Tuesday, September 30, 2014

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.

Sunday, September 28, 2014

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.

Wednesday, September 24, 2014

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.

Monday, September 22, 2014

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. 

Wednesday, September 17, 2014

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


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.

Tuesday, September 16, 2014

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.

Sunday, September 14, 2014

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.

Friday, September 12, 2014

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.

Sunday, September 7, 2014

Breast Cancer radiation once a week - as foretold

Clinical trial using fewer radiation treatments for breast cancer seems to be as effective as typical regimen
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.

Saturday, September 6, 2014

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.

Wednesday, September 3, 2014

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:

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.