Around the Web: AstraZeneca Edition

Nope, this post is not sponsored. But I did spend last week (well, two days of it) at a conference for oncology bloggers at MedImmune, the global biologics research and development arm of AstraZeneca Pharmaceuticals. It seems more and more companies in the healthcare space are taking note of how patients communicate with each other and realizing it might be useful for them to join the conversation.

Deep in thought about oncology topics

"The role of the patient has evolved over time and today patients are more involved than ever in their healthcare and look to one another online for support, advice and a sense of community. AstraZeneca strives to engage with patients to ensure the latest information and support resources are available, and help determine where unmet needs remain."

You can read more about the AZ summit here.

I flew out to Baltimore for less than 30 hours on the ground, a whirlwind of sessions and lab tours and conversations with women I'd only previously known online, one of whom (CJ) cofounded METAvivor and has now been NED for six years. Talk about inspiration.

Here are a few of us touring the lab and looking "distractingly sexy," if I do say so myself.

Touring the Phase I Oncology Lab at MedImmune

Speaking of sexy --  how was that for a transition? -- I'm working on a separate post about one of the summit's sessions. It was led by Dr. Sage Bolte and focused on intimacy after a cancer diagnosis, which is not a typo.

But we still have a lot going on here as a family and I'm in a chemo fog this week, so please be patient with me. In the meantime, here's what I've seen around the web since I last posted this series. One of these days, I'll try to be regular about it!

Even More Reason to Cut Back on Stress After a Cancer Diagnosis

"Recently, researchers have discovered that the hormone progesterone, an ingredient in contraceptives and menopausal hormone replacement therapies, might stimulate the growth of breast cancer cells that are resistant to anti-estrogen therapy and chemotherapy. Now, new research published June 22nd in the journal Oncogene, a Nature publication, shows that additional hormones, including stress hormones that are frequently used to treat the side effects of common chemotherapy, could make these effective cancer drugs fail sooner in some women with breast cancer. But there may be ways to counteract the effect."

Promising Results in the Paloma-III Trial for Ibrance/Letrozol

(Which, if you'll remember, was fast-tracked for FDA approval pre-trial results back in February.)

Liquid Biopsies Are All the Rage, But Are They Helping Patients Yet?

"So far, most insurers, including Medicare, don’t pay for these kinds of tests. They don’t think it’s their role to underwrite what looks like a research experiment. Health insurer Anthem labels the tests “investigational and not medically necessary.” Cigna calls them “unproven.”

Eventually, the most important use of liquid biopsies should be to catch signs of cancer early, before symptoms arise—when a surgeon can cure it by cutting it out (see “Spotting Cancer in a Vial of Blood”). Such screening could profoundly reshape cancer medicine.

For now, though, they are being used as “theragnostics”—that is, tests that guide decisions about treatment."

THIS is Why We Walked and Lobbied All Over Capitol Hill

"Cyrus Ghajar, Ph.D., a metastatic breast cancer researcher at Fred Hutchinson Cancer Research Center, has received a $4.1 million Department of Defense Breast Cancer Research Program (BCRP) “Era of Hope” Scholar Award.

The Department of Defense’s BCRP is the second biggest funder of breast cancer research in the U.S. Its Era of Hope award encourages high-impact, collaborative research, particularly among innovative young researchers."

Huge Implications for the Future of Treating Genetic Cancers

“In 10, 15 years, our relationship with genetic disease will be very different from today,” says Jacob Corn, managing director of the Innovative Genomics Initiative—a joint effort of UC Berkeley and the University of California, San Francisco—which is collaborating with drug maker AstraZeneca on using Crispr-Cas9 to gain a better understanding of diseases. “It will be, ‘Oh, my child was born with sickle cell. We’re just going to change that.’ ”

Why Nearly EVERYONE is Excited about Immunotherapy

"10 years to cancer cures 'actually plausible,' Fred Hutch president says. . ."

“And I’ve never seen anything like this in my life,” Gilliland continued. “You give this cell-based therapy that was developed by [Drs.] Stan Riddell and Phil Greenberg at the Hutch, and these tumors just melt away. People go into continuous, complete remission. You don’t need to keep giving the drug, you give it once. One infusion — that’s it.”

The potential for extending this powerful approach into other types of cancer, especially solid tumors, has created a sense of urgency among researchers at Fred Hutch and elsewhere."

