Category: General

I had my monthly appointment at the Clinical Cancer Center at the University of North Carolina today. I talked with Dr. O., and then Rey, the research nurse, about a few trials in which I can participate. As you know, I’m terrified of SCT, so I’m saving that for another time. There are 2 trials I’m thinking about. One is the monoclonal antibody for IL-6 that I’ve spoken about before. The other is a Velcade vs. Velcade + Doxil trial. Dr. O. recommends the Velcade trial because it has the greatest (known) possibility of a CR for me. It’s a phase III trial. I still have to read the informed consent documents to learn more about it.

Before I do anything though, I’m going to try high dose dex once more. I’ll take 40 mg of dex for 4 days, then take 4 days off (x3). While dex seems to be less and less effective for me, Dr. O. prefers to exhaust one therapy before starting the next. That makes perfect sense. The high dose therapy may reduce my disease enough so that I can take the 4 weeks off from treatment that’s required for either of the trials.

I have to think about what approach I want to take. The IL-6 thingie is known to be pretty well tolerated, but it’s a phase I trial. The dosage hasn’t been worked out. It works in vitro, but we’d be the first humans to be treated with this specific stuff. After I read the informed consent, I’ll be able to tell you more.

I’m psyching up to take my first dex dose soon… I really have to watch my blood sugar!

I upgraded the blog software I use, WordPress. Now I’m looking for a good theme to use, since I’m not good at design myself. Unfortunately, I need to leave for my monthly appointment at UNC now, so I have to go. I’ll work on the theme thing when I get back, which will probably be late!

I’m on vacation in CA. Actually, it’s just a few days away from being over. I’ve had a nice time. I even flew first class, so I wouldn’t have to sit crammed in with a bunch of germ-infested people. I realize we’re all breathing the same air, but I had a lot of anxiety about flying again. The last time I flew, I was sick within 48 hours with a bad cold that seemed to last forever, and I also had a GI virus. I was sick for weeks. That didn’t happen this time, thank goodness. That last time, it was cold & flu season though. I think summer is the best time for me to travel. :)

I had my annual skeletal survey a few days ago. I have osteopenia! That wasn’t there last year. The doctor says it can be from the MM or from the steroids. I don’t have any other details, like where it is.

Osteopenia = decreased bone mineral density, but not as severe as osteoporosis.

From http://www.rad.washington.edu/mskbook/osteopenia.html:
It can be fairly difficult to diagnose osteopenia accurately on plain radiographs. First of all, plain films are hideously insensitive to changes in bone mineral. One must lose 30 – 50 % of the bone mass before it can be detected on a plain film.

I have my lab results from Tuesday, and I see that my IgA is up to 1559 g/dL. This tells me that 40mg dex and 50 mg thal each week isn’t working for me. I don’t want to take more steroids or thalidomide. The steroids are really rough, as most of you know. I don’t want to increase the thalidomide because I already have PN and don’t want it to get worse.

Dr. Orlowski told me about a trial for a new treatment coming up. I don’t know a whole lot about it. It involves an anti-Interleuken-6 agent. I’ll have to ask for more details.

I haven’t posted much lately. Mostly, that’s because there’s nothing to report. My IgA was going up, and I changed my treatment a little bit to see if I could stabilize again. My IgA is in the mid-1400s now (in April & May). I’m now taking 40 mg dex and 50 mg of thalidomide weekly. Yes, just once a week for each. I don’t tolerate thalidomide very well, so I’m using the lowest possible dose that will keep me stable. Before, when I took 50 mg, and then 50 mg every other day after I began to experience neuropathy, I was able to stay on it about 10 months. Along with dex, it really did help me. I wish I could take more, but I don’t want any more nerve damage. You never know how much you appreciate your feet until they go numb! The joy of new shoes is lost forever.

I read about a new book called The Last Well Person: How to Stay Well Despite the Health-care System when I was reading Seth Godin’s Liar’s Blog.

This is the link to the book’s amazom.com page. I have it on my wishlist.

Seth Godin’s new book, All Marketers Are Liars, is a quick and easy read. What’s best of all is that it’s fascinating. My nephew, who is a sophomore in high school, saw it in the back seat of my car and asked to read it. He had it done by the next day. I recommend that one too!

_