I LIKE THE "C" WORDS

Not THAT "C" word. Get your head in the game or more appropriately, get out of MY head where these words and phrases may sometimes reside.

As we bid a fond farewell to 2012, some have said this year can't end quickly enough.  On many levels, I concur.  On others, not so much.

2012 may have been THE single most life altering year I've ever experienced.  I am forever changed and it's all happened over these past twelve months.  What started as a joke, my silly little blog, has taken me places I could never have imagined.  My life is enriched in ways I can't possibly describe because of relationships that I cherish and I treasure.  To think many of these friendships were non-existent at the end of 2011 truly boggles my mind.

I find myself looking back.  What were my hopes?  Did I have goals?  Did I even SET goals?  I'm too damn old for goals.......Many conversations starting today and going into next week will include that question:  "So, did you make any New Year's resolutions?"  And I find myself with my typical reply, "I don't do resolutions."  I won't finish the thought aloud, but in my head, I'm saying, "I see them as a set up for failure."

I will do this.

I am going to do that.

I won't do the other thing.

All of that is just too damn restrictive and life shouldn't come with those kinds of restrictions.

For me, it's not about resolutions but rather, it's about finding ways I want to live.  Last year, I followed the lead of Phillipa, The Feisty Blue Gecko in Yangon.  In a beautifully written post: Three Words To Guide And Inspire Us, she shares how she starts each year.

For 2011, I wanted to be Calm, Centered AND Rebellious.  I like the "C" words and apparently, I also like having to do battle within my own head.  How can one person be both calm and rebellious?  To rebel is to resist authority.  I think the only way to buck the trend, to be successfully rebellious, a calm approach is essential.  We can be passionate, we can wear our emotions on our sleeves, we can humanize what we are trying to change, and, we can still do that calmly.

It wasn't really a battle in my own head.  It was simply speaking in ways that others might hear.  The very brilliant Lisa Bonchek Adams captured the essence of respectful and effective communication.  This is the way things might begin to change:

"Try to express difference of opinion with diplomacy and disagree with respect."

We have much work to do.  Many have died.  It seems these past six weeks have been one episode of bad news followed by another.  Barb's mets diagnosis, Lisa's mets diagnosis, so many more of the mets patients struggling through debilitating side effects or treatments that are no longer working, it's coming in waves.  We need a revolutionary break through and we need it NOW.

I am not going to replace my 2011 words.  I am going to build upon them.  I must stay rebellious and push for the right research.  This year, I am going to work toward encouraging better connections among all the players.  If everyone is seated at the same table from the very beginning, we will have an opportunity for truly collaborative and cohesive efforts.

Calmly connecting the players to stay centered and focused will create an environment of collaboration and cohesiveness and THAT is the way toward meaningful change.

That is what we call a successful rebellion and THAT is why I like the "C" Words.

And now, my three words have grown to six, or perhaps I've been rebellious and now there are seven.......

2012, I bid you adieu......

Bienvenue 2013!

RIP TIFFANY. QUITE SIMPLY: UNACCEPTABLE

Last week, in the commotion leading up to Christmas, my mom stunned me with bad news.  A young woman named Tiffany Costa died.  She was diagnosed with breast cancer in 2002.  At 29 years old.  Stage II.  She died two weeks ago.  She was metastatic for many years.

Tiffany's extended family members are dear friends of my mom.  I came to "meet" Tiffany because of an email mom forwarded to me.  She was being treated with Doxil.  There was (and it would appear there still IS) a shortage of Doxil and she was trying to raise money to have the drugs brought into this country from Europe.  The cost was exorbitant.  I remember reading the email and I recall thinking that it was disgraceful.  A drug that was keeping Tiffany alive was being rationed out.  Gasoline, I get.  Life saving medications in an environment where, "If it works, keep doing things exactly the same....With No Deviation--NOT in the amount and NOT in the schedule," quite simply: UNACCEPTABLE.

When my mom told me Tiffany died, I immediately remembered her problem getting medication.  I went on my bully pulpit warpath.  "Did something happen with the drug supply?"  Mom knew I was ready to (her words to Tiffany's aunt when she asked) "Storm Washington DC or something, she's PISSED."  As it turns out, she never had a lapse in treatment.  Hers was another case of metastatic disease that stopped responding to the present treatment and there were no more tools in the drug tool box.  End of the line.  To reiterate.  Quite simply:  UNACCEPTABLE.

Tiffany and I communicated via email and on social media.  She was filled with life, she was irreverent, she was fine and then, at the end of August, she disappeared from twitter.  It fits with the timeline I was given by my mom.  I am deeply saddened by her death.  It reminds me of much.

• We must find treatments for the metastatic patients and they MUST be treatments that do not mess the quality of their lives and the MUST buy them years and years..... so that their deaths are of anything... just NOT breast cancer or the ensuing fallout from the toxic treatment. 
• We must find treatments for those of us who've already been diagnosed and living in the land of NED (no evidence of disease).  How can we make NED a permanent place in which to reside?
• We MUST find ways to prevent those who have never had breast cancer from ever getting the disease in the first place.  I have read some of the grumblings of those who call Deadline 2020 a pipe dream and I respectfully DISAGREE.

Those are things that require research.  And more research.  And we have too far to go.

Then, we have the practical things.  Things that are solvable problems.  This relates to that aforementioned drug shortage. It's headlines again and it's quite disheartening.  I blogged about this in August of 2011.  I was new at this blogging gig and I was a total ignoramus where twitter was concerned.  No Joking Matter, Chemo Drugs Are in Short Supply? was my entry on August 19.  Then, on November 16 (last year), I was OUTRAGED about some of the wording used to explain the reasons behind this ongoing Drug Shortage.

Today, my blood is boiling.  We've watched in horror as the angelic faces of twenty young children flashed on our television screens.  We should be equally horrified by what I read in the New England Journal of Medicine and in an NPR story about the treatment of CURABLE childhood cancers; specifically, lymphoma.

The NEJM article is titled The Impact of Drug Shortages of Children With Cancer and in part, it says:

Almost 80% of children and adolescents with cancer can be cured with current therapy. Most of the curative treatment regimens are based on chemotherapeutic agents that have been available for decades, but some of these have recently been in short supply. These shortages are likely to have devastating effects on patients with cancer and must be prevented. For many of these agents, no adequate substitute drugs are available. Our results suggest that even promising substitute regimens should be examined carefully before adoption; what might appear to be a suitable alternative regimen may result in an inferior outcome — an intolerable situation for young people with curable diseases.

And NPR:  How A Drug Shortage Hiked Relapse Risks For Lymphoma Patients

Quite simply:  UNACCEPTABLE.

Back to Tiffany....  In February of 2012, she sent this email to her family, who sent it to my mom, who sent it to me and I took it to social media.  

We can't have children being "sacrificed" because of anyone's bottom line and we should NEVER receive emails like this.... not about adults and not about children:

hey guys!

so im in a bit of a situation if you havent heard...theres a national shortage of my chemo, DOXIL. its the ONLY drug thats worked for me and im feeling great & doing so well and i want to keep it that way!!!
i found a way this time to buy 9 viles internationally, but obviously insurance doesnt cover anything not made here. 

BASTARDS.

