Today on the Map

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I’m still trying to catch my breath from yesterday, but I woke up this morning to an increasingly populated Global, Real-time Cancer Map! If you haven’t already, please check us out at CancerBase. We welcome ALL cancer patients – and type, any where. Want to know more about why this is a game-changer? Check out: CancerBase: Your Base for Understanding Cancer

Please spread the word!

CancerBase: Your Base for Understanding Cancer

CancerBase Logo

This is happening NOW. RIGHT NOW!

Join me on the cutting edge of cancer knowledge – accumulating what patients know! I’ve ranted and raved countless times about the lack of cancer patient data. I’ve talked about how little we actually know, and the many obstacles to knowing more. More often than not, I refrain from sharing my frustration – and more than that, how deeply it scares me to know so little. Today, all that changes.

If you are connected at all with the world of cancer – patient, caregiver, friend, supporter, physician, researcher – you are probably well-versed in the frustration and anger that results from a lack of information.

  • When you are first diagnosed you want to know who else is living in this new, unwanted club. Who are they? Where are they? How are they doing?
  • When you prepare for surgery you want to know the kinds of outcomes others have had, which procedures are most effective for your kind of cancer.
  • When you make decisions about chemotherapy you want to know what side effects you might expect – and certainly who has benefited in past. And who hasn’t.
  • And let’s be really honest – you want to know how long others are living, and where the longest living patients are, how they are treated, and how much they are just like you.

These are just a handful of the many questions we think about, and not just when we are new to cancer. The pop up when there are changes in what we know, when we see our doctors – and in the middle of the night.

We also know that information does not flow easily or quickly. Each of our doctors, each of our labs, each scan, each report, each test holds information – and unless the information is exceptionally important, it sits in our medical record. That’s it – it just sits there. Not because no one cares, but because until today there was no where else for it to be.

For those dealing with metastatic disease the picture is even more grim – we are generally not even counted, and so all the existing data is culled together from disparate sources, much of it conjecture.

  • What if all of those layers of data could be put together, and put to use?
  • What if you could easily, safely, confidentially share what you know and then learn how it aligns with the experience of others?
  • What if you could ask the questions you want to know, and millions of others could respond?
  • What if information were available 24/7 – as new information becomes available, in the middle of the night, or even at your doctor’s office?
  • What if the collective wisdom and experience of cancer patients from across the globe was at your fingertips?

Enter: CancerBase.

As of today we begin to build just that – the world’s largest database of cancer patients. The objectives of CancerBase are to collect data, share information, ask questions and provoke learning.

CancerBase was built by patients, for patients. It is has an honor to represent the patient voice in the process of developing the community, to ensure our needs are and will be met.

The success of CancerBase starts with us. When you launch CancerBase you will be asked to login then share your answers to just a few questions. As our community grows, there will be more feedback and more questions.

Join for yourself and share with others. Tell your friend. Help your grandparent sign up. Share what you know of those you have lost. Each and every one of us has information. CancerBase means it no longer gets lost, but instead gets elevated, leveraged, in a way that benefits us all.

Join us today!

Like us on FaceBook.

Follow us on Twitter.

And please, if cancer matters to you at all, share this one!

 

Patient Advocate Required

patient_advocacyTwo weeks ago I woke up with a blog post half written. Well, sorta woke up – I dozed my way through most of the night. But once my eye were open enough to read my email, I got sidetracked by this: “You Want a Description of Hell?” Oxycontin’s 12-Hour Problem. The article addresses decades of complaints from patients, and even doctors, that OxyContin – expressly designed for its easy 12-hour dosing – hardly ever lasts 12 hours (which leads patients into a dependency cycle, but that’s a matter for someone better versed to address). As I read the article, I have to admit I wasn’t astonished by the assertion that trials were manipulated to make the drug look better, that sales teams were pressured to keep doctor’s on the acclaimed 12-hour dosing schedule, the soaring sales figures, and that insurance can refuse to pay for more than two pills a day. It’s a vicious cycle that leaves the problems on the doorstep of the patient.

The week before that, the #BCSM twitter chat focused on the importance of clinical trials and the challenges in filling them, including the role of patients in accessing information and deciding to participate.

And then there is the ongoing issues related to Valeant Pharmaceuticals and spiraling drug prices. While their might be the most egregious example, they aren’t alone.

Pharmaceuticals and the health care industry in general operates in the public trust. There’s no mistaking their interest in profits – which both fund further research and line pockets. And there’s nothing wrong with making money in our “free market economy.” But somewhere there has to be a balance, doesn’t there? It seems to me that in due course a system without accountability will fall apart. As companies make decisions based on the bottom line, they will have to compromise somewhere, and it has little if anything to do with the cost of the product. Profit is the intersection of how many things they sell and the price at which it gets sold. When they up the price, some people pay more, some people don’t buy. But we’re we look at health care, that “not buying” can be – often is – a life or death decision. So as a society, we need to figure out what we can stomach: the compromise of an open market vs. more deaths.

