Coming year

I wish you health.

DCIS - ultrasound after post-treatment mammogram

Still at the hospital after three hours with no news about my diagnostic mammo results or about why  I was still there. . .Hungry, ate four miniature cheese crackers.  No one knew how to work the space-age waiting room coffee maker.

Finally a staff member took me down the hall and into the ultrasound room. I was getting worried and asked her why I was there.  She was the tech. I remembered that ultrasound could help differentiate between my lumpectomy scar and any new problems.  I asked her about that and got a got a long  vague answer with "We do this all the time."

She made me lie down and open my robe, put on the gel, and started.  The scan took a long time.  She was pressing harder than I expected - had never heard that ultrasound hurt.  It did.  Since she was using a lot of the scanning pressure near the nipple, I also asked her if she could see the scar tissue from the long-ago surgical biopsy. I don't remember what she said.

She finally said she would give the results to the doctor. She propped me halfway on my side without enough to cover me, then disappeared. As I got colder and colder, I had plenty of time to wonder what they were deciding about me.  Lying on my left leg was painful.  Then she stuck her head in, said the doctor was with another patient.  Left again.  Perhaps they were having lunch?

I called out, but no one heard me.  She came back again.  I asked why I had to lie that way if the doctor wasn't around.  She informed me it was because the doctor would scan me and it was "for our convenience.'   I assured her we were way beyond "their convenience" and tried to pull out the lumpy robe under me and the pillow behind me.   I reminded her I was cold.  She got me another small towel and and another tiny sheet.

Finally the doctor arrived and apologized for the wait.  She told me I had a thickening area that hadn't been there before.  (Before what?)  She started scanning again near the nipple but also all over. I asked if she was seeing the scar tissue from the old surgical biopsy - told her that the entire nipple area had been taken out (later nicely replaced) and I didn't know how much other tissue.  She asked the tech if she was seeing the scar tissue.  Then the atmosphere seemed to change.  She soon stopped scanning, gave me the usual cautions, and let me go.

I think the doctor had had no idea about the old  surgical biopsy scars, in spite of the fact that the scar around the nipple is clearly visible to most medical people.  And in spite of the fact that I had that morning put the date of the old biopsy on the cancer/breast history at intake. I don't think anyone showed the history to her.

I got dressed, grabbed a tiny pack of cookies for lunch, and went back to the admission desk to get a copy of the history I had filled out.  The desk clerk went off in the direction of records. I was too worn down after four hours there to ask if the history had been dumped into records and never shown to the doctor.

Why am I telling you this?   In my case, a doctor urged me to tell the hospital administration my experience,  He also recommended another place to go for the next mammogram.

When I forget to take care of myself, I'm not the boss of my medical care.  I hope you will speak up early and often at the hospital.

Feel free to tell  your ultrasound experience here, in a comment.  I wish you health.

 

FIRST MAMMOGRAM AFTER LUMPECTOMY = What will it be like?

I had been told while trying to get the appointment that I had to have a diagnostic mammogram, not a screening mammogram. And with ultrasound if necessary.  I pushed the "if necessary" out of mind. The only difference mentioned on the phone between mammos was that results of the diagnostic type would be read the same day, with results ready for my doctor's appointment 2 days later.

My secret fear was that my scar would be mistaken for some new DCIS.  Okay, I also feared that judging from some mystery pains I'd been having, the mammo would be too painful.

When I arrived at the hospital, along with a couple of usual papers, I also filled out a medical history with questions of breast history, other cancer, family history of diseases.  This seemed like a good idea. One question was: dates of past breast surgery.  I put in the date for a long-past surgical biopsy ordered when the doctor couldn't tell if there was a lump.  Then added the date of my lumpectomy. I think there might have been a question about needle biopsy, which I'd had before lumpectomy..

