Thursday, July 2, 2015

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.)

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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

Monday, June 29, 2015

"I May Only Have One Match..."

Almost every week, I hear from one or more of you who are reaching out to me for the first time. Sometimes, you're newly diagnosed; other times, you've been following along for awhile but thought now would be a good time to say hello for one reason or another. Thank you for being my community. It is why I do what I do in this little space here.

At the conference I attended in New Jersey back in April, one of the presenters, Susannah Fox, put it along the lines of this: Patients are out there in a sort of darkness. As patient-advocates, you've lit a match and said, "Hey, I'm over here. Let's find our way through this together." 

Thank you for finding me. Let's find our way through this.

Speaking of lighting a match...

Thursday, June 25, 2015

This is Us

I had this entire post written out -- a post in which I admitted I wasn't even sure this was a topic I should broach, no less -- but when my computer died after a day of traveling this week, the post was lost. So I'm starting over, which I guess answers my question to myself about whether I want to talk about racism on a cancer blog.

After all, racism is its own kind of cancer, isn't it?

I thought: This isn't why your readers come here. This is a blog about breast cancer, and sometimes parenting. Does anyone want to hear your opinion on our country's gun laws or its state of race relations? You have such a small voice, anyway. Who would even listen?

Those were the sounds of my self-doubt, that voice in my head telling me to stay away from this one, but I’ve stayed silent for too long and it’s making my skin crawl. Also, if I can reach 10,000 readers a month? 20,000 on a good month? That's something, I think. And it's a conversation worth starting. We are so overdue for honest dialogue about race in this country. Also, I don't know what else to do, so for now, my action is in my words.

As one blogger put it:

If you have a platform, small or large — a website, a Facebook account, a Twitter account, an Instagram account, an email list, a group of friends at church or on the playground, a family — do you use your platform to help improve things? To discuss our world? To learn? To teach? If not, why not?

But before I get to my words, let's start with Jon Stewart's words. If you haven't seen this, it's worth a watch.

I thought things would have changed after Newtown.

They did not.

I can't quite believe that in 2015, it’s still easier to buy a gun than a car. It means that these terrorists on our own soil make me eye everyone suspiciously when our family goes to the movies, wonder if some rogue nut with a vengeance is going to open fire at a TSA agent every time Chris travels, or worry a little bit every morning I drop Quinn off at school. Our houses of worship aren't even safe.

Guns are one issue and I wish we'd do more as a country to regulate them, but I am not hopeful that things on that front will change anytime soon. So someday I will have to talk to Quinn about gun safety and make sure his friends' parents don't have weapons that could kill him before I drop him off for a play date.

I will also have to talk to Quinn about racism, and hatred, and fear, but not yet. I still want to preserve some of his innocence. I still don’t know exactly what to say. See? There are parallels to cancer.

Here’s the gist of what I want him to understand: he was (and we, his parents, were) born into a certain privilege, even if we have faced some hardships as a family. This is a conversation that will be part of his upbringing as soon as I can find the words. (This analogy to Frozen might help.)

On privilege: did you know I am more likely to survive breast cancer because I'm white?

Fifty years after the civil rights movement, our country is still flying the confederate flag over our state capitols. Ours, because as BrenĂ© Brown says, “This is not bigger than us. This is us.” This isn’t something we can continue to ignore because we don’t live in Florida, or Charleston, or Ferguson. We can’t continue to blindly believe this scourge isn’t happening in our backyards.

News flash: it is happening.

This is us.

I don't imagine these conversations with Quinn will be simple, or easy.

But certainly our talks will be easier than if we were black. Because then I'd have to warn him about continuing to wear his beloved hoodies, which are decidedly cute on four-year-olds, but might bring grave danger in his teenage years. I would have to talk to my son about how people might not trust his word, value his worth, or see his beauty, how some might even call for genocide simply BECAUSE OF THE COLOR OF HIS SKIN.

Or maybe I wouldn't. Because what mother wants to tell her child any of these things? No mother I know.

On my flight home from Maryland yesterday, I sat on the plane next to an African-American woman and we got to talking about motherhood, and in-laws, and our kids, and cancer, and alopecia. Her youngest is a boy, and he's sixteen. Her oldest is a pastry chef. After a bit, because I was working on this post, I asked her whether and how she'd talked to her son about Charleston. Her eyes got a faraway look and she said, "Not yet. He watches the news a lot, and I'll wait for him to bring it up. 'Til he asks. He internalizes things, needs some time."

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Then she changed the subject to the escaped prisoners in New York, how she hopes they don't hurt anyone. We agreed there are some terrible people out there. But also (and mostly) really good ones.


