Two years NED!!

Results from Robert's scans on Monday are in, and they show no evidence of disease!!! Such good news as we approach the two-year mark after surgery that took the remaining detectable melanoma out of his body.

Surprisingly, I had only a little scanxiety this time around. There are several possible explanations for this change.

For one thing, I've been too busy to worry about it. I started a new project for BBNA in May, and I wasn't sure until today that I would be able to do the work from home. I was caught between dreading the commute to Crystal City to do the everyday part of the assignment and not wanting to disappoint my friend who is spearheading the project. Problem reduced to manageable today. Whew!

Another reason could be that Robert is doing so well. He shows no sign of illness, past or present. It's not uncommon for asymptomatic melanoma survivors who are feeling great, living life to the fullest, to turn up with satellite lesions or distant metastases, so how he feels is an unreliable indicator. But I believe that his "watchful waiting" schedule (dermatologist every three months, oncologist every four, scans at least every six) gives us the best chance of early detection if the disease recurs. I've heard that most recurrences are found by physicians at check-ups. If that's true, our current schedule gives us the best shot at catching it quickly if it does come back.

I think the real reason for my lack of scan dread this time around may be the very positive developments in the treatment of advanced melanoma in the last two years. Since Robert was first diagnosed, ipilimumab has been approved by the FDA and has become a standard treatment. New anti-PD1 therapies are in the pipeline, some fast-tracked by FDA and others coming along in the pipeline. Patients continue to have positive responses to TIL therapy. Combinations and progressions of the various treatments for Stage IV disease are  keeping patients alive longer, and some N.E.D. survivors remain that way for many years – time they did not think they would have with their families, in productive pursuits, living their lives and enjoying every day.

We have come a long way since that time (only two years ago? it seems like forever) when we were reading and hearing six-month to one-year survival estimates. Of course we have a lot of information we didn't have - no longer thinking of Stage IV, no longer looking at "metastatic" in the description of Robert's condition. Even so, if ever there could be a demonstration of progress I’m sure this is it.

But I think the most hopeful change is in the oncologists' toolkit for fighting the disease. To all our family and friends – and all the melanoma warriors out there fighting with us – whatever you are doing to contribute to the battle against melanoma, please keep it up.

Thanks and love!


So glad to hear

Hazel, I follow your story (and Robert's!) and I often see you on the MPIP page.  I'm so so happy to hear you got clear scans!  That is wonderful news. I too have been following all the new treatments (the PD-1 Results presented were simply amazing and statistically out of this world for drug trials).  The ACT therapy can have some incredible results as well but far less publicized.  We are right here by MD Anderson so that comforts me as well and the immunotherapy is such a different attack on the disease then chemo.   So glad you guys are getting such good news!

Jackie, thanks for your good

Jackie, thanks for your good wishes. I know your husband is also on "watchful waiting" so you understand how important that N.E.D. result is. Here's hoping it continues for you too!