Wednesday, October 29, 2014


On 9/24, the National Cancer Institutes started a new study:  The Exceptional Responders Initiative. They announced that their purpose is to study " molecular features of tumors that predict whether or not a particular drug or class of drugs will be beneficial."

Early this year, if you read medpage Hot Topics: Breast Cancer 2, you saw some early concern about different features of the tumor itself. 

In May, I referred to that Hot Topic:  "watching HOT Topics, Breast Cancer 2014 Part 1. The doctor who impressed me so much, Lisa Carey, MD, told us that some breast cancer cells are looking more like other cancer cells ..."

Now NCI will look at which cancer cells will respond to which medicines.  I think of how many women have been given so much expensive (and repulsive)  cancer treatment medicine that didn't work.  Will we now learn a reason why it didn't?

In the past, the NCI release says, studies have been scrapped if less than ten per cent of patients got well.  If a few subjects did very well, nobody was sure why. 

For this study, an elaborate system will find, protect, and isolate samples of cells from reliable records of exceptional outcomes.  

I wish them wonderful findings.

I wish you health.

Wednesday, October 22, 2014

NEOADJUVANT THERAPY: Wading into Breast Cancer Terms and wondering

I've seen this term neoadjuvant therapy tossed around from time to time.  Most recently, a couple of mentions of Tamoxifen given before surgery sort of slipped by me. (My DCIS was small enough for lumpectomy, and I didn't need restoration.)   I didn't find anything in the Mayo Clinic Cancer Book except an incomplete definition.

This week I followed a link to the (AACR) American Assn. for Cancer Research Cancer Progress Report 2014.  (If you're still awake after all that, here are some excerpts.)

From the report Glossary: Neoadjuvant therapy

 Treatment given to shrink a patient’s
tumor prior to treatment that is intended to be curative,
which usually includes surgery. Neoadjuvant therapy may be
chemotherapy, radiation therapy, hormone therapy, targeted
therapy, and/or biological therapy.

"...the FDA outlined a new path for
regulatory approval of breast cancer therapeutics in May
2012 (107) "

Then they send us to a sidebar that tells us many patients are treated with traditional chemo or molecular therapy chemo to reduce the size of the tumor so that it is operable, allowing  breast restoration.

If there is no residual invasive cancer afterword, they mention a correlation with long-term survival.  Judging by the title of the sidebar, the FDA is using likelihood of overall survival to make their decision to approve new neoadjuvant treatments.

Disclaimer:  I am a patient, not a scientist. This is what I got from the report, and I do not hold the AACR as the top source for this or other information.

I wish  you health.

Friday, October 17, 2014

THIS AIN'T A HALLOWEEN MASK and other Bc studies

Before we forget about the Tulane study on total darkness and Tamoxifen, a few updates:

I sent for a sleep mask, since there is light from the window and coming in around the door (and my stupid flashlight glows for a while after I turn it off.)  Anyway, the mask is TOO small, and I have to rig up some kind of gentle extension for the elastic that won't pull out what's left of my hair.

I did change my Tamoxifen pill time to bedtime, and I'm still on Melatonin, which was mentioned in the Tulane study in relation to our safe, deep sleep.  But every two months, you're supposed to go off Melatonin for a week.

Then, MNT Medical News Today online had a story Oct. 8 about a hormone study.  I won't go into the technicalities except their bottom line - a very cautious suggestion that we take our cancer pills at night because one day-time protective hormone is not active at night.

No, I'm not a scientist (you knew that) and these were cautiously written releases.  

But I'm going to keep taking Tamoxifen at night, and hoping the good Halloween fairy will think of how to make my sleep mask fit.

I wish you health.  

Monday, October 13, 2014

What new test!? Whaddya mean more meds? ASK THESE 3 GOOD QUESTIONS

Beware your doctor’s knee jerk reflex: 3 questions to ask  

David L. Katz, MD  Physician  September 3, 2010 in Kevin MD

I was able to Google this by typing in Knee Jerk Kevin, MD.   I encourage you to read the whole thing - it's clear, short, and to the point!

1. Always ask “why?”  (It might get my Dr. to think it over. . .)
2. Always ask “what else?”  (I definitely should have asked this over the muscle relaxant conflict)
3. Always ask “then what?"  (Thank Heaven I asked a 'then what' on the latest sore back Rx: Will I be okay to drive when I take this? His answer was No, take it in the evening."  No way am I getting up at night for the bathroom with anything like that in my veins, thanks.) .
"Clinical assessment that includes a test of the knee jerk reflex is fine. Clinical decisions driven by it are not, but they too, are out there. Forewarned, I hope, will prove to be forearmed." Dr. Katz in Knee-Jerk article.

