Tuesday, August 9, 2011

I'm a Little Distracted

Late night phone calls are generally bad things, but always calls that need to be taken.  We had one last week, a friend of Mrs. Graybeard's called from the hospital where she's in with Acute Myeloid Leukemia.  This story is a little involved, and surprisingly raw for so long ago, so bear with me a little. 

It was 14 1/2 years ago, the first Monday of 1997; Mrs. Graybeard had a mammogram scheduled and came home with the films under her arm.  You probably know enough to know this isn't good.  In the whirlwind that followed we lived Tim McGraw's song, ("I spent most of the next days   Starin' at the X-Rays   Talkin' about the options   And talkin' about sweet time") We went through more diagnostics of the spots, surgery, months of chemotherapy and eventually a stem cell transplant.   Along the way, she met this friend in a support group.  At that time, both of them had similar diagnoses, and both went through similar treatments with stem cell transplants; my wife at H. Lee Moffitt Cancer Center on the University of South Florida, and the friend had hers at Duke University Medical Center (about a year ahead of us). 

A stem cell transplant is often called a bone marrow transplant, but I use the  term as short hand for autologous BMT where your own stem cells are used to differentiate from an allogenic BMT where the marrow is donated by someone else.  These are more risky and grueling.  In a stem cell transplant, SCT, your own immune system's stem cells are removed from your blood and transplanted into you later.  How do they remove the stem cells?  You get a set of tubes (stronger than the normal chemotherapy ports)  surgically implanted into the largest vein in the body, then you're plumbed into a centrifuge that takes your blood out, separates the desired white cells, and returns the rest of the blood into you.  The reason for collecting the stem cells, and the real purpose of all of these transplants, is to give you a dose of chemotherapy that is so strong that it will kill your bone marrow and your ability to produce an immune system.  Although we joked about it, in fact, the dose of chemo is calculated to just not quite kill the patient.

The doctors referred to the SCT or BMT as the most grueling ordeal in medicine.  In August of '97, 14 years ago this month, I took the month off work as family leave to serve as Nurse Stimpy for an outpatient SCT.  Thankfully, the anti-nausea meds worked and she was not terribly sick the whole time - in fact, the whole event was more boring than anything, which gave rise to one of our sayings in life, "boring is good" - especially if it's boring instead of life threatening.  After 6 weeks, we returned home, instructed to stay out of public for a few months while her immune system rebuilt.  On our first full day home, she insisted on going for a 10 mile bike ride.  A few weeks later, she started radiation therapy, five days a week, with the final treatment and the end of the journey that began in early January finally taking place the day before Thanksgiving. 

So why am I going through this story?  Our friend's leukemia is being attributed directly to the stem cell transplant she went through.  The same SCT that Mrs. Graybeard went through.  And the same treatment that several friends we lost along the way went through. In a group of 8, all of whom who were given "about 75%" chance of survival, only two are still alive and one now has leukemia.

At the time, SCT for breast cancer was experimental, but a researcher had published a paper saying early data showed it was effective.  It turns out this study was falsified, and clinical trials of SCT/high dose chemotherapy were halted.  In a recently reviewed and dated position paper from the ACS:
At one time it was thought that this would be a good way to treat women with advanced breast cancer. However, several studies have found that women who receive high-dose chemotherapy do not live any longer than women who receive standard chemotherapy without a stem cell transplant. High-dose chemotherapy with stem cell transplant also causes more serious side effects than standard dose chemotherapy.
This is one reason why I want my science as hard as I can get it.  It's one thing to be faced with all the uncertainty you face in that situation; it's another for a researcher to commit scientific fraud.  I don't care if they really think they're right and the data just didn't work out right.  You don't adjust reality to fit your ideas, you adjust your ideas to fit reality.  Would we have done it if the doctors said, "this procedure may not help at all and may cause very serious side effects"?  I honestly don't know.  But I think we should have known the truth. 

Randall Munroe, creator of XKCD, is running the gauntlet with his fiance right now and posted this cartoon (and a cool follow up).  I wouldn't wish this on anyone.  

In the end, we're left wondering if the transplant helped or hurt. There is no rational way to decide which one of those cartoon lanes you're on and it seems more like random event than science.  It may disturb you to read that one of the most quoted and followed medical papers in history statistically demonstrates that most of modern medicine is not much more advanced than applying leeches.

Our friend is in good spirits and looks good.  She knows the battle ahead.  It's possible the early rounds of chemo she's getting now will fix everything.  And it's possible another BMT - this time with donated marrow - is in her future. 


  1. The researcher(s) who falsified his data should be prosecuted for criminal fraud, at the very least. Involuntary manslaughter probably as well.

  2. I agree. If I recall correctly, he was South African. Tried to find something about the paper, but apparently '99 or Y2K is a bit too far back.

  3. That such hazardous therapy should be permitted on the recommendation of one study sounds like a flawed notion, as well. My father died of cancer in '73 at the age of fifty, my mother of lung to brain cancer in her early seventies. I have an idea of how easy it is to convince desperate people that a particular therapy is useful or desirable, but often I think we end up being intentional guinea pigs at the hands of doctors willing to experiment with our lives.

    There should be consequences even for the ones who had the "best of intentions", but for those who falsify such data, the consequences should be as draconian as his victims suffer.

    My best wishes for your wife, SG. I hope she remains clear.

  4. You and Mrs. Graybeard are still on the prayer list, but with an asterisk this time.

    I absolutely hate cancer, it took my father a few years back - he was 61 and never got to meet his youngest grandchild. His battle was epic, but in the end it lodged itself in a place where they couldn't get it without killing him, so it won. At times during the ordeal I felt that it was actually malevolent, the embodiment of some kind of relentless evil that simply refused to give up until it killed him. It was like having a demon hunting and haunting him.

    God gives us strength to fight the battles that He puts before us. Still, cancer sucks. Mrs. LeverAction and I will be praying for Mrs. Graybeard and you, and for her friend fighting leukemia.

  5. Thanks to all for the thoughts and prayers.

    My father died from cancer before ever meeting his grandson. My father-in-law died of prostate cancer. My grandfather on my mom's side died of cancer as well. I've been way too close to cancer way too many times. It really is like some sort of predator hunting down the victim. A stupid predator because it kills itself when it kills its host.

    I always ask myself if something like this is worth posting. I just hope I've dropped a fact or two that helps someone who stumbles across this.

  6. I lost a brother to cancer; he was 11 months younger than me. This was back in the day when there were no real treatments. We didn't even know what kind of cancer it was. The doctors simply called it a "rare ailment". From the perspective of over half a century later, I now think it was probably caused from the above ground nuclear tests, that rained fallout over where we lived. Being a sickly little kid myself, who also didn't eat much from the garden that year, I was mostly indoors the year the fallout was so bad. My brother, being the healthy little kid he was, was outdoors a lot more. There was a cluster of little kids, all within a few months of my brother's age, who were in the same hospital ward as he was. My brother survived but a few months. Ditto for the cluster of kids from the local area. There were similar research papers that indicated nuclear fallout was safe. But, they were based on conclusions taken from tests on grownups, who were serving in the armed forces. On little kids, the effect of the fallout was much, much worse. And much faster. As these little kid deaths mounted, above ground nuclear tests were quietly abandoned. But, there are lots of tombstones today that are clustered along the historical timeline coincident with about 18 months after the above ground tests.

    Thoughts and prayers to you and the Mrs.

    -- GB