“Efforts Mount to Make Cancer Treatment Less Toxic: New Drugs Aim to Reduce Side Effects of Chemotherapy; Protecting a Child’s Hearing,” by Amy Dockser Marcus, Wall Street Journal, 14 July, p. D1.
My daughter Emily was diagnosed with cancer ten years ago last week—8 July 1994 to be exact. Found the strange lump circling her abdomen like a shark fin on 3 July back in Boscobel WI, my home town. Next day flew her back to Washington, saw our pediatrician on the 5th and did the abdominal ultrasound on the morning of the 8th. Got the call than noon and we were rushing to Georgetown University Hospital within minutes. One kidney came out the following morning and the fight was on.
About 500 days later and it was basically over, but then the next phase began—survivorship. Emily is now a ten-year survivor post-diagnosis and eight-and-a-half years post treatment. She is what the pediatric oncology field calls a long-term survivor, one of roughly 250,000 in the U.S.
Back in the mid-1990s, we were pioneers of those procedures and treatments that were just coming online at that time, the biggies being new forms to reduce the side-effects of radiation treatments (special fractionated doses that were almost “beamed” into the body using lasers targeting off of specially-place tattoos on her body) and the rise of newer nausea-treatments (delivered around the clock in new portable spring pumps), plus the whole idea of doing the vast majority of chemotherapy treatments in the home versus the hospital (we had a homecare nurse that administered roughly 80% of the chemo in our living room, and Vonne and I actually administered the nausea and blood-growth hormone shots ourselves—along with performing most of her blood draws via her permanent catheter).
When Em was getting her treatment in those days, we knew that she was receiving far more calibrated—meaning actually smaller—doses of key chemo therapies than those who went before her. The unintended “over-dosing” of previous generations of peds onc kids were subsequently found to have created lasting “late effects” that led to secondary cancers and other difficulties.
“Late effects” is such a great phrase, as if the complication that emerges is sort of apologetic: “Oh, I’m sorry, I would have been here on time but I’m afraid I’m running late. I hope you don’t mind if I greatly diminish the quality of your child’s life.”
Of course, when chemo really took off in the 1950s, docs were simply happy to be able to kill cancers and keep kids alive. It wasn’t until they started to keep great numbers alive and those children grew up that the field began to question the dosage rates, meaning they started experimenting with how little chemo they could get away with and still eradicate the cancer. I mean, hell, a five-year-survival rate doesn’t exactly mean a lot when you’re diagnosed at age two, as Emily was.
Well, we knew Em was benefiting from all the kids who OD’d—so to speak—before her. But we didn’t kid ourselves: we knew that years from then we might find out that Em herself had been exposed to certain drugs or certain levels of drugs that later would be found to be excessive. That’s just the way it is: the docs calibrate and calibrate and analyze and analyze, and it gets better and safer and more successful for each generation of survivors.
Em received adriamycin-D, also known as doxorubicin, along with two other chemo therapies. Adriamycin was the scariest drug she received because it had the biggest capacity to kill her on the spot through an overloading toxic reaction. It also had the biggest chance of rapidly degrading a key organ—her heart. It did neither during the chemotherapy protocol of 65 weeks (completed over 67 weeks with two, one-week suspensions—an amazing record as any peds onc doc will tell you).
And yet, Vonne and I remain haunted by that drug. It has shown the capacity to kill long-term survivors many years later, usually under conditions of great heart strain—like the labor associated with the birth of a child (as nasty as that sounds). So even as 5-year-survivor rates for all cancer patients rises to 64% today from 59% in the early 1990s when Em was diagnosed, none of that really matters to a 12-year-old who wants to live forever. Emily could conceivably hit the century mark as a cancer survivor, and I’d love to see her do it—in person.
So it’s once again that time of year for us: the annual work-up that always reminds us how fateful July once felt to this family. Em’s diagnostics this year are significantly dialed down from last year’s version, and this is a huge step for us. But frankly, eventually everyone moves into the territory where you stop having the maximum set of tests every 12 months, because all those tests themselves can be a problem (who exactly wants 100 chest X-rays in their life?).
But letting go of that maximum set of tests isn’t easy either. Going through that drill gave us a certain sense of comfort, especially since Em always aced all her exams, so to speak. Plus, it’s pretty scary right now because she’s slipping into a period of intense growth associated with puberty and a lot of theoreticals are either going to evaporate and start demonstrating why our fears were legitimate all these years.
Late effects of note are hearing loss, heart damage, infertility, and cognitive loss. We’ve pretty much ruled out hearing problems and cognitive loss for Em, leaving us fretting over hidden heart damage as she grows rapidly in the next few years and we cross our fingers that her heart grows commensurately with her frame.
As for infertility . . . I’ll feel like this beast is finally licked when I hold her first child in my arms.
I just hope that whatever “unnecessary” suffering Em went through (e.g., doxorubicin is no longer used for patients like her) makes it all the more better for those who come behind. I’ve always said that Emily’s cure was built on the bones of thousands and thousands of kids who never made it. So we do our best to make sure she pays them all back by living the best life she can.
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