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