They called me rather quickly after I got into a robe.  The mammography tech told me that a diagnostic mammo meant more films than usual, and two magnification films.  Several of them really hurt, but she only had to repeat one. She was very kind and reassuring, seemed capable.   She said she would show them to the radiologist.  I was sent back to the waiting room.  Didn't really hit me right then that I didn't know why the radiologist didn't send me home.

Very, very long wait.  Lunch hour passing. Finally someone left and I got a chair that was small enough for me.  Ate four tiny cheese crackers which of course had soy in them.

Still nothing. Nobody came for me . . .

 More about this in the next post.

BREAST CANCER - DCIS and. . . . new study: Does radiation prolong life

NPR Shots on the 9th published a new article on the Duke radiation studies.

                       Doctors Are Slow To Adopt Changes in Breast Cancer Treatment.

A Duke study in 2004 had indicated that radiation, for women over 70 with early-stage breast cancer, did not improve the mortality rate. They did not live longer.

NPR, in referring back to that study uses the word "chemotherapy."  Do they mean also adjuvant therapy like Tamoxifen?  Or what we typically call "chemo" now?

Why do I care?

I am in the over-70 age group.  

My DCIS was radiated, and I am on adjuvant therapy (Tamoxifen).  

No one mentioned "chemo" to me.

I took the Sloan-Kettering (MSK) interactive nomogram:

It only predicted DCIS recurrence, not years of survival.   

NPR then quotes a new Duke study and article announcing very little difference since 1994 in percentage of doctors radiating patients with these cancers,  Are there new reasons for radiating now?  Are they radiating women who before 2004 would have had chemo?  Are the odds of survival without radiation just too unclear and too hard to calculate?

This has been written and debated on the web lately:  Nobody wants to make a mistake by telling someone to wait and see.  And probably no one wants to be the one who says forget radiation - just in case.

Why did I get radiation?

My surgeon said after surgery that I didn't have to do anything.  

But he recommended I at least meet a certain radiation oncologist.

Said she wouldn't give me radiation unless I needed it.    

She overwhelmed me with statistics.

My pathology report made me fear recurrence

I need to learn more about the 2004 study (chemo or not) and the new one..

Please::  Send in your research, experience, or reactions as comments.

I wish you health.

Cancer Clinical trials #s, Cancer patients will watch research and vice versa

Ohio State University (OSU) Wexner Medical Center is getting a new cancer center, already popularly known as The James. The center is expected to open December 15. 

The headline of the Modern Healthcare article:  OSU puts researchers face-to-face with cancer patients, tells the story perfectly. 

It refers to one amazing new development: glassed-in research centers "on every patient floor" so patients will see real research in progress.

Since these researchers are not in ivory towers, but in glass labs, they will see the patients suffering with effects of, and existing treatments for, cancers that need research done well, and soon.


Also in the article are figures on clinical trials from Dr. David Schuller of OSU that surprised me: " 'Only about 5% of adult cancer patients participate in clinical trials. The National Cancer Institute has set a goal to push that number to 20% patient participation at cancer centers receiving its financial support,' "Schuller said. The clinical trial participation rate at the existing James hospital is 27%, he said.

Breast Cancer - melatonin, darkness, another study

If you missed the Tulane sleep study post, didn't agree, or are still curious:

Found this in USA Today article on breast cancer in the military, which branched off into their take on cancer causes...One was:

Shift work. "A 2012 study of Danish military women is just the latest connecting night-shift workers with breast cancer- for both those in uniform and their families. Researchers found those working the swing shift were 40% more likely to face diagnoses. They suspect the suppression of melatonin that comes with sleepless nights may also inhibit the body's ability to fight off cancer-causing cells."  (bold highlight mine.)
.
This reminded me that I haven't figured out how to alter my sleep mask.

Also reminded me that I can go back on melatonin.  The semi-monthly "time out" period is over.

I wish you health.

Breast Cancer and Pregnancy - article from Mt. Sinai

You may want to read this in Mt. Sinai's Medicine Matters web mag.

