Wednesday, December 21, 2016


Sunrise Rounds brought another forgotten medical issue for this season: Please read it and tell one person about this courageous doctor and what his country has given him to fear.

Is anyone here willing to protect his family while he is protecting members of our families?

I wish you, doctors, and your loved ones in the service HEALTH

Tuesday, December 20, 2016


This wonderful lesson in courtesy and accuracy! was on twitter with credit to Dr. Pamela Wible, MD,  I hope she will forgive me for passing it on.

It caught my eye partly because this is a season when I remember a work friend who died by suicide. Some abuse was heaped on his memory due to that very concept ("commit") and the time (Christmas.).

The list also got me because the statement "patient is non-compliant" usually makes me want to throw something and/or scream even when the speaker is not pointing at me.

As for health professionals, I flinch when a receptionist asks "Who's your PHP?"

And of course, Health Professional takes a couple more syllables, but my two main doctors deserve far more respect and praise than PCP.  And so do the others who take care of me.

So I"ll be watching my mouth instead of going with the slang (much as I love slang in other situations.)

I wish you health.


Tuesday, December 13, 2016

Is Prolia good news for cancer?

I was thinking of ways to get a vacation from Prolia.  I had come to it by a roundabout way - I can't take the osteoporosis pills due to a list of problems.  My oncologist offered to handle the Prolia shots. (I didn't like the bit in the Prolia leaflet about my immune system including:  "Stay away from sick people.")  Makes a person want to leave Starbucks when anyone coughs...

My tamoxifen appointment with him is Thursday (already had my mammo and bloodwork.)

Then I read on Twitter:

There's a pile of pages on bone loss in my medical file - full of "In the absence of estrogen" it seems RANK/RANKL destroy not only bones that need replacement, but eagerly move onto bones we're still using.  Siccing Prolia on the RANK/RANKL was the answer...

The study covered here says RANK/RANKL also work in "formation of a lactating mammary gland in pregnancy'"  And the authors say:

 "Based on their normal physiology, RANKL/RANK control the onset of hormone-induced breast cancer through the expansion of mammary progenitor cells." 

For some reason, the abstract seemed to gloss over that or over-simplify, and I don't have the complete test. 

 The abstract concludes: "we propose that anti-RANKL therapy could be a feasible preventive strategy for women carrying BRCA1 mutations, and by extension to other women with high risk of breast cancer.

I wonder what my oncologist will say about this...

Monday, December 5, 2016

"Immune System Unleashed...can attack"

"Immune System, Unleashed by Cancer Therapies, Can Attack Organs"

Read the article. Google it.   I was unnerved by the points of view.  And I urge you to follow the links.  There may be more news on this later from NYT or more encouraging news.  Or not.
The weight of the findings there may be counteracted by different findings.  Or we may be feeling cheated by science's haste.

If I were known to be dying of cancer, (instead of crossing my fingers for my yearly diagnostic mammo,) I would probably be desperate.  If I were in horrible pain, I would be very desperate.    Maybe I would wish I hadn't read this article.  Maybe I would be grateful I did read it. 

Don't we all need to start asking A LOT MORE QUESTIONS?

Thursday, December 1, 2016


STAT news brings a very short and CLEAR beginners idea on CRISPR gene editing - how it works.

This video is cool.  Very well done. utm_content=buffer24d3c&utm_medium=social&

 Love it when somebody can clarify.

When I get out of Twitter, I have to use this whole link above to get the video.

Saturday, November 26, 2016


Some tumors can hide out and quietly repair their own DNA. "Without such repairs, the cells can become so genomically dysfunctional that they have little recourse but to die."

Drugs called PARP [or poly (ADP-ribose) polymerase] inhibitors looked like the answer.
But some tumors have been impervious to PARPs from the start.
Some tumors became immune to PARPs.

Dana-Farber scientists have been working on triple-negative breast cells using an enabler to boost PARP effectiveness.
One of these "boosters" is dinaciclib.

" with a PARP inhibitor and dinaciclib, 

tumors that previously hadn’t responded to PARP inhibitors stopped growing "

As a team, the two drug types can also work on tumors that originally had responded to PARPs, but had become resistant.

Also " the addition of dinaciclib had an especially dramatic effect: 

tumors whose growth had merely been stymied by the PARP inhibitor
 now began to durably shrink."

