Author: Beth

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!

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I’ve been on antibiotics the last 5 days, with 2 more to go. The doctor believed it best for me to do this, since I had a cold that was lasting too long, and there were signs of a sinus infection and possibly bronchitis. The antibiotic is called Levaquin. I finally feel a bit better, but am still congested in the head. How can one person’s head manufacture so much mucous!

I thought this cold thing had caused my IgA to go up. I didn’t know if a cold would cause an increase in serum IgA or not, so I emailed my doctor to find out, and here was his reply:

“I saw your elevated IgA, and I am afraid to say that I don’t think it is
too likely that this is from a cold. I don’t think we need to do
anything differently right now until we see the next one, however, when
you come back next time.”

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.

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!