9 viles =3 treatments for me.

there was a priority list the first time this briefly happened which i was on and it allotted me 7 treatments. ive used them all.

there is a new waiting list but only the people that didnt get on the first one can be on it so that excludes me :(
so, im trying to raise money because its VERY expensive and no one knows when the shortage will be over...days, months, years, never...its unknown.

some my friends have created a fundraising site for me so what im asking is if you all could PREEEETTTTY PLEASE donate if you are able to, then pass the link and info on to your mother father sister brother cousin aunt uncle boyfriend girlfriend in-laws neighbor friend niece nephew co-workers...EVERYONE. id be forever grateful!!

ANY AMOUNT WOULD BE AMAZING!

thanks!

if youre TWEETING im @tiffercosta

PLEASE VISIT, DONATE and PASS IT ALONG!!

XOXO
tiff

I have no ax to grind against Big Pharma.  I understand they are not in the business of philanthropy.  They operate for profit and their profits on their drug patents among other things, are funneled back into research and development.  Yes, people are getting rich and flying in private jets and doing all of that stuff..... That is capitalism and I'm not going to get into a moral, ethical discussion except to ask Big Pharma some relatively simple questions.  Maybe I'm being idealistic and if so, I'm all ears but come to me with solutions.  Suggestions.  I need to understand.  I'd like answers.

If you have the ability to manufacture a drug that is saving lives, can't you divert at least SOME of your resources to see that these shortages are addressed?  Can you guys find a way to work together and address at very least the most critical shortages?  You want to create a feeling of good will?  THIS is your chance.

Because what is happening at this present time?  Quite Simply:  UNACCEPTABLE. 

PEACE AND LOVE TO ALL

I did it!  Gifts are purchased and wrapped.  The tree is up and lighted.  This is the very first year my tree is simply adorned with lights and only lights.  The boxes filled with keepsake ornaments and beautiful red and white ornaments were beside the tree in their protective storage boxes.  I chose lights and joy over stress and ornaments.  I'm happy with the lights and I'm happy with the beautiful star that is perched on the top branch.

Mostly, I'm happy for the gift of family and friends.  And I'm happy for all of you.... each and every one of you who are now such a big part of my life.

Whatever holiday you celebrate or if your choice is to celebrate none, I wish you joy.  I wish you love.  I wish you happiness.  And I thank you for the gift of YOU.

MERRY CHRISTMAS!

FINDING JOY

Progress.  The shopping is finished.  The gifts are all in boxes.  The wrapping paper is in the house.

I can PAY my daughter to wrap the gifts.  She'd do it for nothing, but I'd feel better if I pay her for her time.  Unless the wrapping has some sort of therapeutic effect on me.  I think, however, I'd be better off withOUT a pair of scissors anywhere near me.  

The tree will be decorated.  Lots of lights I will post a picture.  I have NEVER decorated a tree this close to Christmas but there's a first for everything.  It's all good.

I have to run to one store to pick up something that I ordered online.  No waiting, no looking around..... just a simple pick up.  And done.

So yes, despite the confusion and the commotion, there will be a "proper Christmas."  In keeping with the spirit of the season, I wanted to share some of the things that have filled me with joy despite the medical uncertainty swirling around at the moment.  Waiting is awful and having things happen when it's holiday time exacerbates the whole process.  Instead of focusing on the waiting, I'm looking at the joy.  The unexpected.  The random acts of kindness.  The things that cause me to catch my breath in the back of my throat.

In no particular order.....

Except for this in the top spot: Yesterday, I saw someone tweet something about #Fearless Friends with a link to Lori's blog.  My new "system" with the blogs is something I'm still trying to fine tune so I'm missing blog posts.  This had me in tears before I got beyond the third word.  Lori has my back.  And she made that very public in this blog post at Regrounding.

Knowing Barb is still reeling from her recent mets diagnosis and going through the decision making process with regard to treatment AND doing her first treatment, she has the grace to offer me her love and support because of what is going on in my family.  The epitome of selfless.

The note I received to let me know a donation was made in my name to Breast Cancer Action on my birthday last month. Breast Cancer Action cuts right to the heart of things.  I like that.  Lots.  It's the way to shake things up and BE the change. I was floored at the kindness of someone I have yet to meet but someone who means lots to me.  Our schedules seem to clash, but we will make it happen.  Special beyond words.

The comment on this blog about the tweets from San Antonio.  Someone was translating my words to share with a Danish speaking audience.  Humbling in ways I can't begin to describe.

Every single comment on this blog from every single person EVER.  I've been lifted up during some rough moments, particularly over these past few days, I've been validated when I felt something was wrong, I've been given the chance to laugh at myself because I got to see things through your eyes and I've shed plenty of tears.  I owe many of you responses to the recent comments.  Again, I have read each and every word.  Things have been distracting me from giving proper acknowledgement.

I had the chance to be part of a spectacular group of advocates in San Antonio and I still have homework to finish but the experience was transformative.  Ditto the invitation to the Partnering for Cures conference.  Learning.  The joy in the learning.  And a very special dinner one evening with a group of women I know are destined to change the world. 

The opportunities afforded to me by WEGO Health to speak for all of us as they strive to bring patients into every possible discussion.  I was treated respectfully by the audiences I had the privilege of addressing.  My opinions were held in the highest regard. The winds of change are blowing and the patient is becoming increasingly more important in the decisions that will change the face of healthcare.  As we should be.

The honor to volunteer with the DSLRF to promote the Health of Women study and to encourage enrollment in the Love/Avon Army of Women initiative.  I believe in the work of Susan Love and I know she's on the right track.

The joy of spending time with CJ and a chance to METAvivor raise funds in whatever way possible so more money can be provided directly to research for the metastatic patients.  They matter most.  Their lives are on the line.

The twitter love and it IS love.  The community.  The sense of one-ness.  Those who have reached out to lean on me and those very same people who have turned around to hold me up in my own moments.

Those who I have met, and those who I have yet to meet..... all joy.....

Plenty more to say..... this is to be continued....... I've barely scratched the surface......

Stay Tuned.....

GRACE AND GRATITUDE AND THE TREE

I don't know how to even begin to thank the many people both here and on twitter who have reached out to offer me support and love and encouragement.  And, those who have texted and emailed and called, too....

You know what it's like when shit piles up.  Well... that's a pretty good description of what has been going on around here. Mom's PET, my sister's MRI were just the icing on an already piled too high mess of stuff.  Hearing Barb's voice confirming "it's not ovarian cancer, my breast cancer has spread to my ovaries" was the tipping point for the whole mess.  And there's Barb, offering me love and hugs when mom called to let me know the whole "plan" for this biopsy changed.

Of course, I sprang into action and this morning, I am at MSKCC for my annual (I THINK it's annual although it may be a six month thing again) check up with the gyn oncologist.  I am prepared to get a "we need to redo" something in the days ahead.  I swear, I won't freak.

My priorities are all straight.  I can't do a damn thing.  I'm sticking with my ever famous mantra.

"There's nothing to talk about until there is something to talk about."

Thanks, Ann But Doctor I Hate Pink for the gentle reminder in a wonderfully written comment she left yesterday.