(Ovarian cancer is also mentioned in this article, but at the moment I don't see specific mention of Dana-Farber working with this pair of drugs on ovarian cancer.)

 "as posted in Cell Reports today"

I'm way out on the diving board with this cell process - suggest you get the TW link to the article, or
When I  just Google Dana-Farber right now, I get the whole headline of release..

Tuesday, November 22, 2016

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:   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.

Saturday, November 19, 2016


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.  

Monday, November 14, 2016

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  

Sunday, November 13, 2016

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.  

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

I just Googled MIT Technology Review Tissue Expander.

Sunday, October 30, 2016

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

Friday, October 21, 2016

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!

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):

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.  

Wednesday, October 12, 2016

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.

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

Tuesday, September 27, 2016

LIFE ON A SECOND OPINION midnight special


Read on Facebook stickit2stage4 today the fine 2nd opinion piece from Beth Caldwell  on her new hope for an incredible combination of rough diseases.

Wednesday, September 21, 2016

TAMOXIFEN - What does it really do? How is it really different?

Today I got an e-mail from   a CA Breast Cancer site I once supported.  One issue mentioned in the  "letter" from their Exec Director, was a study on aromatase inhibitors.  I don't take them, but I still glanced at her June 7 post.

She mentions the "San Antonio Breast Cancer Symposium which showed that extending treatment with tamoxifen reduced both recurrence of and death from breast cancer."  and mentions that she wrote about that symposium and the Atlas Study at that time.

I clicked the link to what she had written then.  And was dismayed to find this: "Tamoxifen is an anti-estrogen drug given to women with hormone sensitive breast cancer to prevent spread and recurrence."

 In fact, anti-estrogen is the opposite of  Tamoxifen--   

Pre-menopausal women get Tamoxifen because it does NOT destroy or prevent estrogen.

Here's what Tamoxifen does: 

Cancer Research UK:
Tamoxifen works by locking on to the oestrogen receptors to block oestrogen from attaching to them. The oestrogen cannot then stimulate the cells to divide and grow. "  (bold is mine)  

 For me, this is a very important difference, a vital difference.  At my age, if my body produces a bit of estrogen, I want to consider that that might not be all bad!  

So I refer you to what the Nat'l Cancer Institute says on hormone treatment and what SERMS like Tamoxifen can do. 

 "Most SERMs behave as estrogen antagonists in some tissues and as estrogen agonists in other tissues. For example, tamoxifen blocks the effects of estrogen in breast tissue but acts like estrogen in the uterus and bone."  

PS Even my oncologist mentions now and then that Tamoxifen is thought to have deposited some new bone on hips. And one of my hips is where I'm hoping for a little help with my osteoporosis.  


Tuesday, September 13, 2016

BELOW THE BELT - more about some parts that aren't working perfectly

I once had a need to pee too often.  It wasn't a doctor or nurse who saved me - maybe a book or magazine or friend said a magic word Kegel exercises.  Recently I'm having those urges again.

Why aren't my nurses and my Gyno handing out Kegel info as a sort of preventive move?  You can print it out on Mayo clinic - they tell if Kegels will probably help you and when they might not.

Maybe your complaint is not frequent urination, but something is irritating your perineum, and you don't want to hear about exercises until this is fixed.

In fact, I have both problems. I've learned several things can make our perineum very unhappy.  Mine has been unhappy before. A male doctor (and his nurse) listened to the perineum problem and clued me into what might work.?  They agreed that Clotrimazole OTC might help.  It did.  More recently, a Texas NP wrote me a scrip for a combination cream containing it. She said I could use it anywhere, but I DON"T use it inside the vagina and don't get it near my eyes.  Ever.

Also, isn't it possible that a hard-to-ignore irritation may start if we're taking tamoxifen or meds that completely stop estrogen production -- we've been gifted with our own Second Menopause, and our perineum is getting nothing. Hmm.  Ask your oncologist on that one.  Other patients may have noticed the same thing.

Furthermore - It seems when my perineum is irritated, I feel a need to urinate more often, and my pee-ometer (early warning system) in my head gets confused.

By the way, when more and more women started working, I read some reminders that we should empty our bladders completely instead of rushing back to work too soon.

