How to Talk to Congress

I am way out of practice when it comes to trekking in heels all over the unforgiving, marble halls of Congress. When I went to DC last week, I thought I was being sensible with 2-inch pumps instead of the stilettos I wore in my twenties. I was wrong. My feet are still healing from the ensuing blisters.

Was it worth it? To the extent it meant getting in front of legislative staff for my Senators and telling them my story -- absolutely. I'm not sure if I changed any minds, but here's what I can report and some advice for talking to your own Senators, whether you can make it to DC or not. 

Here I am after meeting with Helen Heiden, legislative assistant for Sen. Jeff Flake (R-AZ). 

I'd like to think this meeting had something to do with the decision to delay the vote on Senate healthcare legislation until after the 4th. Either way, doing my part to #ProtectOurCare by telling my story to staff of @jeffflake

A post shared by Jen Campisano (@jencampisano) on Jun 27, 2017 at 11:00am PDT

I realize I look slightly annoyed. Some of that may have been my sore feet, but it's also the fact that Senator Flake has not said one way or another how he'll vote on the proposed replacement bill for the Affordable Care Act. This legislation, called the Better Care Reconciliation Act (BCRA for short), will gut Medicaid spending by nearly $800 BILLION, allow states to opt out of the requirement that insurance companies include essential health benefits (EHBs) in their plans, and give massive tax cuts to the wealthiest people in this country. It is hardly a healthcare bill.

For Arizona alone, the proposed legislation would cost more than $7 billion over the next ten years. More than 400,000 Arizonans would lose coverage. We are a state that expanded Medicaid services under the Affordable Care Act, and it has been a success story. As Sen. McCain's staffer put it to me, "We don't want Medicaid to change in Arizona! Enrollment is up, and costs are down. It's exactly what we want to see." Even our governor, Republican Doug Ducey, has spoken out against the current draft of the Senate legislation.

Over this July 4th recess period, new proposals to amend the BCRA have emerged, including an amendment by Texas Senator Ted Cruz that would strip the few remaining protections for those of us with pre-existing conditions. This proposal makes the legislation even worse for the estimated 16 million cancer survivors in this country, not to mention all of the people with other conditions -- such as diabetes, asthma, high blood pressure, anxiety, and the like -- who would no longer be eligible for affordable care. The Cruz Amendment sounds dreadful, but has been hailed by a few more conservative senators as a requirement for moving this legislation forward.

So what can you do to help stop this? How can you talk to your Senators about this legislation?

• Call. I have my own senators' DC and local numbers programmed into my phone, and make a point to call and talk to a staffer every day. You can also call 844-257-6227 to be connected to the senators in your state.
• Write letters. 
• In any case: identify yourself as a constituent. Be polite, be brief, but make sure to share your personal story about why gutting Medicaid, or defunding Planned Parenthood, or stripping protections for pre-existing conditions or essential health benefits is bad for you and your family.
• If you can't think of how this affects you personally, feel free to share my story. Or my friend Danya's, who also lives here in Phoenix. 

After my meeting with McCain's staffer last week, I pressed the button for the elevator, and out walked Senator McCain himself. I introduced myself, and said I was in town from Phoenix to talk to his staff about my experience as a cancer survivor. "I'm one, too," he responded as he shook my hand. "I know, sir," I said, then explained to him that I hoped he'd continue doing what's best for Arizona and voting against legislation that's not good for cancer survivors or our state.

And if your senators are opposed to this legislation? Please still call them and share your stories. They need to hear appreciation for their stances, and need to know why this matters so very much.

I Am Still Screaming (Even if Not on My Blog)

With each one of these false starts, I feel like I owe you all an apology for being gone for so long. I haven't meant to disappear, and I haven't even given up on blogging, I don't think. My friend Sandi says that sometimes she closes her journal and moves on to another one, whether the pages are full or not. Sometimes, she's done with that chapter of her life and needs new pages -- and a new journal -- for whatever's next. I don't know if that's where I am with this blog, but I like her approach. Am I done with this chapter in my life? In the sense that I am no longer a full-time patient, yes. In the sense that I am fired up and trying to advocate for a better world for cancer patients and survivors, not even close.

So what's my excuse for being away for so long?

That "E" is for employee. Today I started a (very part-time) position as an adjunct professor teaching international law. I'm still noticing frequent bouts of chemo brain but hope, with practice (and help from my real professor husband!) I'll get used to this working world thing again. Here's to dipping my toes in the waters. Or just jumping in full-force. 💦

A post shared by Jen Campisano (@jencampisano) on Jan 19, 2017 at 11:58am PST

Well, there was the whole issue of teaching international law to actual students, which meant reading and dissecting case law and contextual background and news (SO MUCH NEWS) enough to be able to explain the materials in a mostly coherent way twice a week for the spring semester. That is done now except for some final grading, so we'll see how they -- and I -- did. We all did okay. Mad props to my husband for professor-ing full-time for more than seven years now. That shit is not easy. And I didn't even have to apply for grants.