Great suggestion, too..... about the Christmas tree.......  Here's the ever so lovely photograph... the tree is crooked, nary a light to be found BUT, with good reason.  I was busy doing some shopping.  I can internet shop 24/7 but if I need a department store, I have to schedule my time around THEIR hours.  Today, I will finish the brick and mortar shopping after I leave the doctor's office.  Then, I'll make this tree rival the one in Rock Center.

Unless, of course, I decide to have a PTSD meltdown when I leave that building.

I may forget the holiday shopping in favor of the best retail therapy I can find..... Shoe Shopping..... because I'm with Marilyn on this one....

"Give a girl the right shoes and she can conquer the world."

Fully decorated tree photo to follow shortly.  Meantime, the tree is beautiful.... it just needs a bit of adjusting and lots of lights. Lots and lots of lights......

CAT'S OUT OF THE BAG

I've been talking in riddles over the past few posts and today, I will share in greater detail.

Note:  We are one week from Christmas.  My tree remains undecorated.  Gifts, unpurchased (except for a few things I did online YESTERDAY).  Me, unglued.  Facing a deadline.  A hard deadline.  A fixed date on a calendar.  Yes, there are good reasons and I'm only going to highlight the three that have directly impacted me last week.

I began this blog in July of 2011.  If you blog, you understand what it means to read a comment.  That first comment. Technically, it was the second comment but the comment let me know someone was reading my blog every day.  And, enjoying it.  If I go through my gazillions of email chats between my mentor and me, I am certain I will find an overjoyed email I sent to her when I realized at least one person could relate to this blog.  If you don't blog, Julie and Julia.  The movie.  She captures that first comment experience pretty well.  When it wasn't a comment from her mom.

That's the foundation.  This is going to ramble and wind because I'm on a roller coaster.  Fair warning.  And advance apologies but I just have to get this out......

Many of you are aware of my mom's ongoing PET/CT scans.  It was a lung thing, then it was a lymph node, then, a cracked rib.  Some of you may know I have two sisters.  One of them, cancer.  The other, a biopsy over 3 years ago.  I am the keeper of the pathology reports which I have at my side.  "Hyperplasia bordering on DCIS, wall of blood vessel....." That's the sister without cancer. That's my family.  We are all okay.  Hypervigilant.  But OK.

Last week, my mom and my sister had follow up scans.   Then, there's Barb.  The first comment.  Now, she's my friend Barb.....the first person who let me know she was in my life.... beyond this screen......that I was not simply talking to myself as the words flew off my fingers.

Barb sent me a message that she had to go see her doctor about something that was on a scan.  I was terribly upset when I saw her note.  I asked her to please call me when she got back from the doctor on Wednesday.  Mom's PET scan was Wednesday.  We spoke and I was satisfied things were stable with that "broken rib from a million years ago" as the doctor had not called her.  Imaging is generally an immediate phone call.  Unless, it's not.  So much for the presuming stuff.

Then, I spoke to Barb who DID call me when she got home.  The news didn't sound wonderful, but I was hopeful.  Biopsy was scheduled for Friday.  She promised her husband would text me on Friday to let me know what was happening. That was Wednesday.

Thursday, I still felt lousy from whatever bug drop kicked me with that fever but I can tell you I felt far lousier when I heard from my mom.  "I have to go for a bone biopsy.  The thing on my rib is slightly different."  That was in an email. Why?  So she could "tell" all of us at once.  Even though she knew she'd still have to speak to the five of us.  There would be no pecking order with the phone calls.  Called mom, got all of the info including doctor speak, "I need to know what this is so I can treat it properly."

I'm trying to refrain from making a list of 900 questions because I want it to be nothing.  And, one thing I HAVE learned, don't presume anything.  And, in case I forgot about the presuming stuff, I didn't have to go too far back in time for a reminder.  I'm not going to spin like a top making a list of questions.  He better come out of left field with, "arthritis" .... "You aren't going anywhere for a long time, this is treatable."  I know he's right, but still.... arthritis sounds much better than a bone thing.   And thus ends Thursday.

Friday I got the promised text from Barb's husband to let me know procedure is done, more details later.  The details would come in the form of a phone call from Barb.  Before I spoke to Barb, my sister called.  There was a calcification six months ago.  She wanted it out.  They assured her, "not necessary" and now, "it has to come out, it looks 'coarser'."  I have NO idea what the hell that means but my sister is a smart cookie.  "I'm sure it's got jagged edges and that's what she means."  Bottom line, she needs a surgical biopsy.  In other words, another lumpectomy.  Same breast, same general vicinity of the "bordering on DCIS" from three years prior.  WTF????  SHE started peppering me with questions.  "IF it's something, how long is the recovery."  Once we established she would have "downtime" between "things" if something is "not right" we were able to dispense of that conversation.

Me?  I was/am REELING.  Both of them in operating rooms in MSKCC within the next ten days?  My sister, in an effort to infuse some comic relief (or maybe she was serious) thought she should have them tie the charts together and schedule both of them for the same day.  So I sit in limbo waiting for dates.  Mom did her pre-surgical testing today.  No date yet. My sister has a tentative date of December 26th.  I'll be having a meltdown.  Or not.  I may be relieved that Christmas is 364 days away.  Right now, I just want answers.  Does my sister have cancer so she can join the rest of us with an earlier onset breast cancer?  Does my mom have a cancerous spot on her rib?

And yet.....Friday wasn't quite finished with me.  Barb called when she was on her way home from the hospital and this simply broke my heart.  The only reason I am sharing here is because Barb outed herself on twitter last night.  Monday night.  Tweet chat... and I saw her name and I asked her if she was going to give anyone details of the why she had a bad week.  This is what she said:

Sure @chemobrainfogIt's back... found reoccurance in ovaries and pelvic bone. waiting for treatment plan #bcsm
— Barb Bristow (@BarbBristow) December 18, 2012

From the bottom of MY heart, I want to thank everyone on twitter for immediately jumping in and sending love and support Barb's way.  She's new to twitter so IF you're a twitter person, please follow Barb and be on the lookout for any tweets with that Bat Signal hashtag.

And thank you all for offering your kind words to me because I'm in the middle of a wave of stuff that THINKS it's gonna knock me down.  I may falter, I may fall but I WILL get up. Every. Single. Time.  Just watch.

Everyone who left comments here yesterday, I read them all.... I'm just a bit distracted as you might be able to tell......

And, everyone whose head is spinning because this is possibly the most incoherent gibberish I have ever had the audacity to call a "blogpost"..... apologies.  I can't think straight.  By the same token, I wanted to clarify all the cloak and dagger vagueness that seems to have shrouded every post for almost a week.

FAR WORSE TEARS AND FEARS

Friday morning at 6AM, I posted an entry I called Tears and Fears.  Less than four hours later, the unthinkable.  Those words don't even begin to convey the horror that took place in a small town in Connecticut about ninety minutes and a world away from my own home.

I was waiting for a text message with an "all clear."  I was not paying attention to social media, my news feeds or anything else.  I was in my own bubble.  Waiting.  I did not get the all clear I was hoping to hear.  I got bad news.  Followed by the uncertainty of, "I need further testing" from still another person.  I will share all when it's appropriate.

