Monday, November 21, 2016

The Update

It's been almost six months since my FAQ, so I thought I'd take a pre-Thanksgiving snow day to do an update about the Best Breast Cancer Ever.

The short story is that everything from the FAQ still holds true: I still have cancer, I still take 3 drugs to control it, and I still feel normal.

Now for the longer story, which I'll do in sections.

The $10,000 Meds

When we left off in June, I had just returned from a second opinion in Boston at Dana Farber Cancer Center. Dr. M at Dana Farber's advice was to add a newly FDA approved (2015) drug called iBrance to the letrozole I'd been taking since January. The letrozole had been preventing any estrogen in my body from bonding with my cancer cells. The iBrance works to disrupt cell division just in case the estrogen does get to the cell or if it learns to divide without estrogen. It's called a CDK 4/6 inhibitor, but I don't know what that means.

Within a few days of my return from Boston, Dr. K (local oncologist) had agreed to this change and my insurance had approved it. I picked up a normal looking bottle of meds from the pharmacy at my oncology center. To my disappointment, it's not actually an iDrug, and didn't come in a white case with an apple.

As any of us would do, before taking my first pill (with food but not with grapefruit), I did some Googling to find out what to expect. Along with people on message boards complaining about fatigue, hair loss, nausea, etc, there were many complaints and anxieties about the price. "What price?" I thought, "I just picked it up at the pharmacy desk." More googling reveals this:

I am taking a $10,000/month drug! And that's with rounding down, because the $340 or $683 don't seem to matter when you're taking a $10,000/month drug!

My insurance approved this within days without any calls, questions, or letters to me. Thank you Excellus BCBS! (Fine print: I read that I have a $500 yearly deductible on meds, and I have asked the pharmacy about this. They said I should receive a bill from my insurance. Then I got my "explanation of benefits" and it said that the $500 will be billed to me by the pharmacy. I went back to the pharmacy, and they don't know who I should speak to. So I owe somebody $500, but nobody wants it.)

This all does make me do some soul searching. What if we didn't have such an insurance plan? What if we were covered at 80%? Could we afford $2000/month to keep me alive? Maybe? Or would we choose to just take the letrozole and hope that those cancer cells don't figure out how to divide without estrogen? What if a future drug isn't covered? Would we diminish our family quality of life to keep me alive a little longer? How are these drug prices set anyhow? What if someday a lifetime maximum is set on my policy?

I just picked up my sixth bottle of iBrance (ahem, Ibrance) the other day and still haven't been asked for money. Paul and I have found humor in the situation when I make my pick-up in the middle of a bunch of errands, then leave the bottle on the passenger seat while running into Wegmans for Brussels sprouts and bagels. Nobody realizes there is $10,000 sitting there in plain view. Is there a street value for iBrance?

There's also math to do here. The drug does a number on my white blood cell counts, so I have to take a week off periodically. The use of the word "periodically" is quite fitting, as it turns out the standard treatment is a 3 weeks on/1 week off schedule. Sound familiar, ladies? So each bottle of iBrance contains 21 pills. Want to see a $476 pill? Here you go:

The Oophorectomy

When we left off in June, I was getting shots to prevent my ovaries from making estrogen, being that my cancer likes estrogen and all. The biopsy that Dr. M at Dana Farber recommended confirmed that the breast cancer in my pelvis still likes estrogen, so the shots were to continue until we could schedule my oophorectomy (ovary removal). I was fine with a casual schedule for that, and planned to wait until the girls were at Camp Kesem (overnight summer camp for children of parents with cancer) to have the surgery.

Then SURPRISE! On July 6, I got my period. Totally normal period, just like the ones I'd had since I was 13, which was really bad news. It meant that despite the shots, my body was still producing estrogen, so the drugs I'd been taking weren't being as effective as they could be, if at all.

After a few stressed out phone calls to oncologist's offices (here and Boston), nobody really answered my question about whether I should take my pills that night or not. It was a medical mystery, but I went with the "it can't hurt" philosophy while getting in touch with my gynecologist to schedule that oophorectomy, stat.

Two weeks later, I was ovary-less and back to knowing my letrozole and iBrance were doing what they were designed to do.