An Illustration of How Immunotherapy Works

Four

My Dearest Bugsy-Boo,

Last Friday you turned four years old. FOUR. How the heck did that happen? One minute you were my baby boy learning to walk, then you were climbing up and out of your crib with aplomb, and now you are all mud-loving, solid, strong boy, knocking me over with the force of your hugs. Saturday night as I was tucking you into bed, you asked me if you'd be three in the morning. "No, honey, you won't ever be three again," I said. And then the lump in my throat nearly swallowed me whole. Good-bye, three.

 

Three has been a challenge, I won't lie. But even as I write this, I can hardly remember whatever it is that I've found so infuriating. Already, I only remember you telling me things like, "Mama, when I think of hearts, I think of you." Or, "I'll go with you to keep you safe, Mom," when it's dark in the hallway. Or, when it was circle time at school and the teachers asked all of you what your favorite part of the morning had been and every other kid said playing on the playground or snack time, they told me your answer was, "Playing with my mom." Your love is my best medicine, buddy. You are my super-hero through and through.


Just the other day, on the way to your birthday party, after we'd packed the car with your confetti cake and dinosaur goodie bags to give your friends, you said, "Mommy, you're the best mommy EVER!" and smiled at me so earnestly I thought this is it. There is no greater happiness than this right here.

Your sweetness overwhelms me.

Alternatively, you say things that just about bowl me over, like when I asked you not too long ago why you were having such a hard time listening that morning and you said, "I don't want to listen to you because I just get so annoyed." As soon as I picked my jaw up out of my lap, we talked about why it's still important to listen even if you don't always like what people are saying.

Three going on thirteen. I spent the rest of that day either laughing as I retold the story or impressed by your vocabulary. Of course I think you're brilliant, but I am most proud of how much you care for the people you love, how kind and hilarious you are, how big you hug, how you don't hesitate to call me out when I'm being annoying. Pardon me, sir.

Quinn, you have such a zest for life, and I marvel at your ability to take it all in at a whopping speed, going strong and steady at least twelve hours a day, every day, without pause until you begrudgingly collapse into bed after talking me into just one more book, pretty pleeeeease. You have an insatiable curiosity about everything around you. Right now, you want to be an astronaut. You love dinosaurs and fossils (like your dad). You still love to climb--trees now, and your bed as soon as we'll flip it to a bunk bed, and the drawer pulls in our kitchen as if they're a ladder.

At night, you tell me you still have "five more energies," as part of your read me a fourth book strategy. Can I borrow some of the energies? The truth is, I feel stronger and more alive just being a part of your world. Thank you for showing me how it's done.

I am still putting you to sleep every night. I wait for your breathing to get deeper, for you to roll over onto your left side, bunny and kitty and owl and dinosaur tucked in with you, and then I sneak out if I haven't also fallen asleep beside you in your twin bed, Clifford the Big Red Dog as my pillow. You've started calling me out on it, knowing I will go into your dad's and my room to do some work on my computer, that you'll probably come in to join us at some point around midnight, and so you've started asking me if we can just start in my room instead. No, I say, let's fall asleep here first.

A few weeks ago, on a chemo day for me and when dad was out of town, you woke up as I was getting ready for bed. It was early, not even 10 pm yet. You'd had a nightmare, and your crying sounded as if you were still half-stuck in it, like the screams you wanted to scream kept getting caught in your throat. And then words started to come together, as I scrambled down the hallway to comfort you. "Where are you, Mom?" you choked through a sob, sounding panicked. Some spiral in my mind went immediately to the thought I can't leave him. This little boy needs me. I pulled you in for an embrace and said, "I'm here, buddy," over and over again until your sobs became hiccups.

Later, you told me you dreamt bad guys were taking me from you. So I promised you with all the truth I can muster and all the hope in the world, "I'm not going anywhere." For now, our luck is holding, my scans are still clean, and I am eternally grateful for these days, months, years with you.

Here's to celebrating many, many more birthdays together, buddy. (But slow down just a little, okay? We only get to do this once.)

Don't forget I love you more than anything.

Love,
Your Mama

Like Watching the Grass Grow

As I mentioned back in June, I've been working on growing out my hair. And I haven't been updating you as promised because it would literally be like watching grass grow. Except, you know -- hair.

At this rate I'm going to be forty-two by the time I have enough to donate. But it's been six months so I thought it would be a good time to finally show you the progress I am making. (Here's where I started, if you're interested.) Also, I went a little darker for the fall, if you're keeping tabs on that sort of thing.

