Thursday, March 26, 2015


There is a breast cancer trial that is recruiting right now for a new targeted therapy. You may be eligible to participate or you may know someone who is eligible. We all benefit from this so I’m asking this be shared in as many places as possible, especially in groups where there is a large population of people with advanced or metastatic breast cancer.

Afraid of participating in a clinical trial. Worried about that lab rat thing? Please click over to this post for a basic rundown. I'll just say this. When anything other than cells in a dish are involved, protection of humans and animals is taken quite seriously. There are rules in place for the real rats. Seriously.

Do you fit the profile for this trial? Here’s the checklist:
  • Are you post-menopausal? It doesn’t matter if it happened naturally, surgically or through ovarian suppression.
  • Has your cancer spread outside of your breast?
  • Is your cancer ER+ or PR+ (either one will do)?
  • HER2 negative? 
  • Have you done only one line of endocrine treatment since the disease metastasized? In English, did you take tamoxifen or femara or arimidex and only one!

All yes responses to that group? Let’s continue. (Yes responses to these questions will likely result in being ineligible.)
  • Have you been treated with chemotherapy since your metastasis? If so, you may not be eligible but definitely check with the researchers.
  •  Have you already been treated with fulvestrant (Faslodex) or everolimus (Afinitor)? If so, unfortunately, you will not be eligible for this particular trial.
  • Has your cancer spread to your central nervous system (i.e. brain mets)?
  • Do you have inflammatory breast cancer?
  • Inflammatory breast cancer patients or those whose disease has metastasized to the central nervous system, this trial isn't for you. We'll find others.

There are obviously many other items that will determine inclusion/exclusion but those are the ones that jumped off the page for me.

A little about the trial and what to expect:
  • The length of time for participation is 36 weeks.
  • You will need to be at the test site for approximately 15 visits. This is a multi-center trial. A list of locations is included in the eligibility link below.
  • In the beginning the visits will be frequent and then taper off.
  • There is no cost to you to obtain the drug or any of the testing.
  • Travel may be reimbursed.
  • You will be randomly assigned to receive the real medication or a placebo.
  • All participants will be treated with fulvestrant which is currently one of the standards of care for metastatic disease. My mom is already on fulvestrant but was ready to step right up until I told her she wasn't eligible.
  • The purpose of this trial is to determine if combination therapy of the fulvestrant and the investigational drug is better than fulvestrant alone.
  • THIS IS THE MOST IMPORTANT PART OF THE POST: You can read more about the study on Trial Reach where there is a link to the complete study information on

Why do this? You may be helping yourself. And who knows, this might be the next big thing and you may be part of something that help us finally turn a corner. I’ve participated in a number of trials and I wouldn’t hesitate to join another. I hope you feel the same way. Without us, there will be no advances. Having a trial not meet accrual goals in an expeditious fashion is a waste of precious resources. Closing promising trials because goals are not met is a story for another day. But, it does, indeed happen. And the reason?

Primarily because we simply don’t know we are needed.

Now, you know.

Please do share this! It's important. Lives depend on it.

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Wednesday, March 25, 2015


Clinical trials save lives.

Research is where the answers lie.

Without research, there are no clinical trials.

Without clinical trials, people do and will continue to die.

Without people, trials can not take place.

So the real question is this. Have you stepped up?

Too many people equate participation in clinical trials with being a lab rat. Let's take a moment to dispel some myths or clarify some facts. First the basics.

The very first basic simple truth: Navigating can be extremely frustrating, even to the most seasoned doctors. Since the very first step is knowing where to look for these things, there are platforms out there to help make the process easier. Social media is changing the way researchers and participants connect. We should be doing this faster, better and more efficiently.

Now some background and general facts.

Clinical trails must adhere to the highest standards to protect trial participants. There are laws in place to ensure the risk associated with any research is no greater than the normal risks inherent in every day living.

When you make a choice to participate in a clinical trial, first and foremost, you will always receive the best evidence-based medical care currently approved and being used to treat the condition or disease being studied.

With those two things in mind, yes, there are risks associated with clinical trials but any new medication that is granted approval to proceed to human testing has already undergone rigorous studies in a petrie dish, on a lab slide and generally, in animal studies. Only after the safety has been established throughout that process, can a drug proceed to trials using real people. Human clinical trials run in phases, too. For this conversation, let’s focus on the last leg of the human trials, the Phase III trial.

By the time a drug is approved for phase III trials, the researchers have already determined its safety, identified most of the short term side effects and it’s already shown the new drug or drug combination may be more beneficial than the current standard of care. And that’s the biggest and most important reason to consider joining a trial for which you may be eligible.

