› Forums › General Melanoma Community › Are you aware of Bio-markers or tests for Melanoma Rx efficacy when you’re N.E.D.????
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Annalive.
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- May 24, 2018 at 10:10 am
Hello All,
After 3 1/2 years of remission I had a 4.5 cm Melanoma removed from the lining of my stomach wall. I am currently N.E.D. however, as this is the 3rd re-occurance in 10 years it is obvious that something systemic is needed. My Onco did genetic testing nwhich found that I have 0% PD-L1 so Opdivo is out. I am BRAF pos so could take BRAF and MEK inhibitors. Quite honestly any pharmecutcal scares me. And, If I am NED then how do we know if it is working as ther is no tumor to track. So, my question is… do any of you know of bio-markers or tests which would track something in my body to indicate if a protocol is working for not? If I am going to endure a treatment then I would at least like to have some way of knowing it's validity. I have had 3 surgeries over the past 8 years… plus the original sutaneous melanoma which was removed 25 years ago. I have never taken pharmecutcals but have taken a more Integrative path using hypethrmia, Highdose Vit C, Mistletoe,etc… Any insights much appreciated. Thank You , Ann
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- May 24, 2018 at 11:43 am
Hi Anna,
Sorry for what you are dealing with. I hope you are seeing a melanoma specialist…ie…an oncologist who takes care of lots of melanoma patients. That makes a huge difference in your options and the validity of lab results.
Here is a primer I put together on current basic melanoma treatment options…that may or may not provide you with additional information:
While it is looking as though folks whose tumors show a greater presence of PD-L1 may respond a bit more to anti-PD-1 therapy (Opdivo or Keytruda) many folks with very little, still gain a response!!! And…the testing for PD-L1 expression is not absolutely perfect nor consistent at this point. Here is just one report addressing that subject: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/05/in-melanoma-if-you-are-worried-about.html
Finally, in regard to blood tests in melanoma ~ there are about a zillion!! Docs can look at anything from bits of circulating tumor DNA, basic white cells and their ratios to others, individual proteins…the list is long. And that's not even talking about additional blood "packages" as it were like Decision DX, etc, etc. The problem is they many of them are not routinely done, consistent across labs, and may or may not be covered by insurance. Still….we have tons of data that demonstrates some very simple, routine values can provide a great deal of important information to melanoma patients that can help guide their treatment decisions. Here are only a zillion reports with links to even more within (including a new post from today!):
So….I don't think you should count anti-PD-1 out as a part of your treatment arsenal. Not to mention that Ipi (Yervoy) may be a valid option as is, in your case given your BRAF positive status, BRAF/MEKi. No, I wouldn't wish melanoma treatment on anyone. But, I'd much rather deal with the treatment than melanoma!!! I was Stage IIIB in 2003, Stage IV in 2010 with brain and lung mets….and still here and NED after surgery, SRS to the brain and 2 1/2 years of Nivolumab (Opdivo). Last treatment in June of 2013. There is hope and you do have options. Hope this helps. Hang in there. Celeste
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- May 25, 2018 at 12:53 am
Dear Celeste, Thank You So much for your thorough response. And, I have you to thank, (finding your article through Leland Faye,) for the strong suggestion to see a Melanoma specialist. I went to Angeles Clinic and was seen by Dr Hamid who is a world class Mel doc. It is there that I got the genetic testing done. I will be speaking with him soon about options. I was surprised at the 0% PD-L1 and in fact disappointed. My surgeon is also sending off for a PD-L1 diagnostic. It will be interesting to see if the reports concur. I have been working with a Naturopathic Oncologist and have engaged the Integrative approach meaning the best of Allopathic and Naturopathic medicine. Over the past 8 years I have had 4 surgeries and one set (3 treatment) of high dose steriotactic radiation . I am a "virgin" to pharecuticals (except for a low dose, 5mg, of Tamoxifen which also put me into menopause overnight.) I use diet, hyperthermia (which I believe has been essential in my wellbeing,), IV Vit C, Pini Mistletoe, copious amounts od targeted supplements, Avemar, metronomic pharmecuticals, LowDoseNaltrexone, Melatonin, etc… as well as the "inner" emotional work. I am currently exploring Coley's Toxins as well as updated info on diet. I am excited about reading more about the possible markers worth tracking. Because I am NED, there is no tumor to watch (thankful :-), however, it is obvious by my track record that my body knows how to make Melanoma. I want some way of knowing if a protocol is working!!! I will read the links you've put together for me. Again, Thank You so much for your work and dedication. And congratulations on your NED… in a month reaching the 5 year mark. Aloha, Ann
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