Friday, December 19, 2014


I'm sharing this, not to draw attention to myself, but hopefully, as a reminder to me and to all.  The spirit of this season is love and light.

Drowning out the love and light..... we have this, too.  Feuding family nonsense and commotion and clutter and traffic and noise.  Chaos and confusion.  Spinning in a million directions.  Trying to keep twelve balls in the air.  Stressing because all are equally important and inevitably several are going to hit the ground.  And in my case, several more are going to retreat to the recesses of my chemobrain, likely surfacing moments before I promised (or more likely am required) to do something.

Those words flowed from my brain and I sent them into the magical land of twitter.  Admittedly, it was easy.  I am carrying a mess of stuff but I wanted to remind myself that there are others whose stuff is a whole lot worse than mine.  And then, I ran out the door, late for a doctor appointment after which I pointed my car in the direction of the shopping mall.  I was determined to finish all of the gift shopping on Tuesday and I'm happy to say, I accomplished my goal.

I did the gift wrapping on Wednesday.  I was a woman possessed.  This year, I will spend the entire week before Christmas clearing my mind of everything.  My life has been consumed by much since 2014 was ushered in with the drop of a ball in NYC, just miles from my home.  Yes, I feel like I've been a magnet for far more than I should have had to deal with.  Yes, there are times I want to feel sorry for myself.  And then, I remember.  It could be worse, it is worse for some.  I allow myself my moments but I can't, I won't wallow.

Back to my shopping day.  On the way home, I stopped to put gas in my car.  Up until about two years ago, fingers were constantly pointed in my direction over the fact that I do NOT pump my own gas.  Period.  When I got my license to drive, I lived in a township that did not allow self serve pumps.  Thus, my first eight driving years, I didn't pump gas.  Because I couldn't since I primarily stopped at a gas station close to home.  That set the tone.  Then, there were babies in car seats and the No Pumping Gas thing was simply a way of life.  Not because I was too good to get out of the car, just because that's the way the cookie crumbled for me and gas pumps.

My kids made fun of me.  There were times I almost ran out of gas.  I remember a time I was in Miami visiting my daughter at college.  There are NO attendants on US 1 and I'm almost embarrassed to say, at the time, I had no idea how to even open my damn gas cap.   Yes, I was in a panic.  I know I didn't run out of gas and I know I didn't pump gas, I just wonder how far out of the way I went to find a gas station with a full service island.  That same daughter insisted I learn how to pump my own gas on a lengthy trip.  "Out of the car, mom.  You're doing this."  Now I know.  No more freaking out if I'm running low on fuel and the only stations are self serve.

That rule still exists today in that township and it was that township where I went shopping last Tuesday.  On my way out of the mall, I stopped in Starbucks.  I needed something to drink.  The line was so damn long, I opted to get in my car and stop somewhere else.  Realizing the tank was getting low, I stopped at a gas station.  Two birds with one stone.  Obviously, I wouldn't be pumping my  own gasoline.  I ran into the market to grab a bottle of water as the attendant filled the tank.

I jumped back into my car, grabbing a few dollar bills from the change in my hand.  When the attendant handed me my receipt and my credit card, I thanked him and handed him four dollars.  Four. Dollars.  I thought nothing of it, truly expecting a reciprocal "thanks" in return.  He was an older gentleman and his thank you was filled with such gratitude it took me by surprise.  "Thank you. Thank you so much.  This will help, especially since I won't be working tomorrow."

I had my wallet in my hand and a lump in my throat.  I didn't do anything grand.  I simply wanted to let him know I appreciated the fact that he was outside in the cold fueling my car.  The passenger window was still open and he was already at the rear of my car.  I was so touched, I yelled out the window, "Wait, come back!" and when he came back, I handed him a $20.  "Thank you so much, you have no idea what this means," and then, "please take these back," as he attempted to hand me back the singles.  I told him I didn't want them back and that I hoped he had a happy holiday.

It's the little things.  The littlest things.  I pulled away with tears in my eyes.  I know what's happening in my life and yeah, some of this stuff is exceptionally difficult.  But I have a roof over my head, clothes on my back, food on the table and I'm not worried about how I'm going to stay warm while I'm working in the cold.  Or if there will be gifts under a Christmas tree.

Start a kindness tsunami.  Hold a door for someone.  Offer to help someone who my be struggling with a few too many packages.  Wear a smile.  If you are fortunate enough to have spare change, hand it to someone who helps you or pay for someone's coffee.

That man's pure and heartfelt gratitude was a gift to me.  He thinks I did something for him; In reality, he did more for me than he will ever know.

I wish each and every one of you joy and peace and a heart filled with love, throughout this holiday season and each and every day after.  And to those who may be struggling, whether it's health issues or just plain stuff, know that you are never far from my heart and my thoughts.

To those who are no longer here, to the many friends whose voices I will no longer hear, whose words I will no longer read, my world is a better place because I was graced by the gift of their friendship.  They are all sorely missed.  This year hit hard.  The losses have been enormous.

I hope 2015 starts off a little more calmly than 2014 did.  This year has flown by, but it has been one where I've been tested and challenged.  The sheer fact that this blog has seen a decline in posts tells a story.   In 2014, I wrote one quarter of what I'd managed to write in the the two and a half years prior. I see this space as a place to join friends and the other side of that? I always made my best effort to respond to every comment.  You read, you comment and I see every comment.  That I hadn't had the head or the time to reply, isn't my style either.

And, No mom, there's nothing else happening that you don't already know about...... sometimes it's best if your things are only read by strangers.  But my mom, as many of you already know is one of us.  One of us, twice over, at 20 year intervals and now living with, and thankfully, responding to treatment of metastatic disease.  It was close to two years ago that you all held me up as I walked around MSCKK in circles in the cruelest twist of irony, to learn that she had joined the ranks of the group of patients whose needs are most urgent.  And overlooked by most.

You held her up, too in the comments left specifically for her.  She was stunned.  I wasn't.  I always knew we are a group of friends.  We might not meet face to face but our lives are forever intertwined thanks to the magic of social media.  It made the world incredibly small and exponentially larger in the very same breath.  It made it possible for the cultivation of friendships that would not exist.

So yes, in 2014, I've fallen down many times but I've gotten up every time.  And, I'm still standing.  Still here.  You've been an integral part of that still standing thing.  And yes, beyond all of that, I am and forever will be, grateful for the joy you bring to my life.

Thank you, thank you..... thank you.  From the bottom of my heart and from deep within my soul, thank you.  

Much love,


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Wednesday, December 17, 2014


Every life has a story and this life is no different.

Danny is someone who was very dear to me.  His ashes, as I understand it, have been spread over the graves of his mom and dad.  That was his wish.  He planned each detail.

Beyond being someone who was so very dear to me, going back many decades, Danny was a man whose smile could like a room.  His heart was huge.

Danny and I were inseparable after high school for a bunch of years.  We lost touch for many years at a time with an occasional phone call here and there.

Earlier this year, I found out he was diagnosed with lung cancer.  I called him to say hi, to let him know I was thinking about him.  He gave me the details.  He had shingles.  Bad.  For whatever reason, they did a CT and saw this thing on his lung.

When I spoke to him in March, he had completed chemo.  I recall him saying that it really knocked him on his ass.  He told me the oncologist pushed a very strong regimen because he was in great shape and in that oxymoronic fashion, he was very healthy.  Except for that cancer shit.

I spoke to him again in May.  This time, he called me just to say hi.  It was May 18th.  The date held sentimental value to us and he mentioned during that call how he never forgot that and how each year, he would remember our friendship and how each year, he would think about calling, but he never did.  This year, less than four months ago, he decided he was going to call.  We strolled down memory lane together.  He sounded great, he was feeling great.  Cancer was a blip, he fully rebounded from the chemo and life was good.

Except, apparently, it wasn't.  I have no reason to think he knew something was wrong when we spoke.  I can only surmise the cancer returned with a vengeance.  A couple of weeks ago, I got word that he wasn't well.  In fact, I learned, "it doesn't look good."  I had every intention of calling him but each day, every day brought new challenges in my own life.  I never made the call and now, it's too late.