Another thing about this process: I schedule my hair appointments to coincide with my scan results. Am I the only one? Just in case I have to go back on broad spectrum chemo-chemo and lose my hair again, I don't want to do anything to it and be told I'll lose it a few weeks later. So I had my scan on November 10th and my hair color appointment two days later. My next scan will be in late February or early March, so expect another update then -- at which point maybe it'll finally be past these darn ears of mine.

(Also, our family photos are courtesy of Jenny at Jennifer Bowen photography, and I am absolutely thrilled with them.)

Plus, a gratuitous photo of Quinn, just because that expression. He will probably get everything on his Christmas list because of that face. What can I say? Santa is a softie.

A Request for Rainbows

My friend in hospice died last week.

My heart hurts.

I'd met Renee at a support group meeting just over two years ago. At the time, she was in her first round of treatment for early-stage triple negative breast cancer. She had a new baby, so we bonded over being diagnosed so soon after our pregnancies. I was sporting a cute pixie cut then, being six or seven months out from my first round of chemo. She was excited to see how quickly her hair might start to grow back.

{"Prayer Bear" made by Renee}

Last summer, she sent me a note telling me her cancer had recurred, in her lungs. With triple negative breast cancer, treatment options are limited. Hormone suppression doesn't work because the tumors aren't fueled by hormones. Targeted treatments like the ones I've been on aren't effective because the Her-2 receptors aren't over-expressed like mine are. There is chemo, there is surgery, and there is radiation. And while there are lots of different types of chemo, when one stops working, the next is less likely to work, until none do.

Renee died the day after I met with my oncologist and he told me that if my clean scans continue for another year, we might be able to think about taking a break from my medication. It's a huge maybe. A lot can happen in a year. But the possibility exists.

And yet. My heart hurts.

I made lasagna and took it up to Renee's husband and little girls on Tuesday, because food is what you take to those who are grieving, right? But even as I spoke with him in hushed tones about how he was holding up, about how his girls were (as the oldest one played in the other room and the younger one napped), I mentioned that the gesture seemed empty. A pan full of food wasn't enough, but what could be? He told me his oldest daughter cries for her mom every night. Lasagna can't fix that.

My mom was here visiting, so I left Quinn with her while I went up to visit Renee's family. Her mom was also visiting, helping with food and laundry and caring for those girls in the wake of losing her own daughter. I couldn't help but think of what my mom -- my family -- would go through if I died.

People talk about survivors' guilt, and it's not that, exactly. I don't feel guilty, so much as hollowed out, utterly gutted by each loss. And scared. I am scared of dying of cancer.

I wailed as I drove away from Renee's house. I miss our late night chats -- about how we'd be the anomalies, the ones to watch our kids grow up, the ones to survive twenty years with this diagnosis. The end came quickly for her, so there's mercy in that. Things were going relatively well, and then they suddenly weren't. A month later, she was gone.

Wailing seemed appropriate.

Renee called me a few weeks before she died, from the hospital. She told me she was at peace with whatever was coming, and I remember feeling disappointed. Please don't give up, I wanted to beg her. But what do I know about where she was coming from? I have not been steps away from hospice. I have not been on four different chemotherapies in a year, only to have progression into my brain. I have not been where she was, faced quite the anguish she must have been facing.

And I know she didn't give up so much as let go. There is a difference. There is only so much a body can handle. I wanted to hug her, wrap her in love and let her know everything might be okay. Which I guess is what she was telling me when she called me that day. She was going to be okay.

Still, my heart. It hurts.

Another friend sent me a note last week to let me know her dad's cancer treatment was changing, and also that a mutual friend's cancer was back. It was a rough week, even with my good news. Is it just me? Is cancer everywhere in your world right now, too? I hope it's not as ubiquitous as it seems from my perspective.

My scan was clean. I am absolutely grateful for that. One friend told me, "Well, you're the rainbow!" Perhaps there's some of that. But I could use some more rainbows, if you've got them? Some more good news to balance some of this grief?

My heart could use it.

The Busiest People Ever

"We are the busiest people EVER!" Quinn announced the other day.

We were driving home after preschool pick-up, and I'd asked him about his day. As usual, he told me he "played and played and played!" And then, in an adorable pattern I've noticed lately, he's starting to ask things like, "How are YOU, mom?" or "How was YOUR day?" Our conversations are becoming two-way streets, even if those roads often lead to tales about dragon-sauruses who've turned into trolls.

