Category: Life

Life

Quick update

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I just got off the phone with the nurse at my oncologist’s office and got some good lab results. She read off everything, but I didn’t have a pen and paper. I just remember the immunoglobulins, so here goes:

IgA 964 mg/dL
IgG 316
IgM 23

I think she said my 2 m-spikes added up to something like 0.4 g/dL. I’ll be there Tuesday to start another cycle of Velcade and Doxil, so I’ll get a copy of the report then. Last month, my IgA was in the 1300s. Before I started, it was in th 2200s. 964 is good! Maybe another cycle will get me into the normal range, which is a place I haven’t been since my diagnosis. A remission would be nice.

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Velcade and Doxil Side Effects

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Here’s some advice I got about Velcade/Doxil from one of the researchers involved in early trials. I thought I’d pass it on.

Myeloma treatment with DoxilWith the Velcade and Doxil, have they started you on oral Vit B6? When we used to run the Phase I study of that combination, we have recommended pyridoxine (Vit B6) 200 mg by mouth daily. I think this is even over the counter but you can definitely let your local doctor be aware that you are taking this. This drug is to prevent the hand-foot syndrome which is a potential side-effect of the Doxil.

There is also the risk of neuropathy with Velcade. A patient once told me that the Velcade neuropathy (which is more of pain) is different than the Thalidomide/Revlimid neuropathy (which is more of the numbness and tingling sensation). As of this time, there is no approved treatment for neuropathy or formal studies comparing all the drugs that are being used to alleviate neuropathy. We have been using either Neurontin or Lidocaine patch.

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HealthBlogs

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HealthBlogs is open for business now. It provides free blogs, just like this one, to anyone who is facing a health challenge, caregivers, healthcare professionals and people who are interested in health and fitness. Please stop by www.healthblogs.org to create a blog for yourself, and please tell a friend (or 10)!

I’ve been blogging for about 4 years now, and Ive found that it not only helps me. I’ve received email and comments from hundreds of people who are facing similar struggles or know someone who is.

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End of first cycle

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I had Velcade this morning, ending cycle one. I have next week off, and then will start cycle two. I guess the week off is included in the cycle, since they’re 3-week cycles. A couple hours after, I get a bad headache. I actually have to take percocet for the headache.

Kathy Griffin is making the rounds on TV this week. She was on Ugly Betty last night and the View this morning. Normally I don’t watch daytime TV, but I have TiVo record anything with Kathy in it automatically. She’s just too funny to pass up. If there are people or things that make you laugh, take full advantage of them. Laughing is good for us!

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Hats

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As you know, I lost my hair after I had Cytoxan. Since then, I’ve been wearing a baseball cap to keep my head warm. Also, let’s face it. I look terrible bald. Here’s the thing though. I only have one hat. It’s getting dirty, and I need a replacement. Here’s my offer: Send me your company’s logo hat and send $25 (tax deductible) to the IMF, and I’ll wear the hat every day until I get another replacement! I’ll even post a picture so you can see your hat fulfilling its lifelong ambition of covering the head of a cancer patient. What more could a hat wish for? If your company wants to sponsor my bald head, please leave a comment for me and I’ll get in touch with you.

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A couple of things

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I got the results of my labs from last week. My IgA is at 2116 mg/dL (approx 1300 in October and 1500 in November) and my m-spike is 1.9 g/dL. I had this fantasy that my MM would be stable and I could delay treatment further.

Susan is having her SCT now. She had high dose chemo on the 27th and 28th, and the stem cells were reinfused today. She’s blogging about her experience at http://susansjourneywithmyeloma.blogspot.com/. Stop by and wish her well.

I noticed from my web stats that someone searched on the cost of neupogen. It’s expensive! My 10 day supply of neupogen and catheter care supplies was in the neighborhood of $10,000. This is why I take keeping my insurance very seriously. Even if you have insurance, cancer can be a huge financial burden. I can’t imagine what people go through when they don’t have coverage.

This is the regimen I’ll be starting on the 9th: Velcade 1.3 mg/m2 on days 1, 4, 8, 11. Doxil 30 mg/m2 on day 4 after Velcade that day. I had a bad dream about it a few nights ago. My nightmares are always about being in the hospital and/or having chemo. I usually find out that I was given the wrong dose or the wrong drug, or it was administered improperly (in these dreams).

In the days before cancer, I’d have plane crash dreams. I don’t think anything’s ever going to stop the “back in high school” dreams, where I’m at my current age and somehow I end up in high school again because I was mistakenly graduated. All I can do is protest that it doesn’t matter anymore because I have a university degree and, besides, I’m old enough to drop out anyway. I can’t just walk away, because I’m at boarding school in Wisconsin and I have no car or money. Oh, and I still have the “stuck in San Francisco without any money” dreams.

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