What I hope I can do for Quinn until I find the words to talk about guns and cancer and race, what I hope I am doing, is guide his character to be strong, teach him to respond to adversity with grace and resilience and forgiveness. I'm not trying to jump straight to the Kumbaya part or be too Pollyanna-ish, but I believe we have to look for the good. That's one thing almost four years of living with a metastatic breast cancer diagnosis has taught me.

Look for the good. Find reasons to hope.

This is what we can learn from the mourning families in this tragedy, including a daughter who said at her mom's killer's bond hearing:

“I will never talk to her ever again. I will never hold her ever again,” said one sobbing woman who identified herself as the daughter of Ethel Lance. “You hurt me. You hurt a lot of people. But God forgive you. I forgive you.”

This is us, too.

Monday, June 15, 2015

Around the Web: Like Clockwork

I've been chewing my nails something fierce lately, and I haven't been able to put my finger on why (no pun intended). Then it hit me when the scheduler from my oncologist's office called this morning: I am due for my three-month scans.

Except this time I'm not having three-month scans. I got bumped to every four months, which apparently in my world is just going to mean an extra month of anxiety. My body is that well-adapted to this cycle. My brain knows just when to start acting on-edge, when nightly Xanax pills might be in order once again. After all, I've been doing this for almost four years now.

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It's like clockwork over here.

Except it isn't.

So now I'm all thrown off schedule, my right thumbnail is bitten to the quick, and I do have scans on the books five weeks from now. So I better figure out how to get this anxiety under control because I can't take five weeks on high alert. I will literally run out of nails.

I also made the mistake of mentioning this article from last week's round-up to my doctor by way of his assistant, and so my doctor promptly ordered a bone density scan for me. I've never had one, so this will provide a baseline. It is also, predictably, adding to my anxiety. I don't know if it's cancer, or parenthood, or just being in my mid-thirties, but my mind worries about every possible thing that could go wrong, and not just when it comes to scans (from our toaster catching fire, to getting car-jacked at a stoplight because of course, to sinkholes even though we live in Arizona not Florida. The list goes on.)

Anyhow, here's what I saw around the web this week (but I'm not asking my doctor about any of them, lest he order any more tests for me).

At Long Last, Answering Some Questions about 'Exceptional Responders'

"Silva is what researchers call an “exceptional responder,” the rare patient who has a surprising, dramatic response to a drug. . .

Silva’s story, and those of other exceptional responders, have led to an intriguing set of questions: Could researchers use technologies such as genetic sequencing to figure out what made Silva’s tumor respond to treatment? Could they mine that data for clues that might help other patients? Could they ultimately find a way to make the exceptional more routine?"

Actually, I'd happily submit to more tests if it was to figure out why I've been so lucky, why I've responded to drugs the way I have, and maybe lead to answers that could pass some of that luck on to someone else. 

Last Week it Was the Bones, This Week the Lungs?

"Scientists at the University of Edinburgh said they have discovered a “trigger” that allows breast cancer cells to spread to the lungs. . .

Prof Jeffrey Pollard, the centre’s director, said: “Our findings open the door to the development of treatments that target the tumour microenvironment, which may stop the deadly progression of breast cancer in its tracks.”"

Will the Breast Cancer Test Kit be Next to the Pregnancy Tests at the Drugstore?

"Researchers at the Department of Obstetrics and Gynecology of the Medical Center -- University of Freiburg have developed an approach for detecting breast cancer by means of urine samples. The method involves determining the concentration of molecules that regulate cell metabolism and that are often dysregulated in cancer cells. These molecules, referred to as microRNAs, enter into the urine over the blood. By determining the composition of microRNAs in the urine, the scientists succeeded in establishing with 91 percent accuracy whether a test subject was healthy or diseased."

A Case of Two Steps Forward, One Step Back (Or Sideways...)

"Countering previously held beliefs, researchers at The University of Texas MD Anderson Cancer Center have discovered that inhibiting the immune receptor protein TLR4 may not be a wise treatment strategy in all cancers. This is because TLR4 can either promote or inhibit breast cancer cell growth depending on mutations in a gene called TP53. . .

"This looks like a promising avenue to develop drugs for the worst kinds of cancers," says Brown. "However, if we wish to target this immune pathway, we better pay attention to the TP53 status of the tumor.""

Finding Relief from Post-Mastectomy Pain

Mine is not so much pain as it is a significant tightness throughout my right pectoral muscle and armpit region (to use the anatomically correct term, I'm sure) that no amount of stretching seems to alleviate (although yoga helps tremendously). Chris, if you're reading, I think monthly spa massages would help, too.

My goal {photo credit}
"“Pain is a psychological trigger for worry about cancer recurrence,” said Julie Silver, an associate professor at Harvard Medical School who specializes in cancer rehabilitation. “Treating PMPS really helps to relieve that anxiety.”

