Five Years

Well, it has been a long time since I have posted anything as I am sure you are aware. I suppose the old cliche, no news is good news is sometimes true. At least, it is pretty much true regarding my disease. It (the monoclonal protein which is abnormal) has hovered pretty much at 150 mg/dl (as opposed to measuring in gm/dl as in .15 gm/dl) for over a year which is good. However, zero is normal and we are still looking for that. It was 4 gm/dl when I was diagnosed. I am blessed with continued survival!



My local hematology oncologist told me he considers me to be in "remission." He is definitely not ignorant about my disease so we will say he is being nice. We can't really accept anything above zero as "remission." We would also want to be drug free with no disease progression to consider the disease as exhibiting a "Complete Response."



You see, the disease is incurable to date. Thus, no such thing as remission. Besides, many so called remissions are really cancer cells gone dormant which continue to fly below the radar so to speak. I'm just thankful we aren't having to fight disease progressing in the opposite direction from where it is headed now. Believe it or not, the m-protein is still creeping toward zero ever so slowly which is good.



We reduced the dose of the expensive cancer drug Revlimid from 15 mg to 10 mg which has made a noticeable reduction in the tiredness, inability to concentrate, and neuropathy. We have gone from one huge dose of 20 mg dexamethasone a week to 8 mg on Monday and 8 mg on Thursday which seems to help the energy level and reduce the depth and duration of the dex crash. However, fasting sugar level is rarely below 100 now. It used to be rarely above 100 (assuming my Ultra2 meter isn't lying to me.)



It has been a long time since I have posted AND it has been FIVE years since my diagnosis. When I was diagnosed, median survival was three years. Now it is around seven years. So, in a way, we are back at square one :)

Thanks for checking in on me from time to time!