Monday, December 28, 2015


I am choosing to bear witness. I am choosing to support a friend in need. I am choosing to share the needs of someone who has touched my life in such a profound way, I can't find the words to describe the depth of what I feel. I'm choosing to share Erin's story here and in doing so, I hope, if you have the means to help in any small way, you will consider doing so. A page has been set up on Perhaps you can assist navigating the programs available in Denver where she is presently living by simply providing information.

Technically, Erin is homeless. But for the grace of friends, she would be living in her car. In Denver. In the winter. She has attempted to end her life twice since November. In this season of good will and love and light, there are those among us whose very basic needs are not being met.

I met Erin at a meeting of a group of about 30 advocates and activists brought together from all different disease backgrounds.  We were discussing patient centered care. She brings a wealth of knowledge and perspective from so many angles. Her view is truly from every angle and until now, a big piece of what she lives with has not been discussed.

Erin is dealing with so much as you will see if you click over to the links in the text of this post. It is only most recently, that she made a decision to share the darkest side of her story. It was after her attempt to end her life on November 5 that she made a choice to share what she lives with on a daily basis. Borderline personality disorder is a particularly insidious mental illness and it's one many medical professionals state they are told when entering their chosen field, "Stay away from the borderlines.... they are impossible to treat."

I'm not okay with that. I'm not okay with writing off an entire population and I refuse to accept the words "impossible to treat." I have watched Brandon Marshall share his struggles with the very same illness. I understand someone of Brandon's stature within the NFL make things a bit more accessible to him than to those living with far less, but the basic needs of shelter, food and needles to administer her insulin which are essential for a Type 1 diabetic? No, I can't accept any of this. I hurt for Erin.

When I first met Erin at that meeting, she introduced herself to the group as the microphone made its way around each table. After listing the myriad of things she endures on a daily basis, she concluded her introduction by saying, to a room filled with complete strangers, "I almost didn't make it here because of a suicide attempt." I am sure my gasp was audible and I am thankful that there was one person who would have to do their introduction before the microphone would be handed to me. We were shoulder to shoulder at adjacent tables. I think I may have started my introduction by acknowledging my own gratitude that I had a moment to collect myself before having to speak.

Erin is a MedX scholar and months ago, she was very upset about not being able to get to Stanford for this year's conference. At the 2014 MedX conference, this video was presented. It was a letter she wrote to MedX organizers about disparities that prompted the invitation for her to do the presentation. It was a surgery that stopped her from being there in person. The video is powerful just like everything that Erin writes.

In her own voice, Erin speaks about disparities in her "nice white girl clothes."


When interviewed about her participation as a MedX scholar in 2013, Erin speaks about how she wishes to help others.

What none of us could know from her words at that time? While she was sharing her gifts with the world, she was hiding something and that something is an enormous burden. Erin lives with a mental illness.

Erin blogs at Health As a Human Right. If you want to see what has been happening with Erin since 2013 when she spoke so beautifully about giving back to others, I'd suggest you start with her November 3 post, Bearing Witness. Continue reading each subsequent post.

From Suffering to Suffering, Erin shares that she had just attempted to end her life.  She also "outs" herself publicly for the first time, in stark black and white. She had alluded to, but for the most part, chose to hide her mental health history. Fearful, I suppose, it would derail any career goals because we all know how those who admit to mental illness are stigmatized.

Erin raises points in Coping Skills that only one who has tasted those feelings could possible put on paper, including the need for coping skills to deal with her lack of coping skills. When people state, But You Have Your Law Degree, she is quick to share that there is no degree for getting through the system, only grit and determination. Erin has an abundance of both but she is being tested sorely right now. Today. In this very moment.

What Erin shares in Laundry will be triggering to anyone with thoughts of suicide. It's incumbent upon me as an advocate for all to include that trigger warning. There was one suicide attempt that was nearly fatal. It is briefly described. When she writes about doing All The Right Things, we glimpse into Erin's deepest thoughts and her feeling that maybe she didn't do enough of the right things, or maybe, just maybe, there aren't any answers.

Erin then attempted suicide for the second time just days before Christmas. She knew what was next and she wrote all about The Truth About Psych Wards. Readers of this blog may recall an episode where I was with a friend in a psych ward and Erin is spot on accurate. There is no treatment in a psych ward. Stabilize and release.

