Monday, July 17, 2017


FDA News Release  seen on TWitter

FDA approves new treatment to reduce the risk of breast cancer returning

For Immediate Release

July 17, 2017


The U.S. Food and Drug Administration today approved Nerlynx (neratinib) for the extended adjuvant treatment of early-stage, HER2-positive breast cancer. For patients with this type of cancer, Nerlynx is the first extended adjuvant therapy, a form of therapy that is taken after an initial treatment to further lower the risk of the cancer coming back. Nerlynx is indicated for adult patients who have been previously treated with a regimen that includes the drug trastuzumab.

Tuesday, July 11, 2017


My allergies were calm this morning just long enough for a question to rear its ugly head.

I've been checking the calendar so I won't miss the Prolia inj at the end of this month.

And I actually want) to take the next bone density test, but secretly plan it for after Prolia inj #4 has had a chance to work.

The question I shouldn't face right now is:  What if that right hip isn't better?

I've always been sure that I believe in Prolia.  But there are plenty of things patients and doctors believe in that turn out to be.....not infallible.)  I like Prolia, because I am impressed with how it works in the body.  Short version - it does its work and then goes away.

The pills on the other hand grip onto one's bones and may be hard to dislodge.  Like Bondo on a hole in your car (ask your boyfriend.  He may give you a lecture on cars, but he'll probably like that better than a plate of pancakes.  Okay, enough on Bondo.)

The doctor has already hinted that because I already had osteoporosis when I started Prolia, I may have to take more Prolia than these four shots.  Will I do that?

This question will not be answered until Prolia shot 4 has had a chance to act, and the density test results are out.  Probably in August.

Now my fear of authority figures is in play. He's the authority figure here. I feel guilty if I wait for the density test.  And  I still tend to think that if the doctor wants more Prolia, I'll have no choice.   That can be a dangerous attitude for a patient to get.

This was going to be a 3-sentence post.  Oops.  At this moment I don't know.  If the hip isn't better, I may agree to more Prolia.   Not because he's an authority figure, but because I trust him and want him as my doctor.

I still remember that first day in his waiting room when the woman said, "You have the good doctor!"

Friday, June 30, 2017

Bone Density check - bits of info Midnight Special

The other day reporting to a hospital for a chest x-ray (for allergies, big cough) I remembered I will be getting the two-year bone density scan that Medicare allows to find out if the Prolia I take actually works.

I kind of remembered the entry area and felt it's the same place I got my original density scan.  (Can't resist telling people that only my hips were scanned because there's lumbar fusion metal in my spine.)

Seems like the very same day I decided this was the place, I also ran into an online recommendation that we do go to the same place for a second scan.  This makes perfect sense to me - same room, probably same apparatus, same method and so on.  Most important to me:  May be the same Radiologic Tech as before!

The original scan of my right hip (the one thus diagnosed with osteoporosis) was a very uncomfortable process.  I just lay there and took it til it was over, then the Tech had no idea why I felt so uncomfortable.  I want more info on why that happened.  Especially if it hurts this next time.

As I've mentioned, I have a funny hip the won't do everything limber people do.

I want my next (maybe final) Prolia before the scan.  Let Prolia give its best shot to this hip; then we'll see.

Saturday, June 17, 2017

PROLIA and other questions pt 2 MIDNIGHT SPECIAL

Saw the doctor yesterday.  He told me that Prolia is a two-year program.  I decided not to worry about it.  Then he said since I had osteoporosis when I started, I might need Prolia more than this two years.  Then I DID decide to worry about it..  But so far, so good.  

 But is it working?  He will send me for a 2nd year scan.  He had no definite answer on why the first scan was so uncomfortable.  I do know I have a funny hip....will ask tech during next scan.

I told him I had no effects from the fall to my knees when the kid in the pickup was crowding me up against the sidewalk a couple of weeks ago.      I need the scan anyway.

The very weird discoloration after getting overheated, last week and the "full-body warm flashes" also seem to him normal (not sure if that's for my age instead of Tamox.)

I'll check with his office next week to see if I'm to get the bone scan before this 4th Prolia, or after. It may not matter either way.  Am kind interested to see if that right hip is significantly better.

I wish you health.

Wednesday, June 14, 2017

BONES - Care and feeding of

Tomorrow is my oncologist apptmt. (I really like him.)   Prolia is bound to enter the conversation. Two days ago I gave billing office entire Medicare deductible for year for Jan. Prolia inj.