Saturday, October 11, 2014


If you only read part of this Reuters article, read the last line and the doctors involved.

Reuters Health US  NEW YORK TUE SEP 9, 2014 6:17PM EDT 
A high-soy diet may drive breast tumor growth : study

 We have been bombarded with articles and broadcast segments assuring us that soy is alright.  When I Googled this article, I also got a string of other links that were pro-soy.
As I’ve mentioned here, my oncologist said at our first meeting:  “If it says soy, run.” 
And I have an oncologist because I had DCIS and it was estrogen dependent, like the majority of breast cancers.  Now I will be taking Tamoxifen for years for its estrogen-blocking effects.

My diet had been loaded with soy from menopause on, because I did have some hot flashes then, strangely enough when I didn’t eat on time.

My primary doctor had suggested soy to ward off the hot flashes.  I became aware of women telling each other that soy would help.  I bought the soy milk in half gallons, and it had other benefits because cow’s milk and ice cream irritated my sinuses.  In other words, milk gives me a runny nose.
Then I got a job with no real lunch hour, and started keeping soy bars in my desk, where they could be quickly hidden if a client came in. I really, really liked them. 

This went on until I saw my pathology report after lumpectomy.  Hormone-dependent.  Darn and other words to that effect.  I started tapering off soy before I even met my oncologist, because I knew I had been taking it for the phytoestrogens (plant estrogens.)

The Reuters article came as a relief in some way.  All this new label-reading is for a good reason.  I respect Memorial Sloan Kettering and Georgetown. Both men quoted were very conservative in their statements. No, lights and sirens, no scare tactics, but Dr. V. Craig Jordan of Georgetown, said ‘“For populations of women with breast cancer, soy products aren’t good,”’

I feel more secure after reading this.  Read it. Then decide what’s right for you.

I wish you health.

(PS) The title says "finally" but I just noticed that last winter Sloan Kettering had an article on this issue, which I mentioned in Febr. HEN BACKTALK

(PPS.  I'm not sure of the timing on this.  MD Anderson Center of Houston has a press release on line saying V. Craig Jordan would be joining them this month.)

Tuesday, October 7, 2014

WOMAN'S PLAGUE redux (slightly updated)

 In honor of breast cancer... month, I'm re-running this post from a former year

WOMEN'S PLAGUE Still grasping at straws

Tuesday after leaving the surgeon's office, I looked up Breast Cancer Action SF, and read an essay by a woman who had done everything right and found nothing had changed:  No Cure.

This morning, her words were still in my head, and I remembered attending a reading years ago of James Engelhardt's play, Rattus Rattus.  It is a story about The Black Plague or some other plague that nobody could cure.   It seems people of the time were carrying nosegays in front of their faces, perhaps to distract them from the smells of death, or perhaps to ward off the possibility of the disease attacking through the air.  I'm sure the flower vendors had a thriving business.  And in spite of the fear and the death, somewhere in the background I'm sure a jester was singing:

Ring around the rosy
Pocket full of posies
Ashes, ashes
We all fall down.

Now centuries later we're pretty sure posies won't do it.  Yet instead, we carry around pink ribbons on our cars, our clothes, our gifts, our jewelry.  And there is a thriving business for vendors of anything with a pink ribbon on it.  Even on a mammogram machine!  But to be sure their business was thriving, until 2000 one company  that manufactures breast cancer medicine also manufactured a carcinogenic herbicide, acetochlor.

Hospitals give us literature for "runs" and "walks" from companies that won't tell where the money went, and from companies still manufacturing products that may make the plague worse.

We run, we walk, and on Mother's Day, we remember the ones the pink ribbons didn't help.

Too many still fall down.

Monday, October 6, 2014

IT'S BREAST CANCER MONTH - Blow the whistle on big pharma, FDA, and chemo copay

The unspoken:  one of the first problems a Bc chemo patient on medicare is going to have is losing her doctor!  because she can't pay for her inflated-price meds plus the couple hundred a month for her Medicare PPO supplement.  A friend from LA lost her chance to continue with my beloved PC doctor because she lost her Medicare PPO supplement.  And a visiting PT advised me:  Have the surgery now, while you can afford the insurance!  But some patients could afford their insurance if the price of chemo had not been inflated beyond belief.

Here are some facts  and some people fighting back:

Don't let the doctors mentioned in these links fight big pharma alone.  Call a congressperson.  Email the White House.  Be heard.  Order a bumper sticker.  Yell on the sidewalk. Tweet.

Some of our sisters are too sick to march on Washington.

I wish you health.