Where's my clinical trial?

reblogged from http://mbcnbuzz.wordpress.com/2014/05/17/wheres-my-clinical-trial/

Where’s my clinical trial?

by Ginny Knackmuhs, VP of MBCN

I’m one of the lucky ones, I know.

Although I was diagnosed with metastatic triple negative breast cancer 5 years ago, I have been on the same treatment regimen since then. No progression, just blessed stability. I hesitate to write that sentence or say it out loud—afraid I’ll jinx my good fortune, always mindful of the next scan around the corner, when everything can change in an instant.

Metastatic breast cancer (MBC), also sometimes called advanced breast cancer or Stage IV disease, is incurable, but still treatable. Oncologists like to say it is a chronic disease, but with an average life expectancy of 2.5 to 3 years, it certainly isn’t chronic yet. Give us 10 or 20 years of stable treatment and quality of life and we’ll be happy to call it chronic.

Next week I’m going to ASCO in Chicago, the annual meeting of the American Society of Clinical Oncologists. I’ve reviewed the agenda. Interesting and promising research will be reported on, not just in breast cancer but across the cancer disease spectrum.

One thing I didn’t find? Research papers about me, about those of us who are stable or have been NED (no evidence of disease) for years. We are defying statistics and maintaining that fragile, illusive state of tumor dormancy. Isn’t any researcher interested in running my genomic profile, sampling my blood and tumor tissue, establishing a baseline of a mets patient who is doing well? Isn’t it worth looking at patterns that might emerge from studying all of us at this stage of our disease? Why are we among the enviable few of patients living with metastatic disease? Not to collect our data seems like a lost opportunity, a cache of valuable information that should be captured.

Dr. Susan Love in speaking about her research foundation, often cites an anecdote about aviation experts in World War II. They were studying downed planes until someone suggested this: “Why not look at the planes that stayed in the air? ”

This is the 50^th anniversary of ASCO and visiting cancerprogress.net reveals milestones in cancer research and treatment. Yet, there is still much room for improvement. 40,000 women and men die every year from breast cancer—metastatic breast cancer. That number is essentially unchanged in the last decade. 110 people each day, every day, a daily catastrophe that doesn’t make headlines. 110 people dying every day; 770 dying every week; over 3000 every month– from the cancer, which is still viewed as one of the ‘better’ cancers to get. We can and must do better. Even Nancy Brinker tweeted this week: “So much more work to do together to end MBC.”

So, ASCO researchers, I am ready and willing. Study me. Collect my data. I know there are others out there in my situation. Last month I spoke at a program at NYU and a few people in the audience spoke up and said they had been NED for years. Sign us up, ASCO. We’re ready to help.

I’m not a researcher or clinician, just a patient advocate, a woman living with metastatic breast cancer, who is attending the ASCO 2014 meeting and will take every opportunity to ask: Where’s my clinical trial?

Stage IV ad for Komen - Is this a crack in the pink wall?

I copied below a blog entry I wrote this week for the MBCN blog.

I was absolutely shocked to see this ad in the October issue of Prevention magazine:

This has to be the first time that Komen has publicly acknowledged Stage IV as part of their marketing campaign. Hopefully, Komen will have more ads about Stage IV in October.

Organizations are slow to change and whether this is partly due to the Komen organizational shakeup or the Metastatic Roundtable Komen hosted last February to seek information from 10 metastatic breast cancer patients, it is a welcome, small step forward and one that many of us would never have anticipated.

The ad, of course, is certainly not perfect, as it seems to imply that Bridget would not be surviving 7 years without her active, hopeful personality or her doctor’s ‘fighting’ for her.  Does that mean that those who died sooner had the wrong medical team or the wrong personal attitude? Certainly not.

Call me crazy, but maybe some day we’ll actually see a Komen ad that says this:

“The true source of HOPE for metastatic disease is research. That’s why we at Komen are dramatically increasing funding for research into the cause of metastases (the spread of cancer) to stop it in its tracks and save the lives of the estimated 155,000 women and men living with metastatic or stage IV breast cancer in the US, as well as the lives of 30% of early stage survivors who will have metastatic recurrences in the future.”

What should be our reaction now? I think we should be open and supportive of the change at Komen. Contact your local Komen organization and let them know you are metastatic (or Stage IV) and appreciate the metastatic support cited in the ads and hope Komen will be increasing funds for research into the causes and process of metastasis.

I know this will be particularly difficult for many of us who have deep feelings of estrangement and resentment toward Komen and the pink ribbon culture. But some within the Komen organization are trying to change things and that needs to be encouraged and supported.

“A journey of a thousand miles begins with a single step.”
(Lao-tzu, Chinese philosopher)

Ginny Knackmuhs

MBCN Board member

The end of "A pink ribbon race, years long"

In January 2011, New York Times reporter, Roni Caryn Rabin, wrote about the compelling story of Suzanne Hebert, entitled "A Pink Ribbon Race, Years Long." A young mother of 40 discovers a lump while nursing her new baby. Doctors tell her it's nothing to worry about and wait months later to biopsy it, but it's already too late. It's stage IV metastatic breast cancer and has spread to her bones and liver.

