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.
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.
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’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 want to thank everyone for being there for me! Thanks to my family for checking up on me and helping out when I need it. I’m not one to ask for help, but when I do ask, they’re there. Thanks to LN for calling me every day and making sure I’m ok, and for taking all that time off work to come and see me (I know you’d do anything for me, and I really appreciate that). Thanks to CH for checking up on me when I’m not so active on the list. DH, thanks for calling, and I’m sorry I haven’t felt so great the last few weeks to talk much. You too, PG! SH & GM, you’re always there for me too! And ZM and JW, even though you’re struggling with your own cancers, thanks for staying in touch. Thanks to everyone at work for taking up the slack and never complaining.
Thanks everyone!
I started back on thalidomide tonight. It’s easier to call it thal. Surprisingly, Dr. Durie calls it thal too. Thalidomide is a mouthful. I took 40 mg of dex this morning and took 50 mg of thal tonight. I’ll take 50 mg of thal some other night this week too. Dr. D. didn’t think that it would cause a progression of my PN, so I’m going to try it again. If it does start anything, I’ll stop right away. I’m not sure what I’d try next, but I think I may see about using pred instead of dex, since dex isn’t doing its job anymore. Dr. Orlowski had told me once that he had patients who responded to pred after dex stopped working. I’ll cross that bridge when I come to it.
Mom’s home from the hospital now. All her tests were normal. She had an elevated WBC and a UTI, so she has Cipro for that. I asked to see all the lab reports, but we didn’t get them. :( In this hospital, they’ll just walk in and say, “I’m going to give you a shot!” If you don’t ask, they don’t tell what it’s for. Strange, huh? They don’t tell you what your BP is or any of that! I’m used to something quite different where I receive treatment (UNC Chapel Hill).