Yes, I've added to my list of those for whom I am a Fearless Friend.  I am still waiting, now, not for one biopsy date, but instead for two.  Both of those will be done at MSKCC.  I will be at the hospital for each.  Nothing is scheduled yet.  

I am shedding tears for one and I still live with fears for two others but after watching such sadness, I am at a loss.  The magnitude of such a horrific event has overshadowed everything.  Then, I saw this article written by Dr. Matthew Katz.  He is a radiation oncologist and he is a frequent participant in the Monday night #BCSM tweet chat.  He wrote a thought provoking piece:

"What If We Treated Gun Violence Like Cancer?"

I have no answers to the questions Matt poses.  I can only see the angelic faces of babies.  I hear names followed by the words, "six years old" and I am horrified and heart sick.  I see three young teachers who gave their lives hoping to save the children.  And a young principal, the school psychologist and still another teacher whose lives were taken.  And, a mom.  A young man in New Jersey who reached out on Facebook after he was, for hours, accused of being the killer.  "My mom is dead."

I received an email from someone on Friday.  "One of the teachers is my mentor's daughter."  On twitter, an aunt of one of the little boys was surrounded by a community of love as she waited in Seattle to hear from her sister in law.  Three children attended that school.  The little girls were safely with their mom.  At 4:30, "Still no news."  At 5:30, "He is gone."

I'm certain every one of those adults, despite their own fear...their own absolute terror..... acted fearlessly.  And selflessly.  And they paid the ultimate price.  To be fearless, one must know fear, feel fear, taste fear.  And still, act in ways that defy that fear.  

My heart is broken for those whose hearts will be forever broken.  And my heart is broken for my friend who was told she is now metastatic.  And I move with great trepidation as I wait for these other tests to be completed on two other people.

I'm petrified.  I'm saddened.  But nonetheless, I remain, Fearless.

TEARS AND FEARS

There's no better time for housecleaning than when one is waltzing around with a fever.  Except.  No energy.  And limited brain power, too.

Mostly I've been horizontal for the past two days.  Fever for a day, lethargic for a day and still not right for a day.  Who knows what tomorrow will bring....

A few observations.

This is not the best time of year to be down with a fever.  I have no tree, I have NOT purchased a single gift for anyone. Internet shopping might have been a good idea but......

Being horizontal is not fun.  Unless it is.  In the case of illness, not fun.

That clear liquid thing gets boring as all hell.  Besides, who has an appetite anyway.  But, I must keep the fluids in my body.

I have THINGS to do... besides the impending holiday..... and my mind won't stop taunting me and seeing the piles of paper all around is not helping matters.

Watching the counter on the Health of Women Study spin like a top was gratification even though I have inside info that the folks at the DSLRF coincidentally and unbeknownst to me, had a bit of a blitz yesterday.  Regardless, there are almost THREE THOUSAND more people enrolled.  In 24 hours.  Much as I'd love to credit this blog with a big bump, the "bump" has far more to do with the exceptional efforts of Dr. Love's devoted staff.

So.... I've decided to do a little blogkeeping.  Did you notice anything different?  Deadline 2020 calendar is below the posts. It's not because I don't like them anymore, it's kinda like rearranging furniture.  Time to feng shui the webpage.

Next up and this is taking a long damn time, The Blogroll.  I keep that there because it rearranges when someone posts an update.  It's not helpful to me because it's a distraction.  SO, in the days ahead, there will be a page of the blogs I am following.

Note to blogger:  It would be great if I had the option to make that a "widget" or to switch it to a page.

Note to reader:  You will still see the list IF YOU WANT TO by clicking the "Blogroll" page in the banner.  It's not THERE yet.....

Note to AM:  You will have to remember to check the RSS feed, the blogger dashboard and the wordpress reader to see updates which may prove to be very challenging.

Note to blog writers:  I may have started following your blog via google connect or wordpress OR, if you had an RSS feed, that trumped everything.  It's the easiest way to keep everything in one spot.  I'm halfway down the list.  I have to make sure I get a feed SOMEWHERE and then put the link on the new Blogroll page.  For most, not a big deal.  For me....everytime I open a blog, I never just hit the feed and copy the address.  I meander around your spaces.  Rereading. Instead of walking around in circles I'm doing virtual circles.

And, I have "stuff" on my mind.  Sucky stuff.....  Two days ago, I was walking on sunshine for a bunch of reasons.  Things are happening and they were unexpected surprises.  Surprises like finding out my name was on a government website and it was NOT a TSA watch list for troublemakers. Then, lightning struck.  In rapid succession.  The fever, the messages and the phone.

Whatever your thing is.... send it my way.  I'm a candle lighter.  Some people pray, others not so much but whatever your thing is..... I could use some positive energy sent out into the universe for a few people who are really really important and who are in the limbo-land of scans and tests and biopsies and frankly, I'm REALLY REALLY angry.  I WAS scared but now, I'm just angry as all hell.  Ultimately, I know I will channel the anger for positive change.

First, I have to dry my tears.

And keep the positive energy flowing with the hope that there was never a reason for tears.

Because, there is no crying in activism.

But being fearless?  Plenty of reasons for tears to spill.....

THE ONE WHERE I GET ON A SOAPBOX

Up on a soapbox today.  AS IF I haven't been on a soapbox for the past week, but today, I want to remind those who are following along about the initiatives of the Dr Susan Love Research Foundation.

Are you enrolled in the Army of Women database?  If not, here's the link and I have a question.  Why not?

For two solid weeks my mind has been on research.  Fast tracking research, learning about the studies that are in early phases and most especially, hearing many of the presenters thank the participants.  Heartfelt thanks and acknowledgment. "It would not have been possible without, first and foremost, the women."   

One evening as the assembled panel of experts was helping us understand the earlier presentations, there was an "unfair fight."  One of the researchers does work in mouse models and the others were playfully ganging up on her.  Immediately, however, I thought of Dr. Love.  Animal studies are crucial, but people studies are most important.

Did you know that there are researchers studying the environmental issues and how these toxins might find their way into our breast tissue?  Of course not!  No one can possibly know about every study looking for participants.  I'll bet many of you would have been amenable to joining this study.  It involved the study center sending a kit for urine and saliva samples.  It was for HEALTHY women.  The study is filled.  It took 26 hours to get all of the women needed for the study.

That is the power of the Army of Women.  THAT is what you are "joining."  IF you were a "volunteer" you would have gotten an email explaining what the study was all about, the group of women (and sometimes men) the researchers needed to fill the study and what would be involved if you fit the criteria.  Done.

Three choices in the email.  "No Thank You."  "Yes, I'd like more info." or, "Forward to a friend."  Or, delete the email. Studies are carefully vetted by DSLRF before the email is sent.  They are studies.  NOT clinical drug trials.  Nothing getting put INTO your body.  No more than three emails a month (if that).  Are you in?

The OTHER initiative that we can ALL join?  The Health of Women Study.  Frankly, I'm a bit disappointed!  The study is just shy of 30,000 participants.  I've been trying to get the word out to push the number over the 30K mark for several days. Since I began opening my big mouth a few days ago,  the number only increased by about 25 people.

I get it.  This is a busy time of year.  We are all distracted but this study is open to all.  Women, men, healthy, breast cancer, any.where.in.the.world.