Suzanne Hebert, wife, mother of two, optometrist, friend, colleague, mbc advocate and vice president of the Metastatic Breast Cancer Network (MBCN), died on May 30 after living with mbc for over seven years.

The Times article was not the first or the last time that Suzanne shared her story, speaking out for all of us with mbc, advocating for more treatments and more research on metastases.
"People like the pretty story with the happy ending,” she said. “We don’t have the happy ending.

You always hear stories about women who ‘battled it’ and ‘how courageous’ they were. Cancer doesn’t care if you’re courageous. It’s an injustice to all of us who have this. There are women who are no less strong and no less determined to be here, and they’ll be dead in two years.”

In December 2011 Suzanne appeared on ABC Nightly News and talked about the clinical trial for Afinitor that she was on, traveling from her home in Connecticut to M.D. Anderson Cancer Center in Texas once a month."I never thought my liver would be a national TV star," she quipped to me, referring to the 'before' and 'after' scans of her liver tumors broadcast that evening.

But the initial reduction in tumors did not last and soon after that, Suzanne stepped back from her involvement with MBCN, wanting to spend more time with her family. I was surprised in April to read about her again in Cancer Today magazine, but her previous optimism and unflagging hope were gone, replaced by the cold, hard facts of reality and the grim statistics of this disease.

 Asked about some new research, she expressed 'guarded' optimism. “After more than eight years of living with this, I’ve seen so many things that sound like the next great thing,” she says. “You never hear anything else.” In reality, hope arrives “in very tiny increments,” says Suzanne. On the release of the newest 'successful' metastatic cancer drug, which extends life by 2 and a half months, Suzanne said: “That’s not really something to bring the trumpets out about, but that’s the best that we get,” she says. Still, it’s better than nothing. “I’m 46 and the mother of two,” says Hebert. “I’ll take it.”

Sobering words, especially from Suzanne, who lived and breathed lightness and hope. Was it succumbing to despair and frustration or was it resignation and final acceptance of the cruelty of this disease?  I reread the article and felt the sadness settle upon me.

The last time I spoke with Suzanne, she was in hospice. We laughed a little, cried a little and she said "You know you're going to get to this point, but it seems unreal. And all the work we did doesn't matter anymore."
"I know, I know," I replied, although I didn't really know or didn't want to understand and accept it.

I'm a better person for knowing Suzanne, working with her and living in her light. Her race should have been longer, much longer, but it did matter, Suzanne, and we thank you for that.

Cancer babes in New Orleans

Kathy, myself and Deb (not exactly young women!)

I travelled to New Orleans a week ago (post Mardi Gras) to exhibit at the C4YW (Conference for Young Women Affected by Breast Cancer), as a representative for MBCN. Metastatic Breast Cancer Network has always attended this conference as part of our mission to reach out to all those with metastatic breast cancer. But, I was a newbie, a little wary of being drowned in Pinkness, since the conference is meant for young women at all stages of breast cancer. I was pleasantly surprised.

Yes, there was more than enough pink hoopla and celebration. The guy with the pink cowboy hat, sporting a pink bra, (known as the Second Base Man--get it?) was parading around, but mercifully we avoided him. And there were more than a few people advocating to save the boobies, move beyond boobs, keep a breast, etc, etc. And I’m sure many of the survivors don’t realize that 20-30% of them will be joining our not-so-popular club.

But, to get to the good part:  a few workshops were offered for metastatic patients and at our booth we met the most wonderful young women! We had time to hear their stories and struggles, to offer advice, to share resources and information. I feel bad enough to have been diagnosed Stage IV at age 58 (the median age), but it’s sobering to meet young women with metastatic disease who say:

“I was 29 when diagnosed.”

“I was pregnant when diagnosed.”

“I have two kids, ages 3 and 1.”

These women are concerned, worried, overwhelmed, but also vibrant, determined and strong.

It renewed my spirit to meet them and increased my commitment to MBCN and to advocating for more research and more answers to what causes metastases and how we stop it; to raising awareness that breast cancer is not a pretty pink cheerleading event and early detection is not the cure; and to helping all those newly diagnosed with mbc to have the information they need to make the best treatment and lifestyle choices and be their own best advocate.

To my shock, even the pink cowboy, who is a strong Komen supporter and disciple of the positive pink, early detection-mammogram message,  tweeted this on Saturday: “Because my cancer is metastatic, don’t treat me like I’m a dead man walking.”  Hey, sounds like he understands our side of the breast cancer story. Is the pink haze clearing a bit? Is the message about metastatic disease slowly getting out there?

It can't be November already

Wow! another fast week with a two day breast cancer advocacy meeting in New York City and a weekend trip to Long Island.(Yes, it was 10 degrees of separation!)