I told Quinn I'd had a "doctor's appointment" (my CT scan), lunch with my friend/book editor, and that we'd gotten good news that day. Just in case you're not on FB/Twitter/within a few blocks of my home where I spent Monday squealing like an excited pig over the news, my oncologist called with my scan results: it was clean. This marks one year of No Evidence of Disease.

We celebrated as a family Monday night, cheers-ing our glasses of wine to Quinn's milk. The twitching in my right eyelid that's been plaguing me since mid-day Sunday has almost stopped. For now, I'm taking a break from my nightly dose of Xanax.

But I've been circling back to Quinn's comment about how busy our lives are, and wondering if we're over-scheduled. I try to give us ample downtime (see: days in front of the TV post-chemo), but I also try to accommodate Quinn's requests to spend time with friends, introduce him to new activities, and maintain a semblance of routine. We still go to swimming once a week. We just planted our fall garden, since that's what you do when it's still 85 degrees outside in November.

On Tuesday morning, we went to our friends' house, where we walked to the nearby Veteran's Day parade. That afternoon, another friend dropped her son off for a few hours so she could make it to a meeting (school was closed). By bedtime, Quinn was fried, and it showed.

I laid down with him as he fell asleep, a habit we're still clinging to. He wrapped his arms around my arm, holding my hand to his chest as he nodded off. My heart tightened. We try to protect him against everything I'm going through, to keep our anxiety away from him, to not talk about potential outcomes around him, but it's impossible for some of it not to seep into our daily lives. And kids pick up on so much. This strong, brave boy, who is exhausted from the hectic flow of our lives, has already had to know too much, sense too much, experience too much.

So, with my good news and the holidays approaching (because when could be a better time for trying to slow things down, amiright?), I'm going to work on making our lives slightly less busy, slightly less anxiety-ridden, slightly less scheduled and see what happens. The flip side of that coin is I'm looking at adopting a dog, though, so maybe we will still be the busiest people ever, just with more slobbery kisses.

An Update

After chemo yesterday, I'm feeling pretty queasy today. I don't usually take Quinn to daycare on Tuesdays, but the option was available today so I took advantage of it. And even though our trip to Portland alleviated much of my anxiety going into this week, I still cried into Quinn's pillow in the dark as I laid down to tuck him in last night. Some of it was the slight stress I was feeling over my scan results -- UPDATE: as I was writing this, my doctor called to tell me MY SCANS WERE CLEAN!

There's no easy transition here, and mostly, my tears last night had to do with a friend, Brigid, who was admitted to the hospital yesterday for the third time in the last couple of weeks. It is really tough to celebrate my good news at the same time that my friend suffers. The tumors that have been plaguing her lungs for nearly eight years with nary a symptom are now growing so fast they are causing her lungs to repeatedly fill with fluid despite procedures to drain them; Brigid can no longer breathe very well unassisted. 

{Brigid and me, December 2013}

On paper, Brigid's cancer is very similar to my own: Stage 4, Her-2 and ER/PR+. But the drug that has held me in remission for nine months now had almost no effect on Brigid's cancer. Killing cancer is not yet a perfect science. 

When I first met her, I was in awe of how long Brigid had lived with this disease -- about five years at the time. As I approach the three-year anniversary of my diagnosis, though, I realize five years isn't close to enough time; neither is eight years. Is there ever enough? Are we ever ready to throw in the towel? Does it matter what we want?

Who knows why I respond to drugs that haven't stopped Brigid's disease from progressing? Who knows how long my luck will hold? For now, I am feeling an odd mix of relief and fear for my friend. My stomach is doing flip-flops, and this time I can't entirely blame chemo.

Six Months

I wanted to write this post before my meeting with my oncologist Friday, thought about how I'd construct it, whether it would include a photo of clinking champagne glasses (or, possibly, God forbid, a slew of obscenities), but I didn't want to jinx myself. I mean, sure, I felt great, but what if he came into the exam room and told me it was time to change chemo? After all, he'd done it before. Spoiler alert: this time he didn't.

What if I'd written--in black and white, where things become real--a whole scene of how I wanted the day to unfold, only to have my heart broken? So I held off on writing until I was certain, until I'd heard the words straight from my doctor's mouth: "No cancer." At which point, I hugged the poor man.

My scan was clean! My scan was clean! My scan was clean! 

Also, no destructive bone lesions, which is good.