A Patient’s Journey Through Pregnancy and Breast Cancer

Posted on November 24, 2014 by Mount Sinai

In July 2013, Adele Rivas discovered she had breast cancer. Two days later, she learned she was pregnant.

They mention interdisciplinary meetings, which sounded like her care was probably well coordinated.

I wish you health.

WHAT'S APBI - part 2 of more than you may want to know about radiation

I find it hard to work through MD Anderson's website, but it inspired me to write about looking for info on APBI.  Here's the way I can usually get around the site. Google MD Anderson, sometimes the first Google choice says MD Anderson - Cancer Treatment.  Then on the site, I go immediately to the search box, and Type in radiation treatments.  If you get that, read the two types; then if you pick "accelerated" from the menu, you will get another page with info on APBI.  Or you may want to look at all the choices.

Yes, you can go to MD Anderson, type APBI and get the pretty picture and menu.  I didn't try backing up from that page to the preceding page with the explanatory material and the two types of radiation explained - you may already know that part.

For me, the most snarl-free route is just to copy the link below into my browser.

http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-topics/cancer-treatment/radiation/index.html

MD Anderson can explain things clearly once I find what I'm looking for.   But of course, other leading cancer hospitals may have other treatments that are used in new standards of care.  And conversely, other hospitals may not use treatment MD Anderson uses.  You can ask your favorite oncologist for places to find reliable, readable info on the specific treatments for your cancer.

I wish you health.

TAMOXIFEN BRAIN DOES EXIST - and a radical suggestion?

The day came.--the one we don't think will come until we're 90.   I forgot a friend's name while pointing her out at a party, and had to cover it up quickly.

Then last week, I had to leave my groceries and the nice insulated bag at the market, because I had driven over there without my purse - for the second time in my life. And I'd been thinking for days that I had already published this post.

By the April 18 post "TAMOXIFEN? or just overwhelmed? - Fuzzy thinking news" I was already wondering about brain problems, and I had been searching the web for more info all year.  What I came up with then was just some material on walking in nature to help mental overload in newly diagnosed women. So I went out an pruned some bushes.  And walked.

Yes, I'm not 29 any more.  Yes, I've been distractible for a long time.  Maybe always. This is not the same.  This is worse.  It is scary at my age because every time I open the laptop, someone is posting about who will get dementia, and when.

My oncologist explained at the last visit about mental health problems in the first six months of Tamoxifen--about how our bodies get confused by this medicine that acts like estrogen in some parts of the body (the parts that get uterine cancer) and acts against estrogen in other body parts where there are breast cancer cells. He told me this confuses the body, and for reasons like that, doctors call Tamoxifen the  schizophrenic medicine.

He mentioned depression and "craziness."  He said I was doing better than he anticipated.  Maybe that was because I was focused right then on aches and pains.

Those first schizo six months are over now.  They were over before that last appointment.  They were over before that day I couldn't remember that friends name at that party, when  I had started to mention her. But some effects go on.

I read Susan Gubar's blog: Living With Cancer:  Brains on Chemo, in the Times but I read it after these symptoms were worrying me - I didn't fantasize symptoms from her writing.  Her treatment, and her side effects are worse than mine, but I wanted to learn how she manages.  She adopted a phone and computer calendar/daily notes/system for things to do. Also small note pads around the house (which I've needed before Tamoxifen at times.)  You can Google her blog with the title in this paragraph.

So far the only real help I've seen for Tamoxifen brain is a vacation from the stuff, which in one case of a woman with much worse symptoms than mine, became a permanent vacation.

A Harvard mental health letter strongly discouraged several antidepressants for Tamoxifen users. I didn't find any help for fuzzy thinking on their site.

What keeps coming into my mind is a book:  Past Forgetting, My Memory Lost and Found, by Jill Robinson.  The author, handicapped by her amnesia, traveled long distances and tried every memory aid and exercise any doctors gave her.  Some copies of the book and a Kindle version are available if you're interested.

