Feb 19, 2013 - 11:03 pm
Hello everyone! I have been reading the boards and thrilled to find this resource.
My husband was diagnosed with RCC 7 years ago. Had a nephrectomy at Hopkins and for 5 years, all clear. On the 5 year check in, they found a spot on his lung. Summer 2012, he had a wedge resection by Dr. Yang and again all clear ... until November. They found a fast growing tumor in a lymph node near his heart. Fast forward - Dr. Hammers at Hopkins - cycle 1 of Il-2 in December 2012/early January 2013. Our month out scan showed the tumor had not grown, nor had it shruck. So we go back on March 7 for another scan and will begin cycle 2 of IL-2 in March. Fingers crossed!
I am wondering if anyone knows of support groups in the DC/metro area for caregivers (we live in Rockville, MD). I am struggling with how to explain what we are going through without going into too much detail. People don't understand why there isn't a definitive start and top time of the treatment. Why this isn't like regular chemotherapy. Family members want to help out but there is nothing that I can think of to ask them to do, other than offer emotional support. I guess my surprise and biggest struggle has been how some people react to our situation. Some have pity. Some act like nothing is happening. Some act like we are imposing upon them (people at work who are frustrated by the uncertain schedule of IL-2). I am working hard to stay strong, to be focused on my husband's recovery and be grateful for all that we have -- but I realize that I need a place to vent and get some coping tools.