• September 2003, Zevalin treatment was administered. This treatment cost $37,000 for one infusion. My counts were monitored for several months as it keeps working for a long time after receiving it. My platelets dropped causing me to have nosebleeds, but never dropped low enough to need a platelet transfusion. I was scheduled for check ups every 3 months with my oncologist to check my progress. A Ct Scan showed all but one node was gone. I still had a "hot spot" in my groin. I continued to have regular monitoring but was allowed a few months of peace.
• May 2004, significant growth has been detected on the latest CT Scan. The Zevalin had not worked. We were scheduled to start 2-CdA (cladribine) in June.
• June and July 2004, I received Cladribine once a month for 7 days straight infusion at home. Despite my fear of being unable to make it, I was able to participate in my daughter's wedding in July. I was so very grateful for that moment.
• August and September 2004, CT Scan showed no improvement in nodes. The treatment was not working. My counts dropped dangerously low and I now have to be monitored very closely. I receive shots of Neupogen and Procrit to boost my white and red blood cells each week. My platelets drop to 29 (normal is 140 or above) and I needed a platelet transfusion. A couple of weeks later my counts have dropped again and my hemaglobin has dropped to 8 (should be 12 or 13) causing me to need a blood transfusion. My oncologist talks of sending me to a major cancer center somewhere.
• October 2004, after talking with my insurance company, we decide to go to Rush University in Chicago for an evaluation for a stem cell transplant. My records are being sent and we will be scheduled for an evaluation soon.
During all these treatments, there are noticeable side effects. I continue to have extreme fatigue. I am tired all the time. I have lost much strength and am not able to perform any type of work. I was approved for Social Security Disability for relapsed Non-Hodgkin's Lymphoma. I have suffered from recurrent ear infections, which caused me to have tubes placed in my ears in 2002. Chronic sinus infections, Bronchitis. both common occurrences that leave me drained. Right now I have packed maxillary sinuses, which was revealed on my last 3 CT Scans. I also have a sore throat and have had this for about 2 months now. I am to see an Ear Nose and Throat doctor for this at the request of my oncologist.
Complaining or even talking about my health journey is honestly not my cup of tea. I am much more comfortable giving than receiving. I am very grateful to be surrounded by the love and support of each of you within this community and at home. It is my hope that my story will inspire someone else to maintain courage and to continue the battle. From my family and myself, thank you for reading.
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