As of this writing Erin's most recent post, You Should Write A Book, captures the essence and beauty of the person I see when I speak to Erin or exchange an email or text message. She is not ready to write a book and she likely won't ever do so. She will simply offer her words as a record of what she has lived in the hopes it might resonate with another. In an hour of true personal need, she is still more concerned about advocating for all.

I'm concerned about Erin. I've watched this in real time, helpless from my warm home in New York while Erin was sleeping in a car, terrified when she was radio silent for a 12 hour stretch and today, I ask, especially for those in the advocacy community to help pick up a fellow advocate.

On any given day, this could be any one of us. "Life turns on a dime, Annie." One of my dad's quips. Today, I ask for your help in flipping the dime that is Erin's life in this moment so she can find her way back to the important things she does so selflessly for so many others. I have high hopes for Erin. Her intelligence, her ability to communicate and the fact that she has chosen to expose her deepest vulnerabilities.... putting the potential to better others above her own comfort, this is advocacy at its very very best.

And this advocate has fallen. We can not leave her lying there.

Note: If you clicked away in the middle of reading, I'd like to suggest you go back at your leisure and read this post from start to finish without clicking away. Read it in order. Listen to the videos as they pop up. Then go read everything else.

On a personal note, this will likely be the last post for 2015. I wish each and every one of you a wonderful start to 2016. I have lofty goals (no resolutions!) and I hope you will be by my side as I do my best to help when I can, to change what I can, to yell when I must.

With love,


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Monday, December 21, 2015


In March, I wrote a post about the importance of clinical trials. It was my hope to get the word out to as many people as possible. Before starting any course of treatment, before one single thing takes place, ask the question. Whether diagnosed for the first time or because there has been a recurrence, despite that oxygen sucking news, put on your mask and breathe deeply. Remember to ask these words:

How can I find out about ongoing clinical trials that may still need patients?

If the response is nonchalant or if you have a sense that you are being dismissed, do your own homework before determining how you will proceed. Check the online forums. Use social media. Ask in Facebook groups. Send a tweet. Ask a friend. Ask me.

Why? That's a great question and if I am to be truly honest with myself, if I am to put myself back in time and parse out my feelings and the commotion that was my life between April of 2006 and September of 2006, I likely would have bitten off the head of anyone who even hinted that I might want to look at clinical trials.

This is where the experience of those who have walked the path comes into the picture. This is where it's up to us as friends and/or advocates to see if we can find the right moment, when someone is newly diagnosed, to suggest they take a look at what might be available.

Some instances are easier than others although, sadly, it seems the worst case scenarios are those where the suggestion can and does fly right off my tongue. "My (insert relative) was just diagnosed with lung cancer and it sounds really bad. I told her I'd ask if you could give her the names of people...." Yes, that really did happen and yes, my response was immediate. "If I were in this circumstance, I would be looking for a clinical trial before anyone touched me." I went on to explain how trials must adhere to the strictest standards and starting another treatment may exclude your (insert relative) from eligibility.

To take a step back a second and jump on a soapbox, this is one area I do believe advocates at the table during trial design might make a difference. I made a difference but it was well post treatment and when I shared my experience here, I didn't fully understand the manner in which trials are designed. We may have suggestions that could be incorporated into the inclusion criteria and the endpoints that may make for a more meaningful trial. Or not..... but if we aren't included, much more widely than we are now, how will we ever know?

Now, to take a step forward and back into this discussion, what about the early stage patients? They are the ones often faced with many decisions and too much time in between tests and appointments. The perfect recipe for the internet pine box. I know most everyone diagnosed with early stage disease did what I did. Pretty much every day, there came a point where I thought, "I'll take a stroll down the What If Path for the millionth time," asking the same questions with little new information to help formulate my decisions.

It is during this time that clinical trial options can be explored. I can share right off the top of my head two things I would have done. I would have sought out trials to have a cognitive evaluation done before anything else was done to my body after my diagnosis. Again, taking the truth serum, I'm absolutely certain it would have taken some pretty persuasive language to get me to slide into a functional MRI but I do know there were trials going on back then. I know that today. No one even hinted at this in 2006. And I didn't know better, so I didn't ask.