We can all be a part of something that will be game changing.  We need to do something for the metastatic patients ASAP and we MUST be bold and envision a future without breast cancer.  We can do this.

Together.

Yes

We

Can

And I say, Those Who Can, MUST.  Click both links.  GO!

And a little aside..... send good thoughts out into the universe.  Someone who means a tremendous amount to me is having some "things" checked tomorrow.  I need to hear good news.  

TAMOXIFEN FOR TEN? THINK AGAIN .....

Who might Dr. Julie Gralow recommend as "good candidates" for a ten year regiment of tamoxifen?  You'll just have to listen for yourself.  Listen carefully.  Listen closely.  There are plenty of qualifiers in this chat.

For the metastatic patients, the very first part of our chat is about a study that showed some promise in early trials for first line treatment of metastatic disease using a combination therapy.  Again, it's important to note this was a very early trial but it could be a significant building block in developing more effective treatments for metastatic disease.

Before you listen to what Dr. Gralow thinks about all of this from a clinical standpoint, I'd like to share an email I received regarding the ten years on tamoxifen.  There are things that are obvious to most and then, there are those things that, unless they directly impact YOU..... well, they might not even cross your mind.  These are mighty powerful words. Discussion worthy.  Thought provoking.  Heart wrenching.  And why things should not be splashed across the headlines.

You will hear me tell Dr. Gralow that I began getting lots of email and watched the stories hit the news feeds..... These words, written to me, were on my mind.  Julie Gralow's words, spoken for all of us, are featured below.

"In all the ATLAS study coverage I read, reporters only mentioned the results—apparent extra protection against a breast cancer recurrence for women who take tamoxifen for 10 years instead of five years, the current standard of care—as a great thing. Toxic side effects are mentioned as asides, since doctors tend to think tamoxifen’s benefits far outweigh its risks. (My father is a doctor, and when I asked why his colleagues dismiss patient complaints about side effects, which can range from uncomfortable to disabling, he said, “It’s our job to get you from point A to point B.” Fair enough, I guess, but just because women rarely die from the endometrial cancer tamoxifen use can cause doesn’t mean they didn’t have MORE CANCER.)

That about 40 percent of women in the study who were supposed to take tamoxifen for 10 years stopped taking it early, according to the NYT’s story on the study (though my takeaway from the research was that there was about 20 percent noncompliance—not sure which one is correct), suggests that doctors (the ones quoted in newspapers) and patients (the ones who don’t want to die from breast cancer) are not seeing eye to eye on this one, even though their end goals are the same.

That’s not surprising. But I am shocked that I’ve yet to see any mention of one key factor that would discourage younger women from continuing on the drug, especially since study recommendations focus on premenopausal women: Taking tamoxifen for a decade essentially makes childbirth impossible. Women are not supposed to get pregnant on the drug, because it can cause birth defects.

I went on tamoxifen at 26, which puts me on the younger end of young. Many women can still have kids through their early 40s, but being unable to have kids before 36 would curtail my options in a drastic way. Most other “young” women diagnosed with breast cancer are in their 30s, pushing them over the 40 boundary after a 10-year course of tamoxifen. All this while, in real terms, the decrease in mortality from the extra five years worked out to about 2.8 percent. Being alive and living are two different things, and I’m willing to bet that many young women who want to be mothers, be it for the first time or again, will risk the 2.8 percent. I know I would."

That matters.  "Being alive and living are two different things...."   Indeed, they are.  Tamoxifen at 26?  Breast cancer at 26 (or possibly 25)??  It spurs me to work harder, to push for faster results, to be a fierce advocate for change.  This status quo and the same old story just ain't working for me anymore.  My MOM began a long course of tamoxifen in 1988. My MOM is having a PET scan today to follow up on her second diagnosis in 2007.  What has really changed?

And now.... the wisdom and calm of Julie Gralow, bringing the rhetoric down from a fever pitch to a dull roar.

(BREAKING NEWS ....  a little addition to this post because it's relevant.  Last night, I was pointed to cancer.gov by a few people on twitter.  This blog was mentioned, my name is in the article along with some of what I wrote about the hype surrounding this ten year plan.  I'm in an article that is on the government website in the National Cancer Institute bulletin???!?  Last paragraph.  And yes, I'm stunned.  And yes, I've finally been rendered speechless so it's a good thing this post was written before I saw that.  And yes, I'm glad that the article is about the precise thing I had lined up to talk about today.  Maybe there's something to that 12/12/12 thing?)

Back to our regularly scheduled program.... The Interview......

The You Tube link:  http://www.youtube.com/watch?feature=player_embedded&v=WMb4CDjMBmk#!

CHEMOBRAIN: THE OFFICIAL PRESENTATION

Since little was offered in the way of solutions, I am going to pick apart the research that was presented in San Antonio regarding chemobrain.  There is so much to share about what I learned in San Antonio but given the origins of my blogging, this seems the most appropriate place to begin.  After, of course, mets which was yesterdays attempt to get the input of the Stage IV patients and where they stand on fresh tissue donation, if given the opportunity.....

I had the good sense to tape the session on my iPhone.  I can access the slides.  I've listened to the presentation no less than three times hoping to tease out ANY information that might lead to us in a NEW direction.  Instead, it would appear that this presentation, at least in my very un-scientific mind, is nothing more than invalidating, insulting, irresponsible and a precisely WHY patients should be involved in steering at least some of the research.

I'm neither a molecular biologist, immunologist, histologist, or oncologist and I do not proclaim to get the gist of any of that stuff.  At best, I listen and learn from the genius-ologists and I listen carefully.  A true mark of brilliance?  Someone who is so ahead of those curves, yet is still able to take the most complex topic and compare it to something in every day life. Dr. Love is a genius at that stuff.  So were every one of the mentors who sat with us from 5:30 until 7:30 each evening to review all of the presentations.  What was alphabet soup with combinations of numbers and letters being bantered about each and every day, came to life thanks to the dedication of the mentors in those sessions.  I can't thank them, or for that matter, The Alamo Breast Cancer Foundation, enough for helping me be a better advocate.

Back to business.  It's being splashed everywhere.  I wrote this as I was waiting for the presentation to begin.  I had a chance to look at the abstract in advance and I had a pretty good idea of what was about to be presented.  I didn't think it was ethical for me to break into the nitty gritty until the researcher did her presentation.  I'm not a "press person" so I don't know what is proper etiquette and what is Bernstein-Woodward-ish.  So I was cryptic.

Now?  Not so much.

