Saturday, September 5, 2015

Stage IV melanoma, now 5 years NED, 2 1/2 years post NIVO/Opdivo

Friday I had CT scans of my neck, chest and pelvis with an MRI of my brain.  I remain NED.  I had my original superficial melanoma tumor (very thin...only 0.6mm) with a positive right axillary node in 2003.  Since I had no real treatment options, I had no treatment...other than "cherry picking" tumors including another superficial lesion to my left forearm in 2007 with the big ta-dah in April 2010 when I had SRS to a brain met and the upper lobe of my right lung removed due to melanoma in my bronchus.  With no treatment available for a person with no measurable disease, since those procedures rendered me NED, I carried on. Just as I thought my life was back on track, in October 2010, my right tonsil and surrounding tissue were removed due to melanoma.  I entered my NED Nivo/Opdivo trial in December of 2010.  My last infusion of anti-PD1 was in June of 2013, almost 2 1/2 years ago.  Come October, I will be NED for 5 years.

Well, YAY!!!!!  And...what now?  Not sure that anybody knows what to do with me...and the growing numbers of others in my position or close behind.  It is a new world for melanoma.  Thank goodness.  Many anti-PD1 trials (with both Nivo/Opdivo and Pembro/Keytruda....not to mention ipi/nivo combo's) are closing in on their end points for at least some of their ratties.  Patients and oncologists are unsure what to do, beg for, or advise.  Weber has consistently held to the belief that only a "certain" amount and duration of anti-PD1 is needed...not an endless, year after year, week after week administration routine.  However, while he has been very clear in his belief that after a certain amount you will respond or not...AND maintain that response...whether it be complete or partial...the EXACT amount (in both time and dosage) has not been written in stone.

Several of my dear ones are rapidly approaching this point.  I hope that I may be a canary in the mine that not only uplifts, but leads their way.  Of course, I do not KNOW what even my future holds and fully realize that I entered my trial in a position of NED.  A position which many did not have.  Further, there are many other dear ones who have tried my treatment and much, much more....and remain in search of a therapy that will rid them of even some of their disease.  It hurts my heart and I hope ever so much, that science will meet their needs very soon.

It is a mess.  I am relieved for me.  Happy for my family...they have been through more than enough.  And...desperate for all those struggling with melanoma to have 5 years NED.  I think we ALL deserve it.

Much love. - c 


  1. Congratulations on your 5 year NED status !! Thanks for all the information you have passed along over the years. Because of your medical background and ability to decipher publications regarding clinical trials , many who face beating this ghastly disease are given a resource to help them in guiding their therapy. You are doing a great service to humanity and as I continue to follow your blog I wanted you to know that you have followers who are grateful for the information and relieved that you are doing well..... Happy Labor Day and many , many more.

  2. So very grateful, Celeste, for all you research and share with us, our friends, and families. Your continued NED status is celebrated by all the lives you touch. Wishing you peace and joy on this Labor Day.

  3. Thanks, guys. Warm wishes to you and yours as well.

  4. So I am feeling confident tomorrow my husbands results will be good,, NED...........after 9 months of BrAF combo, no treatment now for 4 do nothing, just live and hope shoe doesn't drop? or immunotherapy to be sure it has less chance to drop? Rita

  5. Hard question indeed! I've got fingers and toes crossed for good scan results for you!