Finally, As we get older, they say our senses get weaker - doesn't this include the sense that notices we may need to pee soon?  Should be maybe looking for the bathroom locations when we enter the building?

Infuriating hour-long phone conversations with the internet service taught me that I can retain a very full bladder longer than I think I can, if I must.  But I don't risk it for fun.

Ask your doctor.  Then ask her nurse.  Then ask your other doctor.  But ask before you exercise and before you use any medicine.

Wednesday, September 7, 2016


This is from Sunrise Rounds.  I get it on e-mail, but you can go to his website.


Posted by  on Sep 6, 2016 in End of LifeFeatured | 5 comments
An older friend of mine a couple of years ago said before she was convinced to go and live near her daughter:
"I wish I were doing something worthwhile."
Dr. Salwitz knows about this need.  I'm encouraged when even one doctor says he does know.


Wednesday, August 31, 2016

THE TEST FOUND WHAT?! And that, too, and that, and that?

Since I took RETHINKING AGING... out of the library, headlines on overtreatment have been catching my eye.

Twitter led me to this one.
When a Medical Test Leads to Another, and Another

 Yes, it opens up the argument- should patients be told of unexpected things that pop up during X-rays and other tests - things that may be nothings?  Things that may not be dangerous?

The two researcher authors feel we're over the line and giving too much information.

A sidebar gives us some info and a few percentages of what is turning up unexpectedly lately.  Lumbar spine MRI's for instance.  I already knew that my lumbar spine MRI showed a bunch of arthritis that I'm still dealing with.  Or dealing with more often.  Interestingly - it was a 2nd-opinion pain expert who told me about the arthritis.  The spine surgeon never mentioned it.

Also, you might be surprised by the many extra findings during diagnostic tests for colon cancer.

A lot of mention is given to unexpected kidney findings, and how urgent they could become if left for later.

This patient was reading fast, looking for the part where they would mention "immune system.."  Since Prolia arrived in my life, my immune system is on my mind.  Didn't find a mention of it.

Nothing has been solved here, but I am always glad when anyone pokes a stick into over-treatment and keeps it in the spotlight.

I wish you health.

Saturday, August 13, 2016

Twitter tonight --article on IORT (surgery including radiation) in San Diego area, CA

An MRI visual of a breast with breast cancer opens this article on interoperative radiation treatment.

Can't tell if the short article suggests this may be a newer form of IORT.  I wish I had all my other IORT text and refs at my fingertips, but tonight I don't.  I supposedly can't ever have a second lumpectomy because I already had too much radiation with The Boost. Whether that would include my other breast, I don't know.

So this may be info you already have.  But the text is clear and easy to read.

Copy or type this in your browser line and have a look.

I wish you health.

Tuesday, August 2, 2016

CAR T Coffee break

On Twitter today, Sloan Kettering offers info on CAR T therapy - may be new addition to earlier NYT article.

Monday, August 1, 2016

My New CC Dental Boot Camp - Do I have this straight? Can I keep at it?

Just saw a tweet from woman who lost a tooth from chemo.  She reminded me that I recently broke another tooth mysteriously (my only "chemo" - Tamoxifen,  but I also take the "jaw scary" Prolia for osteoporosis.)

Being a cheese addict, I love the part of the Cleveland Clinic regimen that tells me to end a meal with cheese.  The part I ignore is how much cheese.   My cheese addiction results make it a bit scary to get on the scales.

Don't have a pal at Cleveland Clinic to ask questions like:  After breakfast, Do I rinse before the cheese, since there is acid in the daily blueberries in my plain oatmeal?  Or do I just pop the cheese in first before the blueberries do me in?  Or do my teeth in?

Dental Floss should come packaged with a CD of favorite songs.  I still have GERD, so I try for four small meals instead of 3 big ones.  And I still remember the L.A. periodontist's instructions to floss after every meal.  So, floss.  Floss.  And floss.  That, of course, does not happen after my Saturday multi--grain bagel at Starbucks. Yet.

ONE bright light - I secretly think the tea they insist on makes my gums feel better.  Wishful thinking?

The secret seems to learn and do as much as we can of these preventives.  I haven't ever lost a tooth that shows (the dentist did fix the edge of that front one.)  I want to keep the rest of these teeth. Having a big gap in the front would mess up my mind more than I can tell you, and convince me I'm e______.

