Risk Assessment

Dr. Z’s phone call got me out of bed yesterday morning. My local neurologist apologized for disturbing me at an early hour—but he knew he wouldn’t have any time to spare once he started his rounds for the day.
“It’s about Ocrevus.”
Of course it was.
I’d chosen Ocrevus at our appointment a few days before. I’ve been spoiled—I’d been on Zinbryta, one of the most effective drugs for multiple sclerosis out there, until it was pulled from the market. I didn’t want to downgrade. Ocrevus has an associated cancer risk; I’d asked Dr. Z if I could still consider it, even with the recent revelation of my elevated risk of breast cancer. Dr. Z had said the risk didn’t look too bad, nothing to inspire a black box warning; the numbers were more in the neighborhood of correlation than that of causation.
I’d left the appointment with greater clarity than I’d had walking in. Apparently, Dr. Z. left with a nagging feeling of uncertainty. And so he called the drug company (as only a conscientious doctor would do.) The company deferred answering his question, advising him to wait for their big product announcement in May. I am scheduled to get my first infusion in mid-April. Dr. Z thinks it would be reckless to start me on the drug without gathering all the information the company has collected about the drug through its first year on the market. He also thinks it would be reckless for me to wait additional weeks to get treatment. My last dose of Zinbryta was in mid-February. And my MS has proven to be fairly savage if left untouched by anything less powerful than a monoclonal antibody. He didn’t want me vulnerable to an MS relapse. He is a little too fond of telling me that I don’t have much brain left to lose.
Dr. Z suggested I try Tysabri next. Tysabri has been found to be fairly effective, though it comes with an elevated risk of PML, a potentially fatal brain infection. There is a blood test I can take to see if I’d be susceptible to PML. I don’t know which risk I will take if the blood test is positive. I risk a relapse if I hold out for Ocrevus and wait too long. I risk a relapse and potentially harmful side effects if I choose the wrong medication.
And yet, I am cautiously optimistic.
His phone call confirmed I’ve made one good choice already: I’ve chosen a neurologist with integrity. I also have a great resource in my neurologists at the NIH, who throughly answer my questions every time I find myself at a crossroads in this perilous landscape of multiple sclerosis. These researchers are working to make decisions like mine less agonizing. That’s a worthwhile cause, indeed.

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No Cancer.

I met with my surgeon yesterday. She inspected the pretty scar she’d left me, and we agreed that it was healing very nicely. She told me those suspicious looking cells she’d extracted had turned out negative for carcinoma.
I mistook this for good news. No cancer. No worries. Right?
Wrong. The surgeon asked me if I wanted to know the results of my Tyrer-Cuzick Breast Cancer Risk Evaluation, then ducked out of the examining room before I had the chance to answer. She returned with a four page document that concluded with results she and I read very differently.
She’s the surgeon. She’s got the medical degree. I’m the patient. I’ve got the MFA. I’ve never been good at math.
The results were as follows (capitalization theirs):
“Ten Year Risk:
This woman’s Risk (at age 50): 11.0%
Average women (at age 50): 2.7%
Lifetime Risk:
This woman’s Risk (to age 85) 39.9%
Average woman (to age 85) 11.4%”

Maybe I’m a glass-is-half full person, but even if I wasn’t: the ten year prognosis glass is 89% full. That’s pretty darn full.
The surgeon immediately offered me a medication I could take to fill that glass to 100%—a medication, she swiftly added, that could only be taken for five years.
“No medication,” I said. “I take enough medications.”
“If you want to reduce your risk to zero percent,” she offered, “you can get a double mastectomy.”
I didn’t say, “And lose that pretty scar you left me?”
I didn’t roll my eyes. For while I did think her suggestion was crazy, I understood she was coming from a crazy place, witnessing women being brave because they have to be, as they fight for their lives, and all-too-often lose. I took it as a kindness, really, that she didn’t want me to join their ranks. I don’t think she’s an opportunist, trying to make money from some ounces of my flesh. I went along and booked my appointment for another mammogram in six months.
And then I went about my life. I took my “Freedom from Falls” class in the morning. I ran the writer’s workshop at the Senior Living Center in the afternoon. I told the writers my odds. These writers are in their seventies, eighties and nineties. They’ve seen a lot of life. They’ve seen a lot of death. They all agreed with me: those odds looked pretty darn good. I drove home. I did not update my neurologist. I did not update the NIH. I did not update my blog.
I wanted one day of those numbers looking pretty darn good.
If I go ahead with my plan to switch to Ocrevus for my MS medication, those numbers would go up. There’s a bullet point on the Ocrevus site under “WARNINGS AND PRECAUTIONS”
“• Malignancies: An increased risk of malignancy, including breast cancer, may exist with OCREVUS”
What would my surgeon’s Tyrer-Cuzick Tool have to say about Ocrevus? What will my neurologist have to say?

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Over. Next. And Best of All: Now.

A few weeks ago I heard some sage advice in a podcast by the indefatigably creative Norman Lear. He said that two words have served him well in his long life: “over” and “next.”

I’ve been trying those words out lately, and they really do add a lot of clarity.

As of yesterday afternoon, my surgery is over. What a relief that is. The surgeon scooped out those weird cells she was worried about, and now those cells are hers and not mine. Phew. She left her initials on my chest, above a pretty half moon scar.

My husband spent the whole day in the hospital with me, and drove me home to my first meal in twenty hours, which probably wouldn’t have had to be exquisite for me to appreciate it. But his meal was exquisite. He played us Miles Davis all night. Bliss.

exquisite

Today has wound up being one of the best days of my life. My student Barb showed up this morning with Italian wedding soup, which was utterly delicious.

barbsoup

I’ve been inundated with phone calls and texts from friends checking up on me, delaying my progress in updating this blog.

What comes next? The results come next. I don’t expect they will find any cancer, but if they do, that would handy to know, because the next MS drug I want to take seems to be associated with a slight uptick in breast cancer. I’ve chosen to switch from Zinbryta to Ocrevus. Dr. Z., my local MS doctor, has worked with Ocrevus since 2012 and has seen good results; in some cases, Ocrevus has not merely slowed disability—it has ushered in improvement. It’s been a long time since I’ve been able to say I’ve seen improvement on Zinbryta. I am ready for this change.

Zinbryta is over. Ocrevus is next.

I’d like to add one word to the Norman Lear mantra of “over” and “next.” And that’s the Ms. Lab Rat mantra of “now.” I think now has been exactly the right time for me to have had this surgery. Zinbryta may have been great for tamping down the overactive immune response of my MS, but it’s been lousy at permitting me to heal. On Zinbryta, I’d had one skinned knee that took five months to close up.  I am glad I’m going to get a few weeks of reprieve between drugs that rely on super strong monoclonal antibody action. My half-moon scar will need this time to heal.

Thank you for reading!

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