Hey Joan Lunden

As many of you know, I have been living with metastatic breast cancer since 2009--6 and a half years of being in constant treatment, being scanned every 3 months, having 2 courses of radiation.  Amazingly I have done very well with the cancer confined to my bones for a long time, although it is now on the move. I have indeed been fortunate.

And yet, all this time I have never had the defining cancer moment of losing your hair. It is still the mark of cancer for the general public and one more misconception that there are a lot of chemotherapies and treatments where hair loss does not happen, but the cancer is just as serious.

So, hey Joan Lunden. Add me to the list!

Getting Wiggy

Great gobs of hair!

Keep the noggin warm

Back to the sixties!

Two recent weekends reminded me of the good old days. Back to the Sixties! I attended college from 1968-1972, which still ranks among the most controversial campus years -- with Vietnam demonstrations, black student protests and radical organizations staging sit-ins in administration buildings. It's interesting to speculate on how that has shaped my world view and political opinions.

Anne, Ginny, Roseanne.  Where's Barbara?

This past weekend I had a mini reunion with 3 of my college roommates. One legacy of a late 60's college education is a continued and acute interest in social and political issues. We covered most of them, along with a little reminiscing and catching up on the present -- kids, grandkids, husbands, careers and retirement. On Sunday, Gary remarked: I can't believe you are still talking!" "Not just talking," I said, "fixing the problems of the world!" 

If only it were so easy. I suppose now we have a more measured view of what can be accomplished and perhaps even a more cynical one. How have our life choices supported our early views and how much have they instead reflected the pressures of conforming and being successful? Racial discrimination and a permanent underclass seem as bad as ever. How have we helped solve that problem?  But I do love how we easily slipped back into our college roles. We sat around on deck chairs sipping mimosas, but could have easily been sprawled out on each other's narrow twin beds in Mary Donlon Hall, as we did 40 years ago.

A few weeks before, I attended the Metastatic Breast Cancer Conference in Philly, sponsored by an organization called Living Beyond Breast Cancer. They do a great job presenting topics of interest to patients with mbc and their caregivers. One new aspect of the conference this year was Hear My Voice Advocacy training held on Friday before the sessions started. The program presented factual information on mbc's biology, treatment and research as well as the needs of the mbc community as presented in the 2014 Landscape Report of the MBC Alliance. There were many young women attending and they were inspired to action. Some cited Metastatic Breast Cancer Network's President Shirley Mertz who spoke and compared the mbc statistics to those of the early days of the AIDS movement. Shirley cited the figure that 108 people die every day from breast cancer and asked why no one was making the media stand up and take notice.

108 die today and everyday from metastatic breast cancer

So the young advocates decided to stage a "Die-In" in the lobby of the Philadelphia Loew's Hotel. 108 women would lie down on the floor, while a eulogy was read to emphasize the lack of progress in this part of the breast cancer campaign. Yes, there are more treatments and early detection, but the fact remains that 40,000 women and men still die every year from mbc--breast cancer that has spread or metastasized to other parts of the body--and this number has not changed in the last two decades. No one knows what causes breast cancer or what causes it to spread.

I was just claiming my car from the parking garage, planning to detour to the shore before coming home, when I got the text from Shirley. Whoa! Back to the 60's! If there was a protest march on an issue I firmly believe in, I was all in. The die-in was moved to the third floor hallways where the conference was being held, but it was moving and emotional.

I was pumped."Back to the sixties!" I yelled and then realized that I was surrounded by some who had not even been born then. One young woman next to me said she had protested when she was in college, too. They were raising the drinking age from 18 to 21! "Oh," was all I could muster.  We may not have accomplished much, but at least my generation aimed higher.

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?

Crazy Dreams

I had crazy dreams last night. Could it be the jalapeno poppers I ate at Hermano Carlos's party? Or was it because I slept with the window open? Or am I just decompressing after a very long month of Pinktober?

