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: In Memoriam

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

{photo source}

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?

Around the Web: Stomp Out BC Edition

There was a movement among the online breast cancer community yesterday to raise awareness for metastatic breast cancer, to call attention to a side of the disease that rarely gets talked about, to make some noise collectively. Stomp Out Breast Cancer Monday was the brainchild of Beth Fairchild (view her news clip here). The goal was to get the hashtags #dontignorestageiv #bckills and #metsmonday trending on Twitter, Facebook, Instagram, or wherever an impact might be felt.

I don't know about you, but my Facebook feed was filled with stories of women I have come to love, women who are facing this disease with so much grace it felt like my heart might burst reading through their experiences. One friend wrote: "The hardest part about living with metastatic breast cancer isn't the treatments. It's looking into my 9 year old's eyes and seeing the pain and fear there. Cancer is a thief that has robbed all of my kids of their innocence." 

Then last night, because Quinn took a weird late-afternoon nap that lasted until 8:30 pm, I was able to participate in the #BCSM Twitter chat that takes place on Monday nights. I got to say hi to some old friends (and new) as we talked about what we'd seen on social media that day: what resonated, what worked, what could be done differently in the future, what our ultimate goal even is. (RESEARCH DOLLARS NOW, PLEASE!!!) Then I found myself crying as we remembered friends who've passed away, and I tweeted this: 

I do not want my son to have to remember me. #bcsm
— Jennifer Campisano (@JCampisano) March 3, 2015

I am also extra emotional because Chris is FINALLY home after four weeks in Africa, because Quinn turns four this week, and because I have a scan on his birthday. It's as if, with Chris back, I can let my guard down and let all this pent up emotion out. I no longer have to run the household by myself, be a single parent (my utmost respect and awe to those of you who are always single parents), or worry as much about the bogeyman every weird noise at night.

Today was emotional, but also inspiring in so many ways. I was proud of how this community rallied to get our voices heard. I hope I can continue to be a part of that rallying cry for many, many years to come.

Here's what else I saw on the web this week.

Basket Studies a Faster Way to Try Many Drugs on Many Cancers

"She is part of a new national effort to try to treat cancer based not on what organ it started in, but on what mutations drive its growth.

Cancers often tend to be fueled by changes in genes, or mutations, that make cells grow and spread to other parts of the body. There are now an increasing number of drugs that block mutations in cancer genes and can halt a tumor’s growth."

A Test to Predict Whether You'll Survive Breast Cancer?

At this point, I'm not sure I'd take such a test. Would you?

"The test uses computerised imaging of tumour samples and statistical analysis to measure the number of immune cell ‘hotspots’.

Researchers found images of hotspots where immune cells were clustered together around breast cancer cells provided a better measure of immune response than simply the numbers of immune cells within a tumour.

Scientists at The Institute of Cancer Research, London, analysed tumour samples from 245 women with ER negative tumours.

They split women with breast cancer into two groups based on the numbers of immune hotspots within their tumours. Women whose cancers had a high number of spots lived an average of 91 months before their cancer spread, compared with just 64 months for those with a low number of spots.

The test is the first objective method of measuring the strength of a patient’s immune response to their tumour."

"This is Going to Happen in Our Lifetimes"

This is long, but so worth the watch. It gave me so many goosebumps. And of course, made me cry. Seriously, by the end I was bawling. But also, so very, incredibly hopeful. 

Around the Web

Here's what caught my attention around the web this week.

A paradigm shift.

I'm not sure I could fully adopt this woman's way of thinking, but I do think it's important to examine how we talk about disease. Are we battling? Are we warriors? Or are those of us diagnosed with cancer just doing the best we can with some shitty luck? 

One woman I know talks about shifting our thinking away from "fighting cancer" and more toward "creating health." Now that is an idea I can get behind. What about you? What words do you use to talk about cancer?

Why #BCSM is my favorite hashtag.

Most Monday nights, I'm not able to participate in the Tweet chat sessions accompanied by the #bcsm hashtag. But I still use it as a call signal when I'm feeling at my lowest, or when I have news to share, or when I want to talk to someone who knows exactly what it feels like to be buzzing on steroids at one in the morning. Someone always answers the call. If you haven't checked out the chats, you really, really should.

Joan Lunden has breast cancer.

I wish her the absolute best. I pray chemo is as easy as possible for her. I hope she uses her platform as a celebrity and journalist to shed some light on this disease -- to educate, not just bring "awareness."

A possible new way to fight some breast cancers

"[Researchers] found that women were 4.4 times more likely to have a cancer recurrence during tamoxifen treatment when their main tumor had a high ratio (2:1 or greater) of androgen receptor-positive cells to estrogen receptor-positive cells."

The 3D news that was everywhere this week

When I was first diagnosed, I was asked to volunteer for a 3D mammogram to help further research into whether such tools were beneficial. I don't know if my own 45-minute, highly uncomfortable session added anything to this particular study, but I'd like to think I helped a little. Now if only they could figure out a way to PREVENT or CURE breast cancers, instead of just seeing them.

On that note, some researchers are looking at immunotherapy for treating metastatic breast cancer, thank you and amen.

This: "Unlike maintenance chemotherapy, with its associated cumulative toxicity, a therapeutic vaccine may offer clinical benefit with few adverse effects. The hope and promise is that women with MBC who mount an antibody response to a vaccine may experience significantly longer median survival and a better quality of life."

And, I just realized this article was from 2013, so here's hoping those scientists have made some significant progress since then! I'll see what I can find out for next week's round-up.