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This is my first post in several weeks. When I last wrote, I was diagnosed with a skin mets recurrence. Read on...
My first recurrence was in Summer '02. Onc immediately started me on Herceptin, then radiation (which I didn't have the first time around), then added Taxotere. In the fall, shortly after the Taxotere was added, I got a rash on my left shoulder, my recon breast (left) and on my abdomen near my DIEP scar. A biopsy, taking tissue from my abdomen, indicated that the rash was caused by meds. The cream the derm prescribed had no effect...in fact, the rashes got worse. During this time, I saw a posting on the bc message board that suggested a site showing skin mets. My rashes looked very similar to the pictures there, but none of my doctors thought it was skin mets. The Taxotere was finished in Jan '03, but the rashes continued to flare up and spread.
In July of this year while putting on the cream, I found a small nodule; also on the left. I immediately had it biopsied along with a red spot near the breast. Both came back positive. My onc recommended that I see an onc in the city (I live on LI; we always refer to NYC as "The City.") at Sloan Kettering who, after spending a good deal of time with me, agreed that my onc was giving me the right treatment for skin mets; ie: Herceptin and Xeloda. Apparently it is rare to get skin mets as a first metastasis. Drs were surprised, but thought it was pretty cool to have a visual monitor of how helpful my treatment was.
In August, when I'd settled into my treatment routine, I decided to find a derm (I had found another local guy I liked) with a really great reputation and I did. In the city again. That's when we all got a surprise.
He diagnosed the rashes as something he sees once every five years or so..."paraneoplasic syndrome." Threw us all for a loop. It's a rash that's triggered by chemo or cancer but is not (necessarily) in the same place as the cancer. It's the immune system going into hyper-drive and attacking areas it should leave alone. So all of the "monitoring" benefits we thought we had went right down the drain. We stopped the Xeloda several weeks ago and did Pet and CT scans; two more biopsies...all turned up clear. Derm put me on a cortisone ointment for two weeks...just for my back. The rash improved in days. Then I used the cortisone ointment on the breast and abd too; same results. Now I'm using Protopic (non-cortisone) and there is still, tho' slower, improvement. (Derm wouldn't Rx cortisone with a skin mets diagnosis; cortisone compromises the immune system.)
So where am I now? I wanted one more biopsy (felt a lump in the original spot) and am waiting for that result. If it's negative, I'm going to allow myself some cautious optimism but remain vigilant!
Love and best wishes,
Mary Helen
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