Meantime I'm drinking coffee for the depression, and doing exercises in bed including some the PT taught me, in hopes that being stronger will help me feel more tuned in to the right mental channel.

 And in a month, I'll see the oncologist again,

I wish  you health.

FEET HURT: SPINE FUSION OR TAMOXIFEN OR . . . as if we didn't have enough to worry about

It's very cold here, probably where you are, too.  I've been wearing so many clothes and so many covers, that I'm not moving around much when I sleep -- waking up a couple of days ago with slightly swollen feet.

For months, I've been making my own metatarsal pads and taping them to the bottoms of my feet to avoid foot pain - whether it's arthritis or so far, WHO KNOWS.

The physical therapist told me weeks ago that my socks were too tight . . .well, she was right.  But I need socks.  It's almost freezing here, for one thing.

Then at WalMart (no, I don't get paid for this)  I found something wonderful.  At least they're wonderful so far:  MED PEDS.  These socks (the ones I found) are not quite as tall as I'd like, but they have a sort of mesh knit around the tops that looks like any other socks, but is very gentle on the circulation.  And today, in a fit of daring, I just wore the MED PEDS in my old walking shoes (thunder storms forecast) and didn't need the metatarsal pads!  The soles of these socks are padded in two places.  Don't know why it works, but today it worked.

If you look around, you may find some that are a little taller, like crew socks.

I wish you health

BREAST CANCER - What's TOMO? and more than you may have wanted to know about radiation

Here is a possible place to look up specific definitions of some strange radiation therapy initials or words you may have heard from another patient or seen on Twitter or in the news.  This CUSF page does not specify use of any one or the other of these treatments for breast cancer.  It is rather a radiation glossary, dictionary, and better source than asking somebody next to us in the waiting room what radiation terms mean.  

http://radonc.ucsf.edu/treatment_programs/index.html
UCSF Radiation Oncology
Treatment modalities

I wish you health.

BREAST CANCER RISKS: finally "one-in-eight" explained

 UCSF mentions the age factor in their section on Bc risk,  Part of it reads:

"You may have heard the statistic that one in eight women in the United States will develop breast cancer. This does not mean that a woman of any age has a one-in-eight chance of developing breast cancer. This statistic conveys a woman's lifetime risk. This means that if a woman lives until age 85, she has a risk of one in eight of developing breast cancer sometime during her lifetime."

I don't know if their clarification comforts me or not.  Anyway, I'm in the group they say has the most diagnoses, so I'd better keep up my morning reclining exercises, my standing exercises, and the exhausting hunt for shoes that make my feet painless on longer walks.

I am not enthusiastic about all their links to other sites, but there is plenty of other interesting information on their site.  

I wish you health.

 http://www.ucsfhealtht.org/education/breast_cancer_risk_factors/index.html

This Isn't a Hangnail. Make up your d...minds what kind of mammogram I'm getting (a rant)

This has been way more phone calls than radiation and lumpectomy combined!  Thank Heaven I'm supposedly cured.  If I were working, I'd get fired for being on the phone.

"You need an order that says Diagnostic. If there's a code it will probably be OK.  No you don't  You need an order that says breast cancer.  No, you don't because there's a code on your order.  If you don't have it, you'll get a regular screening mammogram and the results won't be ready 2 days later when you see the doctor."

How is it that no one in the oncologist's office has never experienced these conflicting hospital rules.

This is after three non-returned calls from the hospital, just to get even a tentative appointment! (Turns out the local appointments person had been gone for a week.  Don't know what happened after she got back, but it didn't happen for me.)

If I don't hear by the end of the day, I will email an Oncology Nurse Navigator I've met.  See if she can straighten this out so I can make my other medical appointments and have a life off the phone. PS  Nurse navigator did not reply to e-mail. 

