BREAST CANCER - URGENT - What makes it harder to get answers, clinical trials, and treatments

Today on Twitter, a woman named Phyllis posted the questions that are being asked, particularly by those with metastatic breast cancer, about roadblocks to clinical trials, and many other needs and situations where our medical machine is stalled while patients need answers.

They will be asked of researchers at a conference in December.

If you missed it, it's headlined:  #METUPAsks Our questions for researchers at SABCS16 , December 6-9


If you're not on Twitter, I just googled SABCS 16 and immediately got a headline, what to know about the conference, etc.

I'm stressing this not only for breast cancer, but because the questions are probably applicable to other diseases--ones that give patients the same struggle to get clinical trials and other necessary help.

I wanted to get this posted, so have not asked Phyllis if the whole list is available for us to read.

IN LOVING MEMORY - The note

When I left California a few years ago, I went thru all my keepsakes, trying to winnow them out for the wheelchair flight to my new state.  In a pile of photos was a printed thank-you note that at first I didn't recognize.  The message inside was short, but powerful.  And made me feel cared-for.

Dear M--

Words cannot express how much your friendship has meant to me. 

It might be tested a lot in the next few months.

Love, Rik

It was written after she had been diagnosed with breast cancer.   Breast cancer thought to have started in a flat disk on her chest - beyond the reach of the mammogram.

My work days started and ended early then, so I had time to spend with her --and later time to spend visiting the hospital.  Her roommate and friend of long years was a nurse in the same hospital, and able to have a schedule that kept her near Rik quite a bit. And she had another long-time friend or two in the neighborhood.  

***

I got a birthday card a few months ago that makes a pretty  bookmark.  On the front, in the top corner is a miniature sketch of the beaky little birds Rik liked so much on our endless walks by the ocean. Some sunsets, the wind blew so hard we got little red lines on our cheeks from flying grains of sand. This new card with the tiny birds brings those sunsets back stronger than I expected.

But now, far from the ocean, I remember Rik, our walks, the real birds, through a new filter - the voice on the phone: "There was cancer" when my DCIS was found.  

Where's All the Cancer Medicine? Enjoyable Atlantic article. Midnight Special

The Atlantic:

"Cuba's Innovative Cancer Vaccine Is Finally Coming to America

The country has a whole arsenal of unique drugs locked behind the U.S. embargo."

This article is a delightful surprise!  Seriously!  If you've ever known anyone who has wanted to visit relatives in Cuba, or a a relative who came here, you'll enjoy this surprising story article even more.

I just googled       Atlantic mag cancer vaccines  

DIY TISSUE EXPANSION AT HOME? If MIT says so, they're serious

Heather Furnas, MD  posted this photo of air-action tissue expansion device on Twitter today.   Talk about revolutionary--never dreamed I'd be reading this.

https://www.technologyreview.com/s/602755/device-lets-cancer-patients-assist-in-their-own-breast-reconstruction-at-home/?utm_campaign=add_this&utm_source=twitter&utm_medium=post  

Article  from MIT Technology Review includes quote from Columbia clinical trial participant.

I just Googled MIT Technology Review Tissue Expander.

HOW WILL I LOOK AFTER BREAST (and other) SURGERY? HELP FOR OUR FEAR

https://magazine.hms.harvard.edu/surgery/reflected-anew  by Stephanie Dutchen.  I got this link through Twitter.

I love this article:
After many, maybe too many "tough girl" quotes like "take them both off before I get it again." in the recent press, I was glad that Dutchen quotes Barbara Smith ’83, an HMS associate professor of surgery at Massachusetts General Hospital, as saying:

"It's not frivolous for someone to worry about remaining intact." 

  This is so important.  My very wise L.A. family doctor used to use the term "tribal" for some  thoughts and feelings that go far deep in our mental/psychological roots.  What's more tribal than wanting to stay all in one piece?

Beth Israel Oncology Social Work Chief//Author/mastectomy survivor Hester Hill Schnipper knows we can be embarrassed to talk about how we may look after we wake up,  

' “It’s hard for most people to bring that kind of thing up,”   

“so it would help if the surgeon would say it first. 