I wish you health.

Sunday, July 24, 2016

SAVING MY TEETH AND GUMS from Prolia? (and from my habits)

Even before the second Prolia shot, I knew my dental care was not working.     Desipite years with a periodontist, I had a broken tooth when I left CA.  He did teach me to floss after meals and watch the gums.  But then new problems sprung up here.

A TX dentist introduced me to Xylitol.

Then possible Prolia side effects sent me hunting for better tooth and gum survival.

Almost at once,  I found a gold mine of suggestions that make sense to me;
I landed on this Cleveland Clinic article:

Turns out  brush and floss are only the beginning.  Though the article is called Six Foods,

There are some other urgent actions to go with these important foods.

RINSE is one action:  WATER is nature's food, and so good for rinsing.   See below.

CRUNCH is action to stimulate saliva, and requires healthy CRUNCH FOOD- like carrots, apples, pears and other crunchies that introduce water into our system as we crunch. Even the very crispy leaf lettuce at my market.

 I noticed that my gums are the first line of defense.

Some gum-defense FOODS are:  dairy, fish, and Xylitol, and TEA.  Really.

DAIRY.   CC says dairy food prevents gum disease.   Yogurt has been in my life for decades; I still eat some most days (the one with no processed sugar.)

And I'm back to half and half in coffee (gives me a bit of a runny nose, but oh well.)  "Fat free half and half" is NOT the real deal; scary label.   In fact read labels on everything.

A tiny square of CHEESE (a half ounce) after a meal neutralizes lingering acid in the mouth.  I just have to learn to stop at "tiny."  CC says regular dairy products lower risk of gum disease.In gentler times every special dinner had a fruit and cheese course.  It wasn't just to please Emily Post.  Now we know it made sense before fancy tooth brushes and good floss.

Back to TEA, a surprise for gum protection!  (Another thing I had given up.)  But I had green tea on hand that I bought for an astringent.  Catechins in green tea (try saying it fast six times) may help with dangerous inflammation and avoid gum disease (just don't sit around with it; drink it and then drink a glass of water)

More on WATER,  to drink after caffeine and to rinse our mouths after anything we eat. Every time we eat.  Even after starch.  Just rinse.   I can take a water bottle into restroom after my little bagel brunch, yes, (even at Starbucks)  rinse in private.  Drinking more water now -  Not too much for my GERD) but enough to protect my teeth and gums in so many ways.

FISH for gums:  CC mentions some fish, saying omega-3 can "reduce risk of periodontitis."  Funny that LA perio guy never mentioned it.  I'm cooking some tonight.  Two or three servings of fatty fish per week.  You can get albacore in pouches at the market if you never want your home to smell fishy.

 I put my version of THE PLAN  on the fridge.  The dentist and the hygienist were happy about the ro cheese (yes, I know, calories).  Their only caution was:  don't spend too much time with drinking the  tea.  Drink and rinse to prevent gray teeth.

We can do this.

I wish you health.

Friday, July 22, 2016


Eating for dental health is not just what food and how much!  So says Cleveland Clinic article, and I believe it.

Stay tuned.

I wish you health.

Thursday, July 21, 2016


Had the second Prolia shot at noon.  No allergy symptoms.  I haven't forgotten that one Prolia side effect can affect my jaws.  All I can do is do better than I have so far in my new state to save my teeth.

Soon, a new post on my tooth-saver eating.  I'll give you the source and my dentist-approved version.

Hope you'll like it.

I wish you health.

Wednesday, July 20, 2016

Prolia vs teeth - Shot is a go

The doctor and the dentist decided I'm good to go.

 My oncologist says Prolia is out of my system much, much sooner than I read on line.   Hmm.  He says they want patients to have down time before the next shot, and I'm delighted to hear that.

Dentist looked over my new "save my teeth & gums plan" that's mostly from Cleveland Clinic. Thought it was good; he and hygienist both in favor of cheese for teeth and gums.  Luckily (I think) I love cheese. Now I drink tea and rinse quickly.  And rinse.  And rinse.  More on this coming up.

So tomorrow I march out in this heat and get the next shot.  The infusing dept. was so busy yesterday that I forgot to ask if anyone ever developed Prolia allergy after the second  shot.  I never find answers to such Prolia questions on line. It's too new, I guess, or something...

I wish  you health.

Monday, July 18, 2016

Prolia vs Teeth - Damned if I do, damned if I don't

I have never broken a bone. My spine, however, is bolted together in one place.  Many of my teeth have been filled or pulled or altered.  I came to TX with a broken tooth - since repaired. Then, after I'd been here for awhile, I woke up one morning with a sliver missing all along the side of a front tooth.  The dentist fixed that.

My new doctor sent me for a DXT  (no injection) bone scan.  My spine could not be scanned because of the bolts. Results: Osteoporosis in my right hip.  Not the worst, but definitely osteoporosis.

Six months ago, I reluctantly started Prolia to treat that osteoporosis and some osteopenia (almost osteoporosis) in the other hip. (My oncologist doesn't like the pills, and I can't swallow them for medical reasons.  Besides, don't like the way they act inside us.)

 I liked some of what I read on demosubab (Prolia.)  Like the fact it doesn't hang around in your system - is nearly gone at the end of the six months.

The first six months on Prolia haven't seemed to do me any harm.  But recently, almost  time for a new shot, some gum soreness. It took two dentist visits to discover a broken tooth in my upper jaw. Dentist removed the broken portion.

With my record of dental problems, I can hardly blame Prolia for that break,  And yet.  And yet...

The oncologist was not happy about that broken tooth--said I should check back with the dentist, who already knows that I have doubts about Prolia,

I left a message for the dentist.  He called me at home!  And asked if there was something less strong than Prolia that the onco could give me. No.  Turns out dentist has a patient on Prolia with an infected root canal. He will "carry her along with antibiotics" until the current Prolia cycle is finished.

I called him back for specifics:  If I get an infection in one of my root canals, I will get the same treatment. When that cycle ends, as long six months, he will remove that tooth.  I asked if he is reassured by the fact that none of my root canals has ever been infected. He wasn't enthusiastic. He insisted I get a note into my onco file saying that I have had several root canals.

The Prolia leaflet clearly states

 "Prolia is a medicine that may infect your immune system." 

Today  I may ask for an appointment with the dentist to check on a cold-sensitive tooth I've noticed for awhile, and the gum above my bridge.  I wonder if I'm imagining gum sensitivity there (I've known for years that stress can make my gums hurt.) Yesterday, I drank tea twice (more about that later). Today gum feels better. Will drink more tea.

Tomorrow I have a rush appointment to discus this with the oncologist.  Then, depending what they both tell me, I will decide to take the shot, or not.

If I get it, I suspect this second shot will be my last.  This stress is messing me up.

This seems so minor compared to the oncology waiting room full of very sick cancer patients.  But losing another tooth or part of my jaw (or the other side effects) does NOT feel minor.

Yes, it feels like like Damned if I get it, damned if I don't.

I have very few real statistics on how often denosumab failed on some women's bones.  I found this:

Long-term treatment of osteoporosis: safety and efficacy appraisal of denosumab
Athanasios D Anastasilakis,1 Konstantinos A Toulis,1 Stergios A Polyzos,2 Chrysostomos D Anastasilakis,3 and Polyzois Makras4Author information ► Copyright and License information ►  

Yes, some prolia patients now have more bone density.  Do I?

The most annoying part?  Medicare will almost certainly not pay for my second bone scan for another year.   So:

 We don't even know how well, or if, this stuff works on me.

 I wish  you health.

PS Tune in again later for my new, no-stone-unturned tooth care program.

Wednesday, July 13, 2016

CANCER IS CANCER - Do Not Say Baby Cancer to me!

Some friends of mine have or have had life-threatening cancers.  They inspire me in many ways, and I wonder how I would live with what they face and suffer through.

The differences between us are so big, that I catch myself wanting to "admit"

"I only had DCIS."

Even this morning, I want to quote somebody else's writing on how I feel or speak on this.

When I'm caught in that nonsense, sometimes someone else's reality gives me an elbow in the ribs.  For instance, right now I follow a woman on social media who had DCIS decades ago.  Perhaps she thought she was just fine afterward.  Then less than a decade ago, she found herself with metastatic BC.  

We've learned a helluva lot about cancer since I was diagnosed.  A helluva lot about DCIS, and the sense to ask probing questions about it.  And it's still not enough info.  And a lot of the info is not a comfort. And some of the info is still almost guesswork.  At least, now I know DCIS is not an "only." DCIS is not nothing.  Now I know that nobody really knows all that is going on in my body at any time.  

Right about here, I'm expected to say:  You never know what tomorrow brings, or Cherish every day, or some other cheery writing.  But let's be honest.

When I was diagnosed, someone said only "remember it's caught early and easily treated."  I wanted to say:  "Try it some time."  I wanted to say, "Have you every heard the voice on the phone say, 'There's cancer.' "  I want to tell them about the Recurrance decision aids on what I must do to keep it from coming back during the next five years!  Or ten.

If it's gone for good, I don't need a fistful of recent lab orders and mammo orders and research printouts.  Yet here they are in this fat red folder. Right next to the fat bottle of Tamoxifen.

Inside me, Hope says: The results so far show probably today I don't have BC.

What I will stop saying in that apologetic, diminished tone is:  I only had DCIS.

I wish you health.


Tuesday, July 5, 2016


No, it wasn't from speed-eating 2 Lara bars.

When I got on the scales at the doctor's office this morning, I asked to find my height. The nurse opened up her person-measurer, and told me to turn around.  Yikes!  I'm only 5'1".  So what, you ask, since I didn't have a modeling career in mind.

But I had calculated my body mass based on somebody's body an inch taller than I am.

Went home, keyed up the gov't NIH body mass calculator again.  Yikes!  If I'm only 5'1',   My bmi is then officially at 25.1 or overweight on the gov't chart.  After all that work to get the weight down and stay off the pre-diabetic list.  I never intended to lose even this much weight, so I guess one more pound is okay.

A little voice in my head wonders if I was taller before osteoporosis.  Don't know if my pre-osteoporosis height is written down anywhere.

The good news is, if I lose a pound, and don't get shorter in the meantime, I should be normal again.  I'll just be walking to the building library if you need me for anything.

OH, and Have you used this link?
 (Just in case  you're interested)

I wish you health.

Saturday, July 2, 2016

True Confession - Cancer and race-

Not long ago, I tweeted or re-tweeted an item on cancer death being more likely for black women. Several people were glad about my re-tweet.

My guilt is: that I didn't come forth with my objections to the article they saw:  I'm embarrassed to admit I no longer have the specific article that started the comment trail.  Don't even have, at this moment, the title.  But what I haven't said, and need to say is:

    I do NOT believe that the health system is structured for older white women.

  As an older white woman dependent on Medicare (a medicare supplement is just that - it doesn't pay when Medicare doesn't pay.  Medicare takes $ from my social security before I get it no matter what color I am.   And my supplement costs a big chunk of what's left of my SS, without asking about my color.)

 Who is the US health system structured for?  I think you have an idea every time you make a payment on your insurance.

Beyond that, we need to look hard at possible biases in the medical world, and challenge the biased to work on it.

The problem is not unknown.

I wish you health.

Monday, June 27, 2016

Lymphedema Treatment Act

Got an email that Breast Cancer Action's free webinar on the Lymphedema Treatment Act is this Wednesday.  I think you just go to their website tonight and sign on.

I can't sit still for webinars, but will try to forward notes on free ones...

I wish you health.

Saturday, June 25, 2016


Yesterday morning I was checking out of the oncologist's office.  Someone at the desk asked me how I was.  Just felt like telling them what I'd told the doctor:  I am no longer in danger of diabetes.  One of them asked, "What did you do?."  Told her I had lost weight.

So of course one asked, "How did you do it?"  So I told them some things about my food, like:

1. Almost no sugar, including no more than one or less Lara Bars, (My former basic food group.)
  No processed sugar.  (But also not much fruit sugar like Lara bars.) Not much of any kind of sugar. Read every label.  Read it again.  If it has sugar, the sugar must be near the end.

2. Breakfast:Forgot to tell them I cook real, plain oats every day and add half a cup of frozen blueberries.  Of course, I only add 2/3 of a teaspoon of sugar to the oats, but why scare them?

3. More Grains: Carefully (usually) Actually, I think I eat all day, but I lost 5 pounds in six months between onco visits.  Because of just what my former primary doc said: No processed sugar and NO
processed flour (so nothing white. No more beloved Croissants.) Multi grain bagels and Ten-Grain sandwich bread, best dipped in olive oil as restaurants do, or with my favorite roasted red pepper hummus.

