Dear Ms. Robach

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An open letter to Good Morning America News Anchor and breast cancer “survivor,” 

Ms. Amy Robach

 

Dear Ms. Robach,

What a journey you have had recently. From what I read in the press, save the persistent chemobrain, you are feeling well. Congratulations! I am quite familiar with the challenges of treatment and surgery, and getting back to everyday life. It looks like nothing can hold you back!

It ends up we have quite a bit in common.

  • Like you, I was diagnosed young and on my first mammogram, when I was 35 years old.
  • Like you, I opted for bilateral mastectomy in hopes that my lobular disease might not occur in the healthy breast also. (You know, of course, that bilateral disease is most common in lobular breast cancer, which is what I have.)
  • Like you I underwent chemotherapy and tamoxifen (5 years was the standard back then).
  • Like you, chemobrain persists.

It seems we have some differences as well. Read the rest of this entry

Of Ice Buckets and Silent Patients

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Barbara Brenner, the first full-time Executive Director of Breast Cancer Action was a 2-time cancer survivor who died of ALS. Even when her voice was silenced by the disease, her writing continued to educate and inspire. She never stopped asking the tough questions, and persisted in her demand for answers. She is missed.

Even as our Facebook feeds rapidly fill with videos of some very cold people (as well as some Three Stooges-grade comedy), the controversy of the ALS Ice Bucket campaign is being challenged.

My take: people have done stranger things for a cause – buying and using carcinogenic products for “the cure” comes to mind. 

Wasting water? Some – yes, absolutely. But I’ve also seen friends stand in a pool and use pool water so that everything but what soaks their clothes is recycled.

Taking away from other charities? That could be. But if you didn’t know before, you probably do now – ALS is devastating. It is like dying from within. While your mind stays sharp, your body parts lose function – use of limbs, voice and even the ability to breathe are inevitable with this disease. I haven’t looked at the numbers in depth, but the ALS Association is well-rated and regardless, the needs of those living with ALS are most certainly worthy.

Are there better fundraising options? Probably. A campaign that will sustain the new funding levels would probably be the ideal option. And that may come. For now, the infusion of over $15.5 million dollars can, if used well, make a meaningful difference.

For me, here’s the biggest issue of all: while practically everyone has heard of Lou Gehrig’s disease, I fear too few of us knew what it was before the Ice Bucket Challenge began. Patients aren’t out and about much, and it’s easy to forget about them. Awareness and education, and helping ALS patients share their voice and their stories matters. It matters a great deal.

You probably know I’m not a huge fan of “awareness” campaigns – I do feel strongly that they need to be tied to action. As a person living with what is often referred to as a “bully disease,” I recognize that there are many levels of awareness. While we are all of breast cancer, inflammatory breast cancer, metaplastic breast cancer and metastatic breast cancer (to name a few), typically remain shrouded, and are not given the attention the severity of these diseases demand.

So, the ice water part is all in fun, but let’s pay careful attention to the heart of the matter: giving voice to patients and supporting an under-funded disease. If you don’t know what it’s like to live with ALS, please watch this video: 

https://www.youtube.com/watch?v=h07OT8p8Oik

Listen…

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Scan day is a finely tuned day. Normally it hums. (When it doesn’t: A Day in the Life) I head first to the hospital to be injected with a nuclear chaser. I plead with the tech to leave the IV in place, with sad puppy eyes if needed. I have a 90% success rate.

Next I rush to the doctor’s office to start drinking my CT contrast – yum! An hour and a half later I get my CT scan and the IV is removed (I like that part!)

I then return to the hospital for my bone scan, and about 30 minutes later I’m discharged.

Today is scan day. So far, so good. The tech at the hospital asked if I’d like him to leave the IV in place and was delightful in his glee over conquering my vein by “floating” it in with saline.

I am about 8 minutes late to the doctor’s office, which frankly I knew would happen. The office is particularly busy and I am trying to explain to the many layers of administration that I’m late for my contrast. I understand there are protocols. I know they needed me to see a nurse first, but I also know I’ve been playing this game for more than 12 years. They hush me. Then they try to reassure me that it’s fine.

Except it’s not “fine” because the clock has ticked down another 20 minutes. It’s not “fine” because I still need to get back for my bone scan and the window is short. It’s not “fine” because I don’t need this nuclear trace running through my veins unnecessarily, in the event I don’t make my window. And most of all, it’s not fine because we are looking to see if my cancer has spread even further and there is evidence it has. In fact, it’s not “fine” any time you cause greater anxiety for a patient simply because you aren’t LISTENING.

Speak Up!

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It’s an ironic title for my first blog post in over a month, I know. But its been a truly insane summer, and sadly there hasn’t been time to blog. I’m optimistic that today’s post will turn things around, so keep your fingers crossed for me!

 

So, here’s what prompted today’s thoughts: I had a follow-up doctor’s visit this morning. When we entered the exam room John pointed out a posted announcement of an upcoming program under the heading: Patients Invited. The event is an upcoming lecture about BRCA in this it’s 20th anniversary year. The slate of speakers was impressive, but it was clear something was missing. There wasn’t a patient/advocate in the bunch.

Interesting, huh? After all the progress we have made, when clinicians come together to discuss a topic that is, from the patient perspective, so deeply wrapped up in emotions, their voices don’t even make the agenda. Read the rest of this entry

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.

Read the rest of this entry

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: Read the rest of this entry

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.

Read the rest of this entry

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!