Today, I would love definitive proof that my brain looked differently before eight sessions in an operating room under anesthesia, eight rounds of mild chemotherapy wherein I never lost my hair but I did seem to lose my brain, and eight years and counting on a drug to suppress estrogen. It would have saved countless fights with people and certainly put to rest those who persist in saying, "I didn't have chemo/cancer, what's my excuse?" They mean well. I generally laugh but then, I finally found a way of explaining the difference because yes, there is a difference between chemo brain and getting old brain or too much on your mind brain.

And by the way, what's up with those eights??? I suppose I could find one of those Magic Eight Ball things and see if it has the answer but the answers to everything medical, to everything that will advance the science of understanding and the ways to better and more effective treatments aren't in that Eight Ball, they are in the hands of the researchers. And the researchers can't conduct research without a target patient population. And so, we should be asking the question because the response might be, "Yes, there's an app for that." A research trial app(lication), followed by consent forms and a possibility to help yourself, to help others, to advance the science and develop more effective evidence based practices. Take a bow. That's damn impressive in my book.

At the San Antonio Breast Cancer symposium in 2013, findings were presented for a trial I would absolutely have joined. Truthfully, I would have jumped all over it, quite possibly without even fighting. Or blinking an eye. One of my very first questions was about tamoxifen or an aromatase inhibitor. I knew the benefits and risks of each drug but frankly, although I was pre-menopausal at diagnosis, the chemotherapy pretty much put that over the edge and then, the removal of my ovaries solidified my place in menopause. I knew I preferred the risks of the aromatase inhibitor over the tamoxifen. I did have somewhat of a choice.

At that time, in May of 2007, there were open trials where women taking an AI were given the opportunity to have treatment for bone loss using bisphosphonates, specifically, zoledronic acid infusions. During the appointment for my routine mammography that began my journey into cancer land, I had my very first bone density exam. I was already diagnosed with osteopenia. It would make perfect sense for me to do something to keep my bone strong.

Again, who even knew to ask about any sort of treatment and yet, I could have been lucky enough to be part of a clinical trial to study the use of bisphosphonates administered to early stage patients on an aromatase inhibitor. And yes, a quick search of confirms that there was indeed an open trial, recruiting at several locations including one that was close enough for me to participate.

My doctor didn't suggest this this and I was still on that steep learning curve. I so clearly recall telling my oncologist, "I'll deal with a broken bone over a recurrence," as he was writing the prescription for my femara. The thought of looking for a clinical trial wasn't even in my vocabulary. And yet, there it was. And I was eligible. And because I wasn't a savvy patient, and I had no one to suggest looking at trials, I missed an opportunity.

Two years ago, findings were presented at San Antonio regarding an unexpected benefit of bisphosphonate treatment. It seemed to help prevent bone metastasis in a particular sub-set of patients. I decided it was time to address my osteopenia. I asked a few oncologists their feelings and given the fact that the osteopenia was worsening with every bone density test, there was a medical reason for me to seek treatment. In the scheme of things, it wasn't a broken bone that concerned me, but any edge to prevent a bone metastasis? I'm there. I wish I knew about that trial.

Instead of getting the treatment, I had a brawl with my oncologist's office, first. Then, I got the zoledronic acid infusion, and then I learned there were other studies that should have been shared with me to avoid a three week fever. In April, at my annual follow up, it was determined that I would be given denosumab for my second treatment. That fever made me a failure. I failed on the first medication so I was eligible for denosumab.

(Yes, I would like you to re-read that last thought because it's highly insulting to patients to say we failed on a drug. Did we fail, or is it more appropriate to say the drug failed the patient? A different post for another day. Along with this step therapy nonsense and the inability for a doctor to choose the right treatment for the right patient. Somehow, pharmacy benefit managers get to make those decisions and THAT is a rant that is recent and ongoing.)

Fast forward to San Antonio 2015. A few weeks ago, findings were presented for a trial I would absolutely have joined. Truthfully, I would have jumped all over it. I've always wanted to go to Vienna and this would have given me reason to travel to Austria. I suppose I'd have a bit of an issue here since I would have actually had to choose between the two trials. I couldn't absolutely have joined each of them. Although, I wonder if there was better communication if one or the other trial might have considered adding a third arm to compare bisphosphonates, denosumab or nothing.

