METAvivor

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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.

Since these are the men and women who are dying, at a rate of about 40,000 per year in the US alone, you’d think our energy and resources would be directed here, right? I mean not only would that save lives, but it would mean anyone, with any stage of breast cancer would at least be safe from death. Makes sense to me! But that’s not how it happens.

In fact, in the Western World this 30% receive a paltry 5% of the funding – and that’s the most generous reading I could find. It’s confusing because many believe that preventing mets is mets research. And by extension, so is early detection. And prevention. And it’s all poppy-cock. At METAvivor we define “metastatic research” as that which will benefit the already metastasized patient. And we put our money where our mouth is…

When you donate to METAvivor every single penny of your donation flows directly into our peer-reviewed research grants. Our overhead costs are covered through generous, directed grants. We have no paid staff. We volunteer our time and expertise because it matters to us – it is about saving our lives and those who follow.

To that end, we are also committed to MBC awareness. There’s a lot of pink talk out there, but most it has nothing to do with us. In fact, the breast cancer industry would probably like us to sit quietly in the corner and stop rocking the boat. The good news is, we hear more about it. The breast cancer industry has come to realize that metastatic patients and our supporters are strong and loud and we’re not going away.

I’m looking forward to METAvivor’s growth in the coming year, and welcome your involvement! We are now recruiting volunteers for our cross-country Sea-to-Sea caravan, which departs from Annapolis in April and will visit many of the researcher centers where we have offered funding. We have room for volunteers who would like to help us manage the event, and those who would like to bring METAvivor to their communities. We have other projects, too! And of course we are always grateful for your donations.

Patient Empowerment

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 It was not long after my “first” diagnosis that I found myself in a breast cancer support group. As the facilitator. I was standing in for a friend who was on vacation, and a new group member joined that week. The group and I were all in for a surprise that afternoon, and I’ve never forgotten the lessons I learned. Please check out my piece When A Patient Chooses a Different Path in the Reimagine.me magazine.

 

My Cup Runneth Over: A Belated AACR Update

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Filled with blessings and making a virtual mess on my kitchen counter, my cup runneth over these days, so I am LONG overdue in sharing my incredible experience at the AACR (American Association for Cancer Research) Annual Meeting as a participant in the Scientist <->Survivor Program.  

AACR: AN UPDATE

If you’ve been to AACR you will totally get this. If you’ve been to SABCS, you’ll come close to getting this. If you’ve never attended a medical conference as an advocate, you may not get this, but rest assured most of us conference junkies really don’t either.

The seemingly simple task of creating a conference schedule is a Herculean effort. The full AACR Program guide is – I kid you not – 724 pages. Sure, there’s an app for that, but mastering the categories in which the app sorts sessions is beyond my chemo-addled mind. All this to say, my primary goal was to collect as much information as I could about the latest advances in MBC and I’m sure there were sessions I never even found. In addition, my AACR’s Scientist <-> Survivor Program team was tasked with the responsibility with preparing a presentation on clinical trials. Plus Jody Schoger (of #BCSM fame) and I presented a poster on Breast Cancer Advocacy. The challenge: too few hours in a day! I had greater success on the clinical trials front than I did with MBC breaking news, but below you will find a hodgepodge of updates I hope you find helpful.

The most significant headline for MBC patients:

PALBOCICLIB

The drug formerly known as PD-0332991 (aka PD-991) and I first met at SABCS 2012, and it has now entered Phase III trials with continued positive results. Lifespans for MBC patients are measured in months, and patients are generally expected to live 24-30 months from the time of diagnosis. The hope has been that this drug given in combination with letrozole (PFS of 26.1 months vs. 7.5 months on letrozole alone), is a game changer. This could more than double the time to progression, having a critical impact on the life expectancy of MBC patients. Palbociclib is a CKD 4/6 inhibitor and letrozole is an aromatase inhibitor. The Phase III trials will look at palbociclib in combination with letrozole or fulvestrant in ER+/Her2-/postmenopausal women. Since AACR the drug has been given FDA Breakthrough Status, hopefully it will arrive soon to a clinic near you. Palbociclib is being developed by Pfizer.

