I was having fevers, chills, nights sweats and rapid weight loss in the summer of 1988. I was diagnosed with Hodgkin's Disease, stage 4BE MC. When I was diagnosed, they only used 4B. After reading your story, I was definitely far advanced with my disease. My doctor to this day tells me how lucky I am to be alive. My bone marrow was involved and also the first part of me to go into remission. I was 29 years old when I was diagnosed.
After 20 treatments of ABVD and 4 MOPP, I have been in complete remission now for 15 years.
I had a really bad reaction to MOPP so they stopped it after the first 4 treatments. My treatments were once every two weeks at an outpatient clinic at the hospital.
In October of 2003, I noticed some large bumps on my
skin that became infected. I called my dermatologist and was able to get in to see him in February of 2004. He took a biopsy and I was diagnosed with LyP. He then sent me to the U of M Hospital in Ann Arbor Michigan. They recommended
treatment and sent me back to my dermatologist, who refused to treat me. I have been unable to find a dermatologist to treat me with Methotrexate for LyP because of my history of Hepatitis and Hodgkin's Disease. My insurance does not cover the three doctors in the Detroit/Ann Arbor area that treat LyP. So, I am not treating this in any way. Topical creams have not worked and I have 30+ lesions on my skin at any given time.
I have also experienced decreased
liver functions as a result of the chemotherapy that I received. I am basically in good health except for this darn skin disease, which you know has no cure. I am not sure what options I have left except to pay for treatment on my own, which is very expensive or just live with it.
Editor's note: There has been no defined link between LyP which is now considered a cutaneous (skin) form of Non-Hodgkin's lymphoma.