Then I had a celebratory lunch with my dear friend Sandi who went with me to my appointment (because Chris couldn't make it this time) and tried to will my frazzled nerves to calm the heck down. I think it took about six hours until I didn't still feel like I was going to vomit from the stress of this appointment. Mental note: I have got to figure out a way to not do this panicked, angst-y routine every three months. If you have suggestions that go beyond Xanax, please let me know.

Nothing changes in my routine: I'll still go in for blood work every week, still have infusions of this chemo every three weeks, indefinitely. I've been on Kadcyla a year now; my blood counts look relatively normal and the other side effects are mostly manageable. And my oncologist is of the "if it ain't broke, don't fix it" camp. As much as I'd love to not have to have chemo interrupting my life every third week, it is huge safety net for me. Which is a good thing to have when you're walking a cancer tightrope. 

This scan is my third clean one in a row (holy smokes!) and marks six months of no evidence of disease  (NED) for me. I was asked the other day how long I'd been in remission, and I didn't really know how to answer. Based on the National Cancer Institute's definition, I'd say NED equals remission, so the answer is six months, although nobody in my cancer world seems to use the term remission anymore. Is that unique to me? To breast cancer? Either way, I'll take it. 

Guest Post

I have never done this -- posted someone else's work on my blog. But there was so much good information in Katherine's post (you can visit her blog at http://www.ihatebreastcancer.wordpress.com) that I asked her if I could share it here. (She agreed.) I saw it on a day when I'd been thinking about all I've learned since my own diagnosis, thinking how naive I was when I first heard I had breast cancer (which is perhaps a good thing, since I didn't know exactly what I was up against). Katherine's story is not the same as my story, and that's part of what I've learned. Breast cancer is not one diagnosis, not one story, not at all what I expected more than two-and-a-half years ago.

*****

WHAT HAVE WE LEARNED ABOUT METASTATIC BREAST CANCER, CHARLIE BROWN?

I am coming up on my fifth year of living with metastatic breast cancer. I am fortunate–I started with a low volume of bone mets and five years later my disease has remained fairly indolent. Not everyone is so lucky–and believe me, it is only luck. It isn’t like I tried harder or did anything special–I was just “lucky” enough to have a “kind” of breast cancer (ER/PR+; HER2-) and bone-only disease that has been fairly low key. I try not to take this for granted.

As I think back to what I knew about breast cancer in 2009, I am embarrassed. I really didn’t know anything. I remember puzzling out the facts of my case–as though I was in high school muddling through my Spanish homework–constantly stopping to look up words  and rereading everything. Now I like to think I have a basic fluency in breast cancer, but I also realize there is so much I don’t know.

When I was first diagnosed with metastatic breast cancer, I wanted to set the world on fire. I think I have calmed down a little bit. I hope I have become more focused.

Prior to my own diagnosis, I thought of breast cancer as one disease. I didn’t realize that the absence or presence of cell receptors--as determined by one’s pathology report–guide treatment as does HER2 status. (“The  tissue is the issue,” as my friend Marnie says.) Tumor characteristics ultimately determine what “kind” of breast cancer one has.

Most breast cancer can be categorized as follows:

• ER/PR+; HER2- (accounts for 65% of breast cancer cases)
• ER/PR+; HER2+ (accounts for 20%  of breast cancer cases)
• ER/PR-; HER2-. (accounts for 15%  of breast cancer cases)

Update: A couple of readers with ER-/PR+ breast cancer noted that the above is a bit of an oversimplification.  Here is a further breakdown courtesy of BreastCancer.org :

• ER+: About 80% of breast cancers are estrogen-receptor positive.
• ER+/PR+: About 65% of estrogen-receptor-positive breast cancers are also progesterone-receptor-positive. This means that the cells have receptors for both hormones, which could be supporting the growth of the breast cancer.
• ER+/PR-: About 13% of breast cancers are estrogen-receptor-positive and progesterone-receptor-negative. This means that estrogen, but not progesterone, may be supporting the growth and spread of the cancer cells.
• ER-/PR+: About 2% of breast cancers are estrogen-receptor-negative and progesterone-receptor-positive. This means that the hormone progesterone is likely to support the growth of this cancer. Only a small number of breast cancers test negative for estrogen receptors but positive for progesterone receptors.
• ER-/PR-: If the breast cancer cells do not have receptors for either hormone, the cancer is considered estrogen-receptor-negative and progesterone-receptor-negative (or “hormone-receptor-negative”). About 25% of breast cancers fit into this category.
• HER2+: In about 25% of breast cancers,the HER2 gene doesn’t work correctly and makes too many copies of itself ( HER2 gene amplification). All these extra HER2 genes tell breast cells to make too many HER2 receptors (HER2 protein overexpression).

