Well another year has come and gone; my physical condition is more or less unchanged since my last post about a year ago. Visit the doctor every 6-8 weeks and that is about it. My MM markers (M-spike, kappa, and Igg) are about the same as they were a year ago; and I still take 10 mg of dex every four days. The dex, however, appears to be causing my blood glucose to rise and I started (in Feb.) to take medication for this. Nevertheless, still living a more or less normal life and traveling some.
Well, I still doing well. Had to have surgery on my knee a few weeks ago; I am now in PT. Comes from jumping off my high school more than 50 years ago. Still taking 4mg of dex every 4 days; that is all. When knee recovers, I plan to go back to my exercise program; but probably will have to wait another month or so. No bone pain; however, I continue to tire easily. CBC blood counts are in normal range; so is creatine. Last M-spike was 1.3; Kappa is 4.20 mg/l; Igg is 1672 mg/dl. Not much change over the past year. Will continue on current course for the time being.
March 30 marks my 5th anniversary of my official diagnosis of having MM (although I first went to doctor about 6 weeks earlier). My most recent MM markers (3/5/2014)are Kappa Light Chains @4.45, up from 3.77 on 1/21/2014; Igg 1744, down from 2014; and M-spike 1.4, down from 1.5. One marker up and two down. Blood pressure and blood work is normal. H/O does not seem concerned and I will stay off chemo but continue 10mg of dexamethasone every 4 days. On 2/12/2014, I had a full body scan set of x-rays (19 images); no new lytic lesions were seen and the old lesion on my right femur was no longer observable. Basically my bones are in better shape than they were 5 years ago prior to my 2-year treatment with Zometa (completed in July 2011). I have now been off chemo for 3 2/3 yrs. I continue to have some neuropathy in my hands and feet; but I am in no pain and can get about ok. So far; there are no issues of pain; no broken/fractured bones; I do tire easily and commonly take a nap in the afternoon.
It’s been a while since I have last posted and an update is in order. Last April, I began to have some stomach problems in that I would feel full after eating a small amount of food and eventually end up having to induce vomiting. This resulted in significant weight loss (about 30 pounds). After an endoscopy in June of 2013, I was diagnosed with a parasophogeal hernia where my stomach had slid up into my chest cavity. At this time, I stopped taking dexamethasone. Surgery was performed on July 16 and it took about 2 1/2 months to recover where I could eat normally and do everyday things. Dropping off the dex, however, caused my IGG, K Light chains, and M-spike to rise significantly. However in mid September, I went back on dex and these myeloma parameters began to decline. Here are the results: August 2, 2013: IGG = 2205; September 16,2013: IGG = 2188; October 30, 2013 = 1916; this is a 13% decline in 3 months. August 2, 2013: KLC = 3.68; September 16,2013: KLC = 4.35; October 30, 2013 = 3.52; this is a 19% decline since mid September. M-spike stayed constant at 1.5; however, gamma globulin (of which the M-spike is a part) decreased about 19% between August 2 and October 30; this would seem to suggest that the M-spike is starting to decline. I am back on dex at 10 mg/day every 4 days (i.e., dex day with no sleep and then 3 nights of sleep). I will see the O/H on December 17 and we will review the above parameters again to assess if the declines continue or start to rise. Until then, I will continue to take the dex every 4 days.
Dull day; but I did get the Corvette up and running and took it out for a spin.
Nothing much to say; back from 3 weeks in Europe.
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.
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.
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.
Had labs drawn yestrday at 8:00 am. Exclusive of M-spike, results were back by 2:00 pm and e-mailed to me. IGG went up significantly; however Kappa light chains went down and have been going down since last fall. M-spike results generally take 5 working days as this analysis has to be sent to a differnet lab (only about 1/4 mile away however). Have appointemnt with O/H on Tuesday (March 13, 2013). This will be close to my 4th year aniversary. Today was dex day (10 mg/2 times a week). I feel good on dex days but I don’t sleep during the night. Drove the Corvette to the horse farm country west of Ocala; beautiful sunny day. Celebrated with BBQ ribs for lunch. Will give a better update after my upcomming O/H visit.