Mar 14, 2013 - 2:59 pm
My husband was diagnosed with LGL Leukemia 14 months ago (Jan, 2012). We had just lost his Dad to Multiple Myeloma four months previous. It's all been overwhelming. I would like to reach out to any LGL patients, caregivers, spouses etc. It's been very difficult. We thought we were on the right track with Methotrexate and prednisone, but were told yesterday (march 13, 2013) that his hemoglobin took a dive and the LDH spiked - more than doubled from normal range just this past December.
We are still in a bit of shock and down in the dumps. But we have twin 3 1/2 yr old girls who need us. We did not find each other until we were 35 so we had a bit of a late start. He is now 41 and is quite young to come down with LGLL. Our doctors at OSU James Cancer Clinic are great. But we are left feeling that this damn cancer will always with be with us. The doctors keep trying to reassure us that this is a cancer you live with, and not die from. Right now it's hard to believe that.
If you would like to share your experience with treatment for LGL I'd appreciate it. I'm feeling quite alone and I don't want to show my husband just how terrified I am.