Finally the only hospital person whose name I know assured me that I'm down now for the correct mammo based on the code.  She is always patient; mentioned without scolding me that some of the women in the breast center are new.  Also, out of a clear blue sky, she said I'm on diagnostic mammos for 2 years.  Funny no doctor ever mentioned that to me. . .

   Please let me believe the mammo tech will not be a new one.  I admit I'm lucky that they have this new campus in my area.

I have to learn to ask every person on the phone: "Please tell me your name."  Then write it down. Maybe that will encourage them to go and ask someone who knows.

The Bottom Line:  It's up to me to check firmly once more before she gets hold of my breast that I need the diagnostic mammo! My responsibility.

I wish you health, and a friend at the hospital.

TAMOXIFEN OR LUMBAR FUSION - Two Years Later, Foot Pain

In 1911, as you may know, my leg and lumbar pain got worse after I tried to dis-assemble a drafting board.  Shots did not help.  Finally, the surgeon announced, "If you think that walker is a pain, how will you like a wheelchair?  You'll be in a wheelchair by Christmas if we don't do the fusion."  The nerves in the back of my right thigh had been giving me serious pain.  I had the fusion, and ten weeks later moved to Texas.

I didn't have a car when I got here, so I amused myself by seeing how far I could walk, at first taking a cane with me "in case."

Fast forward.  Sometime, I think early this year, my feet started to hurt. I began making my own metatarsal supports, with mixed results.

An NP sent me to a podiatrist who said that something in our legs can make our feet burn.  He also told me to get the NP to find me a rheumatologist. Arthritis was beginning in my toes.  I saw a custom orthotics man, who didn't reassure me for several reasons. 

 The rheumatologist told me I'd been walking on these feet for (never mind how long.)  He did arrange some physical therapy.  The therapist massaged lower back muscles that can spasm and grip on nerves.  My feet sometimes still hurt, and so, three of my visits there were exercising in a very warm pool.

Meanwhile, back at the doctor's office: about eight months ago, I started Tamoxifen.  A known side effect is pain, including muscle pain, so I never know if that's involved.  If my foot pain is different on different days, is it probably Tamoxifen? 

In the last week and a half, the foot pain is worse.  

This morning I found something that might interest you.  I looked up "Foot pain after spine fusion" on line. (Finally).  John's Hopkins has a giant survey that their fusion patients must fill out before coming in for followup.

It's just a "mark the little circles" survey.  Some of the questions might zero in on things you've wondered about since fusion, especially if you're disappointed in the results of your fusion so far.  And some questions address perception of pain. 

http://www.hopkinsortho.org/JHULumbSpineSurgeryGuide.pdf 
At the very end, I found directions to fill out the survey.  Click that link.  Should lead to:

http://source.jhmi.edu/Home.html

 You should get a screen with choices.  Click Survey.

I wish you health.

CANCER STUDY- Science takes another look at why some got well

The National Institutes of Health said it better about drug studies than I did:

"1-10% of patients respond well to drugs that do
not go on to receive FDA approval for that
indication"

http://deainfo.nci.nih.gov/advisory/ctac/1113/Precision%20Cancer%20Medicine.
pdf

In the past, some patients have had remarkable, sometimes long-lasting, response to test treatment - they are the Exceptional Responders (ER), but if they weren't over 10 % of subjects, the tests were considered failures.  Nobody knew why some patients did so well.

Now science wants to know.  And thus the new study: Exceptional Responders Initiative.   Some tissue samples are still available from early studies and there are samples available from non-tested patients. 

I wish I had a scientist pen pal to tell me what happened to some exceptional responders after the early studies ended.    Did some of them need the treatment again in later life? Were they unable to get it since there was no FDA approval?   But I digress.

To get back to this study:

For an easy, quick-read outline of the study, try the above reference or 

If you Google 

Exceptional Responders and NCI-MATCH Initiatives  deainfo.nci.nih.gov/.  

I wish you health.