I wish that I had paid more attention to this when I was diagnosed with invasive breast cancer. I know there are trials I would have sought to join. The thing is, the guidelines are set in stone and if you choose a treatment before knowing all of the available options, you can’t unring the bell. You may have excluded yourself from being among the first to gain access to a drug that could take years to become available to the rest of us. The process from trial to results to publication to approval is long.

Few of us are told to look at clinical trials as our best first choice for treatment and when we are diagnosed with a serious disease like cancer, the knee jerk reaction? Get.It.Out. Preferably yesterday. For those whose disease has spread, the sense of urgency takes an exponential leap. And this is the moment to stop. Breathe. Explore every option. And then make a decision.

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Tuesday, March 24, 2015


They say a picture is worth 1000 words.

This picture is worth a million laughs. It's Upstate/Downstate. The two Ann(e)Marie's. We had a great time bringing the patient voice to LyfeBulb Social Club event.

LyfeBulb isn't just about cancer. It's about many chronic conditions and illnesses.

Tuesday night it was about supportive care therapies and the therapies available to improve the quality of life for cancer patients. Before, during and beyond, supportive care is an essential element for everyone affected by the words, "You have cancer," whether spoken to you or to a loved one. Being thrust into the unenviable role of caregiver is hard. Watching from the sidelines is hard. I know. I've worn both hats. Finding proper support should not be hard.

Upstate was invited to speak. At some point, she had me tag along. I was her sidekick. And then I was at her side sharing my thoughts about the importance of support, especially for those with metastatic disease.

What a great evening. What an honor to share the stage with her and what a great time we had at Swing 46. Since I don't want to leave anyone out, since I enjoyed the company of every single person I spent even five minutes with, I'll let Upstate share the names of those who were at the event.

And I'll just say that this selfie was long overdue!!

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Friday, March 20, 2015


So, what's a Thunderclap. It's a social media blitz. What exactly are you joining? You aren't joining anything. You are quite simply clicking on that little button that says "Join This Thunderclap" so your voice may be heard.

The power of social media is to amplify a message. Both twitter and Facebook track those little thingees known as hashtags (which still remind me of tic tac toe boards). If the hashtag happens to be used enough, it's "trending." Now, I can still recall hearing someone on a TV show say something about some trending nonsense and I had NO clue what it meant. Now, I know.

When big news happens, want to know what's going on in real time? RUN to twitter. Do not pass go, do not collect $200. And do not end up in twitter jail (for my tweeps who overblitz twitter). Trending is what happens when lots and lots AND lots more people are talking about the same thing. There's a list on the side of the screen that shows "trending" topics.

So now you joined the Thunderclap. What will happen? At precisely 3PM on April 8th, when METAvivor is having their kickoff party in Annapolis, everyone who "joined" the thunderclap will have a message sent from their twitter or Facebook account at the exact same time. The brains behind Thunderclap will send the tweet or post to Facebook.

I get it. Some of you are sketchy about allowing others to post to your timelines. This is a one shot deal. They only post if you join. They only post one time. And they only post to the specific thunderclap you joined. They aren't posting every time someone decides to create a thunderclap.

You are not giving up your password. They aren't getting your personal information. It's just a way of having the #C2C4MBC hashtag hit twitter with such force that we may get it trending for a couple of moments. And maybe, a few people will look and say, "Hey, what's that thing?" And then, maybe METAvivor will pick up a few more supporters.

So, whaddaya say? Join the thunderclap? If 250 people don't join, they don't send any of the tweets or posts. Considering the amount of people on twitter and Facebook who are supporting METAvivor, surely we can exceed my 250 person goal by hundreds!

Questions? Feel free to ask away and I'll be happy to answer. Understand already? Then click the button and let's get this party started. OH, and if you happen to have both a twitter and a FB account. You can support in both places. And I think it counts for two since it's posting in two places.

Get going... click here, it will take you to the page and then click, click and done.
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Tuesday, March 3, 2015