Here are just some of the facts regarding the study particulars:

1. A whopping 97 women were studied in this trial
2. 28 of them were chemotherapy patients
3. 37 of them were radiation only patients
4. 32 of them were healthy
5. The basis of the study is that worry impaired cognitive function, thus increasing fatigue, thus messing up their brains. It was the worry which was "present before the treatment began."
6. The "initial evaluation" in the cancer patients was done approximately 24 days AFTER surgery but prior to the commencement of any other treatment
7. They were all put into an MRI machine and asked to do tasks within that clanking tube
8. Most of the women were treated with anthracyclines

And here are my questions:

• How can any responsible journalist splash a headline based upon the observation of 65 women in a vacuum.  In other words, let's isolate this to fatigue (FYI... I DID type that as Fati QUE.... and if you don't know why that's relevant, go have a laugh at this blog post where one of my bulleted points was the my issue with THAT word. Fatigue....and you know you have chemobrain if.....)
• Nothing was mentioned about the drugs methotrexate or fluorouracil and it was already established in a TWENTY year follow up that the CMF cocktail seems to cause "issues" as seen here at Cancer.Net.  I had CMF.
• Other studies have indicated that the CANCER itself may be releasing proteins/chemicals (not going to go all technical with the terminology) creating additional physiological issues in our brains.  In other words, the cancer cells began to wreak havoc.  The radiation added to it, the endocrine therapy added to that and the chemotherapy is the cherry on top.
• Then there's that whole crossing the blood barrier and actually getting INTO the brain....  Here's what Mark Noble did in Rochester in looking at the CF of the CMF....  BrainFacts.Org
• And what about the "M" you ask?  Here, from Nursing Center Journal:  
  Patients getting chemotherapy drugs known to be toxic to the central nervous system (central neurotoxicity) have a greater incidence of cognitive impairment. Some drugs, such as cytarabine and methotrexate, cause neurotoxicity by crossing the blood-brain barrier and causing direct damage to neurons in the cerebral cortex.

Now to get to the real issue... the reason for the study.  ANXIETY induced fatigue resulting in cognitive issues causes no difference before or after chemotherapy????  Well let's look closer.  Did we examine these cancer patients truly before treatment?  Not really.  Note that the initial evaluations were done almost a month AFTER surgery.  That means, pay attention here folks, this is the important stuff.... these woman already did the runaway train thing.  Bad mammo, call back, biopsy, call back, you have cancer, schedule nine million appointments, decide upon surgery options, stare down the gun of chemo or radiation, learn to live with "I have cancer"  ... and WAIT and WAIT and WAIT some more.

I can still taste the waiting and I can tell you, the waiting was a pretty horrible part of the cancer program.  It's riddled with anxiety.  THEN, for giggles, lets throw ourselves into an MRI tube AND do tasks just because we have nothing else to do..... And, being in an MRI machine isn't stressful all by itself??  And what about the anesthesia.  Are we sure there are no residual effects??  Ditto contrast dye.

Listen, I am all for understanding what is happening.  I'm all for informing patients of the possibility of cognitive issues. I'm all for making sure these patients realize their LIVES are most important and there are work around solutions for many of the problems.  I'm also all for problem solving.  This study didn't add anything to the conversation.  We already accept as a premise that anxiety and depression, fatigue, the cancer diagnosis itself, radiation, chemotherapy, hormone therapy are all part of the chemobrain paradigm.

We didn't really need a study to confirm this.  We needed a study to find ways to prevent it in the future and help those of us whose issues are bad (and somewhat worsening?) ....

THIS folks, is why patients need to be actively involved in what research gets studied.  Did any of us need to see this? Didn't WE all know and accept this already?  Yes, anxiety and fatigue are huge.  All this study did?  Add MORE stress as those headlines continue to pile up and each one of them seems so dismissive.

What was NOT dismissive?  Dr. Patricia Ganz walking up to the microphone to pepper the researcher with questions about the validity of the points in the presentation.  And the researcher acknowledging her own trepidation as she watched "Patti Ganz" (as she called herself) approach the microphone.  Coincidentally, Dr. Ganz presented on Monday in an educational session and she told the whole story and included all factors....

Basically, it's complicated.  And more basically, it's irresponsible journalism.  Major props to Medscape for finally printing THIS which hit my feed yesterday as I was outlining this post.  They tell the whole story.  In case you don't have your own login... it's printed below.  They have peer comments.  I underlined them... Judge for yourselves.  Just note, NO one in this study was given "MF"  and that, quite frankly is all I have to say about THAT.

I've got plenty more to say about the rest, but this rant is over.  I'm feeling a bit like Michael Corleone at the end of the Godfather, don't tell me about my cognitive issues because:

"It insults my intelligence and it makes me very angry."

Before I turn the page over to You Tube and Medscape, one final note:  I'll accept the whole "Cancer Brain" thing as a name changer, game changer, too. Except, there are "levels" to everything in life.  Knowing that the damn M-F (er) wreaked havoc on things inside my skull.....Me?  I'll stick with ChemoBrain... because I WAS fine for a while... and then, I wasn't. And no, I'm NOT tired, my anxiety is well controlled.......EXCEPT when I'm angered by skewed numbers and misleading stories.

Time to turn this over to some third party people.....

Medscape, the only RESPONSIBLE piece of journalism about this study, is below the embedded video.  This would be a good place to share my conversation with Dr. Jay Harness of Breast Cancer Answers while in San Antonio.  We talk about chemobrain and The Jody Study (the one that actually hit the national nightly news.... and JODY is the hero of the piece for truth telling!)

Here's the You Tube link in case the embedded thing doesn't work.  My interview is at the 25 minute mark:

http://www.youtube.com/watch?feature=player_embedded&v=pdDo4tExHkA









And now, with my own skewing of the story... vis-a-vis: the underlined sections, Here's MEDSCAPE:

SAN ANTONIO, Texas — New brain imaging research suggests that "chemo brain" is an inappropriate label for the neurocognitive deficits often reported by cancer patients. That's because reduced brain function caused by fatigue and worry is often present even before chemotherapy begins, according to a new study. However, the research, presented here at the 35th Annual San Antonio Breast Cancer Symposium, was greeted with plenty of criticism.

The lead researcher did not dismiss the concept of chemo brain. "Cognitive changes do occur in women treated with chemotherapy," acknowledged Bernadine Cimprich, PhD, RN, associate professor emeritus at the University of Michigan School of Nursing in Ann Arbor. "But pretreatment-altered neural activation and fatigue can also contribute to cognitive problems," she said during a meeting press conference. "This is a strong argument, in our estimation, for early intervention.... Existing interventions to reduce stress and fatigue may alleviate neurocognitive problems over the course of breast cancer treatment," Dr. Cimprich explained.

The research involved functional magnetic resonance imaging (fMRI) in breast cancer patients performed 24 to 34 days after surgery and before chemotherapy (n = 29) or radiotherapy (n = 37). The control group consisted of 32 age-matched healthy subjects. The prechemotherapy group reported more severe fatigue before treatment than the control and preradiotherapy groups ( P < 0.01); this increased after chemotherapy, but remained stable in the other groups. Dr. Cimprich said the study shows a "moderately strong" correlation between fatigue and cognition in all study participants at baseline and at 5 months ( P < .001). "The lower the level of activation, the greater the increase in fatigue over time....

This was an interesting finding for us; you rarely see a correlation between level of activation and any kind of affective or experiential measure," she noted. Women awaiting chemotherapy are more vulnerable to cognitive problems related to worry and fatigue, and these problems can begin before any adjuvant treatment, she said.

