I've been coming to this board since 1998 when I was first diagnosed stage 3. As one poster below said, I haven't been on the board much because I've been busy living my life but I try to post when something significant (good or bad) happens. This time it's something good. I hope it gives many of you hope and insight to how these immunotherapies work. Here's a brief history of my journey:
In 2012, MM was found in my right lung which was surgically removed. In 2013, MM came back in both lungs. I then tried the following drugs: Ipilimumab (didn't work), Zelboraf (worked a little, another right lung tumor disappeared but then left lung tumors grew), Dabrafenib and Mekinist (didn't work), Keytruda – worked but with complications.
I was on Keytruda for 9 months. While I was on it, my first 2 PET scans (3 months apart) were getting worse and a lot of metabolic activity but my oncologist said to be patient so I stayed on it. At 9 months, I had GI problems which turned out to be 2 bacterial infections so I had a CT scan and stopped the Keytruda. A month or so later, I had another CT scan which showed decreased turmor burden in the lung. I then had a PET scan and got the same results, the largest tumor was almost non-existent and very little metabolic activity in another small tumor. 2 months later, PET scan showed No Evidence of Disease (although my Dr. said No Evidence of "Active" Disease).
Both Mayo and my Oncologist say it is likely that the first 2 PET were actually due to internal inflamation and not tumor growth. When I got the infection and stopped treatment, things cleared up and we could actually see the tumors disappear. I never thought I would see this day, being NED, but have hope for all of us dealing with this terrible disease. Good luck everyone!
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