Our Virtual, Very Real Friend Rachel

Acceptance of the lethality of Rachel's cancer filtered through my dreams early this morning. Suddenly I realized her death would be sooner, rather than later. With that, oddly enought, I fell into an even deeper sleep. Then I woke to these words coming from NPR on the radio:
         "Just treating it is not enough."
         Just treating is is not enough.  Amen.
         I fed the dog, brewed coffee and checked Facebook.
         "Our friend is gone," Gayle Sulik, author of Pink Ribbon Blues, had written to us.

Treatment was not enough for our incredible friend. Her metastatic breast cancer swept through and around every chemo agent put in its path. Rachel Cheetham Moro, beloved wife of Anthony, born in Australia and a fierce intelligence, wit and friend, is dead at 42.
        The magnitude of her message will be topics for many posts to come.
        But for today, her death painfully illustrates the difference in virtual communities and the real world.  How do we mourn this vital presence when we have nothing tangible to touch?
        We were like family. We said as much to each other.
        But in the end, we aren't family. We aren't and could not be there, absorbing each setback during the past week, driving to the hospital, bringing coffee, kleenex, human touch. I couldn't rearrange the hospital sheets for the umpteenth time, stroke her arm, or read to her. We could not touch her cheek nor give her beloved husband a hug. That is the reality.
        The virtual world leaves us her words...raging and often outrageously funny blog posts, emails, DM's, messages on Skype and of course, jokes. Always. Always something to laugh about.  If were weren't swearing, that is. There was something about cancer, and that powerlessness it evokes, that set free our inner sailor.  More cancer asshattery, she'd write. We'd cuss cancer up one side and down another.  If those words could burn she'd still be with us today, believe me.

Plotting cancer strategies at NBCC, May 2011.

Instead, I'll try to deal with the fact that she's gone.  I hope you have some time today to gather your thoughts and remembrances. We'll attempt to bridge the virtual and real worlds in a #BCSM tweetchat dedicated to her. Yes, we will grieve together, celebrate, and yes, laugh.

Someone asked me how our #BCSM community would deal with the loss of a member.  I said I didn't know, but that we weren't going to sweep it away and we weren't going to hide. Our lives matter more than that - Rachel's life, your life.

We'll do the best we can, one step at a time.

With all my love to Rachel.

Special thoughts for Deanna Attai, MD, Katie Ford Hall, Kathi Kolb, Lani Horn, Sarah Horton, Alicia Staley, Nancy Stordahl, and not at all last, Gayle Sulik, PhD.

And thanks to Gary Schwitzer, our previously scheduled #BCSM guest, who graciously stepped aside tonight. I'll announce when he'll be able to rejoin us later this week.

Komen's Shifting Narrative

After all the Komen whoopla this week, what has changed for women at risk for cancer?

Nothing.   Poverty is still a carcinogen.  Women who are poor are still poor. Their cancers are still detected at later stages when the disease is much more difficult to treat.  

What has changed was the lightning fast transmission of outrage via social media following the announcement Tuesday that Susan G. Komen would no longer fund breast health services through Planned Parenthood. The social media conversation that erupted made Komen’s communications stance seem like something out of the Cold War. If they had a communications strategy, that is.

Yesterday Komen founder Nancy Brinker appeared on MSNBC with Andrea Mitchell and started to drop the “metrics” buzzword as if that could explain how their funding shift only applied to one organization. The first explanation was that Komen would no longer fund organizations that were under investigation for alleged misuse of federal funds, yet that narrative wobbled within 24 hours. Today, after the AP broke the story that Komen was revising its funding decision, further analysis of the Komen statement revealed that the organizations revised its decision for this year. Planned Parenthood can then reapply and go through this exciting process all over again.

Women who are poor are still poor, in Texas, in Mississippi or California.  Oregon.  Colorado.

One obvious point that no one pursued or Komen officials never answered was why no one at Komen even responded to Planned Parenthood’s requests to meet with Komen’s Board.  That used to be called bad manners. While in the telling of the story that may seem like a minor point (and part of Planned Parenthood’s own spin machine) for most of us out here in the real world not returning phone calls with business partners ultimately is a kiss of doom.  So it may prove to be for Komen.  But even if the shifting narrative didn’t evolve in very real world where poor women are trying, not always successfully, to find where they can receive screening services, the verdict did. The answer wasn’t about pink at all but FOR assuring continued service to the underserved.