Danny died on September 3rd in a hospice facility in Florida, near the town where he had been living for the past few years. His former wife, an MS patient, was at his side the entire day.  Five minutes after she left, he took his last breath.

This is the essence of who he was.  Danny was married for a short time.  Married life was not for him and although they divorced, they remained best friends.  When she was diagnosed with multiple sclerosis, well after their divorce, Danny made it his business to care for her.  When her condition deteriorated to the point where she would need care beyond what he could do in his home, when she was no longer able to live alone, he arranged for her to be moved to a nursing home.  When he relocated to Florida, he arranged for her to be moved from NY.

It wasn't near his home, but rather than settle on something less than, he had her put on a waiting list at a facility that was close to his home.   He would not accept anything short of the best possible care and he spent every weekend visiting with her, driving quite a distance but never missing even one weekend.  Until the shingles thing.... and then the cancer thing....

My heart is broken.  It has taken me more than three months to put my feelings and thoughts on paper.  I started writing this shortly after his death.  The hurt, the emotions, the anger over what I feel is senseless kept me from putting pen to paper, to fully capture the man, the friend and the gentle soul with the big heart.  I can't pick up the phone to check on him.  I won't hear his voice again.

Lung Cancer.  It kills and it kills and it kills some more.  My friends who work so diligently to promote awareness of this disease, the stigma attached to it and the lack of funding for research to improve outcomes, do so because this should not be happening. Even with earlier diagnoses, the outcomes are not nearly where they should be.  My beloved grandfather was 55 when he died.  I was ten years old.

Danny was in his 50's too.  He had a LOT of life left.

Instead, he was stolen from those who loved him.

Today, I cry.  And today, I remain aligned with my friends who advocate on behalf of that patient population.

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Saturday, December 13, 2014


Translational research is, in very broad and simple terms, the ability to take science from the lab and make it useful to us, the patient.  This can take years.  And years.....

Translational research for the patient population is translating the research so that is actually means something to us.  Using language that is familiar to a lay population.  (OK, so that's not in any official definition of translational research, but from a patient point of view, I'm using literally terms, making it my own.  All me some leverage here.) Having had the honor of being an Alamo scholar in 2012 and a participant in the AACR scientist <-> survivor program in 2013, I listened closely to the research findings and quickly realized I had to learn a new language, too.

Statistical significance is an accomplishment for researchers.  In science, this means that the study achieved its goal. Research was able to prove that A was better than B because "A" was a certain percentage better than "B" at the end of the day.

What does that mean to the rest of us?  Unless it's put into real world context, not a whole lot.

Let's look at this tweet reporting finding from the 2014 San Antonio Breast Cancer Symposium as an example.

For starters, to see 30% less likely to die, as a patient, I'm all over that.  And, for what it's worth, this particular study should force a change in first line treatment of metastatic disease.  Bottom line, until metastatic patients "fail" on arimidex, they are not switched to faslodex.  From that point of view, why should we wait to have the drug fail us before we are offered a better option.  That's something that must be addressed with the insurance companies that pay for this stuff.  Lives matter.

For the purpose of this discussion, however, I'm trying to make a different point.  Just want to be clear that this should be a game changer in clinical practice.  Basically, a no brainer.  But what exactly does that 30% mean?

Six months.  To be precise, 5.7 months.  When you are staring down a fatal diagnosis, to be given six additional months is a big deal.  However, when I read 30% "less likely to die," from a patient point of view, this is what I see:

"Seven people will die, three won't.  Maybe I'll be one of the lucky three."

And therein lies the rub.  That's inaccurate.  The study is clear.  Death is imminent.  The amount of time has been increased by 30%.  Out of context, even if I understood that concept, that it was time to death, we are still missing crucial information. What is the base from which we are working?  Without that information, 30% is no different from hearing blahblahblah.  If we are, for example, starting at ten years, we've just gained three more years.  Quite a difference from 5.7  months.

Then, there are treatments for prevention of recurrence and this is where shared decision making becomes so important. Using that same 30% as a measure of reducing risk of recurrence, the real information lies in this.  How many women must be treated to derive the benefit?  If, for example, 100 women would need to be treated to prevent 2 recurrences, THAT is the information that should be discussed between doctor and patient.  That is the only true way for us, as patients, to weigh the risk associated with any treatment against the potential benefit.  Some of us are risk takers, some of us are not.  Some of us who are risk averse but can't bear the side effects need to know that a decision to stop a particular treatment in favor of quality of life are not writing ourselves a prescription for disaster.

Without information, in context, presented in ways that the rest of us can understand, there can be no true shared-decision making that is determined using the evidence.  It's all relative, yes.  But some of us don't understand the theory of relativity. Speak to us in ways we can understand.

The era of patient centered care, of precision medicine, has made this a bit challenging.  Sometimes there are many different qualifiers (age, hormone status, genetic biomarkers).  While there is no cookie cutter answer that works for all, each of us deserves all of the available information so we can play a role in guiding our treatment.

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Friday, December 12, 2014


Someone needs to clarify this for the ignorant in the room.  I'm referring to me.  That symbol in the title is not meant to be an arrow pointing to prevention of mets but rather a mathematical symbol.  In other words:

Of the two, Saving Lives is a priority, is (>) of greater importance than preventing mets.  And yes, since I'm in the latter, I feel I have the "right" to be strong in my opinion.  Although, there are likely enough researchers to address all of this simultaneously. We just need to rearrange the funding and understand how to properly distribute and prioritize.  Easier said than done. Possibly impossible to achieve.

Breast cancer is front and center at the moment as the 2014 San Antonio Breast Cancer Symposium winds down.  I've tried to follow the twitter feed (#SABCS14) but there are few advocates who are tweeting from the event this year.  I hope that changes in future years.

Last year, I followed the feed and the presentations and the press releases and tweeted what I was seeing from my home in NY.  The year before, I tag teamed with Lori, tweeting live from the sessions.  It's not easy to live tweet with a chemobrain but it's easy with a partner.  Lori is an excellent partner.  This year, I have much on my plate and I couldn't follow the stream with the regularity necessary to do justice to remote tweeting.

Instead, I'm relying on articles being written in publications, press releases from the companies who stand to make a boatload of money from the sale of a particular drug or product should the study make it through peer review to publication and/or approval by the FDA prior to peer review.  Some are skewed and some are leaving out important pieces of information.

One example is a study called IBIS which examined the long term use of tamoxifen as a preventative in high risk women. Many of the women in my own family who've not been diagnosed with cancer fall into this group.  The results were reported in the Lancet but the best write up of the results, the most thorough reporting has come from my friend Elaine Schattner in Forbes.

Bottom line, prevention of disease was observed, reduction in death was not.  Statistically insignificant but highly significant to me? The incidence of endometrial cancer (and subsequent death from same) and non-melanoma skin cancer along with a trend toward ER negative breast cancers at the 16 year mark.  I didn't read this carefully but Elaine's article is something to read slowly and carefully.  I'd say the jury should still be out on the use of tamoxifen as a preventative method.  Anyone considering this approach, in my opinion, should be carefully weighing the actual benefit (not the statistically significant benefit) against those noted (statistically insignificant findings and trends) risks.

That's not my ignorance.  I just haven't had time to digest that fully but at quick glance, I have an opinion that I would share with my loved ones, if asked.  My ignorance is in another area.  I could be hypersensitive about this.  I could be missing an entire piece of the point.  Or maybe I'm just ignorant.

These are three blurbs taken out of context from another article.

"The real question, the question that demands a real answer, is how do we stop the women and men we love from dying from this disease?"

".... the only way to save lives is to focus collaborative research on two very important areas: primary prevention of breast cancer and prevention of metastasis--or the spread of the disease to other parts of the body."

"This year, worldwide 522,000 women will die from breast cancer--isn't that a strong enough motivator to change the way we approach breast cancer research?"

