Where to Turn for Help After a Cancer Diagnosis

I've got a few things brewing over here, including an event that's taking Quinn and me to New York City next week (more on that to come) and the fact that I sent my completed manuscript to my agent last week (!!!) I'm excited to share all of this with you guys as it unfolds, and I hope with every ounce of my being that what I'm doing -- all of it -- is of service to the metastatic breast cancer community.

{here's a hint about our NYC trip}

As part of one of these initiatives, I was on the phone the other day with a woman who's working on a story about living with metastatic breast cancer for October, that loaded month, and she asked me whether I felt there had been enough resources and support services when I was first diagnosed.

Um, NO, is the quick answer.

But it got me thinking that I should write about the resources that have emerged and what I've found useful, in case it might help someone else out there. Have any to add? Please leave a note in the comments!

• One major source of information was Dr. Susan Love's Breast Book,* which is now in its sixth iteration. I especially appreciate that this new edition includes an updated chapter on metastatic disease that offers some hope for emerging therapies and longevity. This book has been called "the bible for women with breast cancer," with good reason. When I was first diagnosed, I wanted to know as much as possible about the cancer inside of me, without the fear that can be brought on by "Dr. Google." Here was my answer, clearly laid out in the pages of this easy-to-read book. Fully indexed and written for the layperson, Dr. Susan Love's Breast Book takes a comprehensive look at breast cancer prevention, staging, treatments, pathology, and emerging research. In a field where new information is always emerging, this book offers a treasure trove of the latest data.

• I have a love/hate relationship with support groups, both online and in-person. I love the potential of what they have to offer, but participating in them can be an emotional roller coaster. After all, you get close to people and in many cases, you have to face their worsening health or death. For awhile after my first course of treatment -- and every once in awhile since then -- I need a break to let my emotions recover a bit. When I was first diagnosed, a friend referred me to the Young Survival Coalition's Facebook support group. At the time, it was both a treasure trove of other women who were going through the same treatments as I was and a place where I didn't feel I completely fit in because there weren't many women with metastatic disease (fortunately). In the last four-plus years, I think YSC has done more to support metsters, but other groups targeted at young women with Stage 4 breast cancer have also emerged on social media. If you want to be added, find/message me on Facebook (link from the button on my blog). Note that there are fairly strict privacy rules on these boards. 

• Speaking of social media, you may have heard me mention the Twitter chat with the hashtag #bcsm. This takes place on Monday nights at 6 PM Pacific / 9 EST. Topics range from the invisible scars of breast cancer to parenting with cancer to how to change the conversation around metastatic breast cancer. The chat is for all stages and ages, but is an excellent way to share information and find support. 

• I have mentioned before how lucky I am to have the health insurance and access to care that I do, but I know everyone isn't so fortunate. I do think that the Affordable Care Act has made significant strides in ensuring access to care. I, for one, am relieved that I can't be denied insurance despite my poor health history. For assistance with co-pays and drug costs, check with the drug company providing your drugs. I know Genentech, the company that makes Kadcyla, has patient assistance programs to offer reduced-cost drugs to patients whose insurance doesn't cover the cost.**

• On a similar note, the reason I walk in the Avon 39 Walk to End Breast Cancer every year is because of the programs they fund to provide everything from free screenings to women who can't afford them to meals to people who've been diagnosed with cancer. Obviously, services will vary depending on where in the country you are, but here are a few national organizations:
• Cleaning for a Reason: "Our mission is to give the gift of free house cleaning for women undergoing treatment for any type of cancer. Our goal is to let these brave and strong women focus on their health and treatment while we focus on, and take away the worry and work of, cleaning their homes– free of charge." I reached out to this service early on in my treatment and they didn't have any partnered cleaning companies in Phoenix/Scottsdale, but they may be worth a try in your area.
• Look Good/Feel Better: Because sometimes a little blush does make it easier to face the day.
• Little Pink Houses of Hope: Offering family beach vacations/retreats for people directly affected by breast cancer.
• First Descents: If you're feeling adventurous, First Descents offers surfing, rock climbing, white water rafting, and ice climbing (!!) trips for cancer survivors.

• Other national organizations offer links to local support services. For example, the American Cancer Society has a location-specific searchable database for everything from free wigs to counseling/therapy. Living Beyond Breast Cancer is another excellent source of information, including a search function for clinical trials specific to metastatic breast cancer. 

• Finally, I have heard excellent things about the Livestrong Foundation's fertility services, for those of us who've lost ours to cancer and/or cancer treatments.

What resources do you wish there were more of? What have you found especially useful? What have I left off this list?? And PLEASE let me know if you've gone on a surfing trip and/or family retreat -- I'd love to hear how that went!

* Dr. Love recently provided me with a free copy of this 6th edition, but I already had the 4th edition on my bookshelf. All opinions on the book are my own.

** One of my best friends works for Genentech, but I have not talked to her (or the company) about this post.

Around the Web

As you probably heard, sports anchor Stuart Scott died of cancer over the weekend. The immensity of Scott's love for his daughters is palpable in this ESPY award speech. He calls his girls his "heartbeat." Like almost every parent, I can relate. And watching this (just fair warning), I cried big, ugly tears. A reminder that even though cancer research has come so far, we still have miles to go before we sleep.

 

Here is some of the research I've seen over the past few weeks. If I've missed anything over the holidays that you think should be included, please send me an email and I'll add it next week. Now that I'm done stuffing myself with gingerbread and dark chocolate candy cane bark, I have time again for sifting through articles online. Because, ahem, THAT CANDY CANE BARK WASN'T GOING TO EAT ITSELF.

Zinc Test for Early Breast Cancer Looks Promising

{image source}

"For the first time, a study shows that breast cancer cells process zinc isotopes differently to normal cells - leading researchers to suggest this might be a way to detect the cancer early."