In any event Gary and I were moving out West and met people with a big black, furry Pyrennes dog whom we fell in love with. (a subconscious wish?) They gave us the dog and the house they were living in, which did turn out to be a nightmare--water pumping out of the floor in the kitchen and living room which we furiously mopped up, like the Mickey Mouse character in Fantasia, only to have the water continue rising. A man with ulcerous, bleeding arms appeared at the door to help. We suddenly had some unspecified children who caused a fire by using a vacuum cleaner in the bedroom. These were, of course, not our real children, who wouldn't have been familiar with such a machine, at least while they lived at home.

No, I hadn't been watching Halloween horror movies and the 10 trick or treaters who appeared at my door were dressed like princesses, hobos and super heroes, not zombies.  But I did watch some of the Sandy one year anniversary news coverage. We are having the basement recarpeted, after the last minor seepage a few years ago precipitated a major overreaction on our part of ripping up carpet and exposing a decidedly ugly and stark cement floor, gray with splotches of red paint.

I am trying to "move on" in a sense, creating more balance between working for Metastatic Breast Cancer Network and living every day to the fullest. I started with a reappearance at the Y, where my ID was so old it didn't work anymore. One yoga class under my belt so far. I wonder why that didn't appear in my dream?

Calling all criminals

I wondered if I should run this blog past The Ethicist column in the New York Times Magazine. Readers submit their issue and ask the Ethicist's opinion to sort out whether something is not only legal but also ethical.

Dear Ethicist:
I am currently on an oral chemotherapy drug with a very unusual side effect. My fingerprints have disappeared! Not all patients experience this, but apparently some of us do. I'm torn whether I should write about this in my blog or whether I would be inadvertently aiding and abetting the criminal element that would be only too happy to learn how to avoid leaving fingerprints behind at the scene of a crime.
Signed, Finger Printless in NJ

Dear FP:
I think you are worrying unnecessarily, as not all patients get this unusual manifestation and it may take years of taking the drug before it develops. It's hardly a foolproof method and criminals would do just as well using the time honored method of sandpaper and acid. Also DNA at the crime scene is becoming much more common in usage. I also took the liberty of Googling your condition and it has been reported in the news, specifically a case in 2009, where a Mr. S had difficulty entering the US from Singapore because of his lack of fingerprints.
I would advise blogging away, although I would think a more interesting topic could be found.
Signed, The Ethicist

What? Is he kidding? No fingerprints without having burned them off with acid is pretty cool in my book. I first noticed this when I tried to activate my new HP laptop's Simple Pass-- a program that simplifies remembering myriad passwords by having you store them, locked with a scan of your fingerprint. To access all your password protected websites, bank accounts, email, credit cards, and even Facebook, you simply swipe your finger across the sensor--unless, of course, you get the message: "The sensor could not collect enough of your fingerprint. Please swipe again." After about 100 swipes, I examined my fingers and realized they were slightly puffy, cracked and smooth.

Immediately I wondered if this were a sign. Should I start casing convenience stores, plan on robbing a bank or consider breaking and entering around my neighborhood? One of the many pamphlets I have on living with metastatic cancer urges that we "Do Something Crazy."  Hmm....maybe they mean the more traditional things, like taking a hot air balloon ride or travelling to Antarctica?

Texas Time

Yee-ha! breakfast

What better way to start the day than with a Texas shaped, make your own waffle at La Quinta Inn in San Antonio?

My colleague, Shirley, and I were at the San Antonio Breast Cancer Symposium (SABCS) for four days this past week. SABCS is the premier breast cancer conference for oncologists and attracts over 7,000 attendees--oncology clinicians, surgeons, researchers, pharmas, and advocates.

It was my first time there, but Shirley is a veteran with five previous conferences under her belt. We manned an advocate table during the day for the Metastatic Breast Cancer Network (MBCN) and took turns attending some of the sessions. I particularly liked the end of day Hot Topics for Advocates (aka the Cliff Notes version), which featured a panel of oncologists who summarized the main proceedings of the day in layman language. (h'ors d'oeuvres included)

Remember the Alamo

I did slip away one morning for quick tour of The Alamo. Very interesting - a handful of visitors, one school group and a homeless man, dragging his blanket, who seemed to always be in the same room as I was. The Alamo was almost torn don for a hotel, until the Daughters of Texas intervened to save the site, which is sandwiched in among the city buildings and hotels, but nicely preserved. For those Pee Wee Herman fans out there who loved the movie Pee Wee's Great Adventure, I asked the crucial question. And, yes, it's true. "There's no basement at the Alamo!" 

