Showing posts with label deadline. Show all posts
Showing posts with label deadline. Show all posts

Friday, May 8, 2015

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.

Monday, April 27, 2015

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


"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.”

Friday, September 19, 2014

Around the Web

{photo credit}

An End to Breast Cancer by 2020?

An ambitious and different approach to stopping deaths from this disease. What do you think? Is ending cancer analogous to putting a man on the moon?

Here's One Possible Approach

Let's hear it for antioxidants. I'll be curious to see what clinical trials in actual patients show.

Cancer Survival Rates ARE at an All-Time High

"But these numbers can be somewhat misleading unless they take into account advances in identifying cancers earlier, said Dr. Otis Brawley, chief medical officer of the American Cancer Society.

Survival rates refer to how long a person lives with cancer (including in remission) while mortality rates refer to the death rate, but survival will be longer if the cancer is found earlier, even if the person dies at the same time they would have.

"People don't want to live longer with cancer," Brawley said. "They want to not die with cancer."'

Revolutionizing the Imaging of Metastatic Cancer

With a special shout-out to my alma mater, Johns Hopkins.

Explaining My "Cognitive Deficits," aka Chemobrain

Something about the hippocampus (I can't remember).

Another Possible Vaccine for Breast Cancer?

"CONCLUSION: The E75 vaccine is safe and appears to have clinical efficacy. A phase III trial evaluating the optimal dose and including booster inoculations has been initiated."

Some of the Problems with "Pinktober"

"If you’re not checking your breasts all the time and, god forbid, you end up with one of the most deadly forms of cancer, you could be to blame. In a recent Avon/Pfizer survey, over 50% of respondents believed that those with advanced breast cancers “either did not take the right medicines or preventative measures.” Cancer goes from being a fault in our genes to something we could have controlled."