Side note: Don't get me started on funding for science. I will point to the fact that it was 99 degrees here yesterday, 14 degrees above average, and it's STILL APRIL. See? I started this post ages ago. Now it is hotter and I am angrier. For example: WHAT THE FRESH HELL IS UP WITH THIS ADMINISTRATION'S BUDGET PROPOSAL? 

But what I'm most angry about this spring is the four vibrant, beautiful, young friends I've lost to metastatic breast cancer in the last couple of months, and how the issue of cancer death is only going to be exacerbated by this White House's policies toward healthcare and science (not to mention its general disdain for women).

In a super emotional state last week sometime in April, through uncontrollable sobs, I texted my friend Deborah to ask, "Why me? Why did I survive?" She wrote back exactly what I needed to hear: "As for your friends dying - I don't know why you're ok and they're not. And I don't know why you lived in a reality where you had mets and your friends did, too. Then you didn't have it but they still do and now you have to watch them all die of this thing you were going to die from...that's fucked up. I can say all the good things like how you can advocate for them and since you're not going to die, you can keep fighting for funds and research but really? It's just fucked up. You're going to relive this over and over and it's not fair. It's awful."

It is awful.

I look at Mandi's last post from the beach, or the posthumous entry by her husband (grab your tissues), and I hate that she didn't have more options. Breast cancer got into her spinal fluid and there was basically nothing left her doctors could do, even though they tried a number of drug combinations. I think of how she counseled ME through the uncertainties that arose with my diagnosis change last spring, before I'd told anyone else in the community, how she assured me even as she faced pain and drug failure after drug failure.

I look at Anna's beautiful video,



which I can hardly watch past the point where it shows her artwork that says, "but I have two small children" (5:02). But you should watch it. Watch as these women joke about setting up a dating profile for Anna's husband, or writing a letter, "to the future mother of your children." Too many children are losing their mothers. I remember my conversations with Anna about how hard it was to parent with metastatic cancer, but we just did our best to appreciate every exhausted moment, even when we felt like shit because of treatment. I remember how she walked me back from crazy-town when I thought a terrible headache meant brain mets. She had brain mets, and that wasn't what hers felt like, she promised.

I look at Louise's obituary, and think - she was only 42, which sounds at once so young and also so very old in the mets community I know, where most women are in their thirties and praying to see forty. Weez, as she was known, lived with mets for more than seven years. When she was still on Facebook, she cheered whenever I posted a "no evidence of disease" status.

I look at the tributes to Beth, and remember how we laughed at sharing the same birthday. I wasn't as close to her as some other women were, but I had so much respect for her calming, steadfast presence in the world of MBC advocacy. That's the thing about MBC advocates, though -- eventually, most of them die of the disease they're trying to end.

*****

In March, I went to Oakland to attend my FIRST Young Survival Coalition Summit. I'm part of YSC's 2017 class of RISE Advocates, which I'll write more about later, assuming I can find my focus this summer. I hadn't made it to a YSC Summit in the past because they always coincided with Quinn's birthday, which I wasn't willing to miss. This year, the summit was a weekend later, so I went. There is nothing quite like finally being able to hug a friend in person after knowing them online for years. But I realized I am still very much straddling two worlds, or trying to find my way in one as I no longer quite fit in another. I'm part of the "survivor" crowd now, though I don't know if I'll ever be comfortable calling myself that. I got a lanyard colored to indicate more than five years since my diagnosis. I did not get a metastatic-colored lanyard. But the majority of my friends fall into that group. They're the ones I joined for dinner.

Eight of the ten women in this photo live with metastatic breast cancer. Can you tell who? They are my tribe, even as I am no longer one of them. And even if it's not always through blogging, I will keep doing my part to be a voice for them.

Want to help? Please raise your voice to talk to your Senators over the next few days and weeks, to tell them to reject the terrible House legislation that would allow states to end protections for those of us with pre-existing conditions. How? I have my Senators' local and DC office phone numbers programmed into my phone. I call them regularly. I am polite, but make sure I relay my point. I don't always know if it's effective, so I also make a point to send the occasional letter. There are apps who will reach out for you, too. Whatever method you choose, please just get involved. My friends' lives are on the line, and I'm really tired of being angry.

Cancer Advocacy Update

My friend Beth has been denied the chemotherapy drugs her doctor is recommending she get to treat her metastatic breast cancer. Her insurance company, +Blue Cross and Blue Shield Service Benefit Plan doesn't think she should have them. They did a cost-benefit analysis, apparently, and decided Beth's life wasn't worth it. I think that about sums it up.

I am angry, and you should be too.

***

Photo by Stan Mouser

I flew to DC last week and spent all day Thursday at a policy roundtable to discuss the future of cancer policy post-election. What happens to the Patient Protection and Affordable Care Act (ACA/Obamacare)? Will Vice President Biden's Cancer Moonshot still get funded? Is Paul Ryan going to be successful in privatizing Medicare? Will the Medicaid expansion go away?

Mostly, I listened, because there were some serious wonks on those panels, women and men who've spent their entire careers focused on healthcare policy and how to improve the system. I also asked a few questions. 