Jokes aside,  Dr. Michael Gnant explains the trial in these three videos. I've provided the quick version, the mid version and the hard core science version. It's been written up in the AACR SABCS news release, MedPage Today (complete with video) and Medscape and I'm sure in many other places, too.

The trial was to determine the effectiveness in using denosumab to prevent fractures in patients on aromatase inhibitors. The results are so impressive they will be "unblinding" the trial.

This is important for those who resist clinical trial participation because they are hung up on the idea of "not getting the real drug." Here's why. The results were so remarkable, the effects were so beneficial, it was felt to be unethical NOT to unblind the trial. So there you have it. If you are on the placebo of the next big thing, chances are it will become obvious something is happening and you won't be on a placebo for long after the realization is made. In this case, patients will choose if they wish to be unblinded, they will learn if they were on the placebo and if so, they will be treated with the real drug. Me? I will be fighting with my health insurance company in April for my next treatment.  Clinical Trial: WINNER! AnneMarie/Health Insurer: Fight.

And then, there's the secondary benefit in post-menopausal women. Again, it would seem there is a benefit in disease free survival. Overall survival will take longer to determine and I'm sure the women will be followed. In the video, Dr. Gnant notes that bone treatment is more effective than aromatase inhibitors, tamoxifen or chemotherapy at preventing recurrence.

Looking at everything and drilling it down to get back to what's most important: Clinical trial participation, here's the thing. There are desperation, out of options, Hail Mary pass trials and there are trials to address quality of life or prevention of new cancers. However, in between the two, exist thousands and thousands of trials. We shouldn't be looking at clinical trials as the place to go when all else has failed. Nor should we be looking at trials after the damage from primary treatment has already become something that may be adversely impacting our daily lives. We should be looking into that vast space in between. That's where the advances are happening, that's where the exciting findings are being made, that's where the future of precision medicine lies.

Step up, check them out and if you are eligible, get serious about joining.

And now, let's go to the tale of the (video) tapes....

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Wednesday, December 9, 2015


Some of you may be aware that I've been at this health insurance mess for well over a month. My latest conversation with my broker was yesterday afternoon. "Ride it out. Everything is still evolving." As I understand it, the Attorney General in NYS is looking closely at what is happening.

Health insurance is a state responsibility despite the rules being developed by the federal government under the Affordable Care Act. In NYS, my options start at bad and move to worse. The policies with the better network options require a primary care physician and referrals. To this, I say why? After reading this article about the (in)ability of PCP's to coordinate care, if I'm still stuck being the care coordinator, team captain, quarterback, why I'm still being forced to choose a PCP so I can fight with that PCP for referrals. I'll go out on a limb here and say that many doctors in a given network that requires referrals are hesitant about giving out too many referrals for fear they will be dropped by the insurance company. Until proven otherwise, that's my stance.

How's this for an example of care coordination. I had a loved one have gall bladder surgery over the summer. His GI doc was aware of possible problems with his gall bladder. He was admitted via the emergency room and his GI doc is the head of the department in the hospital where he was admitted. A doctor in his practice ordered the surgery. About a a month after we were home, the GI doc called to find out when we were coming in to discuss the gall bladder issues. I happen to like this doctor very much but was anything on the damn chart. Hell, I had the color glossy photo from the surgery which was presented to me by the surgeon. And yes, it was kinda gross. Not only will we need a PCP to refer to the GI doc, the GI guy didn't even know the gall bladder issue was resolved. I believe, in English, we refer to this as a clusterfuck.

So no, I'm not a fan of this PCP option.

Now, let's go over to the drug formularies. I am still on femara. I have been on the branded drug since I began the medication. I'm scheduled to take this through mid 2018. I'm doing quite well on the medication. I can not know if it's doing its job since the fear of recurrence doesn't go away. It's on my shoulder just like it's on the shoulders of many of us living with early stage disease in post active treatment land. Survivorship. I can't know anything about efficacy, but I do know the side effects are minimal and I seem to be doing fine. And the science, the evidence, has been put on the table. I'm following an evidence based protocol which has been heavily researched. Remaining on an aromatase inhibitor is the best option for preventing recurrent disease.

