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.

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 265 other followers

Advertisements

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?

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 265 other followers

Two Letters

twoletters

After many years of dosing myself with Zinbryta on the 15th of the month, yesterday marked Day One of my negotiating multiple sclerosis without the aid of a monoclonal antibody.

My disease has toned down quite a bit since I started taking the drug. Has my MS been mellowing with age—or with medication? That’s been the seven thousand dollar a month question: What is me—and what is the drug?

In a parallel but hopefully irrelevant experiment, my visits to the breast cancer folks inspired me to ditch my deodorant. It took a day to learn that without deodorant, I stink.

It was easy enough to replace the brand I’ve depended on for decades with an equally effective brand that is untainted by propylene glycol and aluminum, ingredients that are potentially carcinogenic yet remain as blandly ubiquitous as the pink ribbons protesting the persistence of breast cancer.

Will replacing one monoclonal antibody with another be as easy as swapping Secret’s “Protecting Powder” for Desert Essence’s “Tropical Breeze?”

The nurse at my neurologist’s office warned me it might take up to six weeks for my insurance company to approve a new MS medication. I chose to see the potential benefit of the delay—I have been noticing that my wounds tend to heal a lot slower on Zinbryta. Perhaps I’ve been lucky to have a mass removed from my breast just as my immune system is getting weaned off an MS drug.

And yet I could not ignore the risk a six-week interval poses: the stakes are a lot higher going off an MS medication than going off a deodorant. MS is opportunistic, and tends to spring into action whenever the body is vulnerable. Perhaps undergoing surgery was the worst thing to do while getting weaned off an MS drug.

The day after my surgery, I got a call from a nurse from my insurance company. I usually regard such nurses as corporate spies. I have no dearth of interactions with health care professionals, or with human beings in general, so such calls do not fulfill an unmet medical or emotional need. But this time around, I did have a need. I decided to play nice. I discovered this nurse was actually more informed than most of the nurses the insurance companies had sent my way. When I found myself searching for the term, “monoclonal antibody,” she supplied it for me, and tactfully assured me I had nothing to worry about when I complained that my facility with language felt somewhat impaired after the general anesthesia. When I told her about the anticipated delay in getting my new medication approved, she promised she’d see what she could do to expedite things.

She was as good as her word.

Two hours later, I got a call from my neurologist’s office. The new drug, Ocrevus, had been approved.

On March 16, Day One of my life beyond Zinbryta, I received two letters from my insurance company.

The first letter denied coverage for Ocrevus.

It’s funny how seeing a letter on stationary can feel more convincing than on one’s own memory. I was tempted to check my calendar, just to confirm that I did indeed have an upcoming appointment for an Ocrevus infusion. Instead I opened the second letter.

The second letter was dated on March13th, the day of my conversation with the insurance nurse. It was a notification of approval.

Thank you, insurance nurse!

I’m so glad I took her call.

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 265 other followers

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!

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 265 other followers

Lab Rat Plot Twist: Zinbryta Pulled Off The Market

I was on the line at the post office when one of my local MS doctors, Sandra Parawira, called to give me the news before I heard about it through the media.
Zinbryta, the MS drug that has staved off my MS attacks for the last 12 years, had just been pulled off the market. A few Zinbryta patients in Germany, and one in Spain, were found to have developed encephalitis. Sandra urged me to come into the office to visit with her on Wednesday. If her concerned tone of voice hadn’t done enough to convey the urgency of the situation, the immediacy of my next appointment in her busy practice surely did.
But was I worried? Not particularly. I have NPR to thank. On my drive to the post office, I’d been listening to an interview with a medical researcher on Science Friday. The researcher, Dr. Kang, was promoting a new book about “cures” throughout history that had done more harm than good. As I listened to Dr. Kang recount Marie Curie’s fondness for the radium which would later kill her, I’d idly wondered which of the drugs or supplements I was currently taking would later be exposed as a toxin. Five minutes later, I got the call that the drug I’ve credited for giving me my life back has been taken off the shelf.
While I have my doubts that a drug I’ve taken safely for 12 years was about to give me encephalitis, I am still seeing this change as an opportunity. Many new players have entered the MS landscape in the 12 years I’ve been on Zinbryta. Perhaps the drug I’m assigned next will improve my life as drastically as this one did.

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 265 other followers

The TRAP Trial Begins with the Lifting of a Magic Latch (Part 5 of Ms Lab Rat’s Latest NIH Adventure)

At the close of my most recent installment of my chronicle of a Day-In-The-Life of an NIH Lab Rat, I was about to enter the phlebotomist’s cubby.
You notice I then abandoned the narrative for blog posts about light subjects such as breakfast and…biopsies. Needles. I just can’t get around them.
Gentle Reader, I am not so fond of needles. You would think, after over twenty years of self-injecting medications—once a month for Zinbryta, once a week for Avonex, once a day for Copaxone—I would be jaded by now. I am not. I squirm when I see an injection on TV. (For me, the most memorable moment of the very memorable movie Traffic occurred when the daughter of the anti-drug Czar smiles drowsily as she shoots drugs through a needle into her arm. I have yet to smile drowsily while injecting. It’s a goal.)
As I took a seat in the phlebotomist’s chair, I couldn’t help but notice a thank you note strategically posted across from the hot seat. Had I been a strategic blogger, I would have taken a picture of the note so it could later serve as the featured image of this post. But that’s not the person I am, nor the person I want to be. There was a brief period of time when I used to collect experiences for my blog. Once I realized I was collecting experiences instead of experiencing experiences, I backed off. So that’s my excuse for why there is no photo of the thank you note, or even a transcript of it. I can only offer you a paraphrase. The note went something like this:

Dear Mr. So-and-So,
Our son has undergone intolerable challenges. Somehow you managed to make the whole ordeal fun for him, and we can’t thank you enough for being a light in this very dark time.
With gratitude,
Mom and Dad of a Very Sick Vulnerable Boy

This note comforted the hell out of me. And put me on notice that I’d better not be wimpier than the Very Sick Vulnerable Boy.
By this point in my fairly vast experience with a wide variety of phlebotomists, I’ve learned that most are ordinary people, whose needles puncture flesh. But there are a few phlebotomists—a select few—whose needles create the sensation, not of a puncture, but of a lifting of a magic latch. So far, the phlebotomists I’ve encountered at the NIH fall into this latter category of elite magicians.
I did not ask this fellow to tell me more about this note he had on display. I’ve found, the hard way, that it’s best not to get personal with a health care technician when they are about to get to work. One time I asked a nurse, How was your weekend—a
seemingly innocuous question—and tears sprang to her eyes. The next thing I knew, she was telling me how her little boy had been out riding his bicycle right on their block when he got hit by a car. She then connected electrodes to the wrong place on my foot, and I endured 15 minutes of non-therapeutic electric shocks. Served me right.
So no, I did not ask this phlebotomist to tell me more about the little boy in the note. I was rewarded for my reticence. He told me—they all tell me—that I have good veins. And then he magically extracted blood from those veins, without my feeling a puncture, but rather, a lifting of a magic latch.

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 265 other followers

MS Blog with Boob Pic

Ms. Lab Rat is supposed to be a blog about an intrepid gal who joins clinical trial after clinical trial, surfing on the cutting edge of multiple sclerosis research.
Ms. Lab Rat is not supposed to be a blog about an anxious gal whose left breast is on the cutting edge of a surgical scalpel. But that’s where this MS blogger will be, while The Art Academy is closed for Spring Break.
Sorry.
(I know, I know, I shouldn’t be the one saying sorry. But have you have ever met a person who did not apologize for a physical misfortune beyond their control, be it mild hearing loss, Sorry, could you repeat that?—to terminal cancer, I’m so sorry I won’t live to see my baby graduate high school. You want to say: I’m the one who’s sorry.)
In this case, Gentle Reader, you needn’t be sorry for Ms. Lab Rat—yet. I have health insurance. (Thanks, husband.) I have a support system in place. (Thanks husband/family/friends.) And I don’t have cancer. (As far as the pathologists can tell.)
What I do have are a few cells that kind of look like they could turn into cancer…or look like the type of cells that tend to hang out with cancer cells. The pathologists couldn’t really agree on what to make of these suspicious cells. Which was why it took them a week, and not the promised one to three days, to call me.
As it happened, I got this call just two hours after I’d learned I have severe osteoporosis, and just a half an hour before I was scheduled to teach Artist as Reader. I was in the middle of an enormous copy job, which involved making 17 two-sided copies of the 92 page screenplay of Get Out. The call made me laugh. Two bad health updates in two hours? Who gets that? It seemed too bad to be true. My biggest fear remained the complicated copy job. I really really hate copier jams, especially so close to class time. Trivial frustrations like that are somehow harder for me to take then even super grim news. The printer didn’t jam. I was genuinely relieved, and genuinely curious to see what my students would think of the manuscript. I couldn’t be bothered to update my blog post about my osteoporosis diagnosis with a dramatic PS. I had a class to teach. Besides, my mom reads my blog. (Hi, Mom!) I didn’t want to worry her.
I am now scheduled for a third biopsy, a surgical excision that will scoop out the entire perplexing nodule and resolve any unanswered question. I’ll be glad to be rid of the uncertainty. I’m not yet skilled at living with anxiety. Last night, I had a hard time getting back to sleep after my 4th or 5th fourth trip to the bathroom (thank you, MS bladder.) I tried meditation after meditation, but stayed awake from 2am to almost 4. (I fell asleep just fine after trips seven and six.) OK, maybe it’s time to botox the old bladder again. Do you see how living with MS is in itself a full time job?
I was grateful to have yoga today, to help me unwind and expand, physically and mentally. As I had hoped, I was not the only student at this week’s class for yoga with MS and Parkinson’s. I met two intelligent, ambitious women there, an accomplished artist and an accomplished writer, and best of all, I got to catch up with my buddy Monica. We lingered over our Wahls-compliant lunches to chat about breast biopsies, and so much more. In a few short weeks, we’ll have matching scars.
It seems no MS story is as simple as just one diagnosis. At least, not for those of us lucky enough to be living decades with MS—long enough to encounter the usual trials of mere aging. Maybe Ms. Lab Rat is a typical MS blog, after all.

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 265 other followers