po18guy

About Me

Bio

At age 56, I developed fever, night sweats and a lump behind one ear. My physician had just retired, so I consulted with his replacement, advising that I had a family history of cancer (60% mortality rate on the paternal side). Doctor thought I had a virus, and blood tests determined that I had mononucleosis - for the second time. I went on my own to my immunologist, since I knew that my immune system had failed. He was first to mention lymphoma, but his biopsy schedule was too far out. My wife called and found an independent surgeon who had worked with Fred Hutchinson. He was available immediately for biopsy. He told me to "run for your life" if I ever heard the word "wait" from a doctor. He referred me to a local oncologist, who had just gone on vacation. I saw his senior partner, who performed a bone marrow biopsy, but still thought I had a virus. He wanted to "wait".

My wife had already scheduled a consult with a leukemia/lymphoma oncologist at Seattle Cancer Care Alliance (SCCA), the treatment arm of Fred Hutchinson. He agreed to treat me and ordered more sophisticated testing on the biopsied lymph node. He also performed another bone marrow biopsy. I was diagnosed with stage IV PTCL-NOS in July, 2008. At that point, cancer cells were present in my bone marrow and I had at least 54 malignant lymph nodes dispersed throughout my lymphatic system. I immediately entered treatment at SCCA, receiving CHOEP (aka EPOCH), then GVD. I went into apparent full response, but the disease immediately relapsed. The only treatment that remained was "salvage therapy" and best wishes. Providentially, at that point a clinical trial was offered to me. I enrolled in the trial of Romidepsin (aka ISTODAX, chemical formula FK228, or depsipeptide).

I went into full response. The median time of disease response to Romidepsin is 13 months. I am now in my 25th month of full response, being one of seven PTCL-NOS patients worldwide who remain in full remission. I no longer doubt the mercy of God or the power of prayer. I would not have survived even 2008 without the disease responding to treatment. Yes, hope is on the rise.

History

Member for

1 year 13 weeks