I find that adding these posts are good for hope and to help others learn about the potential responses, timing, rates and so forth.
Here's my stats: Dx stage 2 on 6/3/14 (mel on toe). Dx Stage 3 on/about July of 2014 (SLNB – surgery to remove part of toe). Did not do interferon – close follow up/scans every 3 months.
Dx stage 4 on 12/23/14 (severe discomfort in back, chest and shoulder). Scan revealed mets throughout chest bone structure including breast plate, ribs, back and spots on left leg. Mets on liver.
Treatments:
Xgeva: Jan to present
Ipi: Jan-April 2015. Limited response, but growth of mets – Significantly reduced pain related to bone mets.
Keytruda: April – Present.
Scan in July 2015: Stopped growth. Significant sclreosis of bones and potential new bone growth. No pain. Still some uptake of tracer in bones. Liver mets appeared slightly larger but difficult to tell.
Scan in October 2015: Still not significant growth. Major sclerosis and photopenia in bones – could be reaction of Keytruda/Xgeva killing mets and building bones back up. Stil some tracer uptake w/ bones. Suggestive of partial response. Liver mets appeared slightly larger but could be inflamed.
At this point, Doc insisted on continued treatment.
Scan in December 2015: Same results for bones, but no more uptake. All tracer uptake at normal levels. No uptake on liver – no mets noted. Suggests complete response to therapy. NED.
As of right now, I'm NED and my wife and I are thrilled. We went through a long process to get here and were very fearful as each scan passed w/o reduction to the liver mets that we would never get here. Liver mets are noted to be difficult to eliminate and most keytruda responders seem to come quickly. But, we proved to be quite different.
It's a good way to start 2016.
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