4. Protein.  I buy a nice salmon portion three times a month.  Scrambled eggs, Little tuna packs, Avocado has protein, Beef 3 times a month.  Cheese (trying not to gorge on it.)  I get a hot whole chicken at the favorite market, and take off most of the skin (it sometimes has sugar in the spices.) Put that in recipes or eat hot one day, in salad the next.  Gotta get back into using slightly spicy greens.

5.  Spinach salad, leaf lettuce, tiny cut carrots, peas and more peas.  And I like Italian green beans.

6.  Eating out:  Thank goodness Starbucks has a multi-grain bagel.  It may have some white flower hidden, but the grains keep things healthy. Also, favorite Greek restaurant puts gyros meat on a salad. Going to bring home some tzatziki from the market. I could eat both every day.  Probably.

7.  I do drink coffee.  Comforts me in place of sweets.  Also, I have GERD, so I don't eat a lot of tomato, lemon, or Texas spices.

Then I told them about my two seasons with the outpatient PT nearby, and how they improved my balance so I can go down stairs without panic...

Short version:  When I cut sugar drastically, I got

You are no longer in danger of diabetes.  

PS  I am already 5 pounds thinner than my goal, and I don't try to lose more weight.  The object of my eating is to keep eating well, and stay OFF that prediabetic list.  

I am still in danger of cancer recurrence if I don't keep up my exercise.

I wish you health.  

Thursday, June 16, 2016

"Should Patients Record Doctors’ Visits?"

"Should Patients Record Doctors’ Visits?" Interesting from UCSF's

Clapping so loudly for this doctor's blog makes it hard to type.  Please read his blog for Wall Street Journal.  A great idea for patients with limited English.

In fact, I don't see why in some cases, the hospital or practice couldn't provide the phone or send the proceedings to the pt's phone as printed message.  What do you think?  Do you record Dr. visits ever? (I know you would never do that without permission.)  Except with certain ... doctors.

My only reservation might be that two of my doctors are really "my doctor who talks to me like a friend," and I don't want to disrupt that conversation/connection.

I wish you health.

Wednesday, June 15, 2016

Time without advancing cancer for any who can afford the price of a very good used car every month


    Breast cancer drug increases survival  Dr. Greg Wilson on Twitter

      palbociclib   PALOMA-2:  

The article is easy to read, and worth a read in spite of the pie-in-sky prices making the drug  unreachable for most.

Tuesday, June 14, 2016

BC: $ for lymphedema treatment

Act: The Lymphedema Treatment Act

Breast Cancer Action San Francisco will be having a webinar on this act.  I haven't had a chance to contact them about whether anyone can get the webinar or (my favorite thing) a recording of it to consult later.

I wish you health.

Saturday, June 4, 2016

CANCER - Making your own immunity? And a big clinical trial note

If you're not on Twitter, or missed it today, Sloan-Kettering had a simplified slide show you might enjoy:

"Not sure what Car T cell therapy is?  Watch and learn ..."

Just takes a coffee-break minute to watch.  If you find it too simplified, leave it on screen for somebody ...

This is not the first time I've heard of taking substances out of our bodies and putting them back in. We can inject a patient's own plasma-rich platelets for healing and for pain.
But Car T therapy is more than that.   Good visuals.

If you're not on Twitter, I also did find this by Googling

for more, see Sloan Kettering  "Karen's Story."

and PS:  MSK, in a press release/public info page said:
  • "We’re currently running nearly 100 immunotherapy-focused clinical trials."

I wish you health.

Friday, May 27, 2016

Bacteria worse than shape-shifters? Identity shifters? What not to do. MIDNIGHT SPECIAL

from STAT

"Superbugs for Dummies..."

This article is so clear - I learned a lot (scary and scary).  Exactly what can they do that other bacteria can't do?  That we don't want?

And I also salute the writer @HelenBranswell for giving us another elbow in the ribs:

We have to stop demanding antibiotics for diseases like colds, and
We have to stop accepting broad-spectrum antibiotics when a specific one is best and SAFER.
And another elbow about giving drugs to food animals is NOT just something we can forget.

We can't put these rotten bugs back in the bottle after they start to take over.

