PBS on MDS

Last night I tried to use PBS's Nova to put myself to sleep (it often helps to have TV distraction to induce sleep by preventing me from thinking too much). The show was entitled Ghost in Your Genes.

The gist of the show is that something called epigenetics can affect health. Epigenetics is, in essence, chemical factors that cause genes to activate or not.

About two-thirds through, comes the following:

NARRATOR: This work is controversial. Still, many scientists now believe that epigenetic changes in gene expression may underlie human diseases.

Take a disorder like M.D.S., cancer of the blood and bone marrow. It's not a diagnosis you would ever want to hear.

Whoa! I'd seen this show before. Must've been before my diagnosis, because I had no memory of its talking about MDS.

But, hey—what kind of statement is "It's not a diagnosis you would ever want to hear"? That sure made me feel better (right).

The sequence continues:

SANDRA SHELBY (Medical patient): When I went in, he started patting my hand and he was going, "Your blood work does not look very good at all," and that I had M.D.S. leukemia, and that there was not a cure for it, and, basically, I had six months to live.

NARRATOR: With no viable treatment, Sandra entered a clinical trial experimenting with epigenetic therapy. It was the result of a radical new way of thinking about the causes of diseases like cancer. . . The trouble begins, believes Issa, when our stem cells, the master cells that create and replace our tissues, overwork.

JEAN-PIERRE ISSA: Every time a stem cell has to repair injury, it is aging a little more. And because each time a stem cell divides there is a finite chance of some sort of epigenetic damage, what we find is that in older people there's been an accumulation of these epigenetic events that is easily measurable in DNA.

Now where does the cancer angle come from? Well, if you count age as how many times a stem cell has divided, then cancers, which copy themselves tirelessly, are awfully old tissues.

NARRATOR: As epigenetic errors pile up, the switches that turn genes on and off can go awry, creating havoc within the cell.

ANDREW FEINBERG: There are genes that help to prevent tumors that are normally active that epigenetically become silenced. Those are called tumor suppressor genes. And there are other genes, called oncogenes, that stimulate the growth of tumors. And then the tags, such as the methylation tags, come off those genes, and those genes become activated. So both ways, turning on and turning off, is a way of getting epigenetic disease.

NARRATOR: But could misplaced tags be rearranged? In 2004, Sandra and other patients began taking a drug [decitabine] to remove methyl tags silencing their tumor suppressor genes. . .

SANDRA SHELBY: The results have been incredible. And I didn't have, really, any horrible side effects.

ROY CANTWELL (Medical patient): I am in remission, and going in the plus direction is a whole lot better than the minus direction.

NARRATOR: Roy has not been cured, but he has been cancer-free for two years. And he is not alone.

JEAN-PIERRE ISSA: Spectacular results—complete disappearance of the disease—can be seen in almost half of the patients that receive this drug.

What? Can this be true?

Probably not.

Consider the FDA's report on the medication's clinical trial:

• "In the decitabine-treated group the median duration of response was 288 days and the median time to response was 93 days. All but one of the decitabine-treated patients who responded did so by the fourth cycle. Decitabine treatment did not significantly delay the median time to acute myelogenous leukemia or death (emphasis mine)."

Or, the trial's official abstract:

• "Patients who were treated with decitabine achieved a significantly higher overall response rate (17%), including 9% complete responses..."

As an MDS sufferer, a couple of things are bothering me, here:

• that the PBS show would so glibly glide over the topic, offering seemingly limited patient experience as near-definitive results
• that PBS says 50% of patients, but the study says 17%
• that maybe the Ghosts show is right—the stuff works
• that nobody has talked to me about this decitabine
• that I had no recollection of this sequence in the show because, I guess, then it didn't apply to me.

In this kind of health situation, it can be difficult not to hold out false hopes, or at least grab at straws, even if your current medication regimen appears to be working.

• Does this drug really work?
• Why haven't I known about it?
• Is it better in some way than Vidaza?
• Should I be on it?

It's the open-endedness of the situation (How long will this Vidaza actually be effective?) that leads to these rather irrational thoughts. One always hopes for resolution/cure.

Still, I'm gonna have to ask Dr. O about this decitabine stuff.