Also: If you are reading scientific papers, it’s helpful to know that researchers typically  divide breast cancer into four major molecular subtypes: Luminal A, Luminal B,  Triple negative/basal-like and HER2 type. Read a detailed explanation here.

Inflammatory breast cancer (IBC), the kind my mom had, refers to an unusual presentation–there’s no lump, the disease is generally found at Stage 3 or Stage 4. In general, IBC is first treated with chemo, followed by surgery and then radiation. Hormone receptor and HER2 status guides treatment–someone with IBC could have ER/PR+ HER2- breast cancer, for example.

I knew invasive ductal carcinoma (IDC)  (starts in ducts)  and is the most prevalent kind–it accounts for 50 to 75% of all invasive breast cancers. Invasive lobular carcinoma (ILC) (starts in milk glands, aka lobules)  is the next most common type, making up about 10 to 15% of all invasive breast cancers.  ILC generally does not have “lumps” like you’d find with IDC. Instead, ILC grows as sheets of cancerous cells–therefore it is harder to find via mammograms or self exam. With ILC, for any given stage or grade, the prognosis is similar to that of IDC. The pattern of metastases is slightly different vs. IDC–lobular carcinoma can metastasize to unusual sites, including the gastrointestinal tract, peritoneum, and adnexa (refers to uterus/ovary).  Invasive lobular carcinoma is more likely to occur in both breasts compared with other types of breast cancer. ILC tends to occur later in life than IDC — the early 60s as opposed to the mid- to late 50s.

I knew that breast cancer had stages and that Stage 4 wasn’t good. I didn’t realize that no one dies from early stage breast cancer–but that 20 to 30 percent of those with early stage breast cancer will go on to have a metastatic recurrence.

I did not know that a de novo presentation–someone who is metastatic from first diagnosis, is the exception rather than the rule. About 90% of those with metastatic breast cancer were previously treated for breast cancer; only 10% of us are metastatic from the start.

I did not realize that our US cancer registry does NOT track breast cancer recurrence–even though that is how most people join the metastatic breast cancer ranks. The NCI and SEER databases record only incidence, initial treatment and mortality data.  What happens in between — in terms of recurrence and the exact number of people living with metastatic breast cancer — is undocumented. As Musa Mayer says, ““It is as if these metastatic [people]  are invisible, that they literally don’t count. And when we don’t count people’s needs, we can’t provide or plan for them.”

I did not know breast cancer could spread to your bones, liver, lungs or brain. I knew it was bad if it spread beyond your lymph nodes.

I did not know that having the “worst” kind of breast cancer doesn’t necessarily mean you will have chemo right away. I assumed ALL cancer patients had chemo.  In my case, I will not have chemo until all of  the less toxic options have been tried first. This is both because of my cancer’s characteristics ( ER/PR+; HER2-);  and because my cancer remains under good control. Someone with triple-negative breast cancer can’t use  the anti-hormonal drugs (Tamoxfin; Femara, etc) that I do–their cancer would not respond (because it lack the necessary cell recpeptors).

I did not know having metastatic breast cancer means you are a patient for life. Or that the average patient may receive eight or 10 different treatment regimens in sequence. When one drug fails, you move on to the next one. 

Most people with MBC see their oncologist every month. If  the cancer is under good control, these appointments might be less frequent. But for most it is at least a monthly visit.

I did not know every three or four months I would have scans to see how well or  if my treatment was working. This is anxiety provoking and hard to understand if you have never experienced it.

I didn’t know my scan results could be categorized as No Evidence of Disease (NED), Stable (nothing got bigger or smaller, everything stayed the same); or Progression. I have never been NED but I have been stable, which is good, too.

I did not know that in some cases, people can live with metastatic breast cancer for a long time. I assumed everyone with metastatic breast cancer immediately got really sick and soon succumbed to the disease. While that does happen to some people, it is not universally true. Prognosis depends on many factors, including disease subtype and tempo.

I knew that not having children increases one’s risk for breast cancer, probably because of the unopposed flow of estrogen. I didn’t realize HAVING children increases a woman’s risk for breast cancer for about 10 years after giving birth. I would be willing to bet many women’s doctors either don’t know this or assume that this is a rare occurrence.