I think I picked this up first on Twitter.

I wish you health.

Thursday, May 26, 2016

Is Your Hospital "The One for cancer survival?" How can we tell?


On Twitter today: Good-looking graphics with a clear legend took me into the Memorial Sloan Kettering article from last fall on how we measure a hospital's five-year cancer survival rates.  You can access it from the TW post.    Their numbers indicate that one type of specific cancer hospital has better 5-year survival outcomes for cancer.

I had to look online for a definition of PPS. The hospital type with the best survival rate is exempt from the Medicare PPS system which is:

Centers for Medicare and Medicaid Services
May 19, 2015 - A Prospective Payment System (PPS) is a method of reimbursement in which Medicare payment is made based on a predetermined, fixed amount. The payment amount for a particular service is derived based on the classification system of that service (for example, diagnosis-related groups for inpatient hospital services).

I opted for a local hospital for my DCIS, rather than the "big name" cancer hospital "near my area."   I suspect mine may be one of Other...remaining hospitals including community hospitals.  I salute their outstanding outpatient surgery, but I don't know their cancer records.

Would I do the same again?  Maybe not.  I didn't want the "team" setting, which can be rather hard to manipulate if one seriously wants to leave a doctor on the team.  (Okay, I'm also a coward about driving to the big city.) 

See the graph an read the article:

I wish you health.

Sunday, May 22, 2016


I was at the front desk of one doctor's office when the voice mail came from the other doctor:

You're pre-diabetic.  Avoid processed sugar.  Avoid processed flour.  Uhhh.  okay.

I knew how it happened to me:  too many Lara bars, getting back onto the Ice cream.   Oh, and my croissant sandwich and croissant without sandwich addictions.

I had to get serious:  Have a plan.

Got on the web for advice.
 Lose 5% of your body weight.
Okay,  I had a secret target -  137 pounds.   Other women consider that number a good reason to hide indoors forever. )  But I had frequently weighted more than that, even in high school.  And at one job, I had gained 40 pounds.

Into Body Mass world and went right to the top guys:  the National Institutes of Health.

BMI Categories: 
Underweight = <18 .5="" span="">
Normal weigh= 18.5–24.9 
Overweight = 25–29.9 
Obesity = BMI of 30 or greater
Standard MeasurementsView Metric Measurements
Your Height: 

Yikes.  I was not only pre-diabetic, but even after losing five per cent, they call me overweight.

Ice cream went. (Memories of secret toffee chunk ice cream supper.)

I found a year-long program on line, decided it would devour my life.  But it suggested that I should

Lose 7 percent of my weight,  So I lost another 2% from original. 

My daughter got on board, and we all ate only coconut sugar and almost none of it.


Another phone from doctor's office.  Sugar still high. Desperate, I read labels as seriously as life insurance, focus on any mention of sugar.   There is sugar in everything.  Everything sour, sweet, hot. Crackers, potato salad. 

Here's my current plan:

Bananas or multi-grain bagel at Starbucks.
Half or less of a Lara bar per day.
No artificial sweetener (can increase our natural sugar hunger.)
Made sure that sugar was down at the end of ingredient lists.   
Dip 10-grain bread in olive oil.  Lettuce wrap sandwich.
I grind plain peanuts at my grocer's.  Helps with the Lara craving.

I put 2/3 of a teaspoon (that's teaspoon) of sugar and 1/2 cup frozen berries in my oatmeal.
I dip strawberries in a bit of the low-sugar coffee yogurt from my grocery.
My only wheat has loads of seeds & grains.
Did I mention I eat a banana? 

The B plan
Back up from the table (this one is still tough when the 10 grain bread is so good.)

The E word

Plug in the coffee maker and march out the door to walk at least 15 minutes.  (With my feet, 15 minutes can be plenty. )
I always park far away.  Lugging all this healthy food means several long trips to and from the car.

Luckily a doctor who didn't even like me hooked me up for physical therapy.  I actually did their  indoor exercises, hanging onto the back of my reading chair so as not to fall on my face.  I got more PT by saying  the word "balance" to my primary doctor.  Just like the bed-cercises I've mentioned here,   turns out you actually have to do the PT exercises at home. I did.

THE BEST PHONE CALL:  You are no longer in danger of diabetes.  

Nuff  said.
I wish you health.