I hate the things I don't know about Prolia.

   I don't know if the people referred to my dentist for ONJ were taking Prolia or the pills
   I don't know if Prolia is even strengthening my bones, since I haven't had another scan
   I don't know if science has learned more about possible effects on the rest of my body
   I don't know if there's more research since the 2012 NCBI article I've saved
   Have enough women been saved from fracture?

  I don't know whether to have the next Prolia injection.  I'm sure Dr. will want me to.  He doesn't want me to fall and break a bone.

Speaking of falls:  Mayo Clinic has put out much info on balance problems. They focus a lot on inner ear problems, and their balance team.  Physical therapy has done me much good without a team.
Balance problems can make me fall, and Prolia may/may not keep a bone from breaking.


Muscle relaxant pills and strong pain pills
Dehydration fainting.  911 tech made me drink a bottle of water
Bad sandals with soles that's won't let me turn on smooth floors - almost fell
Bad shoes poorly made - my feet slide around in them or out of them
A little vertigo getting out of bed or off exam table at times (but I haven't fallen)
Mild vertigo but I haven't fallen if I suddenly look left and down.
Careless motorists (some but not all young) backing up without looking
Sudden changes in sidewalk or street or hallway floor level.
Sitting way too long and getting up stiff

A cane hooked on the nightstand for night walking
A chair near bed holds my flashlight
Some neat sox with extra padding if shoes seem too loose some days
Giving up wearing heels.
Remembering to pick up my feet since I need  a "throw" rug in kitchen door
Using the railing on stairs
Not using stairs when a heavy bag unbalances me
Shout if necessary, bang on fender when careless motorist backs toward  you
Walk as PTh told me - weight on f'wd heel, feet not too close together

A very smart lady lawyer  once said in an article on falling:

The worst cause of falls may be the FEAR of falling!

I'm sure that's true, because physical therapy had to cure my fear of going down stairs.

I wish you health.

Sunday, May 28, 2017


Thank Heaven my primary has a clue to this

Friday, May 26, 2017

CANCER BREAKTHROUGH DRUG - and a clear look at exceptions

"In Bold Move, FDA Approves Cancer Drug For Any Advanced Tumor With Genetic Changes"  Forbes  Elaine Schattner 

I almost gave up on this article (which was on Twitter this week) because I'm not familiar with the disease types that may be helped.  

But the writing is so clear and important that I marched through the first two paragraphs.  And found the WHY of this important turning point:

"It suggests the agency may be ditching an archaic system for classifying cancers based on body partslike breast or liver or colon cancer—and instead will focus on molecular aspects of malignancies, qualities that render tumors 
vulnerable, or not, to targeted drugs."

We're talking about Keytruda.  And we've arrived at the possible problems and considerations;:

"The FDA cites data compiled from five non-randomized studies that support this drug’s effectiveness in various tumor types."  Generally, I hesitate when I see the words non-randomized studies.

Then: $Cost.  Big.  And high toxicity. 

Then two things I would hope for if it were my tumor, my body: physician's judgment.

And appropriateness/accuracy: 
"Distinct ways of checking tumors for these abnormalities could yield variable results."

Yes, a tough road, tough decisions.  

And I remember something beautiful I retweeted this week: with apologies to the original writer, 
something about the patient being the only one who knows all that's really going on in his body.

I wish you health.


Monday, May 22, 2017


Two new posts on Twitter just now on costs of screening later for BC and at what age.

I'm not quoting them.  There has been so much disagreement on when/vs/what age, vs something else that I want to know:  what specific study popped out these figures, and how recently.

And how often that study has been cited as a reliable one.

In short, I like to know Who Says So.

Meanwhile, I'm sticking with my oncologist who still favors a yearly mammo for people who have already had DCIS.  And that's regardless of who says now it's "not really cancer."

I wish you health.

Wednesday, May 17, 2017

Patient Experience = Yours - Coffee Break

I got this on Twitter, retweeted by someone I follow:
We'll be talking about for all of May. Tweet us your stories using !

hashtag #TreatThePerson
I Googled Advisory Board, got a pile of things.  If you're on Twitter or can get a minute on someone's, you might use the hashtag, tell it like it was.     

Sunday, April 30, 2017

SEE, DOCTOR? This is Where It Hurts

Once, I was referred to a doctor who just did not like me.  He did send me to Pth, but at the end of our awkward hour, he informed me that:

"You're not good at saying what's wrong with you."