I assumed that being diagnosed with metastatic breast cancer at age 43 put me on the younger end of the MBC spectrum. I have sadly discovered this is not the case. I have met women in their 20s with metastatic breast cancer. While it is true that breast cancer is a disease of aging, I think members of the general public would be shocked to hear from some of these young people. Anecdotally, my experience is that there quite a few young women with MBC–too many, in any case.

I did not know that although breast cancer is diagnosed in far more white women, black women are far more likely to die of the disease.

I knew that men could get breast cancer but I  assumed this hardly ever happened. I have met (in person and online) at least five men with metastatic breast cancer. I am pretty sure these men and their families take scant comfort in the “rare” categorization.

I assumed that if one needed financial aid, one could merely call upon one of  the well-known cancer associations or national breast cancer groups. (Let me stress I am fortunate that I have not had to seek financial aid, but I know many who have.) I have learned that few national groups disburse funds. Typically one has to get help  from a local chapter or affiliate or community group and once those funds are gone for the year that’s it. I have learned most aid is fairly modest–getting help will require applying to many different sources.

I did not realize how poorly funded ALL metastatic cancer research is.

I did not know that a  drug that PREVENTS metastasis may not SHRINK a large, refractory tumor. It has a different mechanism of action that is NOT picked up by the clinical trial system. I did not realize some of our best metastatic researchers are advocating for a new approach to clinical trials.

I did not realize that most Breast Cancer Awareness Month coverage focuses almost exclusively on those with early stage disease. People are either afraid of our reality or prefer to ignore it in favor of  “feel-good” stories. Of course, we’ve also seen the other extreme–someone assuming ALL people living with MBC are on their deathbeds, which isn’t necessarily true either.

I did not know the  incidence of stage IV breast cancer—the cancer that is lethal—has stayed about the same; screening and improved treatment has not changed this.

I did not know breast cancer kills 40,000 annually in the US and half a million worldwide. Breast cancer remains the second leading cause of cancer death for women in the US, and it is the leading cause of cancer death for women globally.

Most of all, I did not know that there was so much that I did not know!

Cheers to a Clean Scan

We got the news this week that my chemo is still working. My PET/CT scan was clean, which is remarkable. There are no signs of malignancies in my body for the second scan in a row. When my oncologist told me the news, I sobbed with relief. Because no matter how much yoga I do, these scans still put me on edge.

The last time I had back-to-back clean scans, I was ending six grueling months of super-toxic (technical term) Taxotere. My fingernails were barely holding on, and I'd said good-bye to my eyelashes and eyebrows months before. But a clean scan meant a break from chemo, and I'd been certain I'd see a long-term remission on maintenance drugs alone.

Just four months later, though, cancer proved that line of thinking wrong. In May 2013, I started TDM-1/Kadcyla, a targeted treatment that's been called the smart bomb of chemo. Every new treatment brings anxiety and trepidation. How would the cancer respond? Would the side effects be tolerable? And, yes: would I lose my hair again? 

I'd heard rumors of women being able to stay on this particular drug for years at a time, but didn't quite believe it could happen. Cautiously, I'm starting to feel optimistic this could be me, too. The side effects are tolerable (even if my chemo brain is out of control). I've kept my hair. And most importantly, this drug is working. 

Cheers to that.

Results Not Typical

My head is still spinning from my meeting with my oncologist Friday morning. They always say to take a tape recorder to these appointments, and you know what? They're right. Because it's impossible to remember how everything is said, what specific words or tone of voice are used, which questions you asked versus which ones you just thought in your head but forgot to say out loud. Before you know it, you're being shuffled down the hall for blood work and told he wants to see you again in a month.

Here's what I do remember.

My heart was racing and I felt like I was going to vomit. I grabbed a few tissues out of the box so I wouldn't be caught off guard if he came in with bad news. When he walked in and announced, "No cancer!" I realized I'd been holding my breath.

It feels so good to breathe again.

My results are not typical. I am lucky beyond measure that I am responding this well to treatment. Aggressive breast cancer like mine was does not normally wax and wane the way mine has, even with the world-class drug options I've got. My oncologist told me he was perplexed by my case and up all night trying to figure out what we should do next -- meaning, should I continue to take chemo for a cancer that (for now, at least) appears to be gone?

