Is it the Tamoxifen? Or estrogen deprivation? Or what?

My wonderful L.A. mechanic used to say:  We're not 29 any more!  And everyone used to say if you're over 40, you woke up feeling worse in the morning than when you went to bed.  I'm way past 40.  But they didn't say you would walk toward the car one day and suddenly think: 

I feel ten years older! 

This morning, making coffee earlier than usual, I felt for a minute as if I would just crumple down on the spot and sleep.  It reminded me of an awful lassitude I once got from Codeine, but now it's something else.  What?

And I walk older.  My tutoring client insisted on carrying some of my books--I think she could tell by my face that I'm not energetic or comfortable.

It's not three months yet since I started Tamoxifen.  Sloan Kettering's site on Tamoxifen was not comforting. Still need to see ophthalmologist and dentist, and probably podiatrist again.  All this doctoring can keep a person from feeling healthy.  

Two weeks until my blood work.  Three weeks until I see the medical oncologist.  

I wish you health.

Now On Tamoxifen, so I insist on a gynecologist. . . first visit

This is not the first time I've been referred to one doctor and ended up with another.  Funny thing is:  so far I've liked the "unexpected" doctors and liked the NP I didn't expect to meet.  And I like the doctor I saw Tuesday.  The office decor was upscale, and go ahead and laugh, but it seemed hard to feel sick there.  (Maybe a little psychedelic to be among all those enlarged baby photos.)

She did a pelvic exam and listened kindly and respectfully to my history and concerns about Tamoxifen side effects.  Apparently she is not new to the Tamoxifen regime, saying that later, as the oncologists saw me less often, she would rotate appointments with them --see oncologist, then in three months see her, etc.

Then last night I realized there was no evidence that she did a Pap test!  I don't know whether it's worth calling to ask why she didn't?  (Most of the moments I hate most start with these decisions about whether to call a doctor with a question.)  

 And so, in spite of a major GYN shortage here,  I have one I like so far, who knows me.  And another health area that was neglected during spine and DCIS treatments is no longer neglected.

Bottom line:  she thinks I'm okay right now.

I wish you health.

TAMOXIFEN AND MY "DUH" MOMENT

It took several days.  Maybe a week after I read that manufacturer leaflet that said Tamoxifen doesn't prevent all kinds of breast cancers.  No, in fact it took the whole time since I read my pathology report. Today I finally got the point.

Since Tamoxifen just stops estrogen from binding with breast cancer cells, it can't do anything about cancer cells that are not estrogen-dependent.  That also explains a few statistics in the Mayo Clinic Breast Cancer Book about mortality from "other cancers."

Maybe I need some of that required nature walking (as soon as we're past the flooding this week) that has been prescribed for directed thinking.  Right now it's nature wading.

And also when the rain stops, I probably need to return this wonderful exercise mat that contains substances "the state of California considers carcinogens."  Protecting the immune system is a lot of work.

I wish you health.

A PHARMACIST is not your mama! Read everything. Check. Really.

My pills (and lotions and potions) are one area where I try to be organized.  Every weekend I fill my ultra deluxe pill organizer.  Blue lids on one row of compartments mean pills I take at supper time or bedtime.  Yellow lids mean take those pills in the morning.  (One of them way too long before breakfast.)

The drawer with pills in reserve seemed to have too many pill bottles.  I remember that last weekend the pharmacy department filled a couple of other prescriptions to save me a trip later.  (They reminded me that they had called about them.  I often ignore calls from them--they just call too many times.)

Still, I was lining up these bottles and an alarm kept going off in my head.  Something is not right!  Finally, finally found the problem.  The levothyroxine label was on a bottle that the manufacturer, luckily for me, had pre-marked Omeprazole.  And the Omeprazole label was on the bottle that obviously contained levothyroxine--I've taken it so long I can almost identify it in the dark.  

Everybody makes mistakes.  I make them.  Doctors make them.  Hospitals make them.  And pharmacies make them.  

Who wants to go over to the chairs, open the bags, deal with all the paper and staples?  I'm often in a hurry.  I don't see the actual bottle until I get home, and I'll bet you don't either.

This label mistake wasted my time, but was not huge problem.  No emergencies were caused.  But I had unpleasant medication problems two years ago in a hospital.    They left me with an ultra-sensitive mental alarm.  Shouldn't you have one, too.? 

I think I need to show these bottles to the pharmacy.  Without anger.  

And I need to read every leaflet with every new Rx and refill.  Starting with the description of the pill.  Did I read the description of the Tamoxifen pill before I took it?  I don't even remember.

And by the way, I'm training myself to read the rest of the leaflet, too.  I do know that the druggist and/or the manufacturer will mention new cautions for the medicine on the leaflet, not always on the label.  

I wish you health.

CANCER NURSE NAVIGATORS: I had no idea!

The nurse navigator at my hospital (the neighborhood hospital I've had plenty of "opportunities" to use) is a delightful person.  She took my bp one day that I was due to see the oncologist during the radiation sequence.  And I saw her again accidentally in the surgeon's waiting room.

The surprise is that I didn't know at first she was a cancer navigator, and the cancer center didn't mention that someone like her was available.  I've already blogged here about my experience with cancer center social worker, so we won't go into that again.

This morning, one medical news service I subscribe to used the word "Navigators."  I finally deduced they were talking about "navigation" advisory companies.

But of course, I had to look up hospital navigators, including at my hospital's local branch, and find out what they do.  I was amazed and a little annoyed that our cancer center never mentioned her.  

I learned that Cancer Nurse Navigators can help with decisions as well as logistics and coordination and that wonderful component - support.  I had simply gone to "meet" the radiation oncologist my surgeon respects, and was presented with the decision at that first meeting.

Of course, my DCIS was not life-threatening.  Because of that, the cancer center did not seem to realize I was new to Texas and overwhelmed by the diagnosis and meeