Sunday, February 21, 2016

Damn Spam Blocker...For Chris, et al...and all the rest of you newly diagnosed with melanoma!!!

Tried to post this on one of the melanoma forums...but length and links seem to trigger their spam here you go:

Dear Chris (and the rest of you on this thread),

I usually refrain from comment on folks in the early stages of melanoma. I am not the poster child you would like to see in the some ways...and Janner (a frequent and excellent contributor to this forum) is more of an expert in this regard than I am.  However, this discussion made me feel that there may be some things I can say that you need to hear.  And, just so you know....there are strange folks in the world who will pose as a variety of things (patients included) who will try to convince a desperate group of people to utilize their "product".  Some of us have been in this game a long time...which is good!!!....and we have seen this happen and try to stand guard for others if we feel that may be what is going on....though I don't believe it was in this case.

So...who the heck am I anyway?  I am Celeste (Bubbles).  I was diagnosed with my first melanoma primary cutaneous lesion in 2003.  It was only 0.61mm in depth with no ulceration.  Even so I had a positive sentinel node and underwent a complete lymphadenectomy of right axilla which showed no other positive nodes.  I had no additional treatment...mostly because there was none available except interferon....which comes with side effects that, for most, are far worse than those anti-PD1 products now produce despite absolutely no evidence that it improves survival.  Almost 5 years later in 2007..I developed a second primary on my forearm....had it (only 0.5mm) and the sentinel node removed with another complete L ax lymphadenectomy.  None of those nodes were positive.  Still no drugs other than IL2 and interferon available.  I watched and waited.  On a routine scan in 2010, followed by bronchoscopy to identify the blob, melanoma was found in my lung.  An MRI of my brain showed a met there as well. Surgery to remove the blob and the right upper lobe of my lung.  SRS (radiation) to the brain met.  This was just 2010, y'all!!!!  Guess what?  STILL...not a single other melanoma med with FDA approval.  I participated in a 2 1/2 year, NED arm, of a Nivo/Opdivo trial that started in late 2010 and remain NED ever since. see how I am not the girl you want to be when you grow up?  The truth is....most of you will NOT be me.  That's the good news.  You should be vigilant, watch your skin, live your life.  The other truth should live your life no matter what, but I digress...

I don't know a great deal about Decision DX.  I don't think it is a bad thing...but I don't think it is going to give you a great deal of information either way.  As long as you take your "result" with a grain of salt....I don't think you have anything to lose.  What you do need to keep in least at this that the only "data" that is available about it is being put out by the company that makes/sells it:  Castle Bioscience.  That doesn't make it bad...just something to think about.

Here's what I would most certainly be thinking about if I were in your shoes!!  And remember....I HAVE BEEN!!!!  PCR testing for circulating melanoma cells...or bits of them.  Sadly, these are not completely validated or available at this moment.  But, if these get going the way I think they will,  we will be able to glean REAL info about what is in our bodies.  The implications are huge!  If we really knew what was floating around in there...we could decide if we need systemic treatment or not and whether we are responding to a certain treatment...or not!!!
Here are some posts you might find helpful:

The other difficult issue is whether or not to do sentinel node testing...and if that is positive....whether to do a complete dissection of the nodes in that area.  As you can see above, I chose to do it.  But it is not completely clear whether that really affects outcome or not.  Here is a post I just put up today that contains a link to another recent study within it:

In addition to the fact that your prognosis is pretty good....should you have a recurrence or advancing disease tomorrow or years down the have options.  BRAF inhibitors, if your tumor is BRAF positive.  Testing for which you should probably have done on your tumor samples now.  Ipilimumab, a type of immunotherapy...only a 15% or so response rate...with a fair risk of side effects...but has been a life saver for many.  Anti-PD1 products (Nivolumab/Opdivo and Pembrolizumab/Keytruda) with about a 40% response rate and far fewer side effects than ipi.  Additionally....ALL these products are currently in trials with Stage III and IV patients who are adjuvant treatments.  I was a rattie in one of these early NED trials myself and most of my fellow ratties and I have done far better than expected.

So lots that is scary...lots to learn.  There are many here to help you....including my dear Ed.  Melanoma makes folks testy.  Wishing each of you my best, Celeste

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