Category: Myeloma

Myeloma

Six years ago

Six years ago on this date, I had a stem cell transplant at Duke Medical Center.

You can read what I wrote that day by clicking on the picture of my stem cells.  I didn’t document it very well.  I remember feeling just terrible when the stem cells were being injected into my line.  I felt so bad that they gave me something that pretty much knocked me out.  It felt like someone punched me in the chest.  I felt sick, too.  I can’t even remember if I took this picture, or if someone else did.  Ativan. :)

Stem Cells

Leg Rash? Bedbugs?

myeloma blog statsI don’t really blog much anymore, because I’m not being treated for my multiple myeloma these days.  It’s been pretty stable for nearly six years.  I try not to live in the myeloma world too much.  Actually, I don’t really even try.  It just works out that way.  When I first learned I had myeloma, back in 2003, it was all I could think about, from the time I woke up in the morning, until the time I went to sleep.  I’ve talked to a lot of people who experienced the same sort of involuntary obsessive thoughts about the disease.  It’s a strange feeling.  You know there’s something inside you that’s trying to kill you, and you can’t stop thinking about it.  The farther you get from your last treatment, the less you think about it.

Since I don’t do much blogging these days, I don’t pay attention to my stats, either.  This morning I decided I’d take a look.  What surprised me was the number of people who found my blog by searching for something with the word “rash” in it.    I had written a post in 2007 about what I think could have been an insect bite on my leg.  As you can see from the image on the right, “bed bugs rash” is now the number two search phrase that brings people to my blog.  Very interesting.

In the past, my blog was a big attraction for people searching about shingles.  I’ve had shingles at least three times, and blogged about it — with pictures.  I wasn’t shocked when I used to see that turn up in the analytics.  “Bed bugs rash,” however, is surprising!

The Myeloma Twins

During the time I was in treatment, I coordinated my doctor visits and chemo with another myeloma patient who lives about 25 miles from here.  We traveled to Chapel Hill appointments together and, when we were told the only treatment left to us was a stem cell transplant, we had ours together through The Duke Adult Blood and Marrow Transplant (ABMT) Program in Durham, NC.  We even had apartments next door to one another!

One of our doctors started calling us the “myeloma twins.”

I’m really glad to have just gotten the news that Joyce is moving to Pinehurst, which borders on Southern Pines (where I live)!  She’ll only be a few miles away, so we’ll get to see each other more often.

Yay!

Latest Labs

The serum free light chains weren’t back yet when I got this. I don’t think about this stuff as much as I used to, so I probably won’t even call in to ask about it. I’ll wait for my next appointment in a couple of months to find out.

I had been seeing the doc every 4 months, but now it’s going to be every 3 months, due to a small increase in m-spike. The doc asked me if I want to start maintenance, but I said no. The m-spike was somewhere about 0.3 five years ago after I had my auto SCT.
Myeloma blood test results 2012 July

Post about new “Blood” study from Margaret’s blog

I wanted to share this link with my readers, because it’s an important discussion about cure vs control and other aspects of myeloma treatment or management.

http://margaret.healthblogs.org/2011/08/02/the-cure-versus-control-debate-a-new-blood-study/

Please read it and let me know what you think.  I’ve long thought I probably should have held off on treatment for as long as possible, and my post-SCT strategy is to stay treatment free for as long as possible. I expect to withhold treatment until symptoms affect QOL.