In the meantime donors talked.  Small donors and big donors.  A lot of money changed hands. It wasn't long before nonprofits began trolling for each other’s donors.  Some of this was subtle, and some of it was not so.

Because at the end of the day: women who are poor are still poor.  Until we adequately address the issue of health disparities in this country and develop aggressive prevention strategies all the money in the world won’t matter.  We may not have the Susan G. Komen Foundation, but we’ll still have cancer. At the end of the day, that’s what we're here to fight.

Cancer - is there an app for that?

When I went through chemo my oncologist gave me printed form where I could readily record my temperature, pain, nausea (on a scale of one through ten though in my case the range began at 10 and went from there) and other things I quickly forgot about. But I can still see the form. As the treatments with FAC progressed my desire to be "the perfect (read: anal) patient" decreased. My intake form started to look like an abandoned crossword puzzle. The notes in my journal went from precise descriptions, to short poems, to gibberish. I was proud enough just to make it to my appointments and smile at the receptionist.
     Was I nauseated: yes. Couldn't even stand to see the word.
     What was my temperature? My what?  Does this mean I have to get up?  For real?
     The pain ranking was elementary, my dear Watson. You expressed your pain in a series of smiley faces that ranged from the ubiquitous and perfectly happy yellow smiley face to the bilious, slimy green one with yes, TEARS. If I'd ever felt that badly I certainly wouldn't have been writing on my patient intake form. I'd have been in an ambulance.
      Time passes. Things change.
      When our medical system evolves to the place where it it totally patient-centered the necessary symptom management should easily be accomplished via an app that is tied in to your cancer treatment center. Yes, well.
      Theoretically apps should make things easier. For you. That's the point of all this and I don't know that for sure or what your experience is with them. Our question tonight on #BCSM is this: how are you using apps to help manage your cancer treatment? Which ones are you using?  How are they facilitating your conversations with your doctor? Are you using any now that treatment is over?

       When we finalized this topic both Alicia Staley (@stales) and Robert S. Miller, MD (@rsm2800) suggested the apps available at cancer.net, that includes guides for 120 kinds of cancer, symptom trackers, and videos, podcasts, etc. Alicia will talk about her experience using that application tonight.
       My friend Jennfer Texada (@JennTex) at MD Anderson also sent me this lisT: http://www.mdanderson.org/publications/focused-on-health/issues/2011-july/mobileappscancer.html. The list includes a number of prevention apps from Livestrong and the American Cancer Society as well as the ASCO programs mentioned above. Keep in mind this isn't a conversation about the quantified self movement, we can chat about that another time if you like, but cancer specific apps that are helping you manage your disease. Another good one is NCCN guidlelines, a breast cancer diagnosis guide available from breastcancer.org, and an encyclopedia of treatment terms via Livestrong. These are available on iTunes.
       We'll look forward to talking with you tonight at 9 pm ET/6 Pacific.
       For now, let us know what we need to add to the list!
      --jms 

When the Medium Was the Message

Bill Weir of ABC-News

Let's get this straight:  I like Bill Weir. He co-anchors NIGHTLINE and his tongue-in-cheek features often leave me laughing.

         But Tuesday night Bill Weir inadvertently went from writing about to becoming the subject of the latest, hot-off-the-press celebrity doctor book to hit The New York Times bestseller list in 7:06 minutes, the length of the story.

        For the entire week in fact, ABC-News has provided David Agus, MD, a media platform unrivaled by the introduction of any other medical book that I can remember. Is it ratings week? Publicists must be soaking in champagne. While Weir called the Agus book “the most anticipated medical book of the year,” what I heard was a well-respected physician telling an old story in a new way that is a lot more expensive.

         Ask any doctor or advocate: making prevention sexy is the hardest job in town.

         In Weir's case, the calamity prevented was a potentially fatal heart attack. The diagnostic testing he underwent as part of his assignment (at the request of Dr. Agus) revealed a "calcification in the largest artery leading to the heart." That’s a walking time bomb. I'm not knocking the prevention message. Neither are the hundreds and thousands of other internists, family practitioners, and other professionals who find themselves saying the same thing, in different ways, day in and day out. For years. Maybe the ABC story will reach the ears of other 40-year old men who, like Weir, considered yearly check-ups a great idea for anyone but them.