OTHER CDK 4/6 INHIBITORS

In the same class of drugs are LEE011 (Novartis) and LY2835219 (Lilly), which both show promise as well. LEE011 is moving into Phase II trials for a variety of cancers. In MBC it is in Phase I/II in combination with a variety of aromatase inhibitors. LY2835219 is in Phase II with fulvestrant and in Phase I for other cancers. The latter is of special significance since it is being evaluated for patients with prior therapies, those patients who often have very few options.

There were other updates, continued good news about the success and possible expanded use of trastuzumab, focus on cancer stem cells, and one of my personal pet peeves – a continued lack of biomarkers so we know what drugs work best for which patients. All in all, not a ton of news that I could find. Which remains the frustration of MBC patients everywhere…

 

BUSINESS AS USUAL?

Our lives hang in the balance of research, which many feel is a painfully slow process. Experimental drugs typically go through a multi-phase clinical trial process after which, assuming they fare well, get in line for FDA approval. All in all, it can take a decade or more for some drugs to make it from the scientist’s bench through trials, to the FDA and onto the pharmacy. You would be hard pressed to find anyone in the research or advocate community who thinks the current trial/drug approval process is effective, efficient or good for patients. And while the pharmaceutical companies that sponsor much of the research are for-profit institutions, their financial investment is great. Between the cost of running trials, and the reality that not all trials bring a product to market, you can begin to see one cause of the extraordinary price of therapy – especially new ones.

So let’s just call the system “broken.” We can bemoan it, but can we change it? Some are trying. For those interested, read on about new models in research and clinical trials…

I-SPY 2

An “adaptive trial design,” I-SPY 2 seeks to more quickly evaluate the benefit of trial, constantly shifting the agents used in the trial. Drugs that work for a particular patient group are focused on them, while agents that don’t provide benefit are dropped from the trial. In order to best evaluate the impact of the therapies for trial participants, chemotherapy is given before surgery (neo-adjuvant). At the same time, the trial tracks markers that will allow more efficient targeting of drugs in the clinic. Patients are monitored throughout the treatment and once chemo is finished, they go on to other treatments such as surgery, radiation and/or endocrine therapies. The trial was developed in cooperation with a variety of researcher centers and pharmas as well as the NCI and FDA, in order to ensure to would be a collaborative effort and drugs could proceed to the approval process.

Stand Up To Cancer

A little less trial design and more research design is the Stand Up To Cancer effort. Founded in 2008, the laudable goal is to bring an end to cancer. Leveraging the efforts of the entertainment industry, the media and more, the goal is to fund “Dream Teams” and innovative, high-risk/high-reward research. They seek to eliminate barriers, foster collaboration and seek rapid progress, and with more than a hundred clinical trials and thousands and patients enrolled, let’s hope they’re on the right track!

Global Alliance for Genomics and Health

There’s a lot of health data out there. A LOT! And it’s stored all over the place, from individual Electronic Medical Records (EMRs) to clinical trial databases, to personal genomic testing such as BRCA tests. It’s everywhere and there is invaluable information to be mined. The challenge is that everyone has their own system and we don’t yet have a means to share de-identified data safely and efficiently. This is where Global Alliance comes in. Their mission is to bring together stakeholders from all parts of the system, and across the globe, to identify and address issues related to access to and the evaluation of this data. And when they achieve that there will be a goldmine of information that can be analyzed to the benefit of all of us. 

 

AACR SCIENTIST <-> SURVIVOR PROGRAM

I was thrilled to participate in this program and if you’re interested in conferences, this is the way to go. I put my toes in the water with the wonderful program offered by the Alamo Breast Cancer Foundation at SABCS last year, and I found this to be a great progression! We had access to top scientists who support and partner with survivor advocates, faculty who were available to answer questions and make sense out of each day’s news, and the opportunity to delve more deeply into critical topics facing cancer research.