The oophorectomy was done laproscopically, meaning they made 3 little holes in my lower abdomen. One was for a thin camera and the other two were for cutting and pulling out the two ovaries with their connected Fallopian tubes.

This was three days post-oophorectomy. 
It was a tremendously easy out-patient surgery. I went straight from the hospital to an outdoor picnic with a 1/4 mile walk to the picnic site. The next couple days, I felt like I had just done a really hard core workout: sore all through my front and sides, but still able to get up and about without a problem. (Although I did spend a day in bed letting my friend Sara clean the house, because who wouldn't?)

Two weeks later, I did a sprint triathlon, which sounds impressive, but really isn't (see below). And in the past 4 months, I haven't had a period, so I guess I have to trust that the ovaries are really not there any more.

The Scans

Wanting to know if these drugs are working is part of the mental deal for cancer lifers. However, scanning my body weekly or monthly would be exposing me to excessive amounts of radiation. So doctors usually do scans every 3 or 4 or 6 months, depending on the doctor's philosophies and on how the patient feels. As I keep saying, I feel fine. I can feel some discomfort in my left pelvis, but it's no more than you would feel if you sat in one position for 30 minutes and wanted to change positions because you're just a little achy.

Additionally, because of all the problems with the estrogen that I described above, we weren't sure if the drugs had been working optimally, so they needed a chance to do their job. I didn't have any scans from April through October.

During my appointments with Dr. K over these past few months, he would order bloodwork to check on the white blood cells, and occasionally he'd throw in a blood draw for CA27.29, a test that looks for cancer antigens in my blood. A normal person's "tumor markers" are supposed to be under 39. Mine have been coming out in the 40's since these breast cancer mets have been around.

At my October appointment, the tumor marker came out around 64. Quite, a jump, huh? As before, Dr. K and the nurses don't really worry about this, as it's not a reliable indicator of cancer growth, just one piece of the puzzle. But since it had been six months since my last scans, they were ordered. ("Finally!" I thought.)

With some driving around town and some rescheduled appointments due to a broken bone scanner, I had an MRI, a CT scan, and a Bone Scan done in late October and early November. The MRI showed the same exact tumors in my pelvis as before. They haven't grown or shrunk. They're still just there. Medium news. The CT scan shows that nothing has spread to my liver, lungs, brain, or other important organs. Good news.

The Bone Scan is the one where they inject me with a radioactive solution. If an area of my body lights up/glows during the scan, it indicates the radioactive solution is being drawn there, thus showing more cell division than in other places. The results showed, "increased activity" in my pelvis but no growth. Bad news? Dr. K decided that we'll keep me on the same treatment and do a wait-and-see.

The Doctors

Dr. K is a really smart guy. He's extremely experienced. If a study has been conducted, he has committed the results to memory. Other doctors turn to him for advice. He has known me since my initial diagnosis in 2012 and we even have connections from before that (he lived in a house on my street while I was away at college/post-college and he knew my parents). I've always felt lucky that I was assigned one of the best.

However, if you'll notice, I didn't mention any personality traits there. Although there aren't awkward silences (he's a chatty guy), I never felt a "click" with him. That was okay when I was on maintenance visits a couple times a year after my 2012 treatment for stage 3 breast cancer. However, now that I'm stage 4, I will be visiting my oncologist every month or two for the rest of my life. Decisions will be made about treatments where the answer is a matter of opinion. Many times, an oncologist will leave decisions up to the patient after presenting options. Shouldn't I have someone who I can work well with?

I'd been noticing this for a while, but I had an appointment last month where the proverbial camel's back was broken. Dr. K was explaining to an intern (or something...maybe a new oncology nurse) about my whole situation. He was basically reading all of my history off a chart, although he could do some from memory. Each time I'd interject with more details or corrections, he would say to the student, "See. She's really smart." I didn't take that as a compliment. In fact, it felt pretty condescending. I mean, of course I know about my cancer! Of course I do research about it! It's my LIFE! He may think about me for 30 minutes every few months. I think about my cancer every day. Every hour.

Now, I do not expect an oncologist who lies awake thinking about me. However, it occurred to me that he shouldn't have to read off his chart every time he sees me. I would like a middle of the road oncologist. One who might remember me each month. Someone who can share a laugh about the iBrance on the passenger seat. One who is willing to work with me with decisions as opposed to calling me smart for knowing my own story.