Critics Weigh In Audience member Patricia Ganz, MD, professor of health services and medicine at the University of California, Los Angeles, questioned the study's conclusions. The chemotherapy patients had larger tumors at baseline and had undergone more extensive surgery — both of which can influence cognitive function, said Dr. Ganz. "We know that surgery itself can lead to an increase in proinflammatory cytokines," she explained. "It may be that proinflammatory cytokines, which...are associated with fatigue and cognitive dysfunction, are influencing the underlying biology," she noted. "The chemo patients likely had reconstruction with mastectomy, which causes much more tissue trauma," she told Medscape Medical News. "I am not sure [the researchers] used covariates in the analysis, which could have explained differences in fatigue, and they did not always show P values when they compared groups,” Dr. Ganz added.

Another expert admired the study but also has reservations. "Our field is in need of prospective studies like this, and prospective fMRI studies are especially sparse," Sanne Schagen, PhD, director of psychosocial research and epidemiology at the Netherlands Cancer Institute in Amsterdam, told Medscape Medical News. However, other studies that have reported prechemotherapy cognitive impairment have failed to find a link with fatigue or anxiety, she said, warning against drawing strong conclusions from this study. The researchers conclude that pretreatment cognitive compromise and fatigue are key contributors to the cognitive impact often solely attributed to chemotherapy. However, Dr. Schagen explained that "it is important to realize that the correlations on which these conclusions are based are very weak." "Fatigue may be contributory factor, but to conclude that it is a key contributor is, based on the current data, in my opinion, too strong," she added.

Another breast cancer clinician described the issue as a "multifactorial problem." It's "very interesting" that we see fatigue and cognitive dysfunction in breast cancer patients even before treatment, said Kent Osborne, MD, director of the Dan L. Duncan Cancer Center and the Lester and Sue Smith Breast Center at Baylor College of Medicine in Houston, Texas. "I've often wondered whether some of these cognitive dysfunctions that have been reported with all kinds of different medicines for cancer are as much related to this problem of worry, anxiety, and fatigue as they are to the treatment," he added.

Study Details All of the study participants had noninvasive breast cancer, but more patients in the prechemotherapy group had a higher stage of disease, which is what "you would expect with standard treatment approaches," said Dr. Cimprich. Specifically, stage II and IIIa disease was more common in the prechemotherapy group than in the preradiotherapy group (82% vs 16%); earlier stages were more common in the preradiotherapy group (18% vs 84%). In addition, more women had undergone mastectomy in the prechemotherapy group than in the preradiotherapy group (46% vs 5%), whereas more women had undergone breast-conservation surgery in the preradiotherapy group (54% vs 95%). In the prechemotherapy group, 79% of women received a regimen of doxorubicin and cyclophosphamide followed by docetaxel (AC-T); 18% received a regimen of cyclophosphamide and docetaxel (CT), and 3% received a regimen of doxorubicin and cyclophosphamide (AC).

Brain function was tested while subjects performed a 30-minute verbal working memory task (VWMT) in the scanner. Immediately after that, they were asked to self-report cognitive function (using the Attentional Function Index) and fatigue (using the Functional Assessment of Cancer Therapy-Fatigue). Subjects were tested again 5 months from baseline (about 1 month after the end of chemotherapy). The median age of the patients was 50 to 53 years, and 79% of them were white. Before treatment, all patients were less able than the control subjects to activate the left inferior frontal gyrus — the brain region critical for working memory ( P < .05). "The prechemotherapy group had the lowest level of activation compared to the controls; the preradiotherapy group fell in between," Dr. Cimprich reported.

Before treatment, the patients performed worse than control subjects on the VWMT (error rate, 10.0% vs 6.5%; P < .05). After treatment, cognition improved to the level of the control group in the preradiotherapy group, but the error rate worsened to about 12% in the prechemotherapy group. "Women who were less able to perform this working memory task suffered greater fatigue over time, regardless of treatment," she said. "So this low function before treatment predicted severity of fatigue later on," Dr. Cimprich noted.

The study was funded by the National Institutes of Health and the National Institute of Nursing Research. Dr. Cimprich, Dr. Schagen, and Dr. Ganz have disclosed no relevant financial relationships. Dr. Osborne reports being a consultant/advisor for Genentech, Novartis, and AstraZeneca. 35th Annual San Antonio Breast Cancer Symposium (SABCS): Abstract S6-3. Presented December 7, 2012.

METASTATIC PATIENTS, YOUR THOUGHTS??

I'm back from San Antonio and I expected this first post would be a spin on Tony Bennett leaving his heart in San Francisco.  I left my brain in San Antonio.  My brain remained in Texas and all of my notes are beside me in NY.

I have much to talk about...

Tamoxifen, which I already addressed, will be discussed again.  I have a few other issues that were brought to my attention on that 5 v 10 year debate.  And, I have the video interview with Dr. Julie Gralow which I will share.  Took me over three days to hit the play button as I was certain I looked like a bumbling idiot.

Chemobrain?  I recorded that presentation on my iPhone and I have access to the slides.  I will review it in an attempt to find one single redeeming piece of information in a study that was, in my opinion, a GIGANTIC WASTE of MONEY.  From where we all sit, I'm fairly certain there will be a unanimous consensus that the study was flawed for a whole mess of reasons.  I shall elucidate in a day or two.  And, along those same lines, I'll share another video where I was asked about the REAL chemobrain study.  You know.  The Jody One.  The NBC National Evening News.

Today, I have a question for the metastatic patients.  It comes as a result of a session called Advocates in Action.  The flyer was red.  That would have been enough for me to select that particular event but learning that CJ was going to be on the panel and Dr. Larry Norton was participating, it was a no-brainer.

CJ is one of the founders of Metavivor in case you are just joining me in this blogging adventure.  Larry Norton is a doctor at MSKCC.  "Doctor" doesn't even scratch the surface.  I've been a huge fan of Dr. Norton since I saw him on a stage in the auditorium on the campus of MSKCC.  The video is embedded in a blog post I wrote in July.  He is witty and quotable but I'm going to stick to a particular question that he asked during the presentation last week.

Larry Norton is a compassionate doctor who has the ability to hand hold, knows when it's appropriate to interject a little humor into a situation, spends time building relationships with his patients and refuses to buy into any sort of hype.  Throw a question at him about the clinical use of something on the horizon and he has just one response.  "Show me the data." Rather than speculate, he explains what must be done next to move the research forward.  He believes in evidence based science.  He believes in research.  In fact, he challenged one of the presenters at one of the general sessions.  He wanted to understand how (or IF) the research he had just seen on those ginormous screens would translate to metastatic disease. He is the ultimate #FearlessFriend.

During the presentation hosted by Vital Options,  I have many quotable lines but one take away.  He believes there has been a big impact thanks to the involvement of advocates in research planning.  That's us.  Helping steer the direction of the research.  It's the same theme I heard at Partnering for Cures in NY.  The keys are in our bodies and to that end, he posed a question.  It may have been rhetorical or it might have been exploratory.

"Do you think it's possible to get tissue from metastatic patients?"

He qualified his question by making sure it was understood this would only be done if there was no risk of harm to the patient.  Obviously, there are always risks associated with any sort of surgical procedure but if you were deemed healthy enough to undergo anesthesia, would you consent to a biopsy for the sole purpose of having that tissue used for research? No insurance nonsense, no cost to you.

So, what do you say?  I can't answer that question.  CJ did say she believed the metastatic community would be inclined to WANT to give tissue if given the opportunity.  I'm thinking if I can start some sort of ball rolling to get a sense of how many might be willing to participate in such an undertaking, we can show Dr. Norton the "data."