Deep into a discussion on "high-risk pools" and the need to draw in "young immortals" to decrease overall insurance costs, I raised my hand. 

"Hi. I was one of those 'young immortals' until I was diagnosed with metastatic breast cancer at age 32. Metastatic cancer in young people is on the rise, but people are also living longer with cancer. Cancer is expensive. What about lifetime and annual limits, which are currently prohibited under the Affordable Care Act?"

To which the response was, essentially, "Your life matters. I'm sorry for your experience. But trade-offs will have to be made."

Trade-offs. This is what we're up against, folks.

***

Here is what I learned, although nearly every speaker admitted we are all trying to read tea leaves at this point. No one really knows what a Trump administration is going to look like, but we do know that the Republican Congress of the last several years has voted to repeal the ACA more than 60 times. 

One panelist likened it to a dog who finally caught the car. The question is what does the dog do now? 

1. Repeal and replace was just a campaign slogan. The general consensus was there is not currently any republican agreement on what to replace the ACA with. So there will be efforts to repeal, possibly with a phasing in of something else down the road. There are legislative tricks up those republican sleeves, including a way to repeal without the requisite sixty-vote majority typically needed in the Senate. Get poised to hear budget reconciliation a lot. And if you don't currently have insurance coverage and think you might want it, APPLY FOR COVERAGE NOW. Keep current on your payments. Those with existing coverage may be grandfathered in to new legislation, if and when new legislation is introduced.
2. Medicare (and Medicaid) as we know it is at risk. Speaker of the House Paul Ryan has repeatedly made it clear he wants to overhaul Medicare (likely to privatize it, similar to what happened with our prison system. That didn't work out so well.) Another panelist said she'd be shocked if this happens in the same year as a repeal of Obamacare, but it's still at risk. While many panelists cautioned that republicans gut Medicare -- and potentially alienate the AARP crowd -- at their peril, Paul Ryan and company seem determined to move on this one. And if the ACA is repealed, so goes the Medicaid expansion. 
3. Cancer Moonshot funding is a concern. Congressional appropriations for fiscal year 2017 are at a stand-still because of the election (with another continuing resolution expected before December 9th), and didn't include specific funding for the moonshot anyway. At least one advocacy organization is urging its followers to reach out to Congress and demand a vote on NIH funding this year, rather than flatline the funding at 2016 levels. Another opportunity for funding the moonshot is the 21st Century Cures Act, which increases funds in exchange for decreasing regulations at the FDA. But prospects for that legislation during this lame-duck session are murky. I feel like I'm giving you answers straight out of a Magic 8 Ball: reply hazy try again. 
4. Speaking of the Moonshot, MATCH Trials have begun. These clinical trials aim to analyze patients' tumors for genetic abnormalities for which we already have targeted therapies. We might have data from these trials in as soon as one year. The current acting director of the National Cancer Institutes is planning on staying on in this administration as long as possible. Typically, it takes new presidents about a year to replace these appointees.
5. Advocacy is more important than ever. Every speaker mentioned it. We need to tell our stories and show that we are more than just a cost in the cost-benefit analyses that Congress and insurance companies are doing. We need to talk about why the Affordable Care Act is important (protections against prohibiting coverage for pre-existing conditions and bans on annual and lifetime coverage limits are my two gems). Is the ACA important to you? TELL YOUR STORY HERE. And write, email, or tweet Congress to tell them your concerns. 

***

After a full day of policy information that was admittedly bleak, I went with a representative from MetaVivor to meet a friend on Capitol Hill. We talked about how her office can help us in the cancer community. We have allies on the Hill who understand how expensive treatment is, who know women (and men) are dying by the hundreds every day, and who want to keep the protections that have been in place for several years now. They (and I) also understand the current system isn't perfect, but we don't believe the answer is cutting off protections and coverage for millions of people. 

People like my friend Beth cannot afford gaps in insurance, let alone insurance that isn't working for them and denying treatments. Another friend told me she would stop treatment rather than bankrupt her family, if she lost her access to Medicare. My friends are having to think about making the choice to die or pay their bills.

We have work to do.

Get Out And Vote

I wasn't sure I was going to write about this election on my breast cancer blog. I mean, what does politics have to do with cancer or healthcare? Quite a bit, actually.

My dear friend Beth is currently in a fight for her life because her insurance company, a federally-run group, has denied the combination therapy that her DOCTOR recommends she have to treat her metastatic breast cancer. You see, the drugs are not FDA-approved for use in this way, even though trials have shown 93% efficacy in the treated population. Beth has taken her fight to social media, and as a community, we are stepping up in the hopes that +Blue Cross and Blue Shield Service Benefit Plan will hear our voices and #SaveBeth.

It's gross, really, that an insurance company can say no to life-saving drugs.

Here's how it's supposed to work: 1) Patient pays for insurance 2) Patient gets sick 3) Insurance pays for treatment. THAT'S WHY WE HAVE INSURANCE. It's why we PAY for it.