 

CANCER: NEW STUDY: WHY DO SOME GET WELL? .

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.

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.

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.  

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.

NEW STUDY SUGGESTS BAG THE SOY. MY ONCOLOGIST IS RIGHT Reuters report

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.)

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.

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:

http://www.forbes.com/sites/matthewherper/2014/10/05/60-minutes-just-attacked-high-drug-prices-heres-what-you-should-know/

http://www.cbsnews.com/news/the-cost-of-cancer-drugs/

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.

Tamoxifen and bag the nightlights - Just ordered a mask

Just ordered a sleep mask on line from MaskCraft (because I didn't want the ones with a big strap and Velcro (I need the hair I have).

Cost almost nothing.  I'll let you know if it's good when it gets here.

I wish you health.

Post-six-months visit - Medical Oncologist says what?!

After a search for his new office, I went for another 3-month appointment with the medical oncologist.  Appointments with him are always pleasant.  This time I started a speech on how many new side effects I have since last time - especially my feet seeming to break down and age overnight.

He listened to a few complaints, then said:  You're doing better than I anticipated.

My whole body hurts and you say I'm doing better?

He repeated the better than anticipated part, and started to tell me about Tamoxifen:  "Those first six months. . ." and he frowned, waved his hand like shooing away a loud heckler.

"We call it the schizophrenic medicine."  I started to laugh, he started another sentence, I had to laugh some more.  Then: Tamoxifen, as you know, acts like estrogen on some parts of the body, not on others.  The body gets confused:  estrogen?  Or not?  Then the depression and . . ."

Yes!  The depression and craziness in the past months had made me think either I had fallen face-first into dementia, or I was suddenly ten years older.  

When I told a friend what he said, she felt he could have given me some clues earlier.

I think he hadn't wanted to suggest any extra side effects that I might start imagining.

The punch line?  I'm actually starting to feel a little more energetic at seven-months-plus, and able to organize, do more, decide more.  But it does require some coffee.

I wish you health.

FURIOUS ABOUT CARCINOGENS? Where does buck stop?

Read this recent Physicians for Social Responsibility article: you may get some ideas about where to put pressure on.

Arsenic in Your Drinking Water: How the Chemical Industry Influences Public Health Policy

I wish you health.

Tamoxifen: Run to the Ladies' Room - Hints

I don't know where I read about this, but I often do it:

Just stop and think clearly whether you must go right now.  If you can wait a minute, wait.  Keeps the running from being a habit instead of a need.  Very helpful in traffic jams, since women can't go in a bottle very well.

Also, with Tamoxifen:

Dryness and vague discomfort in my perineum sometimes send me to the bathroom when I don't need to go.  My Nurse Practitioner prescribed a mild anti-itch Rx cream, and said I could use it anywhere.  I double-checked with the OB/Gyn (who looked a little vague on the subject) but told me I could use it sometimes for this problem.

I wish you health.

Tamoxifen - evil constipation - important warning!

 JAMA Patient Page  Sept. 17

In an article on cautions for use of OTC laxatives, JAMA had slightly different categories than the ones I got elsewhere, and also this warning:


 "As an example, in January 2014 the US Food and Drug Administration (FDA) released a safety warning about OTC sodium phosphate osmotic laxatives. The FDA warned that in rare instances, using more than 1 dose in 24 hours of these laxatives could cause serious harm to the kidneys and heart, and even death."

Drink plenty of water for the sake of your intestines.  Eat something you like that will also bring water into your digestion - maybe really crisp head lettuce, cantaloupe, water melon.

I wish you health. 

Tamoxifen: Run to the ladies' room and other Below the Belt info

Some years ago, the doctor suggested actually using my estrace prescription to help with some frequent urination problems.

Now, no estrogen. Just Tamoxifen.

I scanned an Annals of Internal Medicine abstract of some recommendations for treating urinary incontinence (which includes some women having to pee when they laugh.)