But here’s what’s missing in the picture: the Patient Advocate. There are many types of advocates, including professionals such as nurses and social workers, who advocate for patients and early stage or non-patients who stand in for patients in a variety of settings. Advocates work in health care settings, in health care policy, and as educators and supporters, among others.

Conversations change when patients – people whose well-being and very lives are on the line – join in the dialogue, with a place at the table and full-throated voice. There has been much attention paid to participatory medicine, and it is an area that seems to be shifting rapidly, from the process of patient decision-making to the role of physician reviews in compensation.

Pharmaceutical companies are increasingly involving advocates in their work, from advising on trials to advising on marketing. But it isn’t mandated, or even rewarded. I wonder what would have happened with the OxyContin trials if an advocate would have been at the table, or how an advocate might have influenced the Valeant decision to up their prices. I wonder if trials would be filled more readily, whether, for example, innovations would come more quickly, priorities would shift, or if patients would be getting better information about side effects.

We must, as advocates, continue to push for a seat at the table. We must also remain educated and informed about both the science and the patient community. Participation in conferences and peer review keep us in touch with the emerging science, while involvement with organizations and support groups keep us connected to patients. As any scientific advocate well knows, we do not participate simply as individuals, but rather as representatives for the many.

 

Hill Day

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Thursday, May 12

It’s John’s 50th birthday, and instead of celebrating, I am en route back to LA after two and a half days in DC. We talked a great deal about my missing it, but both believe deeply in the work that needs to be done to change the face of cancer.

So over the course of today I met with key staff in five congressional offices. I carried the voice of nearly 15 million cancer patients – young and old, a rainbow of skin tones, from every corner of our country. In the current political climate, I find that there is much to be discouraged about, but not today.

Today each office we visited listened to my story, heard from oncologists and researchers, and understood the dire need to more cancer research funding.

Some history: from 2004-2015 we’ve lost a lot of ground with “level funding,” and completely failed to keep pace with inflation, even as more Americans are being diagnosed and great discoveries are on the cusp of arriving. As a result, we’ve lost momentum and talent, especially young talent – PhD graduates who could not count on getting the funding necessary to do their work and live their lives, never mind pay their loans.

2016 was better, with an increase of $2 billion to NIH. This year there is wide-spread and cross-aisle support for an additional increase of $2.5 billion, inching us closer to where we would have, should have been.

There was recognition not only of the critical needs of patients (including metastatic patient because YES I went there), but of the jobs research provides, the support for universities, and the risk of “brain drain” when our best and brightest can’t count on the funding they need to start their labs and push forward their innovations.

But here’s the most interesting part. Every office, when asked what we can do, told us to stay in touch – and to raise the voice of patients! They want to hear our stories – they use them to understand what cancer means to real people, to make decisions about funding and to push harder for appropriations and legislation that will help us. Our stories inspire their work. I know it can hard to have faith in government these days, but we can still make a difference.

ACT NOW. We are a week or two away from the NIH appropriations bill and so Congressional staff have begun turning their attention. The moment to act is right now – and the voices of constituents matter!

If you are a cancer patient – any kind of cancer, at any time in your life – if you are a spouse, a parent, a child, or a caregiver of a cancer patient, please help. You can find your members of Congress here. Please write them a 1-2 paragraph summary of your story, along with a request that the NIH be funded at $36.5 billion.

I want to express a personal note of gratitude to the staff of the following Congressional offices for taking time for us today, for reminding me to have faith in our system, and for the incredible work you do on behalf of Americans:

  • Senator Barbara Boxer
  • Representative Anna Eshoo
  • Senator Diane Feinstein
  • Majority Leader Kevin McCarthy
  • Representative Brad Sherman

Summertime and MBC

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It’s the time of year when I start thinking about cleaning up the back yard, heating the pool, and focusing on summer entertaining. We have a small home, so it’s our season to celebrate outside with friends.

This year I have a new plan – if anyone appears to be drowning in my pool, I’m going to focus on preventing future incidents by teaching everyone on the deck how to swim immediately! After all, the person drowning could be saved and then be hit by a bus, so she’s probably a lost cause. 

It makes sense, right? I mean, it is how we fund cancer research. We don’t focus on saving the dying – we focus on how to “prevent” the disease. Why shouldn’t that be the model how we approach other life-or-death situations? Heart attack? Have everyone within earshot has to change their diet. And pass the bowl of aspirin, stat!

More

Ohm

om_ohm_aum_symbol_square_sticker_3_x_3I’ve long been one to defend the rights of all cancer patients (and everyone, for that matter) to self-identify with whatever language makes sense for them. I certainly won’t judge those who identify as victim or survivor. But I know many, many patients – especially metastatic patients – who loathe the war analogies. Yet I haven’t been able to reject them out of hand. I think, in part, because sometimes this disease does feel like a battle and that I’m fighting for my life and in part because it has become so engrained in our collective psyche that we don’t really have much to replace it with.