I took in the beautifully lit, tree-lined Riverwalk in San Antonio, the other 'must-see', every day as it meandered along my walking route past the hotels and the convention center.

Shirley and I at SABCS

As for the Conference, I have to admit I'm a bit of a bc groupie and I like to see the "big name" people in the field. My favorite evening presentation  (more free food!) was on a particular subset of breast cancer called Her2 Positive. Dr. Dennis Slamon is the rock star of Her2, having worked on the original research for a widely used drug called herceptin, laboring in his lab for many years when pharma and the oncology leaders had dismissed his research as inconsequential and funding was limited.

If you ever want to read a fascinating and inspirational story, pick up HER-2: The Making of Herceptin, a Revolutionary Treatment for Breast Cancer  by respected science correspondent Robert Bazell. The book came out in 1998 and reads like a novel with intrigue, politics, love, sorrow, good guys and bad, as well as the science and frustration of bc research. It was followed by a Lifetime movie, Living Proof, in which Harry Connick, Jr plays Dr. Slamon.

When I shook hands with Dr. Slamon on Thursday night, I thanked him for all he's done for metastatic bc and said, "I hope there's someone with your perseverance and dedication out there, working on TNBC - Triple Negative Breast Cancer." (my subtype). "Oh, there is, " he replied. "There definitely is."

I pin my hopes on that and see myself as the long time survivor, the role that Bernadette Peters had in the movie. The only real question then becomes who will play me in the TNBC movie?

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?

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.

---

Andrea Mitchell

The cancer blogs and message boards are buzzing today with the news that Andrea Mitchell has an early stage cancer and announced it on her program.

http://news.yahoo.com/blogs/cutline/nbc-andrea-mitchell-breast-cancer-191413850.html

I'm happy for her that it was caught early--after all I was in that same place 19 years ago with a "100%" cure and am now stage IV--0% cure. I don't want to bring you down, but I need to say a few things because I don't think the general public, the media and even much of the breast cancer community understands the strong, visceral reactions that a stage IV metastatic patient feels when they hear a story like this.

1. I'M CURED:  I cringed immediately when Andrea said she "had" breast cancer. She still has it and needs to ask her doctors the definition of a breast cancer "cure".

2. EARLY DETECTION: Her positive statement that "This disease can be completely curable if you find it at the right time" is false. 20-30% of those with early stage cancer will have a recurrence, which can be metastatic.

For those of us with stage IV, we read into Andrea's statement that anyone with a more advanced diagnosis has only herself to blame. But not all cancers are detectable on mammograms and even with annual mammograms and annual checkups, people get recurrences, often metastatic.

3. BREAST CANCER FUNDING: Focusing exclusively on prevention and early detection, pink ribbons and survivors has skewed the fundraising and the public perception of this disease. Many people (including mbc'ers) are tired of Pinktober and if you were to ask the man or woman on the street what they thought of breast cancer, they might say:

Everybody seems to get it. It's completely treatable and curable if you're positive and have detected it early. It's one of the "better" cancers. It gets too much attention and too much funding.

Yet, 155,000 in the US are living with metastatic breast cancer, 40,000 a year die from it. It is the number one cancer killer of women in the 20-59 age group, the leading cause of cancer death for women worldwide and the 2nd leading cause of death by cancer in the US for women, after lung cancer.

And only an estimated 2-5% of breast cancer research funding goes to studying metastases. It's unbelievable how misguided and misdirected it's all become!

And someone like Andrea Mitchell who is a position to report and research the full story of breast cancer disappointingly resorts to the same cliches.

My 2 cents. Thanks for reading.

If you want more information, read:

www.mbcnetwork.org
plug for the home team--the organization I work with

http://www.breastcancerdeadline2020.org/know/31-myths-and-truths
National Breast Cancer Coalition myths and facts about breast cancer--you'll be surprised!

http://ihatebreastcancer.wordpress.com/
excellent, funny, perceptive blog

PS I revised this post after calming down and taking a deep breath last night!  Whew! Thanks for reading.