Personal highlight: A Night at the Lab with Peter Kuhn, PhD and his team. It was a GREAT opportunity to get up close and personal with a working lab, seeing how things operate and meeting the people who are changing the world. You can learn more about the program here.

Tumor Block, Part Deux

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Forty-two days after my first request for genomic testing, things have finally moved forward.

When we left off I was waiting for the hospital, which failed to “cure” me (though that was not unexpected), had also failed to find my tumor block from which I could have my cancer genome processed in hopes that one or more of those pathways to your right indicated a treatable mutation.

In their effort to make this right the hospital sent 17 slides, which were evidently not stored with the tumor blocks, over the pathology to see if that would work.

Answer: nope.

The search for the tumor block becomes more desperate – if they don’t find it my options are A) forego the genetic testing and just try a series of therapies in hopes one works or B) undergo yet another bone biopsy in hopes that enough material is collected to run the test. If you haven’t guessed, I don’t particularly like these options.

The countless calls between my oncologist, myself and the pathology department where I had my surgery ended yesterday, like this:

Four layers of “can I speak to your supervisor” and they each know my name. Finally I have crawled my way to the top. I offer an impassioned plea of the limits of personalized medicine and the reality that my third-line therapy for METASTATIC breast cancer isn’t working and this is life on the line here. I extract another promise to search. They will call the pathologist of 12 years ago – sure he’s in Reno now, but maybe…. And they will send yet another email to any pathologist doing research. And they will dig through old logs. And, and, and…

The dire situation I have portrayed nearly feels real.

Again I hear that they just aren’t where they belong. See, the hospital has a warehouse in Torrence where they store tumor blocks “indefinitely.” And it’s a big hospital. A world-class hospital. There must be hundreds of thousands – probably millions of cancer tissue samples locked in paraffin. And mine just isn’t in the right spot. Talk about the proverbial needle in a haystack.

I get a briefing on their history. The electronic tracking system was installed a year after my surgery and was not back-dated. Since they are all missing, it’s unlikely that they were pulled for research, which suggests they were never filed. However, the drawer where they belong has space for them, suggested they had been filed at some point. Who might have pulled them and why is a mystery that shouldn’t be.

Five hours later my phone starts to ring. First it’s Kris, Vicky’s boss. While I’m talking to her, my doctor’s office calls. It’s my doctor’s office, I am sure.

After 6 weeks of searching, they found it. Them. Not the usual 2-3 tumor blocks, but 57 of them, sitting in a bag with hundreds of others, under 12 years of dust on the top of an old filing cabinet in a corner of the warehouse.

Relief, yes…but more questions as well.

Who thought it was a good idea to put them in a bag and toss them in the corner of a room?

Where is the respect, regard, for the person behind the tumor?

Have we become so desensitized by slides and blocks and de-identified data that fail to remember these tumors were insides mothers and fathers and children?

At the rate “personalized medicine” is moving, my request will, one expects, becoming increasingly common. What about all the other blocks in my bag?

And the least theoretical question of all: will they reveal anything relevant for me?

MARKERS, MARKERS, WHERE ART THO?

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I’ve talked about personalized medicine – the goal of which is to target the specific mutations in a patient’s cancer call as the delivery point for a chemical intervention. If I have a mutation here, I use drug X. A mutation there, drug C. And so on…. The idea is to get the right drug to the right patient (not, by the way, the right patient to the right drug as one AACR pharma exhibit proclaimed). And it makes perfect sense – hit your cancer cell where it’s weakest and destroy it.

So I ask, especially those of you who are ePatients: where is your cancer cell weak?

I don’t know either. That’s just it. Unless we undergo genomic testing (not cheap, not always helpful, and certain universities sometimes lose your tissue), we don’t know where our mutations, where our weak spots lay, where there is a chink in the cancer cell’s armor.

