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.

Long car ride

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On Sunday I drove a friend to Rocky Mount, NC to visit some friends. It was 2 hours each way, with a few hours in between. By the time I got home, my feet felt as though they were in flames and someone was beating on the soles with a hammer.  From the knees down felt numb.  This happens to me when I have to sit for too long.  This is a result of treatment with thalidomide and Velcade.  Luckily, the pain and discomfort goes away by the next morning and I’m left with the numbness in just my feet.

What is it that makes the PN so much worse while sitting?

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Caffeine and email

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I don’t have caffeine very often anymore. On Friday night I had a caffeinated soft drink, and just couldn’t sleep. Instead of just trying to sleep, I stayed up to upgrade a machine. The upgrade didn’t go as smoothly as I planned, and I ended up being up until after 7 AM. Needless to say, I’m very tired today.

Is there anyone else who gets email in their dreams? I’ve had a few dreams in the last couple of months in which I’ve received email messages. I have a pretty vivid memory of what the messages said, too.

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New hat

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This is a new hat brought to me from New Mexico by Sharon. Isn’t it beautiful?

Here in NC, we’re under voluntary water restrictions due to extreme drought conditions. Some of the people in my neighborhood are ignoring it though. I’ve noticed a few people washing cars at dusk, so as not to attract attention to themselves. I think we should have mandatory restrictions statewide. Some cities are fining people for car washing and watering lawns.

My hate from New Mexico

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Test results

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I got the results of the tests done last week at Duke. The report states, “Compared to 8/3/07, no significant change in previously characterized IgA lambda components from 0.28 to 0.19 and 0.12 to 0.18 g/dL.” The PA let me know that it’s possible for the m-spike(s) to drop more in the next few months. One good thing is that my IgG is normal for the first time in five years (probably a few more). It was 223 in February, 2003, for example.

Immunoglobulin Profile
IgG 709 mg/dL Reference: 588-1573
IgA 374 mg/dL Reference: 46-287
IgM 29 mg/dL Reference: 57-237
IgE 12 mg/dL Reference: 4-269

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People are living longer with some cancers

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According to a recent report that will soon appear in Cancer Journal, in men, myeloma, kidney and liver cancers have been rising. In women, lymphoma, melanoma and thyroid cancer continue to increase. The National Institutes Of Health says more people are living beyond five years of their cancer diagnosis.  That’s what they mean when they say cancer deaths are declining.  Probably what they should say is that more people are living longer with cancer.  What science needs to do is work on cancer prevention just as much as cancer treatment.  Finding the causes of cancer is an important factor, according to Devra Davis, the author of The Secret History of the War on Cancer.

You can hear an interview with Davis here.  Just click on “Listen.”

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Uncle Fester

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I think I look like Uncle Fester. All I need is an ankle length black coat with a (faux) fur collar. If you run across anything like this, let me know. I need one for my wardrobe.

You probably think I’m just joking!

It seems like little bits of hair are starting to grow. I predict that I’ll have what could be thought of as a normal amount of hair by spring. I can’t remember what happened last year. It seemed as though I had a short curly head of hair by spring.

This is what my head looks like now.

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One Month Check-up

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Tomorrow I’ll have my one month check-up.  It will have been a month since I was released from the Duke SCT Clinic.  I feel pretty well, with no major complaints. I’m filling a jug for them, and will have blood drawn when I get there.  Aside from CBCs, it will probably be at least a few days before I get any results.

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Message from the Leukemia & Lymphoma Society

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Someone from the LLS asked me to post this.

Being diagnosed with a serious disease such as a blood cancer is terrifying and people facing a cancer diagnosis need clear accurate information and they often need that information quickly. The Leukemia & Lymphoma Society’s Information Resource Center, a call center staffed by master’s level trained professionals, is marking its 10th anniversary this fall. This call center is the only one of its kind because of the depth of individualized service it provides. There are literally hundreds of different sub-types within the blood cancers and our staff is trained to identify the special needs of each caller and help that caller find the resources he or she needs, find clinical trials, and connect with local services in his or her community. In addition to being well versed on a broad range of disease information, each specialist has an area of expertise to provide more enhanced services. The call center has received nearly 500,000 calls since its launch in 1997. Translation!
s are available in more than 140 languages. In FY ’07 the IRC received more than 75,000 calls. The IRC is currently engaged in a patient navigation study to offer proactive follow up for callers. The center is reachable at 800-955-4572, via email at infocenter@lls.org or chat online at www.lls.org and clicking live help.

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