Author: Beth

I was diagnosed with MM in January of 2003. I underwent various treatments, including thalidomide/dex, revlimid/dex, dex alone, a clinical trial of CNTO 328, and Velcade, Doxil and dex until late August, 2007, when I had an autologous stem cell transplant after high dose melphalan. I experienced what's known as a very good partial response (VGPR). Since then, my myeloma has been stable.

Late night

Last night we worked on programming a router for DSL. I made a mistake that made us have to stay several hours longer than we really needed to. I hate when I do that! I was in a fog though, from being tired and on dex. It’s not really conducive to doing good work. We left about 3:30 am, and I was able to sleep almost immediately when I got home. I slept until after 2:00 this afternoon! I could go back to bed now, but I hate wasting so much sleeping.

I start my 4 days off of dex tomorrow. Thank goodness. I like the days off. After a few more months, I’ll go to taking dex for just 4 days a month (40 mg each day). That will be a relief. One thing dex does do though, is help with aches and pains. I’ll notice that, for sure. I have some arthritis which will ache more.

My blood sugar has been good this time around. Still high for me, but better than in the past. For example, when I woke up this morning, it was 102 mg/dL. There have been times in the past when it was near 200. Usually, I can expect it to be somewhere between 75 and 90. After a meal, it can go to 130 or so. When on dex though, look out! It can go as high as 230. I keep on walking and avoid simple carbs and sugars to keep it as low as I can.

Results!

Here’s what I just received by email:

Got your phone and e-mail, just been very busy with patients this am. Your values are much better. M-spike in beta 2 region is 0.29 G/dl, Gamma region is 0.18 G/dl. Your IGA is 1132, IGG 310, and IGM 37

My IgA was 2245 mg/dL when I started. My IgM is in the normal range for the first time ever! IgG still low.

Starting second cycle

I started my second cycle of Rev/dex yesterday. So far, nothing bad! Just the dex sleeplessness and a bit of a headache. Normal dex stuff. Just 3 more months to go, and then I go to dex just 4 days a month and the Revlimid 21 days, like now. I had the quantitative Ig’s and SPEP done, as well as CBCs. The CBCs were all in the normal range. The RBC, HGB and HCT are all at the low end, but still in the normal range!

Ouch!

My teeth are very sensitive to cold again. I had this happen when I was on thal/dex, and now again that I’m on rev/dex. When I breathe through my mouth, the air passing over my teeth makes them hurt. Even room temperature water is too cold for me. I’ve been drinking decaf coffee today with frothy soy milk. Is that a decaf soy latte?

I added this on 3/6/2010 after hearing from a patient whose husband is a dentist.

…the resident dentist wants me to add that he also recommends MI-Paste for sensitive teeth.  Use a fluoridated toothpaste (regular or Sensodyne) twice day.  After brushing, rub MI-Paste on the teeth and let it sit for 3 minutes.  http://www.mi-paste.com

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Week Off

I’m on a week off from all my meds now, except the warfarin. I forgot how exhausting the 4 days on/4 days off of dex was. I can only describe it as being tired at a cellular level. Seriously. Every cell in my body is exhausted. My hands shake and I can hardly write. My legs don’t want to move. All I want to do is sleep. I’m in awe of someone like my friend, Dan, who never even missed a day of work (except to have a blood clot) while he was on high dose dex and thal. I don’t know how anyone can function on this stuff. I can’t even drive sometimes! I really hope it’s kicking the heck out of the MM.

Killed in Iraq

Our new neighbor was killed in Iraq last week. He had just built a new home on our street a few months ago. I never got the chance to meet him, because he was rarely home. Now I know why. He was overseas. There are a few soldiers living on our street. We’re quite close to Fort Bragg, the home of the 82nd Airborne Division.