What we need are biomarkers – reliable indications from easily obtainable sources (think blood rather than tumor) to indicate that a particular biological process is occurring. In cancer the goal is to be able to identify those people who are most likely going to find success with a given drug. If we see a mutation in the WHT pathway, we give a drug targeted there. If we see the PIK3 pathway has gone awry, we leverage that. And ideally those are blood samples, since we’re constantly giving blood samples anyway.

These aren’t perfect systems – I know that. And tumors can still develop resistance to drugs. But imagine if therapies were no longer given “Russian roulette” style – waiting for one to take hold. Imagine how our success rates might soar, how side effects would diminish, how much money would be saved.

This is good, right? And we’re inching our way there – we really are. It’s a race against time…

METAvivor is Hitting the Road!

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Guest post BY DIAN “CJ” CORNELIUSSEN-JAMES

 

We are thrilled to share with you our latest METAvivor news: we are officially launching our 2015 Awareness Campaign Sea-to-Sea for MBC – a cross-country caravan to raise awareness of metastatic breast cancer (MBC).

Our journey across the US will include visits with METAvivor research grant recipients, laboratory visits, participation at local events, the acclaimed METAvivor photographic gallery display and the very moving Stage IV Traveling Pants.  These and other activities along the way will boost momentum for the MBC cause and bring far greater MBC awareness to the American public.

WHEN AND WHERE?

Routed so that we can visit some of the many cancer research centers where METAvivor has funded MBC research, our caravan will launch late April 2015 from HQ METAvivor in Annapolis MD and continues through Philadelphia PA, State College PA, Cleveland OH, Ann Arbor MI, St Louis MO, Kansas City KS, Oklahoma City OK, Denver CO and Salt Lake City UT, ending with a grand finale in Los Angeles CA in late May.

WHO?  WHY YOU, OF COURSE!  

LOCAL EVENTS:

We are setting dates for lab tours now, but before we finalize our calendar we want to hear from you!

  • Be a local planner!  Help promote local interest by arranging a local event.  The possibilities are only limited by your imagination –they can range from a dessert reception, to a church picnic, school event, cancer society meeting and more. Many local organizations, societies and clubs regularly seek interesting topics and presenters for their meetings.  Ask around and you’ll find ready-made opportunities. Perhaps you can light up your City Hall, a public fountain, a local hotel or another landmark in MBC ribbon pin colors.  There are many ways to be involved.
  • We encourage our local contact to speak at the event, telling of his/her interest in or connection to MBC; however, this is not mandatory.  The caravan team will provide a compelling, informative presentation on MBC and the METAvivor mission.  We will answer questions, set up the photographic gallery and Stage IV travel pants displays, and otherwise be there for the duration of the event.
  • “OK, I’m interested!!  What’s next?”  That’s great!  Email  C2CVolunteer@metavivor.org with your name, email, phone number, a brief description of the type of event you’d like to host, the event location – (name of school, clubhouse, restaurant, hall, home, etc.), the name of the organization you are working with, if any, and the number of attendees you are confident you can achieve (20 minimum – no maximum). Someone on our team will contact you with further information and to welcome you aboard.
  • Be our local connection!  We are looking for local liaisons to facilitate our short stay in your area.  A local planning team may also serve as liaison.  Email C2CVolunteer@metavivor.org if interested.

NATIONAL CAMPAIGN TEAM:

We’d also be delighted to have you join our National Campaign Team.  We have a great leadership team, with Aaron Price (husband of Doris Ann Price, one of our Lead Ambassadors) at the helm.  We have a wide variety of volunteer opportunities available so that you can comfortably give of your time and energy in the most appropriate way. We need people in awareness and fundraising campaign building, media, logistics and sponsorship* and donation-in-kind solicitations.  If interested, please email C2CVolunteer@metavivor.org.

*Our sponsors to date are AstraZeneca and Novartis.  Others are yet to be finalized.  Thanks to our sponsors, every dollar raised or donated during the event will go directly into the METAvivor Research Fund.

WE LOOK FORWARD TO HEARING FROM YOU!

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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It’s the Friday of Memorial Day. Do You Know Where Your Tumor Block Is?