PMPS is generally defined as nerve-related pain that persists for at least three months after breast cancer surgery, though it can take up to six months to develop. It tends to occur in the upper chest or the underside of the arm, causing pain that women often describe as burning or shooting, and it sometimes presents, as it did in my sister, as an unbearable itch."

I Might Have to Ask My Doctor About A Daily Aspirin Regimen

He can't order any tests based on a question about aspirin, can he? 

"A daily dose of aspirin may be effective at blocking breast tumour growth, Indian-origin researchers have claimed.

Dr Sushanta Banerjee, research director of the Cancer Research Unit at the Kansas City Veterans Affairs Medical Center, and his team found that aspirin may be able to ensure that conditions around cancer stem cells are not conducive for reproduction."

And How Law School May Have Led to My Cancer Diagnosis*

"“People really should elevate the importance of sleep to the same level they do diet and exercise to improve their overall health and well-being,” he said."

On that note, I'm going to bed. 

* Allegedly.

Friday, June 12, 2015

How to Tour Italy with a Four-Year-Old

A little over three weeks ago our little family set off for Venice, Italy. I'd never been, and Italy was at the top of my list. You could say I pulled the cancer card when planning our family vacation. I may have said something along the lines of, "You've been three times. What if I never make it there at all?" Cue the violins, right? And so Chris indulged me, with the caveat that he gets to choose the next trip (which very well might be camping in Utah's canyon lands. Our vacation choices pretty well sum the two of us up.)

We toured between Venice, Florence/Tuscany/Sienna, and Rome over the next thirteen days. It was every bit as awe-inspiring as I'd hoped. Everyone keeps asking me what my favorite part was, and to be honest, I have to say the absolute sense of community -- the life lived in squares, enjoying the company of friends and family, lingering over dinners and a bottle of wine, the lack of smart-phones. It gave me a lot to think about with regards to how we live and interact with our neighbors and friends. The focus on togetherness -- without rush or to-go cups -- left me longing for more of that in my own life.

Also, I am deeply in love with Rome, especially its food. Next time, I might just do a culinary tour and forgo the museums entirely. Yes, I believe there will be a next time.

We'd been nervous about taking Quinn -- who turned four just three months ago -- to Europe for almost two weeks. Because how would he do on the plane? How many museums would we have to skip because he wouldn't have the patience for them? How much gelato would we have to bribe him with each day? These were the pressing questions we asked ourselves, never mind my energy levels or health concerns.

Tangent, sort of: I did get my doctor's permission to leave the country for two weeks. Since I'm on an every-three-week infusion schedule, it didn't interfere (much) with my treatment, and since my blood work has looked relatively okay for two years now (as long as I've been on Kadcyla), my oncologist wasn't concerned.  I will say that traveling for this long made me realize I probably can't ever live in another country, or even leave here for more than a couple of weeks, tied as I am to my infusion chair and the insurance that pays for it. Small gripe in the grand scheme of things, but it's just one more way cancer limits your choices.

But I can't complain, not right now. We just got back from Italy, after all. And as for our concerns about Quinn?

We clearly forgot who we were dealing with. 

Here's how to tour Italy with a four-year-old. Step one: make sure he's not on a nap schedule (ding ding ding!) We had that one down like two years ago.

Step two: Show him incredible views.

And put him up to the task of spotting all the lions in Venice. He will want to count them. In every language he can think of. "Mom, how do you say three in French? How do you say five-hundred in Italian?" "I'm not sure, honey," I had to say more than once. Or: "Let's ask Google."

Step three: Carry him in a backpack if necessary (walking six to seven miles a day is exhausting, after all, even for the energizer bunny himself).

Find more lions.

Let him go at his own pace once in awhile.

Show him extraordinary beauty (and make sure he knows he's part of it).

Look at the world through his eyes.

You might see incredible sights!

Let him slide on the bridges (so long as he promises not to fall in the water).

Take breaks.

Let him do some of the navigating.

Try not to have a heart attack as your husband picks him up higher than the railing when you're on top of the world (or on top of Il Duomo di Firenze).

Let him find some magic.

And chase some pigeons.

And more pigeons.

Take more breaks.

Carry him some more. Hey, he's a cute forty pounds!

This might be the most useful tip (and I've lost track of my steps): give him his own camera.

If all else fails, ply him with lots of gelato.

And pasta.

And hugs.

We are settling back in to life where we aren't saying, "Ciao!" at passers-by out our windows in the evening, where we don't have prosciutto and pasta and prosecco nearly every day, where we have doctors appointments again, and scans on the horizon, and temperatures in the triple digits.

But we'll always have Italy.