Insurance denials by federal insurers are a policy issue. FDA approvals are a policy issue. Cancer research and how much money gets funneled into research on metastases (not nearly enough, only about 7%) is a policy issue. Policy gets set, for the most part, in Washington, DC. And for cancer patients and survivors, those issues are vitally important.

It is literally about life and death.

I cried tears of relief last year when the Supreme Court ruled in favor of the Affordable Care Act's protections on coverage for those with a pre-existing condition. I didn't know then what I know now about my health: namely, that I was likely never metastatic. But I still will always have had cancer. It is part of my story now, and prior to this monumental ruling, insurance carriers could flat out refuse to cover me.

I have my insurance through Chris. It has been wonderful insurance, covering most of our costs over the past five-and-a-half years, which have included a c-section, a bilateral mastectomy, nearly EIGHTY infusions of chemo or targeted chemotherapy, several biopsies, five weeks of radiation, more scans than I can count, and reconstruction. I have no idea how much all of that has cost, but my guess is Chris and I couldn't afford it out-of-pocket. 

The thing is, our insurance is tied to his job. I think his job is secure, but surprises happen in life. [UNDERSTATEMENT OF FOREVER] If something happened to Chris, would I be eligible for insurance coverage? The Supreme Court says yes. But Republicans have vowed to overturn the law that protects this coverage. I'm not okay with that uncertainty.

Republicans have also promised to defund Planned Parenthood, which provides free cancer screenings for underserved populations. DEFUNDING THAT CARE IS NOT OKAY. Women of color are already at such a disadvantage when it comes to healthcare. Struggling populations don't need one more hurdle standing in the way of their survival.

A republican congress has also drastically cut spending on science over the last decade, and would likely continue to do so. Science is how we get research. It's how we move toward therapies that keep patients like my friend Beth alive long-term. So she can watch her young kids grow up. So she can continue to advocate for other patients living with this dreadful disease. So we can end cancer as we know it.

But this election isn't just about me. It isn't just about cancer. And it isn't just about democrats versus republicans and who promises what.

It's also about the most qualified candidate in my lifetime to run for office, going up against an unprepared clown who seems to think our constitution is a joke and derides nearly every group of people imaginable: women, disabled people, Hispanics, Muslims, Jews, blacks, even those in his own political party. I honestly don't understand the appeal.



This election is about the tone we will set for our country for at least the next four years, but possibly a generation or more. Our kids are paying attention. Quinn tells me I should be president, but short of that, he doesn't understand why a mean person, a bully, would even have a chance. Quinn is in kindergarten and understands that's not how we get ahead in this country. Those are not the morals we defend. We are better than that.

As one of my favorite bloggers put it:

I'm begging you:  please go vote, and please vote with best intention.  I suspect that I don't have to convince you that this man is a demagogue -- I can't imagine you'd be visiting Chookooloonks if you agreed with his stance.  However, if you're eligible to vote in the United States, I beg of you to do so.  Vote early, if you can; if you can't, then on Tuesday, November 8th, please find your way to the polls, despite the weather, despite the lines, despite how busy you might be.  And as you vote, please be mindful:  please don't throw away your vote, and please don't vote for this person simply because you're loyal to his party.   He's a dangerous, unkind, mean man, and he doesn't deserve your vote just because he conveniently chose a major political party to hang his platform on.

There are so many important issues facing our country. Healthcare, the future of our treatment of cancer, and the first amendment are just a few important ones to me. I'll probably lose a few readers because of this post, but it's important. I can't keep silent on it, not this year, not this election. 

Please remember to vote tomorrow. Our lives depend on it.

Lobby Day 2015

It's not every day you get to sit down with one of your state's Senators and watch as his shiny happy demeanor suddenly shifts -- his jaw visibly drops -- as you tell him your story about being diagnosed with metastatic breast cancer at the age of 32, as you tell him you'd like to see an end to breast cancer so you can watch your son grow up. It's not every day you get an audience with that much influence.

But that's exactly what happened on Tuesday, as I logged another 4.5 miles walking all over Capitol Hill in Washington, D.C., advocating on behalf of the National Breast Cancer Coalition, yes, but also on behalf of myself and all of us living with a diagnosis of metastatic breast cancer. After all, NBCC's goal of seeing an end to breast cancer is the same as mine. It is all of ours. And what were a few extra blisters in the name of ending this disease? My feet this week are getting their own post. Stay tuned for that.

I don't know exactly which of the seven offices we visited from the Arizona delegation will support our legislative requests, which included signing on to the Accelerating the End of Breast Cancer Act (H.R. 1197 / S. 746) and maintaining current funding levels for the Department of Defense's Breast Cancer Research Program, neither of which should be partisan issues, but you just never know in DC.

The Act creates a commission to take a look at the various research efforts happening around the country and recommend a way to fast-track those that are most promising while reducing duplicative efforts. It would be a finite commission, ending in 2020. It would require no congressional funding. It seems like it would be an easy ask, but amazingly, it has struggled to get signed into law.

