METAvivor

By jerise from etsy.com

Exciting news! As of early this week I have slipped into a new role. – president of METAvivor. I have inherited passion and commitment from a small but remarkably strong group of founders and I believe we are on the cusp of the next wave of change. I am grateful for their leadership, for a board who is devoted, and for continuing and emerging volunteers who believe our voices must be heard. I look forward to our continued growth and the hard work ahead. Our dual mission of raising awareness and funds for MBC is critical for all whose lives have brushed up against breast cancer.

I’m sure you’ve heard plenty about METAvivor before, but just in case, here’s the what and why behind my involvement.

We’ve all heard the numbers – of all breast cancer diagnoses, including those with DCIS or Stage 0, 1 in 3 will become metastatic. And I’m sure you also know that patients don’t die from early stage disease. Only metastatic breast cancer (MBC) is fatal.

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An N of 1

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impglobal.org

The most recent roller coaster ride seems to be coming to an end, though that sounds remarkably like “famous last words” – never good!

For those keeping score, here’s the update:

About four months ago I started on my third-line treatment – everolimus and exemestane. I started the treatment with trepidation. After nearly three months it seemed, to me, that I wasn’t seeing the results I wanted. Tumor markers were rising (that’s not good) and the side effects weren’t great. So I started looking for “what’s next.” Time to look at my options – clinical trials.

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Third Line Therapy

Mphotoemories of another angst-filled day of sitting in bed waiting for the side effects of my first round of chemo playing tug-of-war with what I know must happen, I ask John to bring me my pills.

“The new ones?” he asks.

“I guess,” I grudgingly respond. Really, this is me? Really?

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TRANGST

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We’re familiar already with the term SCANXIETY – the persistent anxiety that surrounds PET, CT, Bone, MRI and whatever other scans they can throw at us. It pertains to the test itself, and to the wait — the hours or days it takes to get our results. But as I await the shipment of my new meds from the speciality pharmacy, I think we need coin a new phrase, TRANGST, perhaps? The angst that surrounds the change to any new treatment protocol, with it’s unknown side effect and unknown impact.

And that is where I sit today…

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The Measure of Time

CalendarLast week saw yet another CT scan and, unfortunately, some progression: albeit slowly, my cancer is growing again. And so I am now looking at my third-line treatment. I must admit, its all a little surreal. I was going to be that girl who got years on each successive therapy, denying to odds and beating down the doors of a ripe old age. Strike that – I AM going to be that girl, just not the way I planned.

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Happy Tomorrow!

one_day_at_a_time_oceanAnother new year is about to roll in – time for a fresh start, resolutions and promises, leaving the past behind, beginning again, a tabula rasa. New Year’s holds the promise of change, of potential; an opportunity to wash away the old – our foibles and failures – and build something new.

Or does it?

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I find it interesting that the patient track at breast cancer medical conferences always seems to start before the conference. So it was yesterday, when Novartis kicked-off the patient conversation. I am guessing about 60 of us, patients and advocates, representing 20 or more countries, met to learn more about living with metastatic breast cancer, and to talk about the challenges.

Novartis supported the international Count Us, Know Us, Join Us study (n=1273). It was fitting to share the results, such as they were, at the Advanced Breast Cancer Second International Consensus Conference, since in some way the need to count us was on the table two years ago when the conference launched.

This online, global study sought to explore the unmet needs and attitudes of metastatic (or advanced or secondary or Stage IV breast cancer patients) in an effort to identify gaps in information and support:

40% of MBC patients feel isolated.
77% are out there trying to find information.
55% feel that the information they find doesn’t meet their needs.
45% feel finding the right information is difficult.

In terms of support, 80% get what they need (I speculate that they are confusing need and expect, but who am I to judge?) from their oncologist, but most find that support from friends and family wanes over time.

No surprises for those of us living with the disease, and there was lots more. Each geographic region gave a localized report about this or other surveys that have been conducted. You can find results on the Count Us, Know Us, Join Us website.