I'm completely befuddled by the whole thing and I do not wish to bite the hand that feeds.  It was an invitation from the author of this article that found me in the White House.  It was the tireless push by this author that found me as a reviewer on the DoD grant panels.  It was the people I met on one of those panels that opened doors for me to meet researchers who asked me to prepare a lay abstract as the patient advocate on a research grant that I later learned was funded for one million dollars.

I'm not biting the hand but I am challenging the questions and the proposed solution.  I have spoken to many in the research community for their opinions and for clarification in the hopes that I might understand.  I'm trying to address my lack of understanding or my complete ignorance.  Bottom line, yes, I believe in prevention **if** that is indeed an achievable goal. Everything I'm hearing seems to indicate, "No."  That the best we are going to be able to do in our lifetime is continue to reduce risk but prevention is not lurking around any corner.

Am I disgusted with the incremental gains?  You bet I am.  My mom's first primary was in 1987.  Likewise, the person whose hand I'm not biting was diagnosed in 1987.  My treatment in 2006 mirrored my moms.  I've often said there's been no meaningful progress when it comes to  my own circumstances.  My mom's second primary was in 2007, shortly after I completed my active treatment.  In 2013, my mom's cancer found its way into a rib.  Although not definitive, the doctors feel this was a 20 plus year dormancy, that the metastasis was from the first cancer in 1987.  And even if they are wrong, she still passed that magical, bullshit five year mark.

I'm about to morph into Mona Lisa Vito.  (For non-fans who really need a good laugh and if you are the one person on the planet who has NOT seen My Cousin Vinny, seriously, watch it)

"So what's your PRAAHHHBLUM?"

"Would you like me to explain??"

Here's my question, my problem and an explanation of my question and my problem.

I've asked some of the preeminent researchers in the breast cancer world how prevention of metastasis equates to prevention of death.  In other words, does prevention of metastasis help those already living with metastatic disease?  I've gotten a resounding, "NO" from every single one of these people.  They are people who are studying metastasis hoping to unlock ways to prevent death and prevent metastasis.  I'm not certain if their is an overlap in the research but it was clearly stated to me, "Two completely different animals......"  Might prevention of mets equate to stopping progression of mets, thereby saving lives?  It's a stretch in their eyes, but yes, there's an outside shot that could happen.

In The Meantime, statements that challenge us to think about what we are doing to stop the deaths of our loved ones followed by suggestions that prevention of metastasis will actually help those presently sitting on death row is misleading.  To follow that by saying that worldwide, more than half a million lives will be lost this year, I wonder how any of what is proposed is going to help those half million people.  Or the half million plus who will likely die next year and the year after that, too.

I've pushed back on this before and I'll do it again.  I have skin in every part of the game.  I need to know I'm protecting my family and myself and there is a three pronged approach necessary.

  1. For my daughter, I need research on primary prevention.
  2. For myself, I need research on prevention of metastasis.
  3. FOR MY MOM (and so many of you who mean so much to me), I REALLY need dedicated research on stopping the progression of metastatic disease to SAVE LIVES while preserving a good quality of life.
Triaging those, my mom's needs are the most important of all.  Her life is the one hanging in the balance.  First we address those with the most urgent needs.  You can't fix death.  That's Game Over time and frankly, 2014 has been an awfully rough year for me.

I've watched far too many who were near and dear to me succumb to this disease over these past 12 months.  I stopped keeping a "scorecard" and I will likely remove the Gone But Not Forgotten list from the left of this blog margin and put it on a page.  The deaths came in waves this year and I couldn't keep up.  I just kept crying instead.  And then cursed and then screamed and then cried some more.

Prevent mets in me.  Please.  But first, save my mom and save my friends.

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Monday, December 8, 2014


Research saves lives.

Research ideas begin with a thought.

Beyond the thought, it becomes an idea, a concept, a design.  Tissue studies, animal studies and if the thought seems to hold up throughout the process, ultimately, the life saving research requires human clinical trials.

The process from the thought to the patient can be decades.  Since that's not the purpose of this post, I'm not going to seek out the necessary information to back that length of time statement.  I'll just say, "It takes a damn long time" and leave it there.

All Trials is an initiative I've supported since I learned about its existence.  It irks me in ways that I can't describe to know that study results are not always reported. is the repository for trial information.  It's cumbersome to use but it's there.  My aside comment:  Maybe the government should consider an overhaul of the site including some real, "normal" patients on a committee and I'd like to toss my name out for consideration.

And, as much as I'd love to be involved in a project like this, the unfortunate thing is that patients might be included as tokens or as unpaid consultants and frankly, my time and my efforts can't always be pro-bono.  The experts get paid and the patients, the real experts, should simply bask in the honor of being asked.  I'd rather bask in the glow of holding the hand of someone in need, in choosing small projects to help organizations whose efforts align with my beliefs.  I will gladly be first in line to volunteer my time in those capacities but frankly, when others are being paid for input, it's a tad insulting to be seated at the same table at my own expense.  HUGE digression that has nothing to do with this post either.  I think I just had to get that off my chest.

I need your help.  We need *all* study results to be reported.  Right now, the so-called negative findings are considered failures and are not reported in trial results.  From where I sit, there is no such thing as a failure when it comes to research.  A failure to meet a trial endpoint means we LEARNED something.  I don't see that as a negative anything.  We've ruled out one more needle in the proverbial haystack.  We've rid the haystack of one more "barking up the wrong tree" idea.  That's good.

These results are not reported.  Not only is that a disgrace to the taxpayers whose dollars fund this research, it is absolutely disgusting to the patient population that chose to enlist in one of these "failed" trials.  What?  Their enrollment meant nothing? They contributed to advance the science and their efforts are in a paper shredder.  That is the epitome of indifference by those who withhold evidence from those who put themselves out to participate in accumulating that evidence.

It's just wrong.

Currently, there are two complementary initiatives to change this paradigm and I support each of them.  Bear with me as I make a run at explaining why there is a need for two separate proposals and why it is imperative that each of us add our voices to support the changes.

The National Institute of Health aka The NIH, under the leadership of Francis Collins has a pending proposal that would require certain clinical trials to report ALL outcomes for which it has provided any source of funding.  Currently, according to the announcement, "scientists fulfill their obligation to contribute to the general body of knowledge through peer reviewed journal publications."

The entire peer review process can be a problem for a number of reasons.  Journals, customarily, are not available to the general public.  If a study is rejected for inclusion, it is a small number of people making the decision that the results of any given study are not important enough for their journal.  Not only is that an elitist stance, it removes the patient population from access to seeing the study information that is published unless we are willing to pay upwards of $35.00 to access.  Last I checked, there are no patients on the panels that determine what is considered publication worthy.  I believe there are studies that would be of tremendous interest to specific patient populations but without a patient voice on those review panels, that whole system reeks of paternalism.  Sorry... digression.  Huge but important digression as this all goes to patient centered, patient powered, patient whatever.....

Less than half of the clinical trials funded by the NIH were published within 30 months of trial completion according a recent study referenced in the announcement.  Concerns about "selective publication of the results of some trials and not others -- or publication of incomplete or partial findings...... can lead to inappropriate conclusions about the usefulness of particular therapies."  I do believe we refer to that as publication bias but don't quote me on that.

The new criteria would prevent duplication of efforts.  This is particularly useful when the duplication might involve something that was already studied and determined to be unsafe and unsuccessful.  That's not rocket science, that's simply common sense.  Then, there is the matter of those individuals who show up.  The volunteers who participate in a study assume risks. As previously mentioned, it is the epitome of "you don't matter, regardless of the risk you took," to withhold study results because they don't meet journal criteria or they are considered a failure.  The patient didn't fail anything.  The study didn't meet it's endpoint.  Or, particularly with phase I studies which determine safety, the intervention was found to be UNSAFE.

