Rare Cancer Support Forum

After not understanding that the little lump in the flesh of my upper arm actually was the beginning of Merkel Cell Ca, I finally got my FP doctor to look at it. He referred me to a gen'l surgeon who did a biopsy. Merkel!! I ended up at a nearby major university hospital for excision, since other surgeons were concerned over the "compartmentalization" of this (now pretty big)tumor on my arm. Excision went well, with sentinel nodes taken. The resection site healed well under perfusion therapy, but one sentinel node was positive. Later, as the resection site was being changed to a skin graft site, resection of more lymph nodes was made; 11 of 22 were positive. Later, when the skin graft dressing was being changed, I found a new tumor right on the rim of the original crater. Also, I discovered a hard knot under my other arm/armpit, and both the new tumor and the hard knot was sampled by Fine Needle Aspiration, both were Merkel positive.

Now I've been escalated from State 3 to Stage 4 and am being pushed into chemo and radiation. I've being overwhelmed! I'm definitely "not sure" that chemo is a favorable treatment choice right now, instead I'm going to visit that university's "Merkel medical expert" in a few days. I want to investigate a less-well-known therapy called Bleomycin.

Is there anyone under similar circumstances who can offer advice, Right Now, since I believe that time is of the essence?

Thanks.