         But I'm not convinced. His story, compelling from an emotional standpoint but low on fact, had an amazing infomercial quality. The prevention aspect really wasn't about prevention at all. It was about the early detection of disease using "cutting-edge" (read expensive) technology. This is not the kind of health reporting we need.  Here's why:

The Celebrity Factor - the "rock star of science" physician.

Both Diane Sawyer and Bill Weir both were quick to point out that Dr. Agus had consulted with Lance Armstrong and Ted Kennedy and as Weir stated, “… kept Steve Jobs alive years beyond what anyone thought was possible."

           Stop right there. Lance, Ted and Steve. Not your everyday individuals. Not your everyday, readily preventable cancers, either. As far as I know there is NO prevention, not to mention early detection, for glioblastoma, the lethal form of brain cancer that claimed Senator Kennedy's life.  Perhaps there’s some combination of blood markers that’s detailed in the book but this small and obviously intentional mention of the three famous patients propagates existing disparities in our medical system.

           One of the secret fears of any person with a life-threatening illness is that somehow, somewhere, there's some treatment that's better than what they can access or afford. To this end too many troll the internet, buying vitamins, supplements, treatments and other 'cures' from quack doctors and companies. Thousands of people who are perfectly healthy do the same thing in the hope of slowing aging or enhancing athletic performance. There are too many people who think that anyone who puts up a professional-looking web page with the MD tagging along after their name is a "rock star doctor." Do you think I’m exaggerating?  Hang around Twitter for a day and watch what people are buying, thinking and doing as part of a ‘healthy’ lifestyle.

           The best doctors are those who partner with you. That’s the new health equation. The NIGHTLINE piece mistakenly leaves the impression that big doctor, big technology leads to big health when in fact, the opposite is just as true. The accretion of everyday choices, how much we move, what we eat, what we do and do not do, even how we think combined yes, with good technology and medical guidance can lead to good health for many.

          Ultimately, the real ‘rock star doctors’ don't have time for television interviews. That doesn't make them any less than those on the best seller lists. They are the ones, who, often late at night, answer emails from patients who aren't even theirs just to set someone straight.

What Didn't Meet the Eye

Anytime you hear the phrase "cutting edge technology" in health care stories take a deep breath. Cutting edge usually means procedures your insurance carrier is bound to deny -- unless Medicare decides to cover it first. Then your carrier will eventually follow suit.

           "The unfortunate truth is that you do have some heart disease now," Dr. Agus tells Bill Weir early on in the piece. That's the pivotal moment. The reporter’s face freezes. All of us with cancer have had the same deer-in-the-headlights moment. It's awful. Your stomach curls. That's also the moment when the reporter’s fact-finding questions vaporize. Once the reporter is the story perspective is gone. Now we’re sharing Bill Weir’s encounter with mortality. We feel badly for him. We feel badly that his father died and truly, we DON'T want his daughter to become an orphan.  In a rapid flash we’ve seen photos of all of them.

         That's television. You become so involved in story that logical questions fade. Just a few of those questions are:

         

• would a large calcification in a major artery been detected in a routine annual exam?  
• Was/is there a history of heart disease in Bill Weir’s family? Doesn't ABC-News require - or encourage - its employees and key players to undergo wellness tests?  Better yet, does yours? Or do you have your own wellness plan in place?
• And finally, what can you do when people feel they are invincible?  Very few are reporters who were asked (and allowed) by their network to undergo tests totaling thousands of dollars as part of a week-long feature called, The End of Illness. Amazingly, this also happens to be the title of David Agus’s book. 

       

The Elephant in the Room

The elephant, which I should have seen coming before she walked right over me, was the DNA testing company founded by Dr. Agus in 2006 that provided some of Weir’s testing. Whether or not the DNA analysis led to the CT scan or not wasn’t clear. Whether the DNA analysis indicated anything else to prevent other than the big blob in Bill’s artery wasn’t clear. The price of the combined tests, not to mention the entire topic of DNA analysis, certainly wasn’t clear. It was ‘good television’ but certainly not good reporting.