A couple of aggravating risks mentioned were overweight, which some of us get on Tamox, and constipation, which some of us are battling now on Tamox.

Apparently somebody knows a mysterious therapy:  pelvic floor muscle training (PFMT).  I suspect that involves what we used to call Kegels, exercises that were supposed to help our sex lives.  Let's investigate Kegels, which I tend to forget about for years at a time.

After an exhaustive 3-second search, here's what I found:

Kegel exercises: A how-to guide for women - Mayo Clinic

www.mayoclinic.org/.../in.../kegel-exercises/art-20045283

Kegel exercises can help you prevent or control urinary incontinence and other pelvic floor problems. Here's a step-by-step guide to doing Kegel exercises ...

They really do tell you exactly how to find the right muscles and how to do the exercises.  There are a few incontinence situations this exercise may not help, but it could be a blessing for you.

It could even be FUN (read the fine print.)

I wish you health.

Soy-less bulletin

Sprouts has a wondrous, no soy on label, whole grain cracker  "Say Cheese."

Gluten Free.  And they don't taste like sick-woman food.

Tamoxifen side effects - Evil constipation

My computer just ate my whole post, so I'll start over.

First, I need to drink more water.  Second, more water needs to get into my intestines.  CVS has a private label stool softener softgel, but according to Mayo Clinic:  Stool softeners moisten the stool by drawing water from the intestines. Examples include Colace and Surfak.  Why can't my intestines do that by themselves?  

If you care even slightly, here goes.  There's a motion (peristalsis)our digestive tract does that carries food from the lipstick to the bathroom, so to speak.  One annoying authority claims some things including caffeine can slow this down--he'd better be wrong.  Face it, caffeine gets me out of bed when Tamoxifen wants me back in.  Also, it is said that when peristalsis slows down, my intestines take back the water that I need to keep things moving. 

BTW - Since we're advised to exercise a little each day, I suspect that moving the body around aids peristalsis.  Worth a try, since exercise is supposed to fight recurrence,

Back to Mayo Clinic:  "weakened pelvic muscles."  And so back to Phys. Therapy.  An exercise called the butt squeeze was taught clear back in acute rehab.  I often forgot to do it until the recent PT.  They have me squeeze my buns together  firmly while holding tummy in.  Hold for a couple counts, then release and repeat.  Work up to more reps.

About the lifestyle:  Some food, try melons, even head lettuce (not the half dead leaf kind the market had yesterday) can put more water in our meal. (I don't drink water with my meal.) 

Also, there's a reason our more elegant ancestors had a fruit-and-cheese course with dinner. So eat them together.

Last ditch fixes, hopefully before you're truly miserable:  CVS also has glycerin suppositories and dandy finger covers to use for inserting.  Read the directions; ask a doctor you trust.  

And there's the Fleet enema.  Don't wait until you need it.

Any comments?

I wish you health.

PT versus Tamoxifen side effects

Just finished my 10 Physical Therapy  sessions yesterday and got a certificate. When I left home for there yesterday I had a raft of pains and symptoms including constipation and just too-damn-tired.  But I went.
And I was beat when I got back.  Couldn't wait to digest lunch so I could hoist the big cat off the bed and take a nap.

I still feel like a sub-beginner in the exercise game and the muscle strength struggle.  (But guess my friend Rik's body-builder gurus are not the solution.  Insert smile face here)

Throughout the weeks, my Physical Therapist has done everything I want a doctor to do.  She remembered without being reminded that I've had lumbar fusion.  So, she advised against an exercise I asked about, suggesting that it might be hard on the joints adjacent to the fused vertebrae. (Since that is always a concern of mine, I was grateful she had it in mind.)

Now for our favorite topic.  Obviously PT appointments twice a week and the routine I do in bed in the morning are NOT the cure for constipation.  More about this on the next post.

What has that to do with PT?  I needed to know what PT will do for me and what it won't.  Now I can work on the rest of my "lifestyle." And I use the word style loosely.

