Wednesday, August 23, 2017

THIS TIME

When Rik was dying, we were neighbors.  I could hold her hand for hours if she wanted.

Judy is far away.  Can  you send a holding hand by mail?

Maybe she has more time this time...

Monday, August 21, 2017

MAKE YOUR OWN MEDICAL RECORDS - Before the doctor's office...


Recently I had the mother of all sinus allergy attacks.  I was actually coughing and sneezing too hard to drive.  It taught me that a tissue in each hand can make me forget all I need to say.  Things like what to tell the doctor and what to ask the doctor.  And showed me how careless I’ve been.  Even with my rules:

Keep meds list updated
I update my grocery list daily. But Meds list - the really important one - not very well.   
Mine didn’t have my new eye meds on it.  And it was too complicated. Need to simplify.  Since I’m absentminded, I leave on it some meds I no longer take (with a line through them.)  Just in case somebody wants to give me an Rx that once caused me trouble. Or one I’m really allergic to.

Take your meds list everywhere including to the doctor’s office and drugstore.
The doctor and the med assistant may need to scan it (It’s amazing how office computers eat half or all of my file including pills & meds (like the ones I don’t dare take.) If you drive, a current meds list in your glove box might be worth doing - might copy mine & put it in today. And keep a current one in whatever bag you take with you for a hospital test, especially  outpatient surgery.
 .
Take a list of the questions you should ask (especially if I’m too sick to pay good attention)
Questions like:
What’s wrong with me?

Why do I need this test.    How much will it cost?
 (I asked why a chest Xray, should have mentioned I’ve had a five-year pneumonia shot.)

What medicine(s) are you giving me?    Is it expensive?
Is it a pill. Or pills?  How do I take it (some pills I can’t take) He explained.  (More on that later.)
What does it look like?  He showed me the little packs
Is it a steroid?   Since I took them, I’ve had reasons to wish I had asked that question!!

Write down what he says
If you’re as old as I am, you may hate having your daughter go in with you to see him, but my daughter’s writing is readable, MINE? NOT SO MUCH.  And she asks intelligent questions.  (If your doctor looks AT AND TALKS TO your daughter instead of to you, you can ask plainly to be spoken to directly. (Some doctors have not learned that.)

It’s hard to make myself ask these questions.  But I know asking could save me.   Drugstores, and busy doctors, even mine, are not perfect .)

In the past I have been sent home with the wrong labels on pills. (Luckily I knew what they should look like).
I have also been sent home with wrong, incomplete or missing instructions.  Some pill bottles are so small that instructions are on a sticky flap that falls off way too soon. You may have had that experience.

Yes, people even a lot younger than I am, take off glasses or contacts, and just think they know which bottle is which.  And yes, some people can’t afford the glasses they need to read microscopic drug store label print. A friend bought a 4-inch flat magnifier for those occasions.

 I don’t want to take the wrong pill, or take any pill four times a day instead of one time.

 I have a shiny red folder for each doctor for all this stuff.  It cost almost nothing.  Do it.



Thursday, August 17, 2017

Breast Cells discovery on Twitter


"Researchers Identify Estrogen Receptor Stem Cells In The Mammary Gland"

Monday, July 31, 2017

ALLERGIES, STEROIDS and AFTER-SHOCK



I’ve always had allergies.  When I was a little kid they called them colds. As an adult, only time I didn’t have them was during my wonderful 19 months living at a California beach.  I moved; they came back. The doctor was baffled. They seemed too bad to be allergies.

Then I moved to TX.  And for the first time, the whole nasal thing got infected.  Antibiotics. They cut the infection, not the endless sneeze/cough, runny nose.    

The second year, it was worse. So much coughing and sneezing I couldn’t drive.  The doctor said he'd send two scrips - each day I'd take fewer pills, and in a week I'd be done.  I got two tiny boxes.

When I unwrapped the fashionable “pacs” the first was a Prednisone compound.  No. Uh-uh.  Back in the box. But I was miserable, so I took them.  The antibiotic was amazing.   The steroids were not. The coughing kept on until the tissue showed a few traces of blood with the cough.  After several phone calls, I got the promised cough syrup.  Not enough help. The doctor’s office called and asked if the meds worked. I told them I was at the same place I would have been without the meds.


