Hi everyone. I used to be RK66 but I forgot my password and the email I used 3 years ago, so meet the new me....RK69.
After 6 years of watch and wait I finally went into treatment on May 1st of this year. Boy, did I go into treatment. My lymph nodes were swollen all around the back of my head, under my arms and in my groin. My platelet level was 6 and I temporarily had double vision. Needless to say, they put me in the hospital and then suspected I had lymphoma and said if I did, I’d only have 2 to 6 months to live. I don’t have lymphoma but I do have leukemia cells in my spine and have been receiving spinal taps or lumbar punctures for the past three months. The malignant cells have all but disappeared in my spine and I only have two more treatments and I’m done. Yay! I am currently taking 560 mg of Imbruvica hoping to be reduced to 420. I’m doing well and my doctor says I’ve had a “remarkable turn around”.
Anybody else get tired from Imbruvica and have joint pain or leg pain from it? I also have what appears to be a rash in different spots on my body. Apparently, they are bleeding spots. I am feeling ok and doing well but I have come to the conclusion I will never be what I used to be and I need to accept my new reality which isn’t so bad. By the way, I did get my eyesight back.