At the heart of this proposal is the need to find other ways for results to be shared with researchers, clinicians and patient communities.  It's not about the journals, it's not about presentations at a science meeting, it's about having the information, all of the information, in a place that is accessible to all, namely clinical  You can read the red tape version, NIH Request for Public Comments on the Draft NIH Policy on Dissemination of NIH-Funded Clinical Trial Information here. Comments will be accepted through February 19, 2015 and may be submitted via email, snail mail or fax.

Fax:      301-496-9839
Snail:    Office of Clinical Research & Bioethics Policy, Office of Science Policy, NIH
             6705 Rockledge Drive, Suite 750, Bethesda, MD   20892

As for the second complimentary proposal, online comments will be accepted in an open forum on  Clicking on the Comment Now button will open up a new page where you can submit your comments.  They may be viewed by others (although the name field is required, "Anonymous Anonymous" is acceptable field input).  You may read some of the previously submitted comments here.

The second proposal involves changes suggested to clinical trials reporting which expands upon a previous FDA amendment. The document is over 100 pages in length.  Again, bear with me as I make yet another run at an explanation the rest of us might understand....

The key changes are in the PDF which is available for download located here.  There are two pertinent elements that jump out at me from a patient perspective.  Determination of what constitutes an applicable clinical trial (ACT) would be removed from the hands of the submitting researcher.  Instead, the FDA will implement the use of an algorithm to determine which trials fall under the new reporting measures.  Presently, the application includes submission by a responsible party to indicate whether the trial is an ACT.  New data information would be required within the application to assist in making the determination via the algorithm.

Also, it appears there will be rules in place for evaluating the use of already approved drugs for other purposes.  What we know as "off-labeling" would be incorporated into the changes being sought by the FDA.  Adverse event reporting requirements will be expanded.  Whether anticipated or not, adverse events that occur in more than 5% of the study population would have to be included in a second table.  From the way this is written, it appears this is presently not required.

This second proposal is much more specific in its goals and as a result, seeks more detailed public commentary.  Specifically, they are looking for comments regarding the advantages and disadvantages of including technical and non-technical summaries in reporting.  Additionally, opinions and remarks regarding information that might assist in the understanding of adverse event information is being sought from those who are providing commentary.

Of note, this is not cancer specific.  This applies to all clinical trials funded by the NIH and all trials involving FDA regulated products.  Also noteworthy, comments are being accepted from anyone.  In other words, you do not have to be a US citizen to weigh in.

I encourage everyone interested in advancing research at a quicker pace to support these changes by raising their voice by the February 19, 2015 deadline.  If petitions are drafted or sample letters are proposed by any organizations that help add the patient voice to this discussion, I will be sure to update here.  The reporting part is one piece of the puzzle I am only superficially familiar with.  I can review a grant application, I can help write a lay abstract, I can decipher published study results and translate them into lay language.  The reporting process and journal inclusion is the big abyss and it would appear, for the moment, it's by design.  That design must change.

If my brain allows me to clear itself enough from the mountain of personal medical stuff that continues to swirl, I will take a stab at drafting something on my own.  Right now, I'm still trying to learn about hypertriglyceridemia (which apparently could well have been fatal, but while I was still in emergency mode fighting over proper patient care, I had no time to learn and wasn't being included in any medical discussions).  Throw in an attempt to navigate the mental illness maze when someone is too sick for some treatment programs and not sick enough for others.  Add a dash of being stuck in the middle of that mess leaving one feeling both helpless and hopeless and I know something MUST change.  Lives are being sacrificed.  Yes, there is much in front of me and despite the ACA's promise of mental health parity, it doesn't exist.  It's all about the haves v. the have nots, particularly as it applies to the treatment of those with mental illnesses and I defy anyone to show me differently.  In this country, at this point in time, that is simply not acceptable.

I have much to do.  But this clinical trial change is an opportunity with a ticking clock and it's one I could not afford to share, despite the fact, I have much to do.

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Friday, December 5, 2014


Cross posting from ShareThoseMoments in case you are new to this blog or weren't aware of my pet project.......

The project continues.  It's not been forgotten, it's just been one of many balls I'm juggling at the moment.

I've done a quick analysis of the responses.  My friends at Breast Cancer Action invited me to participate in a webinar.  I will be presenting the unsexy side of breast cancer.  The most important aspect of advocacy, at least for me, is to remember that it's not all about me.  It's about the community and bringing the voices of many to the conversation.  That is precisely what I hope to achieve during this webinar. 

I missed most of October.  In fact, I missed the entire month.  For the first two weeks, I was recovering from the effects of a reclast infusion.  The first day I felt better, my husband found his way into an emergency room which was the beginning of a ten day stint in an ICU.  Severe acute pancreatitis caused by hypertriglyceridemia, which, in his case, appears to be a genetic thing.  He was discharged from the hospital on November 1st.  Since I started the month of October in bed with a fever hovering at 102 and spent the rest of the month raising hell in a hospital where they need a few lessons in patient centered care,  communication with family members and the concept of shared decision making, I missed the pink hype.

We did a run through of the presentation the other day.  The first half of the webinar will focus on the sexualization of a disease and the manner in which some of the awareness campaigns cross too many lines.  We are women, not objects.  We are more than our breasts.  In fact, there's a living, breathing person attached to those breasts.  The second half will, I hope, get people to think about the women attached to the breast, about what happens after a breast cancer diagnosis, about what goes on in our minds, about the effects on our bodies and what is, or more accurately, is not happening in the bedroom.  At least some bedrooms.

If you'd like to join the webinar, there will be two presentations next week:  one on Wednesday and one on Thursday. The information is on Breast Cancer Action's website if you'd like to join one of the live webinars.  There is no charge.  Next week is the San Antonio Breast Cancer Symposium, too.  I'll be following the twitter feed and it may not be possible for some to join the live presentation.  No worries.  BCA will provide a link so you can watch and listen at a more convenient time.

I hope to see you there.  The survey is still open.  If you want to weigh in, I'll be writing notes for my presentation right up until game time.  Add your voice.

In related news, I was interviewed for a publication of, Lives Affected By Cancer.  The article, "The Side Effect No One Talks About," is well written and I was happy to share a bit of my own story.  Shout out and thanks to Catherine Brunelle and Terri Wingham.  Each of them suggested the executive director, Sherry Abbott contact me for the article.

That's all for now.  Stay tuned for Wednesday and I'll be sure to get a link posted here.


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Monday, November 17, 2014


Severe acute pancreatitis, the result of familial hypertriglyceridemia, spiking an A1C test result of 8.  Likely caused by the hypertriglyceridemia, hopefully reversible, that 8 means triglyceride induced diabetes.  As the inflammation in the pancreas continues healing, with proper diet, exercise and strict adherence to medications, the chance of the diabetes resolving itself is high.  It's all a foreign language to me.

Fortunately, there was no damage to the pancreas.  The lipid issue, specifically this uber high triglyceride thing, is something we've known about for over a decade.  The fallout, something we knew could elevate the risk of heart disease, is epic.  I know about breast cancer.  I understand about the problems associated with proper treatment of those with mental illness.  Who knew about this pancreas stuff.  The rest, I learned as I went along.  Feeling for things as if I were blind.....

"As I went along" involved a 12 day stint in an ICU of a NYC hospital.  The care was excellent.  Keeping the patient, my spouse, (or the loved one who was not high as a kite on morphine--that would be me) in the loop, in a word SUCKED.  This was the inverse of that old phrase:  The operation was a success but the patient died.  My phrase might be more along the lines of:  The patient is healing but the process could have been facilitated (and likely hastened along) by including us in the decision making process.  No one asked a damn question.  They just looked at numbers on charts.  Communication was dismissive, paternalistic and frankly, broke several of the rules on the NYS Patient Bill of Rights.

