Monday, April 15, 2013


There are three BIG events that have been unfolding over the past several days and I want to be sure each of them gets proper coverage.

This morning, the Supreme Court of the United States is hearing oral arguments on the issue of gene patents.  Too much is at stake for me to ignore the last stop in the legal battle and too many of my friends are on the steps of the Supreme Court telling their stories.  I will be distracted.  Twitter is real time and I will be following the stream.

Item number two: PD991 has a name.  Palbociclib.  It should take me about six months to remember the proper pronunciation.  PAL Bo Sey KLIB.  I have no idea which syllable gets emphasized but the biggest emphasis belongs on the FDA approval for breakthrough therapy designation.  The drug is for metastatic breast cancer patients who are estrogen positive.  The clinical trials were designed using the drug as first line treatment.  I HOPE the drug will be available to any metastatic patient, even those who have already been treated with other medications.

There are already three other methods for approving new medications more expeditiously than normal.  Fast Track, Accelerated Approval and Priority Review.  Breakthrough Therapy Designation is now a fourth way of seeking quick(er) approval.  What does this all mean?  From a strictly lay point of view, there are four ways to cut through the red tape.  I won't bore anyone with the details of each process but  the details are on the FDA website.  I will shout, for the zillionth time, the promise of PD991.  To change time of progression by 20 MONTHS is huge.  Hell, the semi-fight session at the AACR meeting that I attended..... part of the discussion among the panel and some of the audience members was about the importance of picking up TWO months.  This drug is picking up nearly two YEARS.  I call that huge.  Really, huge doesn't scratch the surface......

The third MOST noteworthy conversation involves chemobrain.  A small study was published (online ahead of print) in Integrative Cancer Therapies.  Jean Alvarez who designed and conducted the study, contacted me a couple of months ago to share what she observed using neurofeedback on a group of breast cancer patients.  These were patients who were beyond active treatment and still suffering with cognitive issues.  After reading about the process and seeing the results, it certainly seems this holds significant promise.  I am hopeful, based upon the observations in this small group, that a larger study might be designed.

Everything presently available from many of the studies has done little more than confirm the very real existence of Post Cancer Cognitive Impairment (PCCI aka Chemobrain).  Suggestions for how to live with the problem are aplenty.  An actual solution to the problem?  Not so much.  But, Not So Fast.  I know there are studies currently underway for newly diagnosed patients.  There are limited studies on those of us whose brains are still a mess, years (or even decades) after treatment has been completed.

Brain training, medications like ritalin or nuvigil, mindful meditation have all been suggested as possible ways to reduce the effects of chemobrain.  Neurofeedback is non-invasive, requires no active participation and yes, I have experienced it first hand.  Jean provided me with the name of a colleague in NYC with whom I've been training for the past ten weeks.

I've paid for my sessions (that's my full financial disclosure) so I'm in no way beholden to anyone to say things that I haven't experienced.  My first session was the beginning of February.  Session 11 will be this Wednesday.

The abstract for the neurofeedback study can be found here.  Last month, there was a special article in the Journal of Pain and Symptom Management.  The authors are Wendy L. Nelson and Jerry Sulis and the link is to the abstract.  The title: New Approaches to Understand Cognitive Changes Associated With Chemotherapy for Non-Central Nervous System Tumors.

I have both articles in my possession.  In full.  Sorry for the teasers but the full stories with be forthcoming in the next day or two.  The most noteworthy difference?  The special article describes the challenges in diagnosing chemobrain.  Take a bow.  We are a pretty intelligent bunch so the standard tests may not be sensitive enough to identify problems.  Or we are straining our brains to accomplish what was previously done with our eyes closed AND one hand tied behind our backs. 

Neurofeedback?  It's possible this is a SOLUTION.  Not a "put your keys in the same place" solution but a restorative solution... as in..... "Here's a portion (if not much) of your old brain back" ......  

Stay tuned......  I'll share the experience of my NFB sessions and the improvements I feel I've noticed in my own life.  This is screaming for a double blind, randomized gold standard study.  This is exciting.  This is different.

I'm impressed.  I'm anxious to share.  Come on back tomorrow......  


  1. What a wonderful report back on these hot topics that are so meaningful and critical to the the Metastatic Breast Cancer community and beyond. Looking forward to additional info. Thanks for sharing.

    1. The drug study was presented in San Antonio. I can still recall sitting beside my roommate, twitter buddy and VERY DEAR friend when the findings were unveiled. "Wait, did he just say 26 MONTHS for this drug and 7.5 months for the present treatment???" There was a woman in front of us who was equally stunned. She turned to clarify. The three of us turned back to the huge screens throughout the auditorium to look at those slides.


  2. THANK YOU, dear A.M.! SO relevant and exciting. All of it! Some god news on a bad news day :-)

    1. Thanks, Liza...

      I'm sitting here completely destroyed by what I'm hearing from Boston.....

      Doubtful I'll expand on any of this for tomorrow's blog.


  3. Hi Ann!
    its dreamer from the chat room
    wanted to say that i had acupuncture, several times for chemobrain
    and i saw significant cognitive improvement, esp after the first one

    i know a lot of people are 'afraid' of acupuncture, worried that the needles
    hurt... they do not hurt, esp the ones they stick into the scalp
    the outcome is totally worth a bit of discomfort

    1. DREAMER!!!!!!

      How are you????? As you can see I'm quite the busy one. I don't know WHY I never thought about trying acupuncture but I am going to look into that.

      I will say that the neurofeedback sessions have been great. Stay tuned.... I will be sharing...

      So good to hear from you....

      Hugs and love,

  4. There really has been so many events with the AACR Meeting, The Supreme Court and Myriad, LBBC mets Conference.....

    Thanks for the info about Palbociclib! I found the current clinical trials for Palbociclib (PD-0332991) on at: It's "A Study of PD-0332991 + Letrozole vs. Letrozole For 1st Line Treatment Of Postmenopausal Women With ER+/HER2- Advanced Breast Cancer", I read about the FDA and the drug but a PFS of 20 months is fantastic!

    Glad you are trying the NFB and can't wait to hear if it helps. I am sure you read about you and social media at AACR at :

    You are everywhere! You are doing such a great job AnneMarie. Thank You! Hugs and XoXoXo - Susan


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