4 years with MM--Taking Dexamethasome

Immediately after being diagnosed with MM in March of 2009, I started on program of 10 mg/wk of dex. This continued into the Fall of 2011, when I increased dosage to 10 mg/2 times a week. I had gone off chemo in the summer of 2010; and dex was the only medicine I was taking. The rationale for increasing the dex dosage was try and keep Igg, M-spike, and kappa light chains at relatively low levels. Today is dex day. It starts with 10 mg taken orally between 8-9 in the morning. I quickly begin to feel good and energetic; this lasts for about 5 hours at which time I feel somewhat sleepy and I take a nap. After the nap, I feel wide awake and I know I will be up all night in which I watch movies on TV or on the Internet. About 5 am, I start feeling sleepy again and sometimes I can fall asleep for 1-2 hours. I feel sleepy most of the day; sometimes I can nap, but mostly I don't. That evening I take a single Advil PM and I will fall asleep about 9:00 and sleep like a rock until the next morning. After 3 nights of good sleep, it is dex time again. Basically it is dex day, 3 nights of sleep, and then dex day again. Staying up all night is not ideal; however, I just try and make the best of it. At this point I'm used to taking the dex and just regard it as something I can do indefinitely. Overall taking dex is not a significant issue in my life.

4 years with MM Part 2

I started chemo with Velcade + dex on 4/13/2009. Prior to starting chemo my numbers were Igg = 3982, M-spike = 2.7, and Kappa LC = 96. After the first cycle, the numbers dropped as follows; Igg = 2176, M-spike = 1.9, and Kappa LC = 41. After the second cycle, the numbers dropped still further to Igg = 1623, M-spike = 1.22, and Kappa LC = 30.43. After the cycle, the numbers dropped still further and I was happy as clam: Igg = 1555, M-spike = 0.9, and Kappa LC = 30. Up until this point I considered chemo as a "walk in the park"; but with cycle #4 ,which began on June 29, all hell broke loose. During this cycle I began to experience significant neuropathy, particularly in my feet. Also once the cycle was completed, I broke out in rash that covered my arms and legs. Because of the neuropathy and the rash, cycle #5 was cancelled. A revisit to my O/H in late July had the following numbers: Igg = 1462, M-spike = 1.2, and Kappa LC = 26.42. Cycle #5 was postponed to be held abeyance. During this same time period, I continued to take Zometa to strenghthen bones. The only negative with the Zometa was the slight pain in the sternum for about 24 hours after infusion. In early July of 2010 (about 2 2/3 years ago), I discontinued Velcade chemo. I did continue Zometa to the early summer of 2011 (25 total infusions); Zometa was discontinued in the summer of 2011. At present (March 4, 2013) my numbers are Igg = 1681, M-spike = 1.4, and Kappa LC = 29.1; WBC = 4.2, Creatine = 1.02, Total Protein = 7.8, and calcium = 9.2 (all of these CBC values are in the normal range). I still have residual neuropathy in my feet and I still get tired quite easily; but otherwise I lead a generally normal life; I am not in pain. I take 10 mg of dexamethasome every 4 days; the des keeps me up most of the night; but generally on those days that I take the dex I am more productive.

4 Years with MM---Part 1

March 30 is my fourth year aniversary with MM. I first went to my GP on February 23, 2009 complaining of a gait problem. It felt as I was forever walking on a mattress; no pain only an odd feeling when I walked. The GP didn't know what the problem was; however, she perceived I was not faking; thus she began a testing program. Simple blood and simple X-rays gave way to more complex blood tests and cat scans/MRIs. While this was going on, I literally could feel strength flowing out of my body. About 4 weeks into the testing program, elevated IGG, M-spike, and Kappa Light Chains along with a lesion on my upper right arm were detected. At that point, I was referred to a H/O for follow up. Here the H/O repeated much of the blood testing; again when high IGG, M-spike, and Kappa Light Chains were detected; a bone marrow analysis was scheduled. The bone marrow results took 5 working days to come; but they showed about 30% involvement. I got these results on March 30, 2009; this is my "official" diagnosis day. Within just a few days I was on Velcade and Dexamethosome plus Zometa to strengthen my bones. Overall I have never experienced any pain; and I have had no broken bones. I still have gait issues along with some managable neuropathy; my biggest complaint is weakness or lack of strength. I haven't spent the night in the hospital nor have I had truely bad days. My GP was initially stumped but she didn't give up. Continued testing resulted in diagnosis. From start to finish from the first doctor visit to the "official" diagnosis was about 5 weeks. Over the next few weeks, I will review for this blog my personal and treatment history.