I am an ePatient.  Whatever that word means, it's me.  And, with many thanks to HIT Consultant  I was quite stunned, exceptionally humbled and most of all, extremely gratified to find myself on a list of 15 Influential ePatients and Patient Advocates to Follow.  The article was posted on November 3rd.  I was up to my eyeballs in medications, diabetes meters, lipid profiles, insulin pens and follow up doctor appointments with the specialists who know about the way the fats and the sugars interact in our blood and how it is all regulated by the pancreas.  I spent so much time fighting for information, I had no time to research so I could ask good questions and provide necessary information.  Not that it would have mattered.  No one wanted to listen and for that matter, no one wanted to share information, either.

I was fever free from my Reclast infusion for less than 24 hours when this episode began.  Three hours into what appeared to be heart attack symptoms, I was finally in my car, driving like a lunatic, to the nearest hospital.  Calling 911 is ALWAYS the prudent thing to do.  I've previously said I would suck at being a boy scout with that whole Be Prepared Thing but this time, I WAS prepared.  As I watched the pain level increase, I already mapped out the route to the nearest hospital.  It was a 7 minute drive.  Presuming the driving was done legally.  I ran every light.  It was almost 11PM and the streets were empty.  I know I got to the hospital far quicker than any ambulance would have gotten to us.

Within an hour, the emergency room staff realized it was pancreatitis, not a heart attack.  And who KNEW until well afterward, this could be deadly.  I never expected a full hospital admission and I certainly could not even fathom ICU for 12 days but that's what happened.  The hospital is part of a large conglomerate.  In addition to slapping their name on a whole mess of hospitals on Long Island, they have now ventured into NYC.  In addition to THAT, they started their own health insurance company.  That all seems a little fishy, a little monopolistic and I, for one, can't see how it benefits patients to have one organization controlling everything but I haven't investigated that in enough detail to make an intelligent comment.

In no particular order, the highlights of 12 days of ICU.  I did 12-14 hour bedside stints every single day.  I watched the numbers on the meters, I watched the IV bags drip, I watched the nurses.  Most were unbelievably excellent.  A few, not so much.  The doctors.  Like I said, the care was excellent.  The communication, awful.  Not only communicating with us but communicating with each other.

Two sets of numbers were in play: The triglycerides which seemed to fall under the responsibility of the GI doctor.  The glucose was the responsibility of the endocrinologist.  And then, there is the attending physician who gets to make their own rules.  The word "cluster*K" is what jumps to mind.  The treatment for pancreatitis as severe as his? "Nothing by mouth."

Nothing by mouth means nothing.  Not an ice chip, not a sip of water.  Try that for a day or two and then imagine the frustration at day 5.  Everything went through an IV line until the NG tube was inserted through the nose, down the esophagus to the point where anything that went into that tube would bypass the pancreas.  An X-ray confirmed the tube was properly placed.  Just the thought gives me the creeps.  The tube was used about three times for feeding.  It was used twice a day to dispense oral medications.  It was a waste.

Every day the same nonsense played out.  The GI doctor would come in and say, "We are starting you on a liquid diet today."  Then the endo would come in and say, "NO food."  The next day, they would switch roles.  The liquid diet was okay with the endocrinologist and the GI doc would overrule with an "Absolutely no food."  These two doctors were NOT conferring with each other.  Nor were they looking at the patient as a whole person.  Nor were they asking any questions of either one of us.  They were looking at numbers.  Way to go.  Great way to treat a systemic problem..... by focusing on one item in a vacuum.  Pissed.Me.Off.  Then, they were in agreement on the whole thing and the hospital attending stopped the process.

 Unfortunately, I wasn't around for those visits.  I was there for rounds which is when episode one occurred.  I wanted to be at the bedside when the doctor spoke to the patient.  This is my loved one who is high on morphine and can't really understand much of what is being said.  He was told a CT was being done first thing in the morning to see what was happening in the hope that we could at least add ice chips to the repertoire.  She entered the room with her entourage, told me I had to leave and I informed her I would not be leaving.  I needed to hear what was being said FIRST HAND and in real time.

I will be the first to admit I can get a bit overly zealous and I'm glad another loved one was there to bear witness to the scene that ensued.  After it was over, I asked if I was over the top.  "Over the top, you didn't see my face.  I was ready to explode, waiting for you to open your mouth.  How dare any doctor speak to a patient or a family member the way she spoke to you."  So, what did she say?

It didn't start well.  When I said I was staying, she asked me, "Are you A DOCTOR?"  With emphasis on those words.  As if....  she's God and I'm a moron.  Wrong ePatient, wrong patient advocate, wrong  loved one to speak to in that tone and imply that only a doctor could be bedside.  And it got better, "Well who exactly are you?"  She knew damn well it was my husband in that bed but she wanted to know who I am professionally that would entitle me to remain bedside.  It got ugly.  She began saying no CT scan was ordered and I lost my shit.  I was there for that conversation but here was the attending overruling the specialist.  It got loud.  I demanded the specialist be contacted immediately.  She told me I had no right to tell her how to do her job.  I told her I was sick and tired of having three doctors dispensing three different sets of information.  I don't think that was ever properly resolved until many days later.

What I recall about that exchange with great clarity?  I remember her dismissing me with a remark about the size of the team that was caring for him.  And I recall asking her if the concept of patient centered care meant anything to her.  When she looked at me with a puzzled expression, I got damn nasty.  "TEAM?  I don't care how many people are on the team," my voice dripping with sarcasm, "there are two people who not part of the team."  She began to attempt to say something but I cut her off.  "The two most important people are missing for your team, HIM and ME."  The other thing I recall with clarity?  When I returned to the room to allow her privacy to attend to the patient in the other bed, my husband asked me what the hell I said to her.  "All I know is she's been in here every day with the same gig.  The doctor that walked around after you finished with that conversation was a completely different person."  Score one for the empowered patient team.  

I wanted lab results.  They were drawing blood every six hours for several days.  I was blown off.  Occasionally, someone would throw me a bone and toss out a triglyceride number.  No one, however, sat down with me and went over the series of numbers so I could explain what I KNEW about the triglycerides, specific to this unique patient.  I could have shared ten years of knowledge, ten years of explaining that numbers that are absolutely not normal for the rest of us, are not abnormal for the man in the bed.  Instead, they stopped the feeding tube.  This spikes the sugar and that spikes the fat and I'm ready to spike a computer screen in frustration.

Their idea of shared decision making?  Hanging an IV bag and saying, "This is Miracle Medication." Sometimes, they would add, "It's for an infection."  For the record, there was no infection but they kept hanging every different antibiotic over a high white count or recurrent fevers which could have been due to the systemic inflammation.  That's exactly what happened to me with the reclast.  When they added an infectious disease doctor to the team, he explained he would be checking for C-Diff which he was certain was the cause of the fevers.  He was concerned about a blood fungus from all of these antibiotics.  I wanted them stopped, I told them so, they refused and just kept hanging bags.  I'll presume they asked my spouse if it was okay to hang the bag when I wasn't there.

Bottom line, there was no infection.  Nothing in the blood cultures and that "definite C-Diff" diagnosis by the wonderful infectious disease doctor was a bust, too.  I would venture to say he was given IV antibiotics for at least six days and there were at least as many different types administered.  All for nothing.  Way to go on creating a situation of antibiotic resistance.  Dr Infectious Disease had his own attitude going when I was asking questions.  G'damn it.  I'm sitting beside the bed.  Here's the doctor deliberately only looking at my husband.  WHAT is that all about?  Someone needs to teach these guys about the art of medicine.  It wasn't until my husband finally mentioned my involvement with Sloan Kettering and some of the volunteering I do, that he began to glance in my direction.  Sparingly.  At best.

Then, there was the evening, about two days into this thing...... one of the doctors changed the pain medication schedule.  Pancreatitis is apparently, very painful.  He was given morphine every four hours.  During the shift change, the doctor going off shift changed the schedule to every six hours.  It's 3 1/2 hours and the pain is creeping up.  It was then we were informed, "Oh no, his schedule was changed."  And again, I REALLY lost it.  Pain management is something I do understand and I understand it well.  You can't heal when your body is fighting severe pain.  He's at a 7 and the nurse is telling him she can't do anything for at least another two hours.  Yeah.  Not on my watch.  I demanded to get the on call doctor.  Amazingly, no doctor showed up but the medication did.