I also know my mom began on branded femara after her second primary. She began taking the drug just months after I started my own treatment. We compared notes. Yesterday, I asked her to see if she could dig through her pharmacy records. She had to switch off the femara to arimidex. I remember her walking around with a black wrist brace for quite some time. It was one of those giant things that begins between the fingers and goes well past the wrist. There were three velcro straps to keep the thing in place. I'm wondering if this wrist thing was because she was switched from brand to generic or if she was still on brand and the joint pain, which is a known side effect, was something that she couldn't tolerate, brand or otherwise. However, if if was indeed a switch off brand, why would she not have been kept on the same medication, but put back on brand rather than switching to a different aromatase inhibitor entirely. I'm curious.

After reviewing my insurance options for January, I have exactly two plans I am considering. One doesn't require a PCP, the other does. Neither includes femara on their formularies. It's letrozole or pay out of pocket. Or, I suppose, fight. Frankly, I'm tired of fighting. At this moment in time, I am fighting on more fronts than I care to even discuss. The pharmacy benefit managers are causing a problem. I was featured in a CNBC piece about this precise problem. They claim they are putting patients first. And yet, this is the quote: "If you can narrow the networks, you can increase access and affordability..... if we can't get to the price we need, we're willing to go exclusively with one manufacturer."

So here's my issue. I have read about the issues experienced in several breast cancer forums when patients switched from brand to generic. Side effects increased exponentially which is why I'm wondering about my mom. Different manufacturers seemed to be tied directly the severity of the side effects. Worsening joint pains are mentioned frequently, hair loss and awaking at 4AM is bantered about, hot flashes more than quadrupling was another good one. Best of all, one woman mentioned rising tumor markers. I'm well aware that this is all anecdotal, that not one of these statements is backed by a clinical trial where the generics were placed head to head against the brand. But Still.

Patients matter and damn it to hell, why are we not including patient reported outcomes when these decisions are being made. Does quality of life matter or is it only about getting the necessary price? Can someone at least look into these issues? Yes, the woman with the rising tumor markers may have metastasized regardless. Or Not. But absent any sort of studies, we simply do not know and no one is asking the questions and for me, this is a big problem.

All generics are obviously not created equal. The women in these forums where naming the manufacturers and some learned that there was one particular drug that seemed to be cause little or no change when the switch was made. In one of those moments, it turned out my mom had an appointment with our oncologist within days of the airing of that piece on a local PBS station. He saw it and began to question my mom about my averse feelings regarding generics. The thing is, I have no "thing" against generics, I have concerns about some generics.

My cancer medication is a concern. He explained that I could find who is making the exact version of the brand. It made me think of what I read in the forums. Those with the limited change in side effects were likely taking some very close version of the original. Perhaps I have a solution? I may have found the answer but when I called the pharmacy, they don't stock that particular manufacturer and a request would have to be submitted for approval. So, we now have a second layer of approval. Not only is the brand not covered, I have to fight for the generic I want?? I guess that goes directly to the aforementioned quote about exclusivity with whomever is providing the "price (we) need." Seriously??

I had my own issue with Wellbutrin XL which has been well documented as a problem generic. It's been reported by outlets like the Wall Street Journal. Personally, I feel Forbes captured the story quite well. The issue with the Wellbutrin was known for years. Patients knew it but it took years for the FDA to finally listen and pull (some, many, all) generics off the market. I was in fetal position for a month before I realized, that pill doesn't look the same. The doctor put me back on brand and viola, I was back to normal which, according to some in my world, still makes me a bit over the top but that's a story for another day.

Generics are supposed to have the identical amount and compound of the active ingredient in any branded medication. The thing is in the fillers and the coatings. Each manufacturer can use whatever filler they choose and while I'm not a chemist or a pharmacist, I have to believe that any compound has the potential to interact with any other compound. Good, bad, indifferent. It seems that's simple Chemistry 101. In fact, it may even be high school chemistry and not even an AP class, at that.

What to do? There appears to be one solution according The People's Pharmacy which is a website filled with lots of great information. Did you know there are a class of generics known as authorized generics? An authorized generic is identical in every ingredient to the brand and thus, authorized by the brand manufacturer who provides the the generic firm with its own drug or gives them the exact instructions on how to duplicate the product in its branded form.

And there you have it. And to that I say, "I'll have what she's having......"

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