MUST READ: Metatstatic Breast Cancer - A Patient is doing the research?!

A researcher is willing to mention patients!  And (gasp) insist that patients must be involved  in research. Okay, there is some small print here - Harvard may not be calling you and other patients you know just yet.  But her story is amazing.

http://bcsmcommunity.org/all-hands-on-deck-the-metastatic-breast-cancer-project/

Corrie Painter, PhD on work at Broad Institute of MIT and Harvard--

"My personal experiences with an exceedingly rare breast malignancy called angiosarcoma allowed me to peer through a window that included a lumpectomy, a mastectomy and chemotherapy, with none of the research or support that is poured into breast cancer awareness. "

What blew me away is that Broad advertised for a "professional patient."  

Please follow the link and read this for maybe a little hope.  Or Google BCSM - the article is in their headline today.  And if you like, check out her "boss" research head Nikhil Wagle, MD, on Twitter.

I wish you health.

BACK ON TAMOXIFEN - Cutting down to half dose

I had some blood work, and went in to see my oncologist for 30-days-off- Tamox appointment. The big question: Will I go back on Tamoxifen?

The first thing he asks is: Are your feet any better?  And I sheepishly say, Not much.

What isn't said is that I've had the feeling I'm "more intelligent" without Tamox.  Just a feeling the last week or 2 of the month off, as I watched myself react to things and how I've been able to plan or make a choice without that little white pill. I don't ask: Is there enough "brain difference" to stay off it forever?

Then he surprises me: tells me he thinks all the changes and new diets are good for me, waking me up--that he can see it in my face.  Hmmmm.  Nobody else mentioned a difference, but maybe I need another look in the mirror.  I was thinking the changes, tests, and diets were just tiring me out.

He asks if I have any Tamoxifen at home.  Yes.  "Break them in half and take half every day.  (They make a half strength one, 20 mg.)  Then come back and see me in three months."

No problem!  I have a pill splitter.  And I trust him.

Yes, I still have unanswered questions:  I've lost weight during my new anti-inflamatory and prediabetes diets while I was off Tamoxifen.  What caused what?  Will I stop losing weight now that I'm back on Tamoxifen?  No answers.

No crystal ball.  Just a great doctor who keeps track of me and comes up with good plans.  And fingers crossed.

I wish you health.

"YOU HAVE PRE-DIABETES" Yeah...I was afraid of that

You know you're in trouble when you're checking in to the oncologist's blood lab and the phone rings with a call from your other doctor's assistant:  You've got Pre-Diabetes.

But I'd suspected trouble. About a month ago they ordered a second blood test--blood sugar was a bit high.  (The assistant on the phone had used the word diabetes.)  I put off the second test for more than a week.  Between the thunder storms, endless paperwork about moving, and the oncologist giving me a month off tamoxifen, I had enough for one week.

Out in the car, I listened to the phone message:  "avoid processed sugars and avoid processed flour."  That was a good, simple way to get me started.  But my head thought... Freely translated:  lotsa luck on ever eating or drinking your favorites."

Climbed the library stairs (my regular workout).  They had a new book, about type 2 diabetes.  Nothing on Pre-diabetes.  (Of course, I'd already been all over the web, especially Mayo Clinic, after the first test.)

It was just to hot to go to the market, so I went home and read a lot of the Type 2 book.

   The lists and recipes seemed to allow a lot of exceptions to his rules.  He's pushing more meat (I need the protein,) more eggs (I need the biotin* and B12.) and endless non-starchy vegetables.  (I'd only seen three of them in my life. )  

The big motivator in the book was learning

 what high sugar may already be doing to mess up my eyes.

Bottom line, meat and salad and rivers of olive oil.  (Gee, I could get glamourous like the pretty women in the detective novels - dressing on the side just to look at, not to eat .) So no Greek yoghurt dressing?

Exercised.  Took some actions about regular mealtime.

Believe it or not, I woke up this morning feeling kinda happy.  It's a relief to know that Pre-diabetes is real.  It's not just another of the endless "maybes"  since I started the search for the right Texas doctors. Hoping the new diet will prove (slowly)  which fatigue and other symptoms are not Tamoxifen.

Into the kitchen, pour my beloved almond milk down the drain. My favorite yoghurt will probably be next.   Make some plain instant oats and throw in a dab of honey and some berries.  Make the coffee, save it to drink with a bit of half n half after the cereal (as the book insists.)

Coming soon:  grocery shopping and blood sugar

I wish you health.

TAMOXIFEN - A Month off?

My health was not marvelous before DCIS.  I came to Texas with a background of ailments, 10 weeks after lumbar fusion.  Before I felt “over” the spine issues, I got that mammogram and fell onto the “down escalator” of Do This, Do That.  No one said I could “wait and see.”

After the successful lumpectomy, the surgeon said, “You don’t have to do anything.”  But he gave me some names of two people he thought I should meet: The Radiation Oncologist gave me a hard sell, and I had looked at an interactive decision aid on line. I had radiation.

Afterward, the Medical Oncologist said, “You’re cured.  But we have…”  I told him I was interested in Tamoxifen.  I quickly got far LESS interested, despite his encouragements.

Recently, after about a year, I told him I just wasn’t doing well.  He asked me to tell him all about it (making him one in a million Drs.)  He talked to me for a while, then suggested I try going without it for a month. I smiled.  I hoped the month would settle whether Tamoxifen was causing my mood, fatigue, aches and pains, my sleep problems, and my swollen and painful feet that kept me from all the walking I’m supposed to do to stay alive.   

