ALCL

My husband was misdiagnosed with Lyp and it was actually ALCL all along. By the time we had someone to diagnose he was Stage 4B with ALCL Alk negative. I hope you research and only find the best to help you. This is so rare that many doctors don't know how to treat it.
We went through the Donor Transplant April 9th 2004 because he was refractory and was not in remission when they did the transplant. All is well so far and we have other battles to fight right now.
I noticed you posted in Sept. hopefully all is well

I was diagnosed with ALCL in Oct. 2004. My test results showed some characteristics of systemic and some of cutaneous. I was treated with 6 rounds of CHOP chemo and after the first 3 all my scans showed no cancer anywhere. Three weeks and 2 days after chemo stopped another tumor popped up on my arm just below the first site. It grew rapidly in one month and I just started radiation last week. So far it's shrinking nicely. This has really been frustrating because there are no definite results. They decided it was systemic because the ALK tests were positive and the Fish studies that were done came back 83% positive. I think the next step for me is going to be a bone marrow transplant.