Monday, March 24, 2008

First Cycle Response

Well I got my response indicators for my first GRN163L cycle (3 weeks) this afternoon. The serum indicators (which I believe are more reliable) all showed positive results. My urine free light chain protein expression was up slightly. I must have pissed just a bit too much :-).

For the more technically enthusiastic there was an 18% drop in my serum lambda FLC expression to 1448 mg/dL. My kappa FLC expression was actually quantifiable although still pathetically low at 0.72 mg/dL. My IgA and IgM antibodies went up slightly :-) and my IgG went down slightly :-(. I have an insignificant serum M-spike. I'll learn about the rest of the indicators after the second cycle in a couple weeks. I'm gonna run to Andalasia with that news and sleep a bit better for a while.

On another note... I was pleased to find everything on The 10 Best Foods You Aren't Eating list from the March Wild Divine Newsletter in my kitchen (and diet) except Purslane. Something to try by the sound of it:

Although the FDA classifies purslane as a broad-leaved weed, it's a popular vegetable and herb in many other countries, including China, Mexico, and Greece.

Why it's healthy: Purslane has the highest amount of heart-healthy omega-3 fats of any edible plant, according to researchers at the University of Texas at San Antonio. The scientists also report that this herb has 10 to 20 times more melatonin -- an antioxidant that may inhibit cancer growth -- than any other fruit or vegetable tested.

How to eat it: In a salad. Think of purslane as a great alternative or addition to lettuce: The leaves and stems are crisp, chewy, and succulent, and they have a mild lemony taste. Look for it at your local farmer's market, or Chinese or Mexican market. It's also available at some Whole Foods stores, as an individual leafy green or in premade salad mixes.

Wednesday, March 19, 2008

Predictably Irrational

I can integrate and differentiate but I can't count... How predictable it that! No update yesterday. One cycle is 3 weeks. Yesterday was week 4 so all the markers of interest were tested prior to yesterdays treatment not at the end of last week's. Dah! So I'll wait until next Tuesday to look at them.

I happen to be an Audible (audio book) listener and just finished "Predictable Irrational" by Dan Ariely. It was wonderfully entertaining and informative. I highly recommend it for anyone interested in the subtleties of our decision making process and likes science as it is filled with studies to reinforce points of interest. It touches on areas like the placebo effect with thought provoking insight. For example:

Do we get what we pay for?

placebo_art_257_20080304155738.jpgThe nights in the burn department were always difficult, and many of the patients would regularly ask (beg) for more painkillers to help them fall sleep. One afternoon I overheard the doctors tell the nurses not to give a certain patient any more morphine. A few hours later, when the same patient started begging for painkillers I saw the nurse go to her room with an injection and a few seconds later the patient quietly went to sleep. When the nurse stopped by my room, I asked her about it and with a smile she told me that she had given the patient IV fluid.This was the first time I experienced (secondhand) the power of placebo. I am not sure if they ever treated me with the same method, but it is certainly possible.Years later I became even more impressed with placebos when I learned that a placebo for pain has a very clear physiology. When we expect to get pain relief, our brain secretes a substance that is very much like morphine and this substance makes the pain go away. This means that even if the injection contains no painkiller we can still get pain relief courtesy of our own brain.Yesterday we published a study in The Journal of the American Medical Association about placebos. In this study we showed that when people get more expensive painkillers (placebos in our case) they expect a lot and get a lot of pain relief, but when the price of these pills is discounted, the expectations are lowered and so is their efficacy. As it turns out, with painkillers, we sometimes get what we pay for.For a story in the NYT see this link

Friday, March 14, 2008

MM Complementary Matrix

Although I haven't had much to share I have been actively lurking. Watching my friends that I have never met walk (or in some cases run, i.e. Don!) the MM triathlon. A bit of swimming and peddling thrown in for good measure. We have an extremely dedicated community full of compassion and intelligence. Getting ones mind around just a fraction of the information available is staggering. The myeloma matrix available from the IMF which tabulates current clinical and pre-clinical drugs needs to be extended to the supportive therapy realm of supplements, diet, exercise, mindfulness and the likes. One quickly notices that anything in clinical or pre-clinical phase that is available without a prescription is jumped on by the community. For example green tea extract, curcumin, Ganoderma (Reishi or Lingzhi mushrooms) and capsaicin. It is highly unlikely that any agent especially the ancient already tried ones will be curative. On the other hand in combination or as supportive or maintenance therapy substances with as few side effects as curcumin are a welcome alternative.

As for GRN163L, it throws me for a 24 hour yuck. A slight fever and associated headache and body cramps. This week Zometa was added just before the GRN and it doubled the yuck. In fact my fever went up so high (101.5/38.6) they wanted to see me and do a bunch of cultures to rule out infection. I get a slight PT-INR increase for several hours, but it returns to normal within a day. I'll get my first 3 week response update on Tuesday. I'll be sure to let you all know what I find out.

In the mean time maybe some of the more industrious, energetic and resourceful MMers will do some Complementary Multiple Myeloma Matrix brain storming. :-)

Saturday, March 01, 2008

A Prayer and a Dream

This morning as I stirred Lu from a late morning slumber with gentle nuzzles and a few pokes and prods I asked "Is there anything I can do to make you happy?" She replied "Ya, tell me your cured and give me back those dreams."

"Sure no problem. The GRN163L took care of the myeloma. I just have to go back for a few more weeks to prove it. You'll notice how great I feel and pleased I am. Shall we do some dreaming?"

That led to many laughs and lots of scheming and fantasizing about dreams and how to realize them.

The gory details of the first week involve mostly emotional trauma. Going back to Roswell every day except Thursday was more ominous than I expected. Lots of pokes, pissing and a bone marrow aspirate. On infusion day they took about 360 cc (1.5 cups) of blood over about 4 1/2 hours. No, none, zilch, zip, nada side effects!