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Remember me? I never call, I never write…and I do apologize. It’s been a bit crazy here on so many levels. The good news is I am feeling well, there’s no significant cancer news so I’m jumping right back into the fray because, well, I have to…but know that I’ve missed you!

 

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I’m coming up on a 12-year cancerversary of sorts – my bilateral mastectomy was the first week of July 2002. Early enough in the month that the residents would be fresh and eager and before they had learned to sleep on their feet during rounds. Round about July 7, but I would have to dig out papers to confirm that. It’s good when some details float away…. In fact, don’t normally acknowledge this particular moment in my cancer biography, but it has been brought into the spotlight thanks to my desire to have my tumor sequenced. The back-story goes like this:

I’m not yet convinced that my third-line therapy, everolimus and exemestane (aka Afinitor and Aromasin) are working. If they are, they’re taking a lot longer than I would like, but that’s another story….

This story is about if/when I have to move on to the next treatment (yeah, that “if” is there to protect my sanity for the moment), I’d like the direction that genomic sequencing can provide. Do I have mutations in the PIK3 signaling pathway? What about the CDK4/6 pathway? Or any one of the myriad of DNA corruptions that could guide us as we enter the world of personalized medicine.

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The Truth About Heroes and Cancer | Kevin Lankes

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I don’t typically repost pieces I find on the internet, but this is a must-read! And to be very clear, this is not me, this is Kevin Lankes‘s piece.

Cancer is not a fight. It’s an illness. Some people don’t get better. Period.

Cancer doesn’t operate on our terms, and that makes people very uncomfortable. And so there are those who have the propensity to create a mythology to cover up the realities of the disease, in order to apply an idealized version of it to mesh with our moral code or cultural viewpoints. It’s a selfish thing to do, and it doesn’t fool anyone. For example, there are no heroes when it comes to cancer. There are people who live, and there are people who die. Sometimes there are reasons, sometimes there aren’t. Sometimes it makes sense. Mostly it doesn’t. As Xeni Jardin has said, “Lots of people suffer through treatment in pursuit of more life. Some cancers don’t respond. Some of us die. We’re not heroes or failures.” There are too many people who are lauded for surviving a disease they have no control over, and so many who are forgotten because they didn’t.

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There’s a Rant Coming On…

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You probably know that there are issues related to the Kohl’s/Komen joint “sell stuff for the cure” campaign. I’ve written about it, as have others. If you don’t know, METAvivor has sought counsel and we will be providing updates as we can.

In the meantime, I’m not the only one who has written about the issue. Fellow blogger Lara Huffman has a piece on her blog, which you can read here: http://getupswinging.com/. Her piece in excellent and has sparked a great discussion. One comment in particular, however, has set me off. It was a comment from a woman named Patti, who is taking some heat over there, so rather than add on, I thought I’d share my response in my own space. 

Patti says:

I don’t get why metastatic “survivors” don’t think they are included in breast cancer awareness month or consider themselves ” survivors.” I personally hate October and am a reformed 3 day walker, but I just don’t understand why those with metastatic disease aren’t supposed to have hope and take offense that they have a day set aside for them. First there are complaints about October in general, which I agree that it is over commercialized and a constant reminder of death ( in my experience), but why complain about the month and then complain not enough days are dedicated to metastatic disease. It makes no sense. But a survivor is technically anyone alive after diagnosis, metastatic or cured. Complaining that to much attention is dedicated to survivors just makes no sense. I personally think that success stories are good for helping moral during tough times. It’s good to know that people actually live after diagnosis, whether it’s living with metastatic disease or getting “cured.” And it’s good to see that after being mutilated by cancer, we can actually get pieced back together and, even with the constant worry of recurrence, swollen arms, infertility, fear of cancer from all the warning labels of anything we ever had to take for cancer, and physical limitations and pain, there is still hope for life.

The irony of this comment is that the naiveté expressed is exactly what Komen has created by marginalizing metastatic patients and projecting happiness and excitement over as the rule.

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