Sunday, April 7, 2019

BUT THEN...What the.....



 All thru February, I'd been inching slowly back up from the goal weight I had reached.  And I'd made a note at times that my ankles and feet were swelling.  But mostly no after-Tamox problems.

Somewhere along in there,I had seen my family doctor, mentioned the ankles, told him I was retaining water.  I wasn't ready for water pills; told him and my lab tech that I was using the drinking more water cure, keeping hydrated.

Read my trusted parts of the med advice on the web, took notes

March 1
Asked family doctor if he had any really mild diuretics.  He phoned in Rx for a thiazide pill, my secret choice, for 90 days.  Guess there's no instant cure.

Promise I'll let you know if something happens that isn't water but that could be Tamoxifen.

I wish you health.

Monday, April 1, 2019

ONE MONTH AFTER TAMOX

This is not an April fool!

After I stopped Tamoxifen at the end of February, life got way too busy, and I didn't have time to feel abandoned, uncovered, unprotected, or anything.

When the shoulder  and back of neck pains started, I couldn't remember anything quite like that when I was taking too much Tamox.  I did remember finally that years ago in rehab, they said that even my purse was too heavy to wear on my shoulder.  Now I'm learning to carry groceries like we used to carry them in bags - sorta like carrying a baby.

Bottom line this far...I can't blame Tamox or leaving Tamox for anything.  (And yes, sometimes I still look right at my phone and can't see it, and I still leave my keys in dumb places as I did decades before I ever heard of Tamoxifen.)

I wish you health.

Sunday, March 17, 2019

After Tamoxifen. Something spooky. MIDNIGHT SPECIAL



They're back!

Those scary looking red blobs under the epidermis.  Had them all the times in recent years.  Age ago, the oncologist told me big guys would come in with them, looking as if they'd been beaten up.  But somehow we'd get onto another subject and I never got him to narrow down on what they were or what caused them.

I coasted along, assuming that something...Tamoxifen or maybe Prolia...or both...were attacking my veins or capillaries.

Then in the past months, I almost never had one.  It sure wasn't less stress fluffing up my veins.  Recently, sometimes I didn't have any.

This week?  They're back..a couple big as my little fingernail and bloody-looking.  What is this?

Short time out for quick Google search, which I was planning weeks ago...

Didn't find much of anything.. platelets mentioned..but.   My labs from the oncologist were usually so good he was delighted.  My labs for other tests (from family doctor) are normal. 

Have you had these?  What was the diagnosis?  I don't see the oncologist for a year....so...?

I wish you health.

Friday, March 15, 2019

Half a month without Tamoxifen


HALF A MONTH WITH NO TAMOXIFEN:

Do I feel better without it?  Uh...No.  For one thing, we have measles in our area.  I remember Chicken Pox (Mom concerned about our eyes. Put us kids together in one room, etc,.)

Measles?  Nothing.  So I brooded.  Doctor offered the test.  Oops! Not immune.  Got the shot (not painful) but I have to wait six more days  before I can feel sure I'm immune.

So far, as to Tamox, I don't have muscle aches and "remembered after-effects" that some women have had.  So will that last?

So far, not scared into wanting more Tamox.

But:  It's been clear for years that oncologist was not correct when he told me I wouldn't have that tummy bulge he has.  I have it.  Did I get it from Tamox?  Who knows.  I was often lazy during those five years.  Now I'm collecting exercises for that bulge and more.

John's Hopkins has a giant pack of health handouts for diabetes, but I'm interested in the part: "The Skinny on Visceral Fat ... stored deep in the belly is the most harmful kind." There's a bit on exercise.  I'm having laptop trouble switching back to that, but I usually just ask Google for John's Hopkins exercises for visceral fat.

Okay, doctors and patients:  what's your experience with anyone being BETTER after leaving Tamoxifen?  How long will it take?

I wish you health.

Friday, March 1, 2019

FIRST DAY WITHOUT TAMOXIFEN Midnight Special



Spent a lot of time with my family doctor trying to clean up a few problems.  He is being great about seeing relationships of one or two probably minor problems to each other and what to do.