         People deserve better. They deserve reporters and producers who read between the lines. I can point out hundreds of cancer survivors who did everything right and were diagnosed with cancer anyway. Their perspectives on “the new this” or “the new that” is occasionally and understandably jaded.  What needs to be evaluated is of what use this information be to them now. We need to focus on preventing the next cancer, which may or may not be something subject to our control.  And there’s the ultimate illusion: that technology can help us control everything.

Maybe.  Maybe not. Can NAVIGENICS’s cutting edge DNA analysis tell me, or anyone else, if there’s an errant genetic blip just waiting kick off cancer again? Would the good measures I already have in place change a genetic reality one iota?

         Stay tuned.  I downloaded The End to Illness faster than you can say jack rabbit.  I’m about to go see for myself.

          In the meantime, I’ll repeat what Dr. Agus told Bill Weir, “Real food, regular schedule, live healthy.”

          And Happy New Year.

###

The Space Between

From: National Geographic.

Over the holiday I had the opportunity to join my friend's yoga class. She's such a good teacher that I transformed from feeling like a Christmas sausage into a sinuous being capable of anything. 

Yes, she's that good.  My feet were grounded.  I could feel energy gripping the mat through my heels and better yet, extending up through my core, through the density of interlaced scars and knotted tissue in my chest wall. There was a clean, clear stream line flowing along my arm that went through to the fingertips. And out.

As we slowed and folded into a meditative pose she suggested that we consider the space between breaths. Concentrate, she said, on the space between.

The space between. The phrase still resonates. I was like a child with a new toy, calling the words up and considering them or waiting, as they did one cold, crisp evening, to settle in my consciousness on their own accord. For every time those words land a sense of calm follows.  

The phrase works from the literal to the figurative. The space between is that glorious recess between Christmas and New Year's when the big events of the past year crystallize. The space between is a constant ebb and flow of life, as we navigate one day to the next, one challenge after another.  

For cancer survivors the space between can be highly charged or restorative. The space between can be time in between one treatment to the next. As Debbie Thomas wrote last week, it can be the time we need to to adjust, to reframe our identity from being a patient to being a "normal" working woman again.  


Cancer nipped my family badly this past year. There are times I suspect it will always be around, breathing down our necks. There were wounds and losses, recoveries and grief. The space between was an unexpected gift to me, to find my way with those losses, and discover my own way again. I hope you can find your space, too.


Wishing you love and all good things in this New Year,
Jody

Bolero Isn't Just About Fashion Anymore

For certain women with metastatic breast cancer, a bolero is no longer a fashion accessory but great news about a potentially life-prolonging cancer treatment.          

Results of the international BOLERO-2 trial (Breast Cancer Trials of Oral Everolimus) released yesterday at the San Antonio Breast Cancer Symposium and discussed in a press briefing this morning show that the combination of everolimus (Afinitor/Novaris) and exemestane (Aromisin/Pfizer) represents a “new standard of care” in women with hormone resistant, metastatic breast cancer.  These women, whose cancer is fueled by the estrogen, have disease that has advanced despite previous treatment with endocrine and/or chemotherapy.

          This is good news from a number of angles:         

          1) Both are oral medications.

          2) The new strategy delivers a “smart bomb” that specifically interrupts the molecular pathways involved in drug resistance. It continues the evolution in treatment that digs deeper into the biological mechanisms of the cell with each new generation of medications.

          3) The everolimus/exemestane combination kept the cancer at bay for a median of 7.4 months compared to the 3.2 months for those who took exemestane alone with “modest addition of toxicity.”  Those side effects, higher in the group with the drug combination, include shortness of breath, hyperglycemia, mouth sores and fatigue.

On the American Cancer Society Blog Len Lichtenfeld, M.D. wrote, “This study suggests that researchers could indeed produce remarkable results by rationally designing a treatment approach based on science where the hormone resistance was turned off and allowed a different hormone therapy to effectively treat the disease.”

Rational design.  Elegant design.  You hear these phrases attached to the larger and more significant trials.  It’s the same principle as garbage in, garbage out.  BOLERO-2 was expected to be successful because it expanded naturally from one finding to the next. 

