Thursday, March 01, 2007

Is It Getting Scary Yet?

I've taken thalidomide for two rounds now, each 28 days in length. The blood and urine tests, unfortunately, don't yet show much improvement. Serum IgG is up slightly, serum lambda free light chains are up slightly, beta 2 microglobulin is up slightly, ESR is up significantly, x-rays indicate "possible" holes in my cranium, I'm experiencing a little neuropathy in one leg, and albumin is down slightly; all of those are not good.Look very closely to see the other shore of Lake Woebegone

And, for the first time ever, I have light chains appearing in the urine, though a very small amount. However, they are the wrong light chains. They are "kappa," while I have "lambda" light chain disease (one of several forms of myeloma). This is not good, but I’m not sure it’s bad.

On the good side, the M Spike (a good indicator of the total tumor burden) is down 20%, and all of the rest of the CBC and chem results are normal. Aside from a little neuropathy and maybe a few tiny holes in my noggin, I'm just fine! No organs are damaged yet.

But the overall picture begs for more testing. The doctor has ordered: (1) Bone marrow biopsy (my third, very much like getting a tooth extracted from my butt); (2) CAT scan of my noggin; and (3) MRI of nerves in my lower spine to see what can be learned about the neuropathy. Maybe the thalidomide is unmasking an existing condition.

Actually, I'm delighted with these tests; the doctor is being very proactive. Also we're doing one more round of thalidomide. After that we may switch to Revlimid, which is similar to thalidomide but much newer, more potent, and with fewer side effects (read: less neuropathy).

I'll see the doctor in two weeks, more news then.

Related links:

My Myeloma A discussion of my myeloma, not very technical.

Test Result Table Mine. Best with a wide browser window. Very “technical.”

Treatment Table Also mine, not technical. Will be updated ...

1 comment:

Anonymous said...

Hi Don,

If I had it to do over again, I wouldn't have taken thal. I took dex along with it, and it turned out that it was the steroids I was really responding to. The same thing happened when I was on Rev/dex. Revlimid caused a tiny bit of PN progression. Mostly, it caused GI problems for me. Now I'm on Velcade & Doxil, and it seems to be doing the trick. If only it can give me a remission!

Have you thougt about just trying dex alone? You might be able to take 40 mg a week and be fine for a good long while.

Beth