Month: July 2005


I don’t think I’m going to enroll in that trial. I wrote to Dr. Durie, and he suggested three treatment options for me.

  • Low dose Cytoxan with dex
  • Revlimid
  • Doxil and dex

You might know that Revlimid hasn’t been approved by the FDA for anyone to use yet, but I’ve been told there’s an extended access program that allows some patients to receive it. I’m going to call Celgene Monday to find out more. Also, I was told it should be commercially available in September/October.

Right now, I’m taking nothing. I dread seeing my next labs! Who knows though? Maybe not much will have happened.

Fundraising again

In an effort to raise funds for the IMF, one of the things I’m doing is selling products from a company called Country Bunny. I’ve used them myself, and like them enough that when I need lotion I only buy theirs. Any money I receive on any of the sales from the web site is going straight to the IMF. You can order right from the web with your credit card by clicking below. I’ll report back how much I’ve raised from time to time. Thanks in advance!

If you’d rather just send money right to the IMF, go to their web site and click on “Helping the IMF.” (

My Labs

Sorry! I haven’t been very good about keeping up my labs. I’ll put relevant info into the main blog when I have it.

IgA Up Again

Seems like a broken record. My IgA is up again this month to 1705 mg/dL. The 40 mg of dex just doesn’t hold it back anymore. I suppose it’s helping some, but not enough. I’m thinking of doing the Velcade vs. Velcade + Doxil trial. I just can’t tolerate dex anymore. I thought I was going to give dex pulses one more shot, and I started last night. I simply feel rotten taking dex. I can’t do it again. I don’t care if I never have it again.


Last night, I felt like I had something stuck between my lower front teeth. What it was, was pieces of broken tooth! I have an appointment on Thursday to have it examined and have the jagged edges filed down. The thought of having a tooth filed is reminiscent of nails on a chalkboard.

Today’s appointment

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!

Blog Upgrade

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!