One pain the PT insists is caused by posture, not pills, is leaning toward the laptop desk instead of scooting my chair all the way in.  She reminded: "Don't let me catch you leaning forward to the computer screen!" Luckily the touch feature lets me zoom when the occasional Tamox blurry vision gets me for a few minutes.

The PT assessment questionnaire had asked some "wrong" questions.  For instance, some asked about level of pain-and-difficulty.  I explained to her that climbing the library stairs doesn't cause pain, just exhaustion that makes the last 8 steps very difficult and slow  (worse since Tamox.)

Throughout the weeks, we discussed my inability to guess what back pain and various surprise pains thru my body might be Tamox, and which ones might not.  (I had looked up lower back pain and pelvic pain on Mayo Clinic Tamoxifen side effects.   Yep.)

For my balance, she started teaching me to walk differently than I have been. She advises feet further apart, (not as if I'm trying to walk a straight line.) (One PT back at acute rehab in CA also tried to work on that  but I had too many other problems right then.)  Also putting my heel down first on each step.    She also wants me to remember to swing my arms (which I'm sure I used to do .)

The main thing is that the PT company stresses teaching me exercises I can do at home forever.  Now I need reminders that a lot of Bc patients eventually neglect their exercises.  I don't dare.

Breast Cancer radiation once a week - as foretold

 

UChicago Medicine‏@UChicagoMed

Clinical trial using fewer radiation treatments for breast cancer seems to be as effective as typical regimen http://www.cbsnews.com/news/breast-cancer-patients-may-have-easier-treatment-option/ 

I wasn't too surprised to see this, since it was predicted on medpage Hot Topics Breast Cancer earlier. And I'm sure I wasn't the only one who wished it had been available when I was in radiation. However, I've told several people since then that I believed (and still do) that having Christmas and New Year's off was the best possible thing for me - mentally and physically.)
If I was right about that, then the once-weekly dates may help some people to get to work, or just recuperate a little and let their skin rest. 
Yes, I read the fine print (It's still the same amount of juice, just spread out.) And I know some people just would like to get it over with.
One more thought: Have you been reading about the Post-therapy Letdown? It's easy to believe that even I had some of that. After all, I had an active part marching over there every day,(that's why we ring the bell) and incredible support, comfort, and real friendship every day from my radiation therapists! Looking back at that experience, I know it was healing. I wouldn't give up that memory.
But for women who might not bond the same way with the caregivers, what if the one-day-a-week regime could keep life more "regular life" and moderate the letdown?
I wish you health.

Night Light vs Tamoxifen: 3

Yes, I am taking Tamoxifen at bedtime now.  Haven't got a sleep mask yet; haven't even found one to try on.

Breast Cancer and night light - more details and suggestions

Wondering why this night light vs Tamoxifen study wasn't all over the news, I followed the link from Tulane  http://tulane.edu/news/releases/pr_072514.cfm

to the cbc link:

http://www.cbc.ca/news/health/breast-cancer-drug-s-effectiveness-improved-by-sleeping-in-dark-1.2721567
By Anna Lazowski, CBC News

Lazowski also points out what was studied:  "In the latest research, the team measured how melatonin levels changed the effectiveness of tamoxifen therapy in human breast cancer cells implanted in rats."

In an interview with study head: 

"Hill said 'the timing of when breast cancer patients take their medication may be something to consider.  “The FDA has no guidelines on when during the day you should take tamoxifen. So take your tamoxifen at night right before you go to bed, and I think our study suggests that melatonin will turn off a number of pathways that would prevent tamoxifen from working.' ”

So far, I'm still taking mine before supper, but maybe I'll change that.

 The Tulane release deals extensively  with an interview with the head of the study. It also mentions the study has been in the journal Cancer Research.
http://www.aacr.org/Pages/Home.aspx  I have no indication that this journal article was peer reviewed.