Acknowledge the patient’s fears 

and make those fears acceptable.” '

I especially love 'this article's facing hard facts about changimg the surgery status quo  (something we may have secretly wished for!)  for instance: one recurring theme of the article is better, less disfiguring procedures, something I almost never read about elsewhere.

Smith says: 

"Surgeons can also help their patients by looking for ways to improve the procedures they perform or by developing entirely new ones." 

How could I not love this idea, this resolve?  Please find this on line and read the whole thing. Here, far away from the same old "someday" and "if only,." there is hope.

WHY I FELL - The Risk The Doctor May Not Mention

Many decades ago, a doctor wrote a scrip for Great-Aunt Blanche:  Buy a case of Vernor's Ginger Ale.

They couldn't really afford the gas they burned to drive across the state line to a Vernor's distributor, but at least she had something important to talk about for weeks:  Dehydration.

I remembered that story a few years ago at work, when a fabric rep refused my offer of coffee: "I only drink it in the morning now; coffee is just too dehydrating - it ruins your skin."  (And his skin is fine, worth pampering.)

Not too long after that, at a company outing to a fabulous evening open house, I suddenly felt weak, sunk gracefully to the sidewalk, and passed out for a few seconds.  I was outside in crisp, cool air and hadn't had any symptoms before I fell. The fire dept. EMT made me drink a bottle of water; I got up and walked to the car with no more symptoms.  Turns out half a tiny plastic glass of wine had been no protection against dehydration.  You'd think I would learn.

My writing ritual was always a cup of coffee right next to the computer (part of my inner image as the busy writer, or at work, the busy computer jockey.)  But I don't have the habit of drinking enough water.

Fast forward:  A couple of weeks ago, I felt a bit dizzy and tired at the keyboard, put head between the knees, and all.  Suddenly I knew:  dehydration..  Since my recent bout with pre-diabetes, ginger ale is not an option, so I drink all the coffee I want instead of the water I need. Adding my green tea from the dental protection regimen should make me drink even more water.  Ugh.

I was lucky to have those symptoms.  Aunt Blanche apparently didn't notice symptoms, but her doctor did.  (One thing I'm learning; different writers from the same big hospital may have slightly different opinions on a subject like dehydration.) Alas, several of them agree that getting older may add to the danger; we may not notice thirst and may not eat foods that bring in moisture.

Today I learned that dehydration could also be a factor in my (expletive deleted) chronic eyelid disease!
http://www.bopss.co.uk/public-information/common-conditions/blepharitis/

Why am I telling this:  With summer ending, school will start, days will get colder in most places. Coffee is warm and kind while water is just ... water.  Grownups will head to a place with hot coffee. We will forget summer warnings to drink enough water.  We may get dehydrated from so much caffeine.  Osteoporosis, taking more medicines than usual, or just being sick may increase our danger of falling.

Writing this really makes me want more mid-morning coffee,  It should come with a glass of water. Secretly, I'm buying bottled spring water, but so far not putting it in the coffee maker.  The big pint-and-a half bottle makes me aware of how much I drink.  Or don't.  I need to get some squatty little water bottles that fit perfectly under the dash in my car.  And I must not keep them in the fridge - a splash of icy water on my leg when I brake could cause problems at least as bad as dehydration.

As for the day recently when I felt a bit dizzy at the computer..(and my need for noon naps):
https://medlineplus.gov/dehydration.html#summary:

" Signs of dehydration in adults include

• Being thirsty
• Urinating less often than usual
• Dark-colored urine
• Dry skin
• Feeling tired
• Dizziness and fainting"

And of course, I'm in TX so summer warnings still apply.  

BREASTCANCER - MUST READ. A Doctor advises: before and during treatment: what to insist on.

 If you missed this on TW or in The Detroit News, hope you get to read it.

Dr. Debra Johnson, a professor at UC Davis, gave information new to me about what TESTS to demand so we can assess dangers before chemo and radiation plus effects of chemo and radiation.

http://www.detroitnews.com/story/opinion/2016/10/08/breast-cancer-beyond-sound-bite/91776828/

I had to paste this title into Google after this moved on in TW.  Worth the work, work the read.