Author: Beth

Today is the last of my 4 days off from dex. In the morning I’ll start my 4 days on, with 40 mg. I’ve taken dex in the morning and dex in the night. It doesn’t seem to matter so much to me when I take it. It doesn’t seem to have the impact on my sleep that it used to have in the beginning. Of course, I’ve been off of it for 6 months until now, so it may be a cumulative thing. I’ll have to see. The first 4 days (last week) I didn’t have any bad indigestion or sleep problems, so all I can say is yay!

The stomach problems I was experiencing seem to have come to and end. Thank goodness for that, too. All I can think is that if the Revlimid was making me feel so crummy, it had to be making the cancer feel icky too.

I’ve been making myself walk more every day. Dex makes my legs feel really weak, so it’s my job to keep them strong. By spring I’ll be swimming too!

When you’re taking new drugs, you assume that any weirdness you feel are side effects. I’m guessing that’s the case with me. The first 3-4 days I was on rev/dex, I had a pretty terrible headache. That has subsided. Was it the dex? Not sure. I’m off for 2 more days.

Today I feel queasy and things are kind of in slow motion. I had to take my dog to the vet, but didn’t feel like I should have driven.

Well, I’m about to start my Rev/dex regimen. I’ll take 40 mg of dex this morning with breakfast and then at lunch I’ll take the 25 mg of Revlimid. At dinner, I’ll take the 2 mg of Coumadin I’m getting as a preventative for DVT. Each center has the option of using baby aspirin or low dose Coumadin.

The doc says there’s a smaller risk of DVT with rev/dex than there is with thal/dex. I don’t believe I’m in an at risk group, but I’m careful about sitting for long periods of time without moving (long flights or car trips, for example). Even people who are healthy can develop DVT from that! Remember David Blum from NBC who died from DVT after his long flight to Iraq to cover the “war?”

Somehow my post about starting rev/dex turned into a sermon about DVT. Sorry about that!

I’m dreading taking the dex. It’s been about 6 months since I had any. As you recall, I was off dex for 4 weeks before the CNTO 328 trial and for the duration of my participation in that trial. After the trial, in anticipation of getting into the rev/dex EAP trial, I stayed off all treatment. It’s been a few months since I did anything at all except Zometa. It’s been so nice not having to take anything. My IgA has been hovering in the 2500 mg/dL range during this time.

I’m hoping that rev/dex will knock the MM back and give me a CR. Wouldn’t it be nice if it was a durable remission? There isn’t anything I want more, except world peace. :)

If you want to laugh, try watching Arrested Development on Fox. It’s not for everyone but, if you have a little bit of a warped sense of humor, you’ll really, really like it. The show stars Jeffrey Tambor, Jessica Walter, Jason Bateman, David Cross and others. There have been some wonderful guest stars like Charlize Theron, Martin Short, Henry Winkler and Liza Minnelli. The episodes are narrated by Ron Howard, who I think might be one of the producers or something. This is at the top of my list of all-time favorite television programs.

Pleeeeease don’t let this show be cancelled! Contact your local Fox affiliate and Fox now!

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Arrested Development

Celgene (http://online.wsj.com/quotes/main.html?type=djn&symbol=CELG)
Corp. said it would price its new medicine for a rare blood disease at about $54,000 annually, and argued that the drug would save the health-care system money.

Um… well, I’m glad I’m going to be in a trial. Free drugs. Even though I have good insurance, there is a lifetime limit of a million dollars. If I live 10 more years on drugs that cost $50 a year, that will use half! Zometa is almost $20k a year, although I doubt I’ll be on that every month for the rest of my life, since it’s known to cause ONJ in some patients. I’m going to see if I can cut back to every other month for now.

I just finished upgrading the software I use for this blog (WordPress) to the latest version. It always makes me nervous to do upgrades. I tend to rush and not backup stuff beforehand. This time I did, and all went well.

Today’s the day I’m collecting for the 24 hr urine test. I have to leep reminding myself it’s not a contest to see how much I can get. I start to worry if it’s not looking like it’s enough. I can only do what I can do, right?

For those who don’t know what I’m talking about, there’s a test that we with MM have to do every once in a while. It’s called a 24 hour urine test. We have to save all our urine in a jug for 24 hours, starting with the second “event” of the day and ending with the first of the next day. Then we lug the jug to the doc’s office and they send it off for testing. What they’re trying to determine, is the amount of what used to be known as Bence-Jones protein.

It’s a complicated process, and it’s always amazing to me that someone even figured this stuff out.