dgfoto Member Posts: 2
edited March 2014 in Rare and Other Cancers #1
I am a 72 year old male - first generation Greek descent - Father had a kidney tumor and passed at the age of 79, Mother had nothing but arthritis and she died at the age of 94. My sister is a cancer survivor, still going strong at 83 but my brother succumbed to heart disease at 78. I hoping I'm blessed with my Mother's heart!

In December, 2004, I went to the hospital with pain on my left side just below the chest (later to be identified as being caused by shingles). Full torso scan, EKG and blood tests were taken - scan and EKG was normal - blood tests were not. Shingles were eventually cured but the blood tests eventually led me to a hematologist/oncologist (Dr. Paul Chung). Long story short: a year later after repeated blood testing and a bone marrow biopsy, I was diagnosed with CLL (Chronic Lymphocytic Lymphoma/Leukemia). I was told that this was a cancer that could last for many years until something more serious took over! So, I did what any other computer nerd would do, I began tracking my blood tests on a spreadsheet which my oncologist found very helpful. Over the next couple of years my blood levels remained relatively stable - which meant there was no treatment protocol as yet - but we kept an eye on them on a three month interval.

Since January 2006, my hemoglobin was slowly headed below 10.0 and I was found to have (CAD) Cold Agglutinin Disease (my body creates antibodies containing an enzyme [CD20] that destroy Red Blood Cells). I was sent for a million blood tests at Cooper University Hospital and consulted with Dr. KANU SHARAN. Funny but serious side of this whole thing with the CAD is that I have to keep myself warm. It was suggested that I move to a warmer climate - well this year, there was no warm climate in the US, except of course Hawaii - so I stayed in New Jersey with the promise that I would do the best I could to keep myself warm. (CAD is exacerbated when outside temperature on your skin gets to below 70 F.)

When my blood levels got to 9.4, In November of 2009, I was given a transfusion and 4 chemo infusions of RITUXIN (each one week apart). The rituxin worked well, the chemo center at Southern Ocean County Hospital was a great place to get treatment and since than I have been relatively clean of CAD. I still have CLL, my Hemoglobin is hovering about 9.5. Because of the cold weather here in New Jersey I'm told that the CAD could return in three to six months. Currently I am on biweekly blood tests for another six weeks.

Well - that's my story - so now we'll see. Thanks for listening!

Dennis F.