Adjuvant treatment in melanoma: Limited options....still

With many on the boards worried, and others contacting me via email, about adjuvant treatment options for NED Stage III/IV melanoma, where despite the relatively recent and fairly numerous FDA approved treatment options, adjuvant treatments remain few and far between.....I remembered that I had worked on this post several months ago:

Adjuvant care for melanoma patients with no evidence of disease, no matter if you are talking about node biopsy, complete lymph node dissection, or treatment with current melanoma therapies, is very tricky.  It is easy to provide "treatment X" to a patient with measurable tumor burden, repeat scans looking to see what happened to their tumor after the treatment and write that down.  When the person has nothing to measure at the start, seeing how "treatment X" affects them takes time.  Sometimes....if the patient is lucky....a very long time.  Humans, drug companies, docs - don't like waiting a long time.  But that's the deal.

In a 2014 op ed written about whether to do sentinel lymph node biopsy:  sentinel lymph node biopsy in melanoma are we sufficiently informed...
(Though to me, the real elephant in the room regarding SLNB is - if you don't do it...you may not realize that you are walking around with melanoma growing in a lymph node!!!!  Just say'n!!)  ...the article talks about some of the relevant data, but the most important line to me is this: "The introduction of active drugs for metastatic disease (BRAF inhibitors and check-point blockers) provides hope that effective adjuvant therapies for SLN+ patients will be identified in the near future; however, until that time..." 

Yep....exactly that.  And that time should be getting ever closer.  My fellow ratties and I started our NED arm of a Nivo (Opdivo)/vaccine trial in 2010.  But....you have to wait and see what happens to us.  Will we all progress in the end?  Will more of us FAIL to progress than our statistical histories would indicate???  (So far...YES!!!!  Many more of us are alive and well than the data shows we otherwise would be!!!)  The same waiting game must be played for the Pembro, Ipi/nivo, and BRAFi trials and even surgical procedures that are also now ongoing for NED/Stage IV/Stage III patients (though most are not currently accruing patients).

There is a good deal of data showing that all of these treatments help Stage III/IV patients prevent disease progression in melanoma. Especially for surgery...as "cherry picking" (ie surgical removal of lesions as they crop up) for melanoma has been going on the longest and has worked for many. But....can anybody tell you for certain treatment 'x' will work for YOU? Or me?  Sadly, no.

Another huge factor when providers treat ANYBODY for ANY disease is cost vs benefit.  I am not referring to monetary issues (though sometimes, unfortunately, that figures in as well).  I am talking about side effects of the process vs positive effects on the patient's disease.  All the things I've listed as treatments above come with risk and side effects.  Is that a risk worth taking if you are Stage III?  Maybe.  Maybe not.  Until very recently, that was a big reason why these adjuvant therapies were offered only to Stage IV patients.  However, researchers are feeling better about the good and valuable effect these treatments are having on Stage IV patients with disease and otherwise, so they have decided it is at least worth testing in Stage III patients.  But...that is the rub.  Side effects vs value.  Ribas and Weber discussed this specifically in regard to the ipi/nivo combo.  Whether you are a patient with measurable disease or not....this combo treatment has some of the best response rates going...but also has a good number of side effects likely.  Risk vs benefit.
Here is a post that addresses a lot of this....including the results (now published) of my NED trial:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/ipi-vs-nivo-trial-as-adjuvant-for-stage.html

But...no.  No one can tell me that because I did 2 1/2 years of Nivo/Opdivo and have had surgical removal as well as SRS to melanoma tumors I will remain melanoma free.  I cannot tell you what would be best for you.  However, for me....as someone who was 7 years out from their first melanoma primary, despite sentinel node biopsy, bilateral axillary lymphadenectomies (no lymphadema still, by the way) and STILL progressed to Stage IV with melanoma tumors in my lung, brain and tonsil....all in rapid succession in a 6 month period, I knew I had to do SOMETHING!  I had brain zapped, lung and tonsil lesions surgically removed.  Completed my nivo trial.  I have had no disease recur since 2010.  Will that hold?  Don't know.  Would I do EVERY bit again?  Yep...pretty sure what I did initially gave me my disease free interval....and the nivo has kept me here today.  I'll just have to see what happens to me tomorrow and deal with whatever that may be as best I can.

Perhaps the coming  DNA/RNA blood testing for tumor markers (These will happen!  I promise!  Hopefully, sooner rather than later!!!) will help not only clarify what treatment will work best for whom, but treatment response as well...even at early stages...even when ostensibly NED.  Ratties are awesome. Lack of adjuvant care is unacceptable to me!!!  Hang in there! - c