No Surprise: Herceptin Improves Long-Term Survival for Her-2+ Patients

"The results show that the 10-year survival for HER2-positive breast cancer patients who received chemotherapy without Herceptin was 75%, whereas for those who also had Herceptin, it was 84%."

Two Pre-Surgical Drugs Improve Survival for Triple-Negative Breast Cancer Patients

"We found that adding either carboplatin or bevacizumab to standard preoperative chemotherapy increased pathologic complete response rates for women with basal-like cancers -- that is, it increased the proportion of women who had no residual cancer detected at surgery."

Disease Progression Delayed by a New Drug Combination in Some Advanced Patients

"A new combination of cancer drugs delayed disease progression for patients with hormone-receptor-positive metastatic breast cancer, according to a multi-center phase II trial.

'Because the study showed a statistically significant benefit among patients whose disease progressed on an aromatase inhibitor, a larger phase III study comparing this combination to other approved therapies used after initial therapies fail, like exemestane and everolimus, should be done.'"

Updated Results of MARIANNE Study for Advanced Her-2+ Patients

"The study assessed the feasibility of three different regimens targetting HER2 in people with previously untreated (first-line) advanced HER2-positive breast cancer. Patients enrolled in the study received one of the three composites: Kadcyla (ado-trastuzumab emtansine) plus Perjeta (pertuzumab), Kadcyla alone, and Herceptin (trastuzumab) plus either docetaxel or paclitaxel chemotherapy.

Results from MARIANNE trial showed that all the three regimens were feasible in progression-free survival (PFS) for a similar amount of time."

Development of Most Cancers Is Beyond Our Control, Study Finds

Notably, breast and prostate cancer were NOT included in this particular study. So the jury's still out as to whether those might be controlled by environmental factors.

"In a groundbreaking paper published in Science, the duo describe a new factor, a tissue’s stem cells, that may explain as much as two-thirds of the difference in cancer risk among different tissues."

What's Blowing Up the Breast Cancer Blogosphere This Week

In case it's not obvious, I'm in total agreement with Ms. Schattner on this one. No amount of whisky could ease the pain I would feel if treatment wasn't an option for me. There were other great articles countering Mr. Smith's blog post -- if you're interested, here are a couple that resonated with me.

"The image of a person retching or in pain, afraid to ask questions of his doctor and not being offered palliative care is outdated by several decades.

Today, cancer surgery and medicines can extend and improve the lives of people who live for years and decades after treatment. Malignancies that were notoriously hard-to-treat just a few years ago, like some forms of lung cancer, melanoma, T-cell lymphomas, Her2+ breast cancer and other conditions have become, in many cases, manageable." (emphasis mine)

Miracles Do Happen (What I Was Thinking About Over the Holidays)

We know very little about spontaneous remission except that it's extremely rare. Most doctors refrain from mentioning it to avoid giving false hope to patients. But the allure is undeniable.

Life Savers

These buildings are where so much magic happens. A few weeks ago, my friend and Avon Walk teammate Shelby, a researcher at Genentech, asked me if I'd like her to try to arrange a meeting with some of the trailblazers in the Her-2+ research field while I'd be in town. "YES, PLEASE!" I think I wrote back immediately.

Shelby orchestrated that meeting, and it was one of the most memorable experiences of my life. Last Friday afternoon, my friend (and another teammate) Ginelle and I drove down to the Genentech campus, arriving nearly 45 minutes early because I was so geeky excited about what was about to happen.

One of the researchers is a guy Shelby met through Genentech's onsite daycare. His son is in class with her children, and when she found out he was on the development team for Kadcyla (the drug I've been on since last May), she might have told him my entire story and thanked him profusely and wept a bit.

Which is pretty much how I reacted when I met him last week.

I was so in awe of this guy, who is around my age, who has a 2-year-old son and was so amicable and open about his research and proud to show off his lab and just amazingly COOL as I stood there trying to think of just one of the million questions I had for him while also holding back tears.

He told me his dad died of cancer at just 50 years old.

He told me he's known as "the combination man." He plays with molecular combinations and tests them against breast cancer cells, most of them Her-2+ like mine were. He was a member of the small team that piggybacked a potent, bomb-like, extremely toxic chemo drug to Herceptin and got it to work, to deliver this bomb inside cancer cells that over-express the Her-2 protein without destroying the cells around them. He continues to play with combinations that will kill cancer more effectively and with less toxicity to the patient.

The other scientist I met is a true pioneer. When she came walking down the hall about twenty minutes into my conversation with the combination man, I could no longer hold back my tears. I don't remember if I hugged her. I was trying to maintain some composure.

She's been at Genentech most of my life, researching tirelessly (and also raising three kids). She was one of the primary developers of Herceptin, an antibody that binds to the Her-2 protein, signals those cancer cells to stop dividing, and tells the immune system to destroy them. Hands down, Herceptin has been one of the most important developments in treating breast cancer. She said it has been the best thing she's done in her life.

Mine, too.

I asked what was on the horizon because I'm always hoping to hear about the next big breakthrough, although I also understood that they couldn't go into too many specifics for so many reasons. They told me they're investigating what causes resistance to treatment. They're evaluating other drug combinations (a Kadcyla/Perjeta clinical trial is already underway). They're translating their successes with breast cancer therapies to other cancers. They're collaborating with researchers outside the U.S. They're working with regulators to speed things up where it might be possible.

They're energetic and enthusiastic and dedicated to their work. They're also scientists, and realists, and fully understand the wiliness of the beast they're up against.

I can't thank them enough for their help in slaying it. I hope they--and I--can continue killing cancer for many, many years to come.