As the words were coming out of his mouth, you could almost see his thoughts in a bubble.  He may have said that he didn't know how it would even be possible but I got the absolute sense he was already formulating the logistics if he felt he had enough potential donors at the ready.

So?  Speak here.... no names necessary.  Anonymous comments allowed.  Spammers will be shot on sight.  I still have the Texas attitude thing, y'all.  I don't know where THIS is going, or if it's going anywhere.  I do know this, you never know until you ask... and......it never hurts to ask.  Your turn.  GO!

#CHEMOBRAIN AGAIN AT #SABCS

More dismissing.  More "blame the anxiety ridden, sleep deprived" woman.  How about we add: You may not want to mess with a posse of hormone-starved females.

There is a study being presented in a short time and I know it is going to create plenty of buzz among those of us who KNOW chemobrain is real.  Some of us still suffer the identical issues described in the study last week.

I'm writing this from the hallway of the convention center in San Antonio from my iPad.  I have not yet mastered the interface between blogger (Google) and the iPad (Apple).  They are still at odds.  Google "maps" and "new ipad" if you don't know what I mean (AND if you, like me, are easily distracted by minutiae).  The point of that sidebar:  I'd add plenty of links to the PET Scan study.  Just go back a few days in this blog.

Until I'm see the presentation, it would be really irresponsible to comment from the patient point of view.  AFTER the presentation?  I'm certain I will have plenty to say.  I expect the women studied will be a very small number and will fit into a very specific treatment protocol.  

In advance of that, I will leave you with what I heard from Dr. Patricia Ganz in the survivorship session.  Someone sent a tweet that wasn't accurate.  It said (paraphrasing)  "anxiety and depression caused 'cancer-brain' NOT chemo."  I did have the courage to stand at the microphone in a packed hall to read the tweet directly to Dr. Ganz to ask for clarification.  I wanted to be certain I didn't miss something in her presentation.  She reacted stongly, firmly and without hesitation.

MANY things play into the reasons why we experience chemobrain.  Some of us seem to have issues that are later onset and somewhat worsening.  This has been written up in paper after paper.

STAY TUNED...... I may even have the courage to question the researcher.....

EVERYONE TAKE A BREATH, NOT MORE PILLS

Yesterday, I had front row seats to see what happens when a story hits the media during a slow news cycle.  People are tired of hearing about the fiscal cliff which I prefer to call by its "formal name."  Does anyone recall the word?  Correct!

S-E-Q-U-E-S-T-R-A-T-I-O-N

No matter.  It seems we are ready to hang glide but I've been too busy running around a two square block area in San Antonio to pay much attention to any news.

San Antonio is lovely.  The Riverwalk is charming.  San Antonio is bustling.  There are researchers and clinicians and all sorts of folks in the breast cancer arena, from all over the globe, in that same two square blocks.

I am here as a patient advocate sponsored by the Alamo Breast Cancer Foundation.  We are a group of 31 advocates and we are a busy bunch.  Yesterday, the day began at 6:15AM.  Breakfast seminar.  Then, presentations.  Then, more presentations through lunch followed by an interview.  (There will be a video posted on the ABCF website and IF I don't look like a fool, I'll be sure to share!)  Then, a wrap up session on the official presentations and finally, a dinner seminar hosted by Novartis.  The day ended at 10PM.  Today will be the same.  Ditto tomorrow.

This medical symposium is THE event for presentation of the latest in breast cancer research.  Each paper gets presented in a 15 minute time slot.  Perfect for a chemobrain!  Not a chance of getting distracted.  If I glance away from the screen for a second, they've already moved to the next slide.  Yesterday, there was "Big News" expected.  It was "The News" for this 35th Annual Symposium.

Most people already know but some may not.  Study results were presented about tamoxifen.  They seem to indicate there is a benefit to extending the length of time tamoxifen is taken.  The study showed a benefit if the present five year regiment is extended to ten years.  Scientifically, the data presented was "statistically significant" and this is where things get a bit dicey.  Because there was statistical significance, within moments of the study presentation, the NY Times had a piece on their website and twitter was blowing up with this GROUNDBREAKING NEWS.

Hold ON.  HOLD ON.  Not So Fast!  Have we learned nothing?  Sound bites and headlines are just that.... they do not tell the story.  And the sound bites reached a fever pitch by 7PM last night.  This was approximately ten hours after the 15 minute presentation was delivered at the San Antonio Convention Center.  I was in the room.  Listening live.  And then, I had an opportunity to discuss this with a doctor.

Hint:  That interview I mentioned?  As luck would have it, one of my assignments was to interview a doctor and among the things included in my interview was the "ATLAS" study about the tamoxifen.  My debut in front of the camera as an interviewer and I got THE HOT STORY!  That, folks, is what I believe the news people call "a scoop" and I got the scoop. And then, the room full of advocates got the same scoop from a panel of FOUR medical oncologists.  This was a panel of brilliant doctors from all over the country.

I don't have the ability (at this moment) to get into the nitty gritty but I will simply say this:  "Significant" in the scope of a scientific finding is very different from significant as we know it in the real world.  Then, let's add the care we should always take when listening to anyone share statistics.  Statistics can be very funny.  Just how relevant is a particular statistic to YOUR given situation and this is the real take away from what happened yesterday.

While a benefit may have been seen in extending time on tamoxifen, does this mean it's across the board?  Of course not. Three women in one hundred might be spared a recurrence but at what cost?  It may be an FDA safe drug but y'all (my new twang, it doesn't take long....) can tell me how you feel about the medication.  Tamoxifen is really not "well-tolerated" from most patients perspective.

The medical oncologists have made it clear that they have just seen the data for the first time and they haven't had the chance to really analyze it, much less make decisions regarding how they will incorporate this information into a changing treatment paradigm.  There was immediate and unanimous consensus.  There is a small subset of patients for which they would discuss the benefits of additional treatment.  The decision would be a collaboration between doctor and patient and it would include a discussion of whether the potential benefits outweigh the known risks.

So...... NO FREAKING out over any splashy headlines.  The clinicians seem to be unsure how this is going to translate over to their patients and they were clear about their need to analyze the data before they make any suggestions or recommendations.

I'm not a doctor and I do not dispense advice or even suggest what is medically sound practice.  The only medically sound advice I have?  Sit down with your doctor.  Ask questions.  Understand how this study impacts your own set of circumstances.  Remember, there is no cookie cutter answer.  This cancer stuff is highly complex and the deeper we research, the more personalized our treatments will (and should) be.....

And WE must be a partner in our own care.  Talk to your doctor.  Frankly, I wasn't impressed with the numbers but I'm not a scientist or a clinician.  I'm just a woman trying to look at something as emotionally detached as possible.  Not so easy with this cancer stuff, but still.... logic and evidence based science should be the steering factors.  Not emotions.  Not splashy headlines.  Not scare tactics.

Evidence based science.  And a good discussion with your doctor.  At your next scheduled appointment.  I'm not cueing up the confetti on this one.  At least not yet and definitely not for a long time, IF EVER.....  Just sayin'  .... OK?  O-KAY!