But during last night’s restorative yoga class, which I really wanted to skip out on, things started to make sense. Unfortunately it meant my mind was racing throughout the class, but if that leads to clarity, so be it.

I don’t know how cancer came into the studio with me, perhaps the news of a friend starting hospice and another prepared to die. In death language becomes even more important. We risk blaming the patient for not fighting hard enough or losing the battle. I know what I don’t want said about me, but I’m not sure what I do want said.

So in that yoga class…the room is dimly lit, my eyes are closed and hands open, I breathe. Breathing is good… The instructor tells us to surrender our bodies to the earth, allow gravity to pull us down and hold our weight.

Surrender…. More

The Walks…

questions-to-ask-before-you-walk-300x211Most of you have probably seen the Breast Cancer Action “4 Questions” campaign that was released last week. The focus is on four questions we should each be asking before we participate in community cancer (or really any fundraising) walk to ensure we know exactly what is happening with the money we are working so hard to raise.

1. How much money raised from the walk will go to breast cancer programs?

2. What breast cancer programs will the walk fund?

3. Do the walk’s sponsors increase women’s risk of breast cancer?

4. Does the walk present a one-sided picture of breast cancer that leaves some women out?

The best place to start finding answers is here. To learn more, please consider the upcoming BC Action webinarMore

Call to Action – 2 Minutes of Your Time

 

call-to-actionA QUICK introduction:

  • Nearly 100% of breast cancer deaths are a result of metastatic breast cancer (MBC).
  • MBC research accounts for roughly 7% of research funds – including prevention of mets.
  • Death rates have hardly changed in 30 years.
  • Most metastatic research of one origin can help those whose cancer started elsewhere.
  • No matter what you read in headlines, we are not even close to chronic disease status, let alone a cure.

As the White House begins to establish priorities for the Cancer Moonshot they are listening! PLEASE follow the link below to support establishing metastasis research as a Moonshot priority.

Lives depend on it.

Metastasis Research Petition

A journey to the heart of the EMA – Patient-Voice – From Cancer World

A look into the growing role of patient advocates in the European Medicines Agency (Europe’s version of the FDA).

Flexibility and goodwill have allowed patient involvement in the work of Europe’s drug regulators to develop at an impressive pace. But will they be enough to withstand the strains on the relationship

Source: A journey to the heart of the EMA – Patient-Voice – January-February-2016 Issue 70 – Cancer World – Shaping the future of cancer care

The Wig

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I haven’t been out and about as much as I’d like lately. Taxotere is taking its toll, and fatigue is reaching further and further into my life. What was originally a few days of being tired is now a week or more, leaving a week or so of time when I’m feeling good before the next cycle begins. I’ll take the days I have with gratitude, believe me, but it leaves little time for socializing. Most of my “good” week is spent running errands, catching up on my advocacy work, and getting some good writing time in.

But this was a good week – and I got out more than usual. I had a CBCRP meeting in Oakland and the bar mitzvah of a family friend.

For occasions like these, I spend more time than I should thinking about my head. It’s nearly bald – shaved close but not off – and I’ve been spared total baldness in favor of “fuzz.” The irony is that I gave up my long, curly fuzz for the short fuzz of a buzz cut.

IMG_3676.JPGThere are practical matters to consider. Walking around bald doesn’t bother me, but it can be awfully cold! Scarves help, and it’s what I wear most days. But TSA can make me remove a scarf, and that’s a hassle. Plus there’s the shocked stares of pity by those around me, which I really can’t stand. So I decided to wear my wig to the conference. It got me through TSA in both directions, though it itches quite a bit and I worry about it moving around. To me it looks so obviously like a wig, but only a few in the know agree. I’ve had a number of compliments about my new ‘do, so I guess I’m fooling most of the people some of the time.

Fast forward to the bar mitzvah. It was the first time I’ve been in synagogue in a number of months, and while many friends know that I’m back in chemo, it’s not – of course – part of their daily awareness. The experience is very different – close friends do a triple take before they realize it’s me. I know my curls were my signature feature. I could have gone with a curly wig, and that might have made things easier. But I wanted something a bit different. Nothing drastic – I’m not the type to go green or blue, let alone pink, but something that could make an otherwise miserable experience fun was in order.

So I’m never quite sure how to approach someone. Do I start with an introduction, which seems awkward, but not as strange as the “who the hell are you?” look I sometimes get. Or do I let them go from confusion to concern to shock to recognition? I try to stay with John, to provide a context and make things easier…but even that doesn’t work. I’ll never forget the time, back in 2002, when a very dear friend was upset with John for bringing another woman to synagogue while his wife was sick at home – until she figured out that it was a wigged me.

It’s been an interesting social experiment, and one that I hope isn’t making others too uncomfortable. I’m no less sure what to do than I was 14 years ago, but I’m still here asking the questions!

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