I thought he was supposed to tell me what's wrong with me.  But I think I know what he meant; Describe some pain, something that will tell me where to start, something you want to do but can't.

When I was tutoring, I remembered a girl I knew in college who drew muscles and whatever on her own skin as a study skill.  I suggested at a tutor training that there might be a place for that when the tutor and the client didn't speak the same language,

 Now I found this article  thru Twitter. 

Show, don’t tell: how visuals improve healthcare visits
By Katie McCurdy and Chethan Sarabu, MD,    (BYLINED Katie McCurdy.)

The banner of the article was just very simple line drawing, like a smart kid could draw (of a doctor's office.  BINGO.  I wanted to draw too-tall waiting room chairs and how they cut off my circulation.  But the bylined author, Katie McCurdy is not about furniture, she's sharing how pictures can give a trainload of our information to the doctor - and in a picture of how one symptom, one day, one weather change may cross-affect other ills, other tests.

 McCurdy has drawn an elaborate time line chart; symptoms, felt or diagnosed, overlaid on each other day by day   I see this as valuable for so many reasons - each day shows a relationship of symptoms, so if there's an effect between two symptoms, it shows.   I hope you can find the article to see how this looks: with one major problem in pale color, the others can be line drawn on top of it.  Tests and other affecting factors can be written in the margin.

     If I could learn to do this with my colored pencils - 
 it might take the place of even an hour of talking to the doctor. 
 He could see for himself what aggravated a pain, affected a  test.

A help for people like me - a lumbar fusion that affects arthritis and circulation and more...   a dermatitis affects my eye infection; and do my sinuses also affect my eyes. 

Dr. Sarabu, the other author,  is a pediatrician.  He understands dealing with a kid's vocabulary, including scared vocabulary.  We might be surprised how kids can draw the hurt times and place -  just what  doctor needs to know.  

And Yes, adults have scared vocabulary days.  I sometimes do,  and did when that voice on the phone said "cancer."

He also mentions how visuals can help the doctor.  (So we don't feel funny bringing in these charts and pictures.)

 There is so much more covered here.  Including a reference to " a long history of surgeons adding paper drawings to the chart to better describe the details of the surgery they performed."

Even if we don't chart (I don't,) McCurdy shows us her very simple "paper doll views" that we can do.  One front view sketch can show where it hurt Monday, one for Friday. a different one for Wednesday.  Could show ailments like Arthritis that stab  Tuesday morning, then disappear for days.

She has a photo of how she arranged those paper doll  "day" sketches in order before the doctor even got into the office.    Did this work for Katie and the doctor?

"I felt that she heard me, 
and she ordered a bunch of tests
 based on the symptoms I was having."   

 There is even a worksheet you can copy to start your own "record."

   I see this as a way to "engage" our doctors and to show that we are and have been engaged.

(Medium) @Medium

Saturday, April 29, 2017

COFFEE BREAK - From Kaiser Health News

Have you seen/read this?

Widespread Hype Gives False Hope To Many Cancer Patients

For me, the interesting thing about this article is: 
 just reading and comparing what doctors say versus what medicine manufacturers say.

Saturday, April 22, 2017

RIGHT NOW, Even if you hate science, READ THIS COFFEE BREAK

At least read part of it.  Do.

Five reasons blog posts are of higher scientific quality than journal articles via

With her opening shot at glittering generalizations and the case she makes against other journal no-noes,,, how could I resist this article?

Friday, April 21, 2017

FRAILTY -Your mom doesn't need it. Let's prevent it. - MIDNIGHT SPECIAL

 Frailty is probably defined differently by just about every one.  Someone I know whose arthritis is limited even some small pleasures has been considered frail.  Perhaps among many doctors it's when too many things stop working at once, enough to limit our getting around and taking any care of ourselves.

British Geriatric Society had an article on the 21st...

"Frailty is the most problematic expression of population ageing”

In which a geriatrician talked of what we must do.  The approach seemed very general and low on avoidance or prevention, to me.

OK, since it's my blog, I also need to say (again) when I was in college, glittering generalizations (as in not supported with facts) would get you an F.  No do overs..   I'm seeing articles on my pet subjects (aging is one, of course) that are loaded with generalizations and leave me knowing nothing new and nothing to do.