I almost laughed in the face of the next doctor who showed up the following day.  He didn't ask me to leave.  Instead, he did a 15 minute discussion on the importance of pain management.  Yeah, thanks.  You just regurgitated everything I was shouting about the night before.  I'm pretty sure I was gracious, but my face may have given away my disdain for his BS.

Yet another evening, I wanted to ask the attending something.  It was rather important and could have had dire consequences.  Among the things they do for pancreatitis is administer insulin.  His was in an IV and required hourly finger sticks to make sure his sugar wasn't too low.  At 8:30, he told the nurse that would be the last finger stick.  She immediately relayed this info to the attending who instructed her to slow the drip to half speed and promised he would be right in to talk to my husband. At 9:30, she did her job.  She approached him with kindness.  "Will you let me check your sugar?"  He was disgusted.  "What part of 'You are not sticking my finger again did you not understand' "  She was the consummate professional.  "I understand.  You do not want me to do this.  Am I correct?  You are refusing the test which is your right."  A simple and quiet, "Yes, I'm refusing the test."

The nurse knew that meant she had to get an order to stop the insulin.  The attending couldn't be bothered.  An hour had already passed from the announcement he would be in shortly to discuss this. In my world, shortly isn't an hour.  At 10:30, the insulin was still dripping,  the numbers in a downward trend.  That was the point when I caught the eye of the attending and asked if I could have a quick word with him.  I wanted the insulin drip stopped.  His reply, "We are in the midst of rounds.  When we are done, I'll send one of my residents in to speak to you."  Oh REALLY.  I sat until 11:30.  There should have been three additional finger sticks done since the insulin drip was still on.  I went out to the nurse and asked her what was happening.

The resident at the desk insisted, no fewer than five times, that she would be happy to go in and wake my husband to talk to him.  This was the first night my husband was able to sleep.  I told her I wanted the insulin stopped.  He refused the necessary monitoring which meant the insulin had to stop.  She refused to stop it without the attending ordering it.  We did a dance for several minutes until the nurse remembered that bill of rights.  She marched into his room and turned the insulin off at my instruction.  They were endangering his well-being by causing a severe sugar drop.  The resident told her she wasn't allowed to do that without a doctor ordering it and she just did it anyway.  Because it was the patient's right to refuse medication.  And he was clear in refusing the test and I made sure it was clear I understood that meant the insulin had to stop.  And the resident finally showed up some time after midnight.  And the attending couldn't be bothered to give me, a mere family member of an ICU patient the time of day.  Really awful.

One of my favorites?  A different set of rounding doctors.  I was in the room and my husband specifically instructed me not to leave his side.  He just wanted a second set of ears.  It wasn't any sort of, "Oh I can't bear to do this alone."  And truthfully, although he does not read this blog, this will be the one lousy post he does read and I don't need him getting 50 Shades of Irritated that I made him seem like a wimp.  So I remain.  And one of the residents motions me to the door.  "You have to leave.  We are going to ask your husband questions that he said he doesn't want you to hear the answers to."  I think I laughed right in her face.  This wasn't 30 seconds after he instructed me to remain bedside.  I told her she was mistaken.

I never start out in bitch mode but let me just say that under these circumstances, the bitch mode was coming quicker and quicker.  She insisted he had secrets.  There are no secrets.  A few days prior, maybe, but all family business was resolved by day three during this ICU debacle.  She persisted.  "He doesn't want you in the room."  And now, I'm in full bitch mode.  "We already established he DOES want me in the room."  She turned and said, "No, HE doesn't want you in the room."  I looked beyond her and is a tone, I said, "WHO is HE?"  as in "who are you referring to...."  I was legitimately confused.  Sleep deprived, running on empty and confused.  She points to the attending.  I wish I had a camera on my face because I know my expression had to be priceless.  My response was abrupt.  "The doctor?  Well that's just too damn bad,"  as I pushed my way passed her to my husband's side.

Then, there are the medical records.  And I'm going to tie this up with a nice neat little bow.  Those medical records are HIS records of his care.  They were supposed to be at the GI doctor's office on Monday afternoon.  Naturally, they never arrived.  I wasted three hours the following day to make sure the records were sent to the GI doctor and the endocrinologist.  And someone in charge of complaints got involved and got an overview of what I've shared here.  They began trying to reach me when I began getting noisy on twitter.  Finally, I was emailed by someone high in the health system.  I responded to the email by sharing that I would be incorporating all of my experiences into a presentation of "What Not To Do When Treating A Hospital Patient."  It was pretty cool that I had the link to that Influential ePatients to include in my email.

Addition to original post. As I was sitting at P4C meeting (see below), this was tweeted out. The cartoon attached depicts precisely what I've described here. Needs no explanation.
I've since received at least three calls from the hospital.  I've returned none.  Instead, I'm at the annual Partnering for Cures Meeting in NYC.  Where patients are treated with respect, are looked upon as equal partners in the decision making process, are incorporated into risk/benefit decision making discussions, are encouraged to be citizen scientists.  Yes, I'm right where I need to be.

And I almost didn't make it.  You see, the discharge from the ICU was on November 1st.  We would up back in the emergency room on Saturday night when the pain was familiar and escalating.  Fortunately, it was a different hospital and most fortunately, they got the pain under control quickly, dialed the diet back to liquids for two days and I'll be a ten minute car ride away should I need to get up in someone's face.  Except, if that happens, I'm dragging a few of the Partnering For Cures people with me.

On twitter, follow the hashtag.  #P4C2014 ...  There are three sessions running simultaneously.  Kills me every time.  At least three of the slots, I NEED to be in every session.  Have we figured out how to clone yet?

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Monday, November 10, 2014


I had every intention of following up 3 Weeks A Fever with a post about my 12 Days of ICU.  I was bedside being dismissed by every doctor as a moron while the patient was on morphine every four hours, incapable of sharing in any sort of decision making.  It's a good story but it will wait for a day or two.

Why?  Melissa Etheridge.  And AARP.  I already blogged about this in June of 2013.  In other words, 18 months ago.  AARP Magazine decided it would be a good idea to get some advice from Melissa so we could follow her lead by sharing those "lessons for all of us."

Wow.  WOW.  I'm dumbfounded.  As I stated in my original post, there isn't a shred of evidence in anything.  I'm disgusted.  Here's a screen grab of the offensive photo along with a link to the article.  I'm not even going to get started on the Beat Cancer thing.  I think we've beaten that to death in October.  Put a third person in that picture and one of them will metastasize but that's a whole other issue.

AARP Magazine is so thrilled with this article which may actually be a great article but seeing this, all credibility is lost and I am throwing out the baby with the bathwater.  I can't read a word of anything that was published by someone who would include this so prominently in the article.  They are so thrilled, their Facebook cover looks like this:

In case you don't feel like clicking back to my original blog post, this is what I had to say in June of 2013, words I still stand beside, with great pride:


I don't know why I'm doing this.  I've already established my issues with celebrities using their voices when it comes to illness.  Their own illness.  To comment on someone else's choice, unless you are a doctor, best left alone.  A simple, "She made the choice that was right for her."  Leave it there.

Yes, we are back on Angelina Jolie and the comments made by Melissa Etheridge stating that the choice made by AJ was not a brave choice.

This is exactly what ME said in her interview with Washington Blade:

"I have to say I feel a little differently. I have that gene mutation too and it’s not something I would believe in for myself. I wouldn’t call it the brave choice. I actually think it’s the most fearful choice you can make when confronting anything with cancer. My belief is that cancer comes from inside you and so much of it has to do with the environment of your body. It’s the stress that will turn that gene on or not. Plenty of people have the gene mutation and everything but it never comes to cancer so I would say to anybody faced with that, that choice is way down the line on the spectrum of what you can do and to really consider the advancements we’ve made in things like nutrition and stress levels. I’ve been cancer free for nine years now and looking back, I completely understand why I got cancer. There was so much acidity in everything. I really encourage people to go a lot longer and further before coming to that conclusion."