Mom used to say after disappointing medicine 
 "Either this stuff is no good, or I would have died without it." Hmm.

About a week after the steroids were all gone, the Surprises began.

Suddenly I got red areas sort of like athletes foot ON my palms.  (I have blepharitis- Try taking care of your eye infection with that on your palms!  Put on clotrimazole.)

Same week, I had too many errand in the hot, hot car and no place to park in the shade.  When I got home, the sweaty area at the edges of my hair, and on my neck itched wildly. I got patches of streaky itchy hives and even a couple of bumps. The next day, I still had big itchy red areas when I woke up.

I remembered a dermatologist’s words when I was very young:

..."I think you’re allergic to your own sweat."

 I combed the web.  New words:  

  http://emedicine.medscape.com/article/1049978-overview?the > Dermatology

Cholinergic Urticaria

Updated: Apr 04, 2017 Author: Robert A Schwartz, MD, MPH; 
“Cholinergic urticaria is one of the physical urticarias brought on by a physical stimulus. Although this stimulus might be considered to be heat, the actual precipitating cause is sweating.” 
I changed my routine, stayed in during most of the day   .But I had to make a decision:

I’m due for the next Prolia injection.  Prolia admits even on the web site, that it CAN affect the immune system.  Feeling nervous, I cancelled the Priola for now.  

Steroids should slow the immune system when it over-reacts to something simple.       But HOW long until the immune system is BACK TO NORMAL?,   

Go back to the doctor?  I don't want to be in any med waiting rooms with sick folk. I wear a med mask to the grocery store.  Scared?  I didn't go to Starbucks for a month!  And when I did get there, suddenly a big group came in.  I was too freaked out to stay  

Home –lifestyle?  I can't get the indoor humidity below the upper 50s, which is not good for respiratory problems.  And I itch.





  


Friday, July 21, 2017

BREATHING EXPERIMENTS and a Surprise Kindness


Ever since I moved here, I've had a silent, internal battle with the yard maintenance crew.  More than half of every Friday, their machinery, some of it oversized scatters dirt and whatever pollen for my allergies to inhale.  So I stay indoors.

This morning, after a month of scary allergies and scary meds, I decided I had to walk.  So I rushed out to try for one lap before the yard guys would arrive.  I was almost back when I saw a friend coming with her walker, and heard the hated sound of a yard man starting some machine.

When friend and I started to chat, the machine was silent.  She went on.  He didn't start his machine.  We exchanged Good Mornings, and he didn't start the machine until put my allergy mask on and was well past him.  After I got inside, I was sure he waited out of courtesy for us.  One kindness like that can change my view for the day. (And once before one of the crew had shut down a machine when I approached with a tissue over my nose.  Sad how I forget those kind gestures.


Monday, July 17, 2017

FDA NEWS on BACKSTOP AGAINST HER2 Returning


FDA News Release  seen on TWitter

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

For Immediate Release

July 17, 2017

Release

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

DRY BONES, RUNNY NOSE, WHO'S THE BOSS


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.

OTHER THINGS MAKE ME FALL and RISK BONES

Culprits:
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

Solutions:
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

PREDICTIONS - WHAT TO TEST,, WHAT NOT

Thank Heaven my primary has a clue to this

http://www.medscape.com/viewarticle/880535?src=soc_tw_170528_mscpedt_news_mdscp_mdscp_lee

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

SOURCES, PLEASE, please COFFEE BREAK


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  https://medium.com/@katiemccurdy/show-dont-tell-how-visuals-improve-healthcare-visits-1b994f7fd90e





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

US NEWS: FALSE NEGATIVES, ...Not Whole Story

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 uspreventiveservicestaskforce.org. 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

SK CANCER BASKET STUDY REPORT






#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.


    https://www.mskcc.org/blog/aacr17-novel-trial-experimental-drug-shows-promising-early-results?utm_source=Twitter&utm_medium=Organic&utm_campaign=040217PhotoAACRHyman&utm_content=Research&sf67394656=1