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.