The DoD program provides grants to people like this innovator here in Arizona, who is working on a breast cancer vaccine, among other things. Think about that for a minute. Can you imagine a world in which no one has to worry about developing breast cancer? In which generations to come might only know breast cancer as a disease their grandparents had to contend with? The idea gives me goosebumps.

We asked our delegation to co-sign the legislation before Mother's Day, as a gift to moms (and their kids) everywhere. We've already gotten notice that a few offices want to cosponsor and will be doing so today. I hope our advocacy efforts pay off and this legislation gets signed into law. I hope this commission gets formed. I really hope we see an end to this disease in my lifetime. Now that would make these blisters worth it.

Around the Web: Overdue Edition

Every few weeks, Quinn and I go to the Scottsdale Public Library, which has a superb children's section. There are painted moats on the floor and real castle walls and a drawbridge that leads the way into a reading nook. There are legos for building, a giant stuffed dragon for riding, puppets and a stage for creating stories, and age-appropriate games housed on iPad learning centers. It's a wonderful space. But still, we forget (and by "we," I mean "I") to return in time to get our books in when they're due. I end up logging into my account online and renewing our checked-out books to avoid a late fee and a 15-minute drive.

{We have always loved reading together. Sept. 2012}

Much like our beloved library books, this "Around the Web" series is long overdue for a renewal. Or at least an update, since research is (by all accounts I can find) still happening. Progress, though sometimes achingly slow, is being made.

I don't even know if you guys come here for the research I sometimes post, but I think some of you might. I also think it's important (for my own sanity, if nothing else) to take note of the advances being made on the research side of things. To laud the glimmers of hope out there. Some of them are starting to shine pretty brightly.

***

At the conference I attended in New Jersey a couple of weeks ago, I wondered if I was somewhat of an imposter being at this summit for Online Health Advocates. Was I one? Could I fill those shoes? I mentioned once or twice that I didn't feel so much like an advocate as I did a storyteller, to which a couple of other attendees told me, "Nonsense. That is how we advocate, how we connect with people, through our stories."

Stepping into the role of advocate a bit more fully, for me, means keeping up a little better with the science side of things. (As long as it's not organic chemistry.) I used to be a lobbyist, in my former life back in DC. Yes, stories are how we connect, but when you're sitting in a wonk's office you also better know a little something about the guts of your subject matter. Where is progress being made? What research is most promising? How is it being funded? How can Congress help? I'm exploring a few opportunities that I hope will help me dive even deeper into this arena, and in that vein I'll be brushing the dust off my shoulders to participate in the National Breast Cancer Coalition's annual lobby day before Congress when I'm in DC next week.

{Photo: Mike Boening Photography}

After I walk 39.3 miles.

In the meantime I'm wondering if this is the right format -- or platform even -- for these posts on the research I cull from around the web. What do you think? Keep them here? Or would you subscribe to a newsletter if I promised to keep up with it? Please let me know what you think. And for now, here's the best of what I've found over the past month. (Like I said, overdue!)

Embracing My Inner Pollyanna

via Ann Silberman

"Some cases of metastatic breast cancer are already cured, Sledge said: in the adjuvant setting, where it is micrometastatic disease but still metastatic; and with oligometastatic breast cancer, as the CALOR (Chemotherapy for Isolated Locoregional Recurrence of Breast Cancer) trial has shown recently (Aebi et al. Lancet Oncology 2014;2:156-163).

'So the question is not why can't we cure, but rather why don't we cure more?' he said."

Because Scientists are Doing Things Like This

"Investigators from Massachusetts General Hospital (MGH) and the Harvard Stem Cell Institute have developed an imageable mouse model of brain-metastatic breast cancer and shown the potential of a stem-cell-based therapy to eliminate metastatic cells from the brain and prolong survival. The study published online in the journal Brain also describes a strategy of preventing the potential negative consequences of stem cell therapy.

"Metastatic brain tumors - often from lung, breast or skin cancers - are the most commonly observed tumors within the brain and account for about 30 percent of advanced breast cancer metastases," says Khalid Shah, MS, PhD, director of the Molecular Neurotherapy and Imaging Laboratory in the MGH Departments of Radiology and Neurology, who led the study. "Our results are the first to provide insight into ways of targeting brain metastases with stem-cell-directed molecules that specifically induce the death of tumor cells and then eliminating the therapeutic stem cells.""

Scientists are SO FREAKING COOL.

A Switch to Tame Triple-Negative Breast Cancer?

"Australian researchers have found that so-called 'triple-negative breast cancers'1 are two distinct diseases that likely originate from different cell types. This helps explain why survival prospects for women with the diagnosis tend to be either very good or very bad.

The Sydney-based research team has found a gene that drives the aggressive disease, and hopes to find a way to 'switch it off'."

Promising Outcomes from Early Phase Trials for Metastatic Triple Negative BC

"The high mutation rate of triple-negative breast cancer, which can produce neoantigens that induce an immune response, makes it a candidate for cancer immunotherapy, in particular PD-L1-targeted therapies. In addition, patients with triple-negative breast cancer with high levels of tumor-infiltrating lymphocytes (TILs), have improved outcomes, Emens said."