So I'm taking the liberty of sharing my reply to that geriatrician's article:

 Margaret Fleming on 22/04/2017 at 1:40 am said:W

Your comment is awaiting moderation. 

I need more of an overview, more specifics on what is frailty, and on why we have not been acting earlier (I’ve had two courses of PTh in the four years since lumbar fusion.) How we should be acting to prevent every bit as much as to treat.

Your comments to my thoughts here are welcome.
I wish you health.

Thursday, April 13, 2017


With all possible respect, must say I'm disappointed in the US News "False Negatives, False Positives" article. today.

This positive/negative issue has been discussed by leaders in the field.  US News could have called on more of them instead of starting by quoting Komen.

Then, only one doctor from a college health center (UF).   Dr. Shah's list for next steps from bad mammo “after an abnormal mammogram, the next step is a sonogram, a physical exam and eventually they may need an excisional biopsy” does not reflect practice everywhere.

Instead of ultrasound (the test that produces a  sonogram,) OR excisional biopsy, I was  persuaded to have a

stereotactic needle biopsy.  It uses image guidance
 to tell the "needle" where to take a small sample.

 The tech providing the images to the doctor had recently worked to teach others to use the image technology.  I wasn't delighted by it, but it was better than traditional "knife" biopsy.  It did detect a cancer, and made me feel okay to meet the cancer surgeon.  

 The was one place quoted as having changed
 their recommendations for screening.   I don't know a lot about them, I admit.

The main benefit I see from the article is:  It made me wonder why no other hospitals are included.  Are they all pushing screening?  Or are more hospitals than realized in controversy on what to do after DCIS diagnosis.  If anything.

As one who had surgery, radiation, and now tamoxifen for DCIS,  I'm still looking up what hospitals do what.  My surgeon said I could do nothing if I chose!  At that time, as far as I knew, that was a radical stand.  He then recommended I meet a certain radiation oncologist who, I feel, pushed me (or downright pressured me) into radiation.  I had, however seen some figures from one hospital that later led me to think the radiation might be good, especially after I saw my path report from surgery.
(Have I told you that story way too many times?)

Would be interested in your feedback if you read the US News article.

I wish you health.

Tuesday, April 4, 2017


#AACR17: Basket Trial for Experimental Drug Shows Promising Early Results

First, at this week's press conference: David Hyman, MD, from presented data from a phase II basket trial.

I'm going to quote heavily here from the article's intro to the story of SUMMIT phase 2 study.:

"Neratinib,  an experimental drug developed to target certain mutations that drive cancer growth, is showing promise for treating several types of cancer. The findings from a phase II study were presented at the 2017 AACR Annual Meeting."

" Basket trials are based on the idea that cancers originating in different parts of the body may carry the same genetic mutations.

  • Neratinib, the drug in this study, targets mutations in a protein called HER2. 
  • Researchers think the drug will work even better if it’s combined with other therapies".

  • (Not the same HER2 we've been thinking of in breast cancer.)

  • Breast Cancer, cervical cancer, and biliary cancer showed the best results - some tumors shrunk, some stopped growing.  Which leads us to a story from Dr. Robin Gillespie, a scientist who has taken the drug for two years!

    After chemo and having a lung removed, she had no other conventional choices.  She was tested for mutations that might qualify her for a clinical trial, she came to SK. 

    Metastatic since 2011:

    Her tumors have stopped growingShe has almost no side effectsShe can take the medicine as pills You might enjoy her study - and have a look at the whole article.
    I wish you health.

    Wednesday, March 22, 2017

    IMPLANTS - TOUGH WORDS Midnight Special

    "↓ Full text

    "United States Epidemiology of Breast Implant-Associated Anaplastic Large Cell Lymphoma.

    Doren EL, et al. Plast Reconstr Surg. 2017 "

    Pub Med tonight

    Terms - BI-ALCL   is Breast Implant associated ALCL

    "CONCLUSIONS: This study suggests a statistically significant association between textured breast implants and BI-ALCL....... "

    OR Just Google

    "9 Deaths Are Linked to Rare Cancer From Breast Implants"   NYTimes

    I wish you health.

    IMPLANTS? READ Coffee Break Bulletin See MEDSCAPE

    If you missed this news in 2011, IT'S BACK.

    On Twitter yesterday, MEDSCAPE notified us that a "maybe associated"  type of lymphoma,  ALCL has now more than "maybe" association with implants.