I also spent a lot of time working on the MBCN website, preparing to insert the videos of the speakers from our October 29 conference. Here's a sneak peak of me telling my story and introducing the first general session, Ask the Experts.  

http://mbcn.org/special-events/category/video-presentations/P0/  
(scroll down to bottom of page and click on my talk) 

Former Ridgewood Toastmasters: please note that your speech evaluations should not exceed 1 minute and should take the familiar form of a praise sandwich: Positive-negative-positive. You might start off with: "I liked Ginny's professional plaid jacket"; followed by I counted 9 ums and thought she looked down too much and ending with "she seemed to be enjoying herself!"  (I'm sure you all remember the drill from our RTM days.)

Keeping it short this week. Enjoy the last of the leaves--our Japanese maple has finally turned its glorious shade of red.

The same little tree 24 years ago:

A Lawrence Taylor Giants Fan with his little brother

How cute were they?!

TGIS

Thank Goodness it's Saturday. Yes, such a crazy week that I couldn't even write this blog yesterday under the more familiar TGIF label.

me and my cancer pals

Last weekend I was in Baltimore for our annual conference --Empowerment through Education -- for the Metastatic Breast Cancer Network (MBCN). Empowerment!  Harkening back to the 60's feminist movement, you would think that word has seen its day, but it definitely summed up how most of us felt after the conference. Very inspiring to connect with others living with Stage IV--many who are much worse off than I am-- but still pushing along and embracing life. We had excellent speakers from Johns Hopkins and glimmers of research hope in new areas of immunotherapy and epigenetics.

Everything went well, except for a glitch with the WEATHER. Snow flurries at 7 am on Saturday discouraged many of our local registrants from venturing out on the highways, so our attendance was down slightly. 

Backyard destruction

The big W became the word of the week. I arrived home on Sunday at 5pm to no power in our house. We ate out, spent the evening at Gary's office and then headed home and straight to bed. Pretty cozy under mounds of blankets, but I was looking for that warmed up brick that the early Americans put at the foot of the bed. We didn't have power restored until Wednesday at 6 pm--a four day stretch that's the longest we've ever gone without power (other than camping trips!) I use the term "we" loosely, since I toughed it out at the shore for three days.

a lone surfer

rolling surf at the shore

Our helpful utility company posted vague updates like "90% of customers will have power restored by Wednesday midnight; the remaining 10% by Sunday."  Later updated this to 90% by Thursday midnight.... But were we in the elite 10%? They also hosted free distribution of dry ice, but with no explanation of how you would use it. 

The last time I thought about dry ice was probably when I was in 4th grade at St. Luke's Parochial School. On the rare occasion of a vanilla dixie cup treat for the class, dry ice was used to keep the ice cream cold. It was steamy, mysterious and dangerous. One of the bigger boys, usually Rudy Poselivic or Freddie Galucci, was designated Dry Ice Man and given the padded gloves to remove the ice, which burns the skin on contact. They were our heroes for braving potential injury so we could all enjoy the ice cream. But do people today know about dry ice? Would they have the voice of Sister Mary Perpetua haunting their memories to be careful with that "burning" ice?

I ended the week with some long waits in doctor offices and infusion suites, another casualty of the storm, with rearranged appointments and shorthanded staff.

Wouldn't these have made great Halloween shoes?

So we missed Halloween, but hopefully have a greater appreciation for our dependence on power and a greater faith in our resiliency in responding to difficult circumstances.

Yes, I'm being resilient!

Today is a beautiful day, but since it's the first weekend we're home in the last month, some attention must be paid to THE LIST. Nothing says Thanksgiving like moving the dining room furniture into the living room and vice versa. You'd think we've got the strategy down now after so many years, but somehow we always end up with someone backed into a corner surrounded by furniture or a table and couch vying for the same limited territory in the front hall. Promises to be an exciting day!

October 13 is Metastatic Breast Cancer Awareness Day

In the middle of Pinktober, one day was set aside by Congress in 2009 to bring greater attention and awareness to the 155,000 of us who will never be pink ribbon survivors, but are surviving every day, living with advanced breast cancer, also known as Stage IV or metastatic breast cancer. Most of us began with an earlier stage of cancer and thought we were safe, cured, permanently in remission. Yet, 40,000 of us continue to die each year, a number unchanged in the last 10 years, despite the "progress" in the government's 40 year war on cancer.

I work with Metastatic Breast Cancer Network, the organization that lobbied for October 13 and continues to fight for more research dollars for treatments to extend our lives. We strive to raise awareness with the public and the breast cancer community about metastatic disease and to educate patients to be their own best advocates in their treatment decisions.

On this day, I would like to honor all the wonderful people I've met and worked with who have metastatic cancer, who continue to work for the cause, raise their families, support each other and live every day to the fullest.  Yes, our statistics are challenging and we often despair where all that breast cancer money goes, but today of all days we deserve a little Emily...

Hope is the thing with feathers by Emily Dickinson
 

Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all, 

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm. 

I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

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