I tried to find someone else at the same practice, since I'm familiar with the routines in the building. I made a few calls, asking for a "patient navigator" or "patient advocate". I would ask, "Would it be possible for me to explore the option of changing doctors within your practice? I'd just like to meet someone else and see if I like them better." Each call was met with stammering, questions about which doctor I'd like to see (I don't know any of the other doctors yet!), and a promise that someone would call me back.

So I called the other local cancer hospital. I was set up with an appointment with a Dr. D for the following Friday. (Since I went to Boston in June, I may have to pay out of pocket since this is my third opinion this year, but it's something I needed to do for peace of mind.)

Paul and I both went to see Dr. D last Friday. She was fantastic! We could talk. She would skip over parts of her generic "Welcome to Breast Cancer" speech if she could see that I already knew stuff. She asked my opinions about things and could tell from my questions when there were things that made me anxious. She admits that she doesn't know everything and will work with other doctors when questions come up (and will happily work with Dr. M at Dana Farber). When I mentioned the recent bone scan "increased activity", she actually took the phone out of my hand to look at the document I had saved there describing the bone scan.

It looks like I have a new doctor.

Dr. D believes that the bone scan likely shows activity that has been there all along, but my original bone scan was done when I had that fractured pelvis so we couldn't see the cancer activity. She verified that the tumor markers are just indicators and since nothing else is showing growth, we should stick to the letrozole/iBrance treatment.

On the very day I met Dr. D, I finally got a call with a suggestion of a new oncologist at my regular practice. I wondered out loud to Paul whether I should meet that doctor, too, but he responded, "What could this new guy say that Dr. D didn't?" I don't think there's anything.

Now I just have to break up with Dr. K.

The Triathlons

Imagine you were a competitive swimmer through college, doing workouts of up to 10,000 yards a day (on double days). Then 20 years later, with a little practice, you are asked to swim 600 yards. No problem at all. Seriously.

Then imagine you can ride a bike. Given an unlimited amount of time and a flat roadway, you could ride 18 miles, right?

Also, picture all of those people wearing costumes, pushing strollers, or being sprayed with paint during any of the thousands of 5Ks that occur each month.

Put those three things together. It's about 2.5 hours of easy exercise. Triathlons don't stress me out at all. I did two of them this past summer after finding out about stage 4 cancer.

The problem is that I haven't been training. At all. Between November 2012 (the end of chemo and radiation) and April 2016 (the diagnosis of metastatic breast cancer), I trained my butt off. Research has shown that staying in shape can prevent cancer recurrence, so I was going to heed that advice!

But it didn't work. Cancer came back. As much as you all think I'm positive and inspiring and shit, I have lost my motivation to exercise. I know it's still good for me, but I don't wanna. I have cancer. I will die way sooner than you. Why should I exercise? As long as I can shovel the driveway this winter and throw together another triathlon next summer to inspire you all, what's the point?

So here's where all of you, "Let me know if I can help?" friends come in. Who can help motivate me?

You know I'm a rule follower. If someone motivates me, I'll make a checklist of the exercise I have to do each day, and nothing will stop me. But if it's too easy, I'll blow you off, and if it's too hard, I'll fracture my pelvis again. I'm not going to make this easy for you. I think I need an intervention!

Most of you have never seen this insane side of me, have you? Ball's in your court.

The End


  1. I love you, Shari. Simple as that.

  2. Ok it's go time. I accept the challenge. PM me your availability and the coach in me is going to take you to knew heights...and your goal this time...mental health. That is all...burn the crankies off -Cdz

  3. Game on lady! It is time to get back in the pool together for life practice...not exercise, just living. I love you and thanks so much for the update. Christine P.S. I need my tri buddy by my side!

  4. Ugh...I am supposed to be exercising and keeping my BMI down to prevent my cancer from reaccurring. I have not been able to find the motivation as well!
    Here for ya,

  5. I am lacking severe exercise motivation also, it sucks, partially because I injured myself last time.the cost of ibrance is insane. Xeloda and Tykerb aren't far behind. *shakes head*

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