While is seems that everyone is interested in us, remarkably, they actually haven’t counted us. Seriously. We don’t have global, or even local numbers and we don’t have registries (except in Switzerland) that track mets-specific diagnoses. And as MBCN President Shirley Mertz put so well,

“If you don’t count it, it doesn’t matter to you.”

Any wonder some of us feel isolated? Lots of work to be done here!!

After a series of briefings about the “on the ground” experiences and “best practices” from across the globe, we meet in regional teams to begin the work of tackling the challenges we each face. It was a wonderful opportunity to connect with other patients and advocates and be infused with new ideas. There is no question the task is great, nor that each region faces its distinct challenges, but there is more overlap than not. Here is the summary I presented on behalf of the US/Canada team:

What We Need

  • Influence legislators to ensure research funding
  • Increase percent of research dollars allocated to MBC-specific studies
  • Change approach of health care professionals to be more “realistic”
  • Insure patient access to information and support
  • Organizational collaboration
  • Breast Cancer on a spectrum (previvor – metastatic)

How We Get There

  • Global Day of Action
  • Continued Advocacy
  • Adapt registries to account for (subsequent) mets diagnoses
  • Pink ribbon needs to be longer, gradations of pink

All in all a very productive 1/2 day, but as usually I find the follow-up steps lacking. What we do with our ideas, how they become actionable, where the support might come from? We don’t ever seem to get to that part of the conversation. :-(.

In all the thinking I’ve done about advocacy in general, I find this to be a core challenge. It’s one thing to bring information and contacts back to your organization for future reference, but perhaps because I don’t have a single “home” organization, perhaps because I haven’t started my own non-profit to cover my one little corner of identified needs, I don’t think this is enough. I wonder what happens in the big picture and I worry about how many brilliant ideas get lost when we return home and the luster begins to fade…

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The Sound of Silence and Why I Do What I Do

I was recently in a room of about 20 breast cancer survivors/thrivers/veterans. As we moved through the room with introductions each woman announced how many years it had been since her diagnosis, almost invariably in terms of how many years she was “cancer free.” 8 years, 12 years, 6 months, 5 years, over 20 years… Woman after woman was met with applause.

When it was my turn I shared that I was initially diagnosed in 2002. (P.S. That would give me 11 years of survivorship and put me comfortably in the upper half of longevity.) I went on to say I’ve had metastatic disease for nearly two years.

Not a sound, save the weight of my words dropping to the ground with a thud. No applause. No support.

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A Good Year…

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From: shiratdevorah.blogspot.com

I recently stopped into a class being taught by one of the Rabbis at work. It was a primer about the Jewish High Holy Days – Rosh Hashanah (New Year) and Yom Kippur (Day of Atonement). I walked in as the Rabbi was talking about how we greet one another on Rosh Hashanah, the Jewish New Year. In Hebrew we say “Shanah tovah u’metukah,” which interestingly doesn’t translate to Happy New Year.

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Another One Bites The Dust

So it happened, what every metastatic patient fears: the next line treatment, a reminder that metastatic cancer overcomes therapies nearly every time and that one life-extending option has been crossed off the list.

All metastatic patients know that there is a list of potential treatments, each in due course. At some point the current treatment will stop working and we will move on to the next one. We live with the hope that research will move fast enough to keep something on our list.

My new therapy may last a year or it could last ten. I will only know when it ceases to work. Everyone seems to love my new drug. And while it is two large needles and a very slow injection every month, it has the added advantage of not having to remember to take a pill twice a day, which is huge. I’m told it is very well tolerated and it has a great track record of effectiveness.

I’m as optimistic is anyone can be but I serve no one if I’m not honest as well: I’m not okay that I’m one treatment down. So while I wait with hope and gratitude for all of the researchers, trial participants and doctors have brought me to this opportunity, I wait, too, with a little bit of grief for the most recent therapy crossed off my list.

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