Month: December 2004

It’s the Zometa, Stupid!

Last week I had an infusion of Zometa. The next day, I felt a bit flu-ish, or like I was coming down with a bad cold. You know that feeling? Aches and general malaise. I started to think about how I always felt kind of icky after having spent the day at the hospital for my infusion and monthly appointment. I assumed I had been hanging out in a germy environment and was fighing some kind of virus. Argh. Well, I finally figured it out after almost 2 years. It’s the Zometa. I had a pretty harsh reaction to it the very first time I had it, so what I’ve been feeling since then seemed like nothing. I just knew I didn’t feel well, but oddly enough never attributed it to the Zometa.

Added on January 23, 2005: I wanted to add that the local docs I talk to have also downplayed the risk of ONJ & Zometa. I was told by Dr. Durie that this is a real threat. He suggested I switch to Aredia – a 2 hr infusion. Possibly every other month. I will see him in March in Atlanta, and will ask about this again.


I have my December cold. I’ve been using Zicam, although I’m not sure if I should or not. I’ll be seeing Dr. Orlowski tomorrow, so I can ask about that. There’s always been this rumor that MM patients shouldn’t use anything that’s going to stimulate the immune system, since the wayward clone is part of the immune system. This isn’t the first time I’ve used Zicam though, and I haven’t experienced any problems in the past.

Dr. Durie

Last week I had a phone consult with Dr. Durie. For those of you who haven’t heard of him, he is a world-class MM doctor. In fact, he developed the first staging system for MM, called The Durie-Salmon Staging System.

Dr. Durie said that my MM appears to be low grade, or slow moving. This made me feel better. It means I could have many years. :) He also believes that MM treatment shouldn’t be worse than the disease. For example. when someone has a low grade MM — one that doesn’t produce symptoms — harsh chemo may not be the ticket. For me, this is the case. I seem to be very sensitive to drugs, therefore my doctor has concerns about high dose chemo. There’s often talk about high dose chemo and stem cell transplant (autograft) on the mailing lists. For me, this isn’t the answer just yet. I told Dr. D. I feel a lot of pressure from my peers concerning SCT and even tandem SCT. He made me feel better about the choice I’ve made, which is not to have SCT at this time or in the foreseeable future. Wow. That word looks like it has too many Es. I have to mention that Dr. O. has never pushed me towards SCT either. He is respectful of my wishes.

We also talked about Zometa. He suggested that I switch to Aredia. Zometa has had some adverse publicity concerning osteonecrosis of the jaw. If you haven’t heard of this before, and you receive Zometa, please read this.

Dental Health and Osteonecrosis of the Jaw, by Novartis, the manufacturer of Zometa.

You may have seen an article in the news touting the benefits of tandem SCT. Well, the title says that, but it’s misleading. The title says, “Study Confirms Effectiveness of Double Autografts in Multiple Myeloma.” The article says, “There is evidence that this prolongs the time to disease recurrence, but there is little evidence that it improves survival, especially if a second transplant is carried out at the time of disease progression.” And, “the primary beneficiaries of a second transplant were those with less than a very good partial response to the first transplant. Patients who had a CR after the first transplant did not have an improved outcome.” Also, “This study confirms the results of the French trials showing that a second transplant benefits primarily those who are not in CR after the first transplant. This indicates that patients who achieve a CR with the first transplant can delay the second transplant. However, it may not be a good idea to delay the second transplant for poor responders, as both the French and Italian study suggest a compromise in overall survival.” Some people (including doctors) will not read these comments in the abstract, and they’ll push patients into tandem SCT, whether they’d benefit or not. Please do your own research and decide for yourself.

I’m only trying to say that SCT is not right for me at this time. If that’s your chosen path, and you’re committed to it, then it is right for you, and that’s what’s important to you!


I sold one of my guitars on ebay last night, and I really underestimated the shipping cost. The main reason this happened was because I was going to package it myself. Instead, I went to the UPS Store. I’m pretty sure I’m not going to do that again. The first time I was there, I just wanted to see if I could buy a box. They had one, but I was told it would cost me $47.00! Yikes! The clerk said that they could pack it for me for less. I believed that, and went back later with my guitar. After the deed was done, I ended up spending $77.65 to ship that thing, when I had only allowed $49.00. Ugh. The breakdown is: $24.95 for the box, $37.70 for the shipping and $15.00 for the guy to put it in the box. Yes, that’s right. $15.00. What it all means is that I got about $30.00 less for the guitar than I was supposed to. All because it was hard to find a box. :(

Overbreeding/Killing of Greyhounds

If you have HBO, I hope you didn’t miss the last Real Sports. One of the segments draws attention to the killing of greyhounds that aren’t fast enough to win craploads of money for their owners. Thousands are killed every year. If you’re reading this, I’m hoping you’ll follow some of the links I’ve provided and decide to boycott greyhound racing. Let’s get this disgusting industry shut down.

Dog Fears

Despite the lack of a widespread fan base, and in the face of constant protests by animal rights groups, greyhound racing is a healthy industry in the U.S., with millions of dollars wagered each year at tracks in 15 states. Breeders in search of champion-caliber dogs produce thousands of greyhounds each year, a small percentage of which are deemed worthy of high-stakes races. When a dog is no longer profitable, there are few options for its future. Some find a home through adoption, but those who go unclaimed are destroyed. With the supply of dogs being bred far outweighing the demand, an alarming numbers of dogs are put down each year. Correspondent Bernard Goldberg, in collaboration with Sports Illustrated, takes a probing look at the world of greyhound racing.

Correspondent: Bernard Goldberg.

Argh! Not Enough Sleep!

I took my 40 mg of dex last night, and then let myself stay up until 4:30 am before I took xanax to help me sleep.

Why don’t I take it midnight? I don’t know, except that dex can make you do weird things. I got involved in cleaning my stove, includeing the burners and the little pans underneath that trap all the gunk from cooking. My brother, a chef, is staying here for a bit, and he is one messy cook. Normally, I keep the pans all shiny! When they get bad, I buy new ones. :)

I also started to post some things for sale on ebay that I no longer want or need. If you’re in the market for a guitar, let me know! I have a few I want to sell. My fingers have such a weird feeling in them from taking the Thalomid, that it just feels very uncomfortable to press down on the strings. I can’t picture myself just playing slide guitar.

So, anyway, I didn’t sleep enough. I even took another xanax when I woke up too early, but it just didn’t do the trick. I’m not the napping kind of person, so I’m probably just up for the day.