Yes, that statement created a media uproar that I missed.  Apparently Brad Pitt made a comment and I have NO idea who else jumped in to the fray.  The follow up comment made by Melissa Etheridge says the following:

"I don't have any opinion of what she 'should have' done. All are free to choose. I only objected to the term 'brave' describing it," Etheridge said in a statement to ABC News. 

That's the end of the war of words.  And here are my observations (did you seriously think I would not express an opinion??).  This has nothing to do with AJ's choice or ME's opinion.  It has to do solely with the statement that is in print for all to see.  My objection isn't over bravery or fear (although I do fall on the bravery side of that equation if you are interested).  I'm not going to comment about whether or not that initial statement confers an opinion on the part of ME (all I'm sayin' is read it carefully and you decide).

Let's be clear.  Melissa Etheridge is a musician.  Angelina Jolie is an actress.  Fans tend to hang on to their words.  As a responsible advocate who understands the importance of evidence based medicine not opinions or things that seem likely, I am going to address the comment.

  •  "My belief is that cancer comes from inside you and so much of it has to do with the environment of your body"  (Yes, I agree-tumor microenvironment or as Dr. Love says, "the neighborhood")
  • "It’s the stress that will turn that gene on or not." (ABSOLUTELY NOT TRUE not matter how much you may think this is the case, there is no evidence to support such a statement although the importance of reducing stress can not be understated for plenty of reasons.  Activating a mutated BRCA gene to turn on is NOT one of them.)
  • "Plenty of people have the gene mutation and everything but it never comes to cancer so I would say to anybody faced with that, that choice is way down the line on the spectrum of what you can do" (GROSS MISREPRESENTATION of the very real risks associated with a BRCA mutated gene.  The risk in the general population is 1 in 8 at age 70.  BRCA mutated patients?  6 in 10 [and earlier onset?].  In other words, the risk is five times greater in patients with BRCA mutations.)
  • "and to really consider the advancements we’ve made in things like nutrition and stress levels."  (Stress, previously discussed.  Nutrition?  This is sounding like the blame game.  There is NOTHING we can do to eliminate risk through nutrition or by avoiding potential environmental factors that may be within our control, like for example, moving far from a city where the air is less polluted. These measures will only reduce the risk by a very small percentage.  I have many things swirling in my head regarding numbers so I'm going on the high side. I think we are in control of perhaps 30% of our cancer risk across ALL cancers through behavior modifications. The rest?  A crap shoot.  And not with such great odds if you happen to have a mutated gene.  And medical advances, treatment options, chances of metastases... not much has changed in decades.)
  • "I’ve been cancer free for nine years now and looking backI completely understand why I got cancer." (Really???? Did she REALLY SAY THAT????  Yes, she did.  I'm fairly certain her understanding would be appreciated by the thousands of researchers who have yet to crack that code.)
  • "I really encourage people to go a lot longer and further before coming to that conclusion."  (No.  What you should be doing is encouraging people to do their homework and make the choice that is right for them.  This sounds like she may not be telling AJ what she should have done as she states in her rebuttal comment, but she IS telling the rest of us what she thinks WE should do.)
And, if you make the same decision as AJ, you will be doing so because you made the most fearful choice, not the brave choice.  I suppose I am a big coward, but I can assure you, I made my fearful choice based upon lots of thought, lots of questions and lots of research.  I found my notes from 2006 when I was looking for the copies of my BRCA results that I'm submitting (along with my saliva) to a researcher as part of a clinical study.  I think they were pretty good questions for someone who didn't know a damn thing about breast cancer aside from the fact that my mom was treated in 1987 and it sucked.  I was an e-Patient before I knew what that even meant.  Engaged, Empowered.  What I'd call the choice? AGONIZING.  And, obviously, well thought out and INFORMED.  And No One Else's Business.  And this is why celebrities should keep their opinions to themselves.

The End.

Note to ME:  Stick to the guitar and leave the science to those who know about science.  

Note to AARP:  How could you?  Celebrities are entertainers.  To dispense of advice that flies in the face of anything resembling evidence based anything is extremely irresponsible journalism.  In my opinion.

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Monday, October 20, 2014


This adventure began last December.  Technically, it began in April of 2006 when I was diagnosed with osteopenia.  I had my very first bone density test on the same day I had the mammography which would reveal a density that was playing hide and seek from two different radiologists.  In a way, that day was the beginning of everything.

I discussed the bone issues with my ob/gyn at the same time she was reordering new tests because the radiologist wanted to do a sonogram of one area and magnified images in another.  He needed a prescription despite the fact that his astute eyes realized there were questionable images on my mammography when compared to the films from the year before.  Since a radiologist is a medical doctor, I'm a bit confused about the need for a second prescription.  Technically, isn't this like a referral to a specialist?

Once the hand off is made, the specialist makes the calls relevant to the care they are delivering.  Not so with radiologists. They still need permission to care for you after your initial visit.  They are trained and accredited to read imaging.  If something is not right, why would they need to confer with a non-specialist about their area of expertise?  Radiologists may be the Rodney Dangerfields of the medical profession.  Only a notch above pathologists, who, when you come down to it, belong at the top of the heap.

Particularly when cancer might be suspected, these doctors are the ones that identify and provide specifics.  They are the diagnosticians.  They are seriously important players.  They are giving your clinician the information upon which your treatment will be determined.  And yet, they are seriously under appreciated or at the very least, not given a second thought by most of us.

And that osteopenia?  We were slated to have a conversation until cancer took center stage and the conversation fell by the wayside until December of 2013.  I have had three subsequent bone density tests.  Each test worse than the one prior which came as no surprise to anyone.  Femara, along with other aromitase inhibitors, wreaks havoc on the bones.  Tamoxifen, in contract, actually strengthens bones but I was more fearful of the uterine issues associated with tamoxifen so I used my chemo-induced menopause, added an oopherectomy as the check-mate and went straight on femara.

I was faithful about my daily calcium and vitamin D supplements.  I continued to do weight bearing exercise.  Bones continued to deteriorate.  I stopped taking the calcium (I still take vitamin D) when the results of bone density number 4 returned ongoing bone loss.  Four months later, when my blood was drawn, my calcium levels were basically unchanged over a seven year period.  After carefully reviewing all of my blood work, I decided that I was going to stop wasting money on the calcium pills.  I probably should have waited to discuss this with the doctor but it was a supplement, not a prescribed medication.  Give me enough time and I'll rationalize any decision I make, no matter how dumb it might be.

Prior to December of 2013, I discussed adding a drug like Boniva with my doctor.  I determined I was not adding yet another medication to my daily repertoire.  So what happened in December of 2013?  There was a study presented at the San Antonio Breast Cancer Symposium.  The study included the use of an intravenous bisphosphonate with an estrogen suppressant after the conclusion of chemotherapy in early stage breast cancer patients.  It seemed there was a benefit in the reduction of the incidence of bone metastases in those patients who were treated with zoledronic acid.  Getting all technical.....  Boniva is an oral bisphosphonate, zoledronic acid is an intravenous bisphosphonate, brand names Zomeda or Reclast.

Hmmmmm.  Maybe it would be worth treating the osteopenia with an IV infusion.  I might be giving myself an bit of an edge against bone mets.  MIGHT is the operative word in that sentence.  The women in the study were treated immediately upon completion of chemotherapy.  I was six and a half years post chemo.  Thus, I can't stress this point strongly enough.  The study results did not apply to me.  I hijacked my mom's oncology appointment in December.  Technically, she hijacked it on my behalf.  When our doctor asked her if she had any other questions, she quickly replied, "I don't, but she does."

We began discussing that study and then my ongoing bone loss.  He was ready to write a prescription for Fosamax or Boniva. I told him I wanted the infusion.  I went through my reasoning.  He agreed it would be an acceptable solution to treat the osteopenia and we both agreed there was no science to back the idea that I was doing anything to reduce risk of bone metastasis.  But still.  In my mind, strong bones, sans any nooks and crannies for a dormant cell to hide out, I was helping prevent a dormant cell from going rogue.  Again, without any basis in science, coming from someone who is constantly jumping up and down demanding to see the data, my treatment would be for my osteopenia.  PERIOD.