    The article quotes FDA as saying they

    " concur with the World Health Organization designation of breast implant-associated anaplastic large cell lymphoma (BIA-ALCL) as a rare T-cell lymphoma that can develop following breast implants,"

    The article puts textured implants under a grey cloud.  The  Medical Device Reports FDA received that do mention surfaces far more often mention textured surface implants.

    Of course, there are reminders that DEVICE problem reporting isn't gospel, etc.  but they're not ignoring the preponderant mentions of textured implants. And as for research as a whole, the agency says:

     "All of the information to date suggests that women with breast implants have a very low but increased risk of developing ALCL compared to women who do not have breast implants."

    I wish  you health.

    Source : Tw and view article/877518?src=soc_tw_170321_mscpedt_news_onc_implants

    Thursday, March 16, 2017

    A Ray of Sensible Med Thought to Save our pocket book Midnight Special

    Bishal Gyawali got a re-tweet today referring to his list of what medics should stop to avoid wounding our pocketbooks (I love his phrase "avoiding financial toxicity" for patients.

    One of the low-value practices to stop was ignoring cheaper drugs in supportive care.

    Even though BC is not mentioned, the list gave me some hope for the future.  Also, if you can't get this on twitter, watch your sources for possible lists later of more low value behavior to drop.

    Surely this will be more important if we end up short on insurance.

    Tuesday, March 14, 2017


    CT Center for patient safety announcement in my e-mail

    Participate in the national Twitter chat on Tuesday March 14th at 1:00pm entitled: Patient Safety: What Patients Want (and Need) to Know.  Join Tuesday's Twitter chat with  #PSAW17chat.  The Connecticut Center for Patient Safety uses the Twitter ID @CTPatientSafety.

    Monday, February 27, 2017


    Friday, pains were so strong (plus a migraine flare-up) that I had to go back to my morning stretch routine.

    So, even tho I haven't needed to soak the eyelids in the morning, obviously I still need to do all the stretches I used to do during eye-care time. (Which, of course was also brew coffee time.)

    PS The migraine images were a dead give-away that I had spent way too much time on Twitter.

    And, no surprise (especially after a walk yesterday) I was just about  pain-free this morning.

    Meanwhile, back at the allergies-- the area around the market and Starbucks was not a good place for that walk around 5pm - way too much car exhaust from the dinner crowd. Finding a time outside free from pollen and exhaust fumes is tricky.  And imperative!

    Bottom line:  my all-body, PT approved stretches are a minimum - No exhaust fumes and pollen in here. So No excuse.

    Okay, the other confessions:

    The podiatrist is too polite to say my feet would hurt less if I lost weight.  I confess I gained back 4 or 5 pounds that I had lost after pre-diabetic diagnosis.  (Gee, they mean it when they say it's easier to lost than to keep it off.)  So grocery shopping is modified til I get that scales needle back toward the left.

    And finally, my posture stinks.  And our postural muscles do burn calories, but only when we flex them.

    Tuesday, February 21, 2017


    This week, a tweet led me to a brief item from Mayo Clinic: 

    Mayo Clinic

    "Most people don't receive any additional fracture-prevention benefit after they have been taking intravenous bisphosphonates for more than three years or oral bisphosphonates for more than five years."

    The item went on to indicate that we might want to stop bisphosphanates at that point, but with a qualifier that later, if our bones scanned as fragile, our physician might restart the medicine then.

    For some reason, that item suddenly pulled me back to a study I saved a few years ago when I briefly considered bisphosphonates.  (For several reasons, I can't take them.)   

    Before I went on to Prolia, I had accumulated a big file on bisphosphonates, and the following was in red in my BONES file: It's got good news and for some, bad news:

    NEJM Catlyst:
    Consequences of poor compliance with bisphosphonates.

    " Reductions in fracture risk and overall health costs can be detected in individuals achieving as little as 60% to 40% compliance with bisphosphonates. However, as many as 34% of patients in the first year of therapy and 52% by the third year will not reach even the minimal compliance levels required to receive benefits."
    Published by Elsevier Inc.

    So apparently, it's not just for how long, it's also how often (as in taking them on schedule.)

    Why would someone pay for some of the pills or have some of the shots, then stop or delay too long?  
    Are the side effects so miserable?  Is the cost so high?  Do some women just have so many demands on their time from job, family, money or distance that they can't continue?