I have been in this position before. After my first round of chemo, just two days before Christmas 2011, I got the news that my scan was clean. Seven months later, the cancer was back and I started my second round of chemotherapy. Two clean scans and six months of grueling treatment later, I got to take a break in January of this year. By May, the cancer had reappeared.

For now, I am winning this game of whac-a-mole.

So when my oncologist asked me whether I wanted to continue on my current drug or take a break and see what happens, I asked whether there were any long-term toxicity effects for TDM-1/Kadcyla. Being told that there are not, I opted to maintain my current treatment and continue getting infusions every three weeks. There are side effects, yes, but it's a trade off I'm willing to take to keep cancer at bay and my sanity within reach.

We'll reassess in another three months, with another scan and decisions to make based on what it shows (or doesn't). I have heard rumors of women being able to stay on this drug for years. These types of claims cause hope to take root. And sometimes you just need a little glimmer of hope to hang on to.

***

Last weekend, to try to take my mind off my upcoming scan and get out for an overdue date night, Chris and I went to see Gravity in 3D. Chris didn't love it, but I couldn't stop thinking about it for days afterward. I think the last paragraph of this review sums up why:

If anyone asks me what "Gravity" is about, I'll tell them it's a tense adventure about a space mission gone wrong, but once they've seen and absorbed the movie, they'll know the truth. The root word of "Gravity" is "grave." That's an adjective meaning weighty or glum or substantial, but it's also a noun: the location where we'll all end up in time. The film is about that moment when you suffered misfortune that seemed unendurable and believed all hope was lost and that you might as well curl up and die, and then you didn't. Why did you decide to keep going? It's is a mystery as great as any in physics or astronomy, and one we've all grappled with, and transcended.

Scanxiety

The period leading up to a PET scan and the time spent waiting for results are often fraught with what people in cancer-land dub "scanxiety." I don't really know how to describe the feeling except to say you try really hard not to get your hopes up, but there they go, imagining your future - one in which you have hair again and that new house you've been shopping for. One in which you've sat at a sidewalk cafe sipping red wine and fattening yourself up on freshly made pasta in Italy itself, maybe as the Mediterranean breeze blows through that new hair of yours. It's a future in which you teach your little boy how to tie his shoes and cheer him on at his first baseball game. Your hopes take on a mind of their own during this period, and you panic at every thought in which the outcome might not be what you want. I can go on and on about how none of us really knows our future and how important it is to live in the present, but when it's time again for my scans every third month, all those platitudes fly straight out the window.

Last week, as I drove to pick Quinn up from daycare the afternoon after my PET scan, I got a call from my oncologist's office confirming my appointment for the following day. No word about scan results, just a matter-of-fact, all-business call to confirm an appointment. Routine, I'm sure. But it set me off--my heart started racing, my palms got all sweaty on the steering wheel, and I convinced myself that it must mean bad news, since last December, when it had been good news, they'd called and told me over the phone. 

I immediately called Chris to see if he could calm me down. "They probably don't even have the results yet," he tried to comfort me. My throat was closing up and I was contemplating how I would pull over on the exit ramp leading from one freeway to another since I was not sure I could safely drive. "Worst case scenario, they've got lots of other drugs they can try," he said. He was right--as usual when it comes to these things--but rational thought isn't at the forefront of my head in the midst of a panic attack. 

So when we hung up, I called my oldest friend, Alana, who was in the middle of her own craze trying to pack for a weekend trip with twenty minutes until she had to leave for her flight. Her frenzy took my mind off my own stress and she even made me laugh a bit. I promised her I'd call as soon as I had any news. 

Less than a minute after our call ended, my phone rang. It was my oncologist, calling to tell me that my PET scan was completely clear. "They don't see anything," he said.

"Totally clear?" I asked. "There's nothing at all?" I checked again. I wanted to make absolutely certain I'd heard him correctly before I told anyone.

I hugged Quinn extra hard at pick-up that day. "We did it again," I whispered in his ear.

I still have another three months of this chemo cocktail, as my oncologist wants to be absolutely certain this time we knock out each and every one of these cells. But assuming another clean scan mid-January, he'll take me off the chemo component and leave me on the other two maintenance drugs. If our luck continues, this will put me into long-term remission. On the other hand, I'll continue to have scans every three months, so if anything does come up, we'll catch it early again and I'm confident I'll continue to respond well to treatment.

Chris and I celebrated our four-year wedding anniversary and my clean scan this weekend. And I feel like I have another lease on life, even if I have to renegotiate this contract every three months. Turns out, I'm a pretty good negotiator.