Monthly Light Chain Count

The month has really gone by fast. I really enjoyed my cruise to Alaska and to be honest didn't think about being sick or what has happened this past year. Only the fact that I had to take all my pills each day did the past year and a half come to mind. Coming home and facing the daily, weekly and monthly demands to take care of this body. This includes chemo, doctor appointments and blood work.

Part of taking care of my body is to have monthly blood draws to check lambha light chains. In May as I reported, my lambha light chain count finally went below 100 to 96.5. I took the test this month on June 8th and Monday received the results. 80!!!! Can you believe it? 80!!!! I was so excited I jumped off the table and gave Dr. Akthar a big hug. On Tuesday, I met with Dr. Schrier at Stanford University for my checkup. Dr. Schrier is the Amyloidosis specialist at Stanford. He was happy with my results but is still very cautious. I asked again for a break from chemo and Decadron. The answer was NO! He said that there are a total of 75 patients being treated at Stanford with Amyloidosis. Only three have had transplants. Of course those three are Dr. Kevin, Yolanda and myself. He said each patient is different in type of
light chain (Kappa vs Lambha) and how we respond to the types of treatment. Some patients are on Decadron/Velcade or Decadron/Revlind or Decadron/Malvalyn (spell?). He said all of us are responding differently. He feels I should continue with my current treatment until my numbers are the lowest possible. The normal range for lambha light chain count is 5-26. I feel he is right that I should continue until the count is as low as possible. I can't take the chance of it going up after doing everything I possible can to get low. I don't want to face another stem cell transplant because my count is out of control.

Yes, I'm disappointed that I can't have a break but I'm also very blessed that my count is still going down. There are many others out there who have not had the same results and are fighting for their lives. I have to remember this is a fatal rare disease. It can turn on you at any time and destroy organs.

My life has changed but I'm still here enjoying moments. Moments that take my breath away. Moments like seeing my little grandson smile for the first time, enjoying my cruise to Alaska, spending time at the trailer with friends. Thank God for these moments!

What's happening today. Well, I'd like to get over this cold I have had for over two weeks. Wow this is awful! Being immune suppressed it takes my body time to feel better. I hate being sick. I can't see my little grandson and I feel terrible. I'm also having problems with my back. Today I saw a doctor who has ordered an MRI. She thinks I have tissue damage which is causing the pain. The pain is so bad it wakes me up in the middle of the night. Hopefully, nothing is wrong but I have to wait until the results of the MRI. Just one more thing! This is what I'm talking about. I just wanted a break from everything!

Enjoy every moment!

Love,
Debbie