Thank you, Valerie.....The more I think about my experience, the more I recall and wanted to share with you.....Although I was very inexperienced with cancer and the process that followed the diagnosis, I asked many questions, and when anyone asks for my advice after being diagnosed, I tell them to ask questions and take notes, and when possible, bring someone with you to appointments for extra ears/notetaking.
I always say there is no stupid question, especially when it comes to your health or that of your loved ones. You learn quite a bit in waiting rooms too. I would hear about patient issues with their ports, so that was probably the most frightening thing for me when I knew I would need infusions. I was told I would need 4 weekly infusions to start, so I thought, "okay, why would I need a port for that?" and asked the team if I could just have an IV in 4 different locations each week. And the answer was 'yes, although a port is easier' - "Easier for whom?" I said. So my best experience was an IV line in the top of my forearm! I did not need to have a port surgically inserted OR removed! Should my future require more infusions, I am willing to have the port, but am glad I worked around it at that time!

Your response to Rituximab is remarkable and cause for optimism.
At time of my diagnosis one node was 5cm, one 1.6 and another 3 enlarged but under 1.5. Biopsy was done on a piece taken from the largest. I am hoping for little change with recent CT but preparing for a different result.
Wishing you continued stable results and that calcium increase a blip.
Best of the season to you.

The Rituximab infusions were intended to reduce size & control the growth of the lymph nodes. I had 5 that were 2.5 to 3.5 cm in size. Of the 4 that remain after the biopsy, the 2 largest are 1.5 cm after 7 years following Rituximab. My calcium level had recently exceeded the normal range. Since this can be an indicator of the cancer being active again, I am monitored more frequently (every 4 months rather than 6 months). Because the size of the lymph nodes have not increased and because I feel well, I continue with "Watch & Wait". I am comfortable with this decision.

Based on my experience when first diagnosed, if your oncology team recommends a full chemotherapy regime as a first line treatment (and if you don't have symptoms other than enlarged lymph nodes presenting CD20 positive cells), I would first ask about Rituxan (Rituximab) infusions only. Also ask if the team has ever treated the NLPHL subtype of Hodgkin Lymphoma. I know the treatment decision also is determined based on the location in your body. I was told it would be different if the disease appeared above the abdomen area and in the diaphragm and surrounding areas. Please stay in touch! Wishing you the very best!

Thanks for the info on your treatment. I’ve read about the immunotherapy option but haven’t discussed it with the oncology team so far. Your experience sounds very hopeful.
Yes I have Nodular lymphocyte predominant and have CD 20 positive cells.
Appreciate knowing someone else with similar presentation and type.