It was December.  I spoke to the PA who would be ordering the treatment.  I told her I discussed it the the oncologist.  She agreed it would be an appropriate course of treatment for my bone deterioration which was exacerbated by six years of femara.  My cancer treatment was causing the problem and this is backed by tons of data.  Thus, the cancer doctors should be the ones addressing the problem.  Thanks to my prior health insurer's decision to cancel our small group policy as of December 31, I was busy scrambling to find a suitable replacement policy.  Along with millions of others, getting my ongoing monthly maintenance medications refilled was a challenge.  I had little or no patience to figure out what had to be done to get an IV infusion approved.  I dropped the ball.

In May, at my regularly scheduled appointment with the PA, I brought up the infusion.  She had forgotten about anything we discussed in December.  I can't fault her for that.  She sees many patients.  And this is why being an empowered patient capable of self advocacy is of utmost importance.  I CAN fault her for failing to make ANY notes in my record regarding the fact that she was going to get an okay for the reclast infusion.

What ensued was ugly.  I thought I wrote a blog about it, but I may have just taken that to twitter.  When I brought up the zoledronic acid, we got into it.  She told me I had to fail on a bisphosphonate before they would use injections.  What I realized in the aftermath?  She was NOT listening to me.  I was sticking to the compounds rather than the brand names.  She was using the brands names.  "We can't give you Prolia."  That was followed by a bunch of other things including her rather dismissive statement, "You said he wanted to write you a prescription, no one approved anything, you are searching on the internet."

I'm pretty sure I lost my shit at that statement.  Yes, I'm searching on the internet.  I read peer reviewed journals on the internet.  I read copies of presentations by researchers on the internet.  I communicate with some of the world's most brilliant doctors on the internet.  It wasn't until she said something about denosumab that I realized she wasn't listening from the start.  Then, she suggested she would give me the name of a "lovely rheumatologist" they work with.  "Bones are their specialty."  And once again, I lost my shit.  My voice was definitely elevated.  I pointedly told her I never wanted "prolia" but simply an IV bisphosphonate.  She kept repeating the fact that she would be happy to give me the name of the rheumatologist.  I.Was.Pissed.  I ended that conversation with a sharp tongue.  "I am not going to see another doctor to repair a problem being caused by a medication YOU have prescribed.  We are done.  I will take this up directly with the oncologist."

I sent him an email, my mom saw him the following day and properly remained out of it.  "What is happening with my PA and AnneMarie?"  I had already spoken to the PA.  She called within twelve hours to tell me she put in the order for the infusion. All my mom would say to him, as far as she knew, everything was resolved.  And again, the dropped ball.  This time everything WAS documented and 5 weeks ago, I scheduled the infusion.  I had a blood draw two days prior.  I hydrated.  On September 26th, I was back in the chemo suite for the infusion.  It was a bit surreal.  I took a selfie.  The chemo suite has a wall of windows which is quite soothing.  Makes for lousy backlight.....

One hour after my arrival, I was exiting the building.  I jumped in for a google hang out from my car with Upstate AnnMarie, ran a few errands, and by 2AM, I was shivering so badly, it woke me up.  That was Day One of 3 Weeks A Fever.  A Friday infusion followed by an elevated body temperature hovering slightly above 102 degrees precisely twelve hours later.

I was already aware fever was not an uncommon side effect, but on Day Four, Tuesday morning, I put in a call to the doctor. One of the nurses got on the phone.  "Something else must be going on.  The fever would not last this long, nor would it be that high.  You should go to your PCP, you might have an infection."  The following day, I was at the local medi-center where I was checked for pneumonia, flu, strep, enterovirus and was declared healthy with the exception of some white cells found in a urinalysis.  Out of an abundance of caution, I was put on a ten day regimen of cipro, pending results of a culture.

Less than 48 hours later, I was in the hospital emergency room.  The fever would not break, still hovering in the 101 degree range.  My normal body temperature is 98.2.  At 101, the fever kept me in bed, depleted my energy, caused a complete loss of appetite.  I could not get past the guards to the triage nurse without answering one very important question.  Was I out of the country within the past month, and specifically had I been in Africa?  The ER was a zoo and it took at least three hours before I would even SEE the triage nurse.

At 6:10, I told my mom and my husband that I was leaving.  I wanted to go home and go back to bed.  This was exhausting and no one was doing anything.  I was placated.  "If someone isn't in to see you in 20 minutes, we will leave."  I glanced at the clock on the wall.  "Fine.  6:30 and we are out of here."  I suspect he went out to announce I would be leaving because there were nurses and technicians at my bedside within two minutes of that announcement.

I fought with the hospital technician who insisted it was necessary to do another chest x-ray.  I had the disk from the x-ray taken 48 hours prior which he deemed would likely "not be acceptable" to the doctor at the hospital.  My patience level was non-existent.  After a debate that lasted several questions too long, I told the technician not to ask again and to have the doctor come and discuss the need for additional radiation.  If they wanted to do any further imaging, I needed a good damn reason and it most certainly would be something more along the lines of a low dose CT scan or nothing at all.

The hospital drew several vials of blood.  In fact, in my entire life, I've never had so much blood taken in one draw.  They needed to do two sticks to make sure the blood that would be sent for culture was not contaminated in any way by the workup for which we would have quick results.  They did an EKG.  I was given IV fluids.  And no diagnosis.  "Just some wacky virus." Frankly, my biggest concern was my kidney function.  I knew it was rare, but the medication could cause issues with kidney failure.  When all the labs came back normal and the only issues were the tests that related to my thalassemia, my mind was put to rest.

Where I disagreed?  The ongoing insistence by the nurses, the medi-center and the hospital about this "wacky virus."  I don't believe in coincidences and I don't believe that 12 hours after an infusion, I somehow developed a "wacky virus" that had nothing to do with the Reclast.  I found some information in a few forums about the side effects of Reclast including a few mentions of the lingering fever.  I was emailed by an angel who described what happened to her and it was nearly identical to my experience.  Still.  I wanted evidence.  Data.  Hard-core science.

Enter, Cliff Leaf.  We had been trying to arrange a face to face meeting and when I finally felt well enough, I began to go through a bunch of unanswered email messages.  I sent Cliff a message to see when/if we might be able to set up some time for lunch or coffee.  I told him what was happening and in his reply, he attached copies of that hard core science I was seeking.  That led me to a second paper, which, thankfully, was not behind a paywall.  Turns out the Reclast causes inflammation in certain biomarkers (cell proteins) and this could cause fever spikes.

The study I found was the absolute gold standard.  Double blind, placebo controlled population matched.  In the land of research, it doesn't get much better or much more definitive.  Without going into all sorts of science that I understand after reading it but would be completely incapable of recanting, it comes down to this.  The last sentence in the study which was published online on November 30, 2010:

Based on those data, we encourage clinicians to consider the use of acetaminophen 650 mg. four times daily for 3 days for the reduction of post-dose symptoms following zoledronic acid infusions.

The data is strong.  The number of patients who used tylenol and experienced fever of 102 (so much for the initial info from the nurse about "not that high") was less than HALF of those who were treated with placebo.

Instead of 3 Weeks A Fever, this should have been 3 Days Take Tylenol.  And yes, the paper has been printed and highlighted and will be brought to the doctor so they might think about incorporating this into their standard of care, particularly with the first infusion.

One final note:  If you've tried to contact me without success, now you know why.  And it was pretty upsetting to have to pass on some of the events I'd hope to attend over these past three weeks.  I'm still weak but at least I have answers.  And I'm once again, forever indebted to Clifton Leaf for his sage wisdom and never ending well of information.  And once again, I've learned the importance of being my own very best advocate.  With a little help from lots of friends.    

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