A drawback will be the cost.  In this excellent article by AP’s Marilyn Marchione a one-month supply of Novartis AG’s Afinitor, originally developed as an anti-rejection agent for organ transplants, is listed at $11,000 per month.  Another article in the Boston Globe listed the price as $7,000 per month.

You can listen to Gabriel Hortobagyi, M.D., director of the Multidiscliplinary Breast Cancer Research Program at the University of Texas MD Anderson Cancer Center, and lead investigator, discuss the trial here: http://www.onclive.com/conference-coverage/sabcs-2011/Dr-Hortobagyi-Discusses-the-BOLERO-2-Everolimus-Trial

http://en.wikipedia.org/wiki/Strontium_ranelate

        This trial was funded by Novartis.

Genomic testing can now guide DCIS treatment decisions

The only time I'd really seen my surgeon flummoxed was when I referred a mutual acquaintance who was diagnosed with what's often called 'early breast cancer.' The term means different things to many people.  For the woman newly diagnosed the operative word may be cancer;  for those who've been successfully treated congratulations may seem in order (YayYouDon'tNeedChemo); for women with aggressive or metastatic cancer it's the disease they wish they had. 
          "Is she a friend of yours," my surgeon stated, not asking. This was his not-so-subtle way of fishing asking for more information. "No," I told him in all honesty, "she came in under the transom."
          This happens in any community once you've had cancer and are here to tell about it. You automatically become an informal source of information on cancer, doctors, treatments, facilities, and how to cope with everything from infection to nausea to dizziness, and whether or not homeopathy, Dr. Mercola or  Dr. Oz are good sources of information. 
          I later found out what stumped my surgeon. The woman's 'early breast cancer' was in fact DCIS - ductal carcinoma in situ or Stage 0 cancer - and she wanted a double mastectomy so she wouldn't ever have to think about breast cancer again.  Period.  He thought a mastectomy, not to mention a double mastectomy, was like dropping an atomic bomb on an ant. This isn't a story of right or wrong, but an indication of how times have changed in seven years and how, at long last, a technology is now available that can predict when DCIS is more likely to recur.
          Results from a clinical validation study released at the San Antonio Breast Cancer Symposium yesterday represent a great step forward in the treatment of ductal carcinoma in situ, which affects up to 45,000 women every year. To date there haven't been any validated molecular markers to select those patients with a high risk of recurrence. 
           According to a news release issued by the American Association for Cancer Research, this is the first time a multigene test has been used to differentiate the aggressive forms of DCIS that require radiation, from lower risk disease. 
           The study, conducted by the Eastern Cooperative Oncology Group, validated the use of OncotypeDX in patients previously enrolled in a prior study (E5194) of breast conservation surgery. It clearly identified up to 75% of patients over a ten-year period who were at a low risk for recurrence and could consequently, forgo radiation therapy without any differences in overall survival.  
           "This is a big step forward in terms of treating women with DCIS," said Deanna Attai, MD, director, Center for Breast Care in Burbank, California. "With both invasive and non-invasive breast cancer, it is clear that some women are over-treated, and unfortunately we are also not always accurate in identifying which women have more aggressive disease requiring more aggressive treatment. The ability to really identify a cancer's biologic behavior, "what makes it tick" is going to help us be more selective in our therapy, sparing many women toxic treatment that will be of little or no benefit, and identifying women at higher risk of recurrence that should undergo more aggressive, and hopefully more targeted therapy."
          Biology, not pathology, is what ultimately determines the kind of treatment required. How a sample of tissue from a tumor looks under a microscope, said the American Cancer Society's Chief Medical Officer Otis Brawley, MD, in a recent NY Times article, "does not always predict." 
          Bingo. That's the million dollar question. How cancer looks under the microscope may not be the true story of what it does in your body. My cancer may be napping while yours is out to paint the town. Or vice versa.
          The test will be available for women diagnosed with DCIS by the end of this year, "If we can spare a woman from having to undergo adjuvant therapies then we can actually reduce overall cost when the test is  used correctly. The majority of patients are lower risk," said Lawrence Solin, MD, lead investigator. 
          At long last, the beginning of technology to help assist women with "weird cells" and how to help them decide other than repeating the oft-told tale of someone's Aunt Minnie.  Real data, for women who need it. 
                                                            
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