Hi! My name is Shari. My husband was diagnosed in Aug with

Hi! My name is Shari. My husband was diagnosed in Aug with stage 4 Classic Hodgkin's Lymphoma. We are both 39 years old and been married for 11 years. A brief history: He first started showing symptoms of a lung infection in the early months of 2014. His case was escalated later in the year to a pulmonary specialist after several rounds of antibiotics and not feeling better. The first CT scan came in December 2014 and showed a large infection with nodules inside his lungs. The initial diagnosis was a lymphoproliferative disorder inside the lungs. After four surgeries in the chest they still could not find nor determine what was causing the recurring infection and enlarged lymph nodes. The last lung surgery was in July 2015 at the Mayo clinic.
Rewind back to early 2014: At the same time he developed the lung infection he noticed both legs started swelling. During this time he also developed a large nodule on each of the shin bones (both legs), which were virtually identical in size and location on the legs. He immediately was sent for ultra sound and an MRI on the legs. After speaking with several doctors, we finally found a specialist to help us and he advised that the swelling and nodules were due to trauma to the area over the years and should go away over time with pressure. Nodular fasciitis was the term used to describe the legs. Playing soccer for 20 years was the likely cause of the nodules.

Every doctor we met with seemed to think the two (lung and leg) were not connected, until we met with Dr. Witzig at the Mayo clinic. He ordered biopsies on the lungs and legs immediately after our first visit. The lymphoma was finally found in the legs and was reason for the sarcoidosis effect and recurring infection in the lungs. He started ABDV treatment in September. we completed 2 cycles and returned to Mayo for follow up Pet scan. Thankfully, all the spots in the chest and legs are gone with no evidence of disease. Since he is considered stage 4, he will need to do 6 cycles total. We just completed treatment 5 this week. I am happy to have found this support group. My emotions are all over the place and I am having a hard time. It will be nice to share with others who are sharing a similar experience. We are have a 9 year old son and 11 year old daughter. I pray so hard for a full recovery. Thank you for letting me share our story.

hugs to you! My sister was diagnosed at stage 3b after a year of runaround from doctors who ran the gamut of saying she was imagining her symptoms, to one quack who said she had "mock tuberculosis". The diagnoses was a relief because at least we knew what we were dealing with. I am glad the treatments are working for your husband. Please keep us updated on how things go!

How are the lungs feeling after treatment? I finished 6cycles of abvd 2 months ago for Hodgkins but still have pains in my ribs/lung even though my pet scan is clean. Just wondering if anyone else has this experience. The doctors don't seem too concerned but want me to get radiation anyway. it is more worrisome than painful. Thanks and best of luck!