We didn't even mention Tamoxifen.  But my younger daughter talked with me on the phone and tactfully inquired about how a woman my age could really have any loose estrogen wandering around to get in trouble with a breast cell.  I read a little about that on line last night.

Don't let me get started waking up mornings hoping to find out if I'm "better without it" already, as the oncologist suggested was a possibility.

I have a lot of blessings to be thankful for, and a new prescription as a sort of flag for  starting over.

I wish you health.

Wednesday, February 27, 2019

TAMOXIFEN - TWO MORE DAYS



Tonight and tomorrow.  Then dispose of the rest of the Tamoxifen.

A certain anxiety around having no scheduled appointment with my onco for a year!  A head nurse in the infusion dept. looked so happy as she said quietly, "You don't have to come back for a year!" She doesn't get to say that often to any patient in there.  I should do a gratitude dance about this.

Took melatonin again last night - afraid to take my old standby gabapentin with it, since I need to wake enough to get up several times a night for the bathroom.  This is complicated.

Have I really made my home and my days ready for life without Tamoxifen?

  The light-proof b.r. window covering is showing its age, leaking light on the Texas pre-7-am sun mornings.  Once I get a safer step stool and a good tack hammer I might be able to do some curtain fixes.  Right now I'm not venturing out to buy tools or anything but food - not until I get a measles shot.

Earlier in the week:
Only spent one night with Melatonin.  Woke even oftener than usual.  Then took Tylenol to sleep.

As I've been digging around on line, I see some sites and big organizations are not as convinced as I am  about the Tulane Study conviction on melatonin with sleeping in the dark..  Some sites refer to "very early" studies, etc.  But several do advise sleeping in darkness. As I will.

Then Friday, I can start watching for signs that the Oncologist was right--that I may "be better without it."

I wish you health.

Remember, do not buy any medicines without consulting your doctor.

Friday, February 22, 2019

PART 3 WINDING DOWN tamox HOPE during and after.


What will I do for hope, comfort, protection after these last few days of Tamoxifen?   

A year or so ago, a Tulane U press release landed on my screen. And in my life. Reaching for Delete key (who are these people, anyway??)  I saw the name of the stuff that helps me resist BC tumors- Tamoxifen.  And I kept reading. 

It was about a study in  CANCER RESEARCH.   Tulane U  Circadian Cancer Biology Group had wondered
when Tamoxifen could work, and 
what could stop that work.  

Specifically if Tamoxifen can keep away BC tumors while we sleep, and if not, what might interfere?

THEY  put breast cancer tumors into some rats. First they tried rotating sleep periods of light and darkness for the rats.

Then, later, during the dark phases,  they gave rats a night-light, faint but enough to suppress melatonin. Melatonin when alone allowed growth of tumors.

The press release summed it up:

Tamoxifen caused dramatic regression...with

1  high levels of melatonin during complete darkness" or
2 with melatonin supplementation during dim light at night 

BUT
 "When lights are on and melatonin is suppressed, these breast cancer cells "wake up" and ignore Tamoxifen. 

So, what can I do with "high levels of melatonin (some added and some produced by my body in sleep) plus TOTAL DARKNESS FOR SLEEP?
I have more questions about this, but I knew I had to sleep with NO light to keep my body producing melatonin.  ( What about warnings I get not to take melatonin every night forever') 

My plan:

1. My daughter brought over some dark felt and made a pretty curtain to cover my  floor-to ceiling venetian blinds window.

2.   I got some melatonin. I have taken it at times in the past.    So maybe, I will even add some melatonin in case morning light defeats the felt curtain, and I need more sleep.

3. I even removed the kitchen night-light,

4. and finally shut the bedroom door tight. to keep out light from adjoining rooms.


Once, my boss's client announced
  her bedroom curtains must provide absolute darkness!
She had the money, and she got her wish
 That client was onto the wave of the future.

Now more and more people and groups advise sleeping in darkness. 

I wish you health.


Remember:  Do not buy any medicine without consulting your doctor.