What is not better after 2 1/2 weeks' off Tamoxifen?  My feet still hurt at random times and when I wake.  I still have some aches and pains despite months of PTh for strength.  I still have headaches and occasionally wake during the night from muscle pains that Gabapentin hasn’t masked.  I still often have amazing fatigue, some of which may be caused by complications such as planning to move and getting a call about slightly high blood sugar from my GPs office. I often just don’t want to do anything. Depression?

What is better after 2 ½ weeks"vacation?"  I feel more intelligent (go ahead and laugh.)  Sometimes easier to remember where I put things, make plans, adapt.  Not so many pains.  My feet are less swollen, and I even forgot my home-made metatarsal pads for two or three days.   

The Tamoxifen-free month will end on my birthday, the date of our next Onco appointment.  By then I will have the results of my blood sugar test and of the labs ordered by my oncologist. It's hard not to think about them...

Right now I guess I’ll probably vote to go back on those little white pills.  But being a web addict, I still look for info on blood sugar and tamox.

I wish you health.

 Coming soon:  conflicting articles on Tamoxifen and diabetes

Please read this article, and plan to stand up for yourself.

On MEDPAGETODAY, Harlan Krumholz, MD, gives us his take on how our rights are neglected when we get that last-minute yellow paper to sign for the "informed" consent process.

"'Patients need permission to make a choice and

 to know that the choice is not pre-ordained.'" (Red edit mine.)

The article is short and easy.  My opinion is that until the system is fixed, we patients need to insist on info far in advance:

"What will I be signing and what are my other choices, 

and what if I don't sign when I find surprises in the form?"

http://www.medpagetoday.com/MedPageTodayat10/LessIsMore/51785?isalert=1&uun=g745835d4062R5912758u&xid=NL_breakingnews_2015-05-29

I wish you health.

Next post: a vacation from Tamoxifn

UTERINE CANCER, DANGEROUS SURGERY, AND US

This morning I lost my link to a new article on laparoscopic power morcellators, and haven't been able to pull it up again.  Hmmm.

You can go to the Wall Street Journal digital and see

FBI Is Investigating Hysterectomy Device Found to Spread Uterine Cancer

By JENNIFER LEVITZ  May 27, 2015 1:10 p.m. ET

This topic should not be news.  It certainly isn't new.  It’s in the news because the FBI came into the fray.  Last year I posted here about this – what the morcellator does, and how it drags those little pieces back through our healthy tissue.

 August 02, 2014

…about the doctor fighting with Brigham and Women's concerning his wife's unsuspected cancer and its spread in her body by power morcellation --breaking the tissue into small pieces for easy removal (and for ...http://henbacktalk.blogspot.com/clipped from Google - 5/2015

A nurse wrote to me once when I was worried about uterine cancer as a Tamoxifen side effect, and said “We’ll just take it out.”  How, exactly?

Just now I Googled: Atlantic Magazine suit Brigham and Women's over power morcellator spreading cancer and got several interesting article titles.  

If you don’t want to Google anything, don’t want to read any articles, just let me read an innocent looking tidbit in the Levitz WSJ article:

Many hospitals and the nation’s largest health plans

either have curtailed use of morcellators or are considering limits.

IT AIN’T OVER.  Doctors still use it.  The other health plans and hospitals let ‘em do it.  Like which health plans allow it?  Mine?  Yours?  Which hospitals?  

In my 2014 post, I was worried about hysterectomy because I took, and still take Tamoxifen.  We know the side effects.  We know the speedy answer to uterine cancer – goodbye uterus.

Yes, but only 2% will get it.  It will happen to somebody else.   Probably.

Why don’t I get with my cancer doc or GYN or somebody and put an ironclad NO Morcellator! in my phone.  In my health directive?

If the uterus problem appears, maybe put no morcellator on my hospital name bracelet just in case I’m anesthetized when the subject comes up.  I might forget to add it IN BIG LETTERS before I sign the permission for treatment.  I suspect they don’t read those anyway.

If you comment, bust me on that because I haven’t written it anywhere but here yet. .

I wish you health.

CANCER, PROTEIN, AGE - Finally good news for Over-65s

http://www.forbes.com/sites/alicegwalton/2014/03/04/the-protein-puzzle-meat-and-dairy-may-significantly-increase-cancer-risk/

Valter Longo, director of theLongevity Institute at the University of Southern California is the author of a recent study on effects of people over 50 eating protein.  People with high and even moderate amounts of their diets as protein were in danger of cancer, even death.  Including death from diabetes.

 And animal protein was targeted as a main danger, compared to mostly plant protein.  (How many almonds can you eat?) 

But here's the surprise:  People after 65 actually may need more than they've been getting.

There's a substance called IGF-1 that babies need to grow.  After 65, we make less of it, lose muscles, and become weaklings.  And the current study found that 

         people over 65 could reduce their risk of death with more protein.  

Now I get to the part that lost me:  Even with more plant proteins, there are limits.  
Dr. Longo suggests " 'about 54 grams of protein per day for a 150-pound person...However, going lower than that can be detrimental.' ”  

                  But does he mean for people 50 to 65, or for over-65?

Amazingly, even with my daily yoghurt, I was below 54 grams.  Easy for me to forget that yoghurt is animal protein.  Luckily there are things like my in-a-box split pea soup.  

I wish you health.