And for Her-2+ Metastatic Breast Cancers, As Well

""We also saw responses in these women, particularly in those that were anthracycline-naïve," continued LoRusso. "Given that many of the patients had disease that had progressed following treatment with trastuzumab [Herceptin], T-DM1 [Kadcyla], and pertuzumab [Perjeta], these results are encouraging and led to the ongoing randomized, phase II HERMIONE clinical trial, which is testing whether MM-302 plus trastuzumab is more effective than chemotherapy of physician's choice plus trastuzumab for locally advanced/metastatic, HER2-positive breast cancer.

"If the results of HERMIONE are positive, MM-302 may provide another therapeutic option for women with HER2-positive breast cancer," LoRusso added."

Plus a New Signaling Pathway Discovered in Her-2+ Breast Cancer Cells

THIS: "One of the most promising ideas in cancer treatment is to apply a lesson learned in the fight against AIDS (Acquired Immune Deficiency Syndrome): simultaneously attacking a pathological process at different points of weakness can, in some cases, deal a knock-out blow. Just as the so-called AIDS "cocktail" directs multiple agents against multiple targets, so too might future anti-cancer cocktails be directed at multiple, highly specific targets in known cancer pathways."

Don't Worry, Scientists are Finding Ways to Halt Hormone-Driven Cancer, Too

"An experimental drug rapidly shrinks most tumors in a mouse model of human breast cancer, researchers report in the Proceedings of the National Academy of Sciences. When mice were treated with the experimental drug, BHPI, “the tumors immediately stopped growing and began shrinking rapidly,” said University of Illinois biochemistry professor and senior author David Shapiro. “In just 10 days, 48 out of the 52 tumors stopped growing, and most shrank 30 to 50 percent.”"

There's a Lot of Buzz About the Future of "Liquid Biopsies"

"But eventually, we’ll begin to match specific clinical outcomes, such as therapy response, with the circulating DNA that is sequenced. We’re also working on building databases that will show which cancer drugs work most effectively with which cancers at a genetic level. We’re moving forward with this research at an exciting pace; in the next five to ten years, it’s going to make a tremendous difference in how we practice medicine."

The Psychology of Living with Advanced Cancer

“We’re all terminal,” Bellizzi says. “We’re all dying with each passing day, and there’s no way to get around that. I have found that starting my day with that thought helps me change my priorities and perspective. I try to never forget to tell people I love that I love them. If I get in a fight with a family member, I make sure to fix that before I go to bed. We don’t know what’s around the corner. I think it helps us live that way by reminding ourselves that it’s not cancer but life that’s a terminal condition.”

Don't Ignore Stage Four

As I do two out of every three Mondays, after dropping Quinn off at preschool this morning, I headed to my oncologist's office. I had chemo last Monday, so today I was due for lab work. The office is on the other side of town, about a half hour drive from our house even when there's no traffic. More and more, I find myself getting irritated that I still have to check in so often, even after nearly two years on this drug and mostly great blood work (even if I did just have a bloody nose, which are fairly common in my post-chemo-chemo world.)

It's a small thing, this having to check in and have blood drawn from my port every third Monday. Chemo is less of a small thing, but I can justify those visits. The drive is worth it because I'll be there for two to three hours. Plus, chemo is working. I can visit with a friend or catch up on my emails. Labs, on the other hand, take only ten or fifteen minutes, but I still spend an hour in the car.

And yet -- it is such a minor complaint in the grand scheme. Other women in my circle spent the holiday weekend having seizures or being hospitalized from complications of metastatic breast cancer. I have no right to feel irritated about an hour in the car for blood work.

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Today is the first Monday of the month, and there is a movement afoot to spread the word about what it means to live with metastatic breast cancer (MBC). And eventually, we hope, to get more research funding aimed at halting this disease. In my life, right now, living with MBC means feeling cruddy every third week while I recover from chemo. It means a lot of driving to and from the oncology center for labs and check-ups. It means bloody noses about once a week. And it still means scans every 3-4 months. But all of that is mostly manageable. (After all, I have good people around me to help.)

For many people with this disease, side effects and treatments and the cancer itself take a much harsher toll. And after everything we go through to extend our lives, only 1 in 5 of us will live five years after our initial Stage 4 diagnosis. It is such a harsh statistic that the American Cancer Society warns readers to skip ahead to the next page if they'd rather not see the statistics that they put in a chart much further down the webpage.

Despite these odds, I think I've made it abundantly clear that I find so many reasons to have hope. Hope I will be one who makes it way, way, way past the five-year mark. Hope that more and more people with MBC will start having outcomes more like mine, and that doctors start calling this a chronic rather than terminal illness. Hope that the next generation of women won't have to worry about breast cancer at all. Wouldn't that be nice?

If you want to help advance this cause, please consider writing your representatives in Congress, donating to groups like Metavivor (which only funds Stage 4 research), and spreading the word that there is more to breast cancer than early detection.

Around the Web: In Memoriam

The cancer community (and at least a few others) reverberated with the death of blogger and frequent tweeter Lisa Adams last week.