Because so many participated in yesterday's ‪#‎metsmonday‬ blitz, and so many created art work, I created a Pinterest board. I want it to be a group board and am happy to add anyone who wants to pin their creations to the board. A few rules:
  • No bashing of any organizations. (There are no shortage of other boards for that.) We have to keep the message on point to make our point. Although some organizations have a very full pots of gold, the problem has to be fixed at the grass roots level. We let others know what's really happening with the money and with the real facts, we let others decide for themselves how they wish to proceed.
  • I'm not a pinterest geek. If you have your own board, I don't know if you can repin to the board I created or if I have to repin. Either way, I'm happy to invite anyone to the board if they share their email address. Once added, you have full access to the board. I want to make sure proper credit goes to the artists since I can barely draw a stick figure and am awestruck by the artists of the world. PLUS, it's an easy place to share to FB and twitter and add your own commentary, with a hashtag! Pictures in tweets attract more people. It's my way of putting as much as possible in one place to make it as easy as possible for people to get involved. To educate. To change the conversation.
  • If there are photos of people you are honoring, you are welcome to include those as well.
  • #MetsMonday has been a push by my friend Nancy Stordahl which she has been promoting for quite some time. It was picked up by UpstateAnnMarie aka Stupid Dumb Breast Cancer who is positively tenacious in doing several Mets awareness posts every Monday (and pretty much every day after that, too)....
  • The 3/2 event was the brainchild of Beth Fairchild. A HUGE shoutout to Dr. Deanna J. Attai for changing the topic of last night's BCSM Community tweet chat to make sure we kept the momentum going. Seeing just one person post on the event page, STOMP OUT BC #Metsmonday #BCKills #dontignorestageiv, "I had no idea" made the whole thing worth it. The reach of just the #MetsMonday hashtag was tracked by symplur and the numbers are pretty impressive. Bear in mind, this was only twitter and only that one hashtag. We were using three. Next time, I'd suggest we stick to one!

THIS is how we change things. By educating others we build strength in numbers. The breast cancer community by and large is fractured. Everyone is screaming over one another. Instead of listening to other points of view, we make it our mission to prepare our come-back instead of actually hearing what the other is saying.
Breast cancer is not the shopping disease (thanks again, Nancy S) and it's not a reason for a Pink Party as I experienced at American Airlines LaGuardia Airport terminal one Saturday in October a few years ago (and to their credit, AA did respond to my twitter message to let me know they would make sure the staff at the terminal would be more conscious of the feelings of all... ).
Lastly, Stage IV cancer is the deadliest form of most cancers. With few exceptions, very few exceptions, this transcends the organ where the disease first presented itself. Once it's out, it wreaks havoc. This pinterest board and our support for metastatic cancer goes beyond the breast cancer community. I invite anyone with Stage IV disease or those supporting research for Stage IV disease funding to share their pictures. Let the entire cancer community come together on this one. We are researching on the molecular level. The cell changes in a metastatic breast cancer may be similar to those, for example, seen in AGAIN for EXAMPLE (I don't know where the crossovers are yet), in lung cancer or melanoma.
So, it's about ALL Stage IV disease. As I said yesterday, we speak of disparities when it comes to disease and those disparities are of utmost importance. Having said that and without taking anything away from the minority populations which are underserved, the bottom line for me?
The most underserved population in the breast cancer community which is where much of my cancer knowledge lies, is not based on race or ethnicity, it's based upon stage of disease.
The amount of research dollars dedicated to Stage IV research, not preventing Stage IV disease, but actual research that will stop disease progression once is has progressed to the liver or the lungs or the brain or the bones or, as is the case with lobular breast cancer, in the abdominal/ovarian area, is sinful. METAvivor Research and Support Inc. calculates that 2% of all cancer research funding is the amount devoted to studying metastatic disease across all cancers. That's where the change must take place and that's what #MetsMonday is all about.
We have 52 opportunities each year to make some Monday noise. We don't need to have a blitz every Monday although a few a year would be good, but be do need to be mindful.
Each Monday, if everyone on Facebook or on twitter or wherever you reside beyond the screen, posts a little something and we stick with one hashtag (I'd suggest #MetsMonday to be inclusive of all cancers) and then add whatever others you like, we can make a difference. I have to believe that or it's time for me to hang up my advocate hat and do something else!
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Monday, March 2, 2015


It's a hashtag blitz. The credit for this belongs to Beth Fairchild. And my thanks go to Lori Dorn for putting it on her FB timeline.

Beth decided to use Monday, March 2 to stomp out breast cancer. #metsmonday which was started by Nancy of Nancy's Point and then heavily promoted by upstate AnnMarie of Stupid Dumb Breast Cancer, is one of the hashtags she suggests we use for what she refers to as a Pink Out. I like it. #PinkOut.

No matter where you spend your social media time, the goal is to get people talking about the only breast cancer that kills. Metastatic breast cancer. To get the facts out regarding the reality of the disease and the lack of of funding for research that will save the lives of those living with metastatic breast cancer. Their stories are the ones that sully the pink ribbon feel good stories. And their outcome hasn't budged since forever.

And so, today, we #PinkOut by using hashtags on Twitter, Facebook and Instagram. If your thing is Facebook, they track hashtags, too. So include it anything you decide to post. Start with links to METAvivor.  Here's their video. And use these hashtags:


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