly look at that.)

I don't know whether adjuvant immunotherapy would prevent someone like yourself from developing additional primary lesions.  My gut says it would, and as more of us with Stage III and IV disease are treated with immunotherapy as adjuvant and fail to develop additional lesions (cutaneous or otherwise) that would lend some evidence toward my feeling.  However, as adjuvant immunotherapy remains super new...and folks without measureable disease have to be followed a loooooong time to demonstrate a return on investment....real data that could truly answer that question is far from existing.

I have remained silent on most of the SLNB discussions on this board over the years because I am fully aware that I'm the weirdo out of the 20 and don't want to frighten folks!  Because:

1.  Most folks with thin lesions will NEVER turn out like me!!!

2.  When there were no effective treatments (interferon) or only treatments laden with a high risk of side effects (ipi) there was little argument for doing it as risk was often deemed higher than benefit. 

But...there are many folks who could be more easily convinced to go on with their lives if we COULD tell them they did NOT have disease in a node and others who might find nivo a treatment option they can get behind.  To your point regarding choice ~ ABSOLUTELY!!!!  SLNB (and certainly CLND) is NOT for everyone.  There are a zillion factors to consider before doing an SLNB:  age, health, other disease complications, the desire or tolerance for additional treatment even if it does demonstrate a positive node.  If you can live with not knowing if there is a positive node present or if you don't want to seek treatment beyond observation - there is no reason in the world to do a SLNB.  But....if you want to know, if you want to seek adjuvant treatment if your node is positive...I think it should be the patient's choice.  Yes...I know that is a bit of a pipe dream.  But, hey!  Really effective treatment for melanoma was a pipe dream when I started this journey!  Thank goodness things keep advancing, even if it makes old timers like us have new concepts and possibilites to wrap our heads around!!  

If I do ever run across any data re immunotherapy and folks with multiple primaries....you'll be the first to know!!  yours, c

I am wishing everyone a very Happy New Year from an unusually chilly Arkansas! It is currently a balmy 4 degrees at my in-laws this morning, so I am definitely looking forward to getting back home to the Rock where the high will be a sweltering 25. Ha!

I'm still digesting this article as I am not really sure what to make of it. On the one hand, it does seem odd that one would be better off waiting longer for SNB. However, I am taking the survival statistics with a grain of salt. The landscape of melanoma management has changed so dramatically in just a few short years that I am not sure disease-free, melanoma specific, and overall survival statistics which include those from 3-18 years ago are truly relevant. That being said, the phenomenon is definitely worthy of more research. This does not change my mind about wanting the SNB when I go for my WLE. Despite the fact that Clark levels are no longer used for staging, I personally feel they are very important when determining whether or not a person with thin melanoma should get SNB. My 1.0 mm melanoma was Clark level IV, so it has technically reached the reticulated dermis where blood and lymph vessels are located. For that reason, plus the higher mitotic rate of 4, SNB is really a no-brainer for me.

Thank you, Celeste, for posting this article. It is definitely food for thought. In my short time on this board, you and other regular posters have given me so much piece of mind. I still have melanoma, but I now have a much larger support network of people who have gone through the emotional rollercoaster that is melanoma. Wishing everyone a fabulous ride in 2018!

Laura

Anonymous - (1/1/2018 - 6:15pm)

adjuvant immunotherapy is available for stage I to try and prevent additional primaries?

Anonymous - (1/2/2018 - 12:27am)

Surgery is the only available treatment for stage 1.  No adjuvant therapy is available for stage I at this point.  The discussion was hypothetical for people who already have had multiple primaries.  Since 90% of stage 1 people will never have a second primary, I doubt this type of adjuvant treatment will ever be used to avoid a second primary.

Thanks, Anon for clearing that up for me "hypothetical" I should have figured that one out on my own because it is so obvious that the first Anon's comment was "hypothetical"???? Or was the first Anon the same as the second Anon, oh it is all so confusing to me!!! I have just come up with my first New Years perdiction, wish, hope " that the forum will delete the Anon button"