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One woman posted on Facebook, “It is hard to explain to your family why you’re crying over the loss of someone you’ve never even had a cup of coffee with.” Another explained our collective crying, in part:

#bcsm When a cancer sister dies, it is unavoidable: terror of our own death coming by the same means arises, unexpected and strong.
— Xeni (@xeni) March 9, 2015

It's not just fear of our own mortality, of course. We also miss our friends.

I am not alone in missing Lisa's wit and quick comfort. Even in 140 characters or less, she knew how to get straight to the heart of a matter, what to say, how to be a friend, the right words to use to educate the rest of us about clinical trials, palliative care, end-of-life decisions, and how to stay positive through it all (to paraphrase: find or create a bit of beauty).

My friend Renee's birthday was this week. I miss her, too. And Brigid, and Jen, and far too many others to list here.

So, yes, we grieve for our friends. But there is a large dose of fear. We who are living with metastatic breast cancer can't help it. We wonder: when will our luck run out? How will our families cope? Will our children remember us? Have we done enough to leave our marks, given our limited time (and energy)? Will there ever be an end to this disease? Will it (could we dare to hope) be in our lifetime?

Here is a round-up of the news and research that I hope is moving us in the right direction. My hope sustains me. It brings me out of my fear. Here's to hope. And research.

A New App that May Help Advance Research

"Apple could have slapped a pink ribbon on their iPhone cases during October, or donated a percentage of their October pink iPhone sales to one of the breast cancer organizations, and called it a day. Instead, they chose to put skin in the game, working with Sage Bionetworks to develop ResearchKit -- a completely Open Source (read: FREE) platform for the medical research community to help collect patient-reported data efficiently, effectively, and inexpensively."

You can learn more or download Share the Journey here.

Manipulating Cells' Shapes to Treat Breast Cancer?

"Changing cell shape – through mechanical, chemical or genetic means – could be a new way of assisting the body’s own inflammatory response to fight cancer.

“Interest in using the body’s own inflammatory response to fight cancer has been reinvigorated recently because of the promising results of immunotherapy. Our study further supports the need to explore the role of inflammation and cancer, in order to enhance treatments and the body’s own ability to eliminate cancer cells.”

Professor Paul Workman, Chief Executive of The Institute of Cancer Research, London, said:

'Cancer cells are in a battle against the body’s natural failsafe mechanisms that seek out and destroy them. This study underlines the importance of a cancer cell’s shape in helping to tip the balance in its favour, not only dodging an immune reaction but actually thriving in response to it. It also shows that manipulating cell shape could help tip the balance back against a tumour.'”

Another Treatment Option in the Pipeline for Her-2+ Cancers

"Poziotinib is a novel oral, pan-HER inhibitor that has shown single agent clinical activity in breast cancer, gastric cancer, lung cancer, and colorectal cancer, and is currently being studied in several Phase 2 clinical trials.

Poziotinib has shown a remarkable 60% response rate in early clinical trials in patients with breast cancer who had previously failed multiple lines of treatment, including HER2-directed therapies trastuzumab and lapatinib."

Hope for Fertility Preservation in Certain Early-Stage Breast Cancers

"A major international clinical trial has found that the risk of sudden onset of menopause can be significantly reduced by adding a drug called goserelin to the chemotherapy regimen. Women who took goserelin and wanted to have children also were more likely to get pregnant and deliver a healthy baby.

'Some of the most distressing side effects of chemotherapy in young women with breast cancer are early and sudden onset of menopause and infertility,' said Kathy Albain, MD, senior author, medical oncologist and Director of Loyola University Chicago Cardinal Bernardin Cancer Center's Breast Cancer Clinical Research Program. 'These findings provide hope for young women with breast cancer who would like to prevent early menopause or still have children.'"

Lowering the Cost of Cancer Medicines

"The Food and Drug Administration approved the first copy of a biotechnology drug for the U.S. market, firing the starting gun on a new industry that could help the U.S. curb its $376 billion in yearly drug spending.

The drug is a rival version of Neupogen, an Amgen Inc. treatment prescribed to chemotherapy patients."

I never needed Neupogen. Instead, I was given Neulasta, a similar drug that is long-lasting rather than fast-acting. Both work to stimulate white blood cell production. My Neulasta shots cost something on the order of $6,000 per infusion, and I got one after every treatment on my old chemo. 

This news could save a lot of people a lot of money. 

Speaking of Money, A Little Grant to Fund Metastatic Breast Cancer

Care to match this, Congress?

The Promise of PARP Inhibitors for BRCA-Mutated Breast Cancer

"The FDA’s recent approval of the first PARP inhibitor, coupled with current research, suggests that this new class of targeted therapy has great potential to help not only patients with ovarian cancer for whom the agent is indicated but also individuals with breast cancer. Mark E. Robson, MD, clinic director of the Clinical Genetics Service at Memorial Sloan Kettering Cancer Center, presented on this topic at the Miami Breast Cancer Conference.

“It is an exciting time. We have an approval for olaparib (Lynparza) in ovarian cancer and there are active phase III studies for olaparib and other PARP inhibitors in metastatic breast cancer for patients with BRCA1/2 mutations,” said Robson."

This One's for My Husband: Chemo Brain Might be Treatable!

Hallelujah. Right, Chris?

An Advocacy Request

I'm just going to come right out and say it: I am beating the odds already. There are all kinds of statistics out there for the survival rates of patients with Stage 4 breast cancer. Most of them are pretty grim.

After all, there is no Stage 5.

And of course I can't remember where I saw it, but I've read a few times that the median survival time once metastases are detected is twenty-six months. That's not that many months. Ask any mother.

Only about one in five people with Stage 4 breast cancer live to see their five-year cancerversary. Go ahead and re-read that sentence. I'll wait for you.

Of course, there are a million factors that determine how any one person will fare -- extent of metastases, responsiveness to treatment, overall health other than cancer, sheer dumb luck, to name a few. So it's nearly impossible to predict accurately how long someone will live once diagnosed with cancer, and my doctors have never given me a timeframe, other to say they can treat this for years.

Then again, I've never had the heart to ask, "How many years?"

Deep breath. As of about a week ago, it has been twenty-six months since I was first diagnosed. Twenty-six months that I've been living with breast cancer. Twenty-six months since that August afternoon in Phoenix when my blood ran cold and my mouth went dry and I knew the lump was too large to be good news but I researched the statistics for survival anyway because that's what we are led to believe: everyone survives breast cancer. It's PINK, for God's sake. 

I plan to continue beating the odds, to the extent I have any control over it, which, quite honestly, I don't. I'm saving that rant for another post. Please come back in a few days.

This is when I have to remind myself of something my father-in-law often said after he was diagnosed with pancreatic cancer: Statistics don't mean anything to the individual patient. Every body is unique. Every story is different.

Still, it is hard not to take note when you pass certain milestones, especially after you've seen so many friends die. On the other hand, I've also seen many friends live. I know a number of women who are living full lives with Stage 4 cancer five or ten years out from their initial mets diagnosis. "What's your secret?" I want to ask each of them, as if there were a single right answer, as if I could take any one of the suggestions that has been proffered to me from people without cancer (avoid all sugar, don't use plastic, don't eat anything processed, clear your energy fields, tie up emotional loose ends, drink a juice from a guy I know in Mexico, visit this guy I've heard about in Brazil, drink more red wine, avoid all alcohol, and on and on) and -- poof! -- I'd get to live another dozen years, and then a dozen after that if I'm really lucky. It would be nice if it were that simple, wouldn't it?

During the Avon Walk I did last month, I met a woman who was diagnosed Stage 4 nearly eighteen years ago, and continues to stun her doctors with how well she's doing today. She's an outlier; these cases aren't typical. But I think every one of us facing this disease wants to be that outlier, the one who's walking 39.3 miles over a weekend twenty years removed from when the disease first struck.

After all, Stage 4 breast cancer wasn't supposed to happen to us, either. For those of us as young as I am, we are already statistical anomalies, so why not aim for winning the lottery, too? It could happen.

As Breast Cancer Awareness month comes to a close, please think about the fact that, currently, only about five percent of research dollars are spent studying metastases, even though mets are responsible for every death from breast cancer. Maybe if we focused our efforts a little more, more than one in five of us would make it past the five-year mark. Maybe more of us could start to live with this disease long-term. Maybe more of us could watch our children grow up.

As the month comes to a close, I urge all of you to write your Representatives and Senators (as incompetent as they may seem lately) to maintain science research funding levels, specifically the Department of Defense's Breast Cancer Research Program and the National Cancer Institute. If you've never written Congress before, here's what I wrote to my own Congresswoman (feel free to use the parts of it that make sense for your letter):

Dear Rep. Sinema,

I was just 32 years old when I was diagnosed with Stage 4 breast cancer. My son was an infant, and I was nursing when a pesky lump wouldn't go away. By the time my doctors took me seriously, it had spread to my lungs, spleen, and lymphatic system. 

Today, I still receive chemotherapy every three weeks, and the cancer is stable. I have been in treatment for more than two years now. I have lost my breasts, my fertility, my hair (twice), and a number of friends to this disease. 

I am one of the lucky ones because I am still here. 

As breast cancer awareness month comes to a close, I hope that we can begin to move beyond awareness toward better education about the realities of breast cancer and, one day, a cure. 

As Congress -- I hope -- moves toward a consensus on a budget and long-term funding for our government, I urge you to press for continued funding of what we really need in this breast cancer fight: more research. Please vote to maintain consistent funding levels for the Department of Defense's Breast Cancer Research Program as well as the National Cancer Institute. 

Forty thousand people lose their lives to breast cancer every year in this country. Those of us living with this disease live our lives in three-month increments as we wait for results from scans that tell us whether our current treatment is working or that we've run out of options. We need more options, and quickly. 

My little boy is depending on it.

Sincerely, 
Jennifer Campisano

In what seems like a previous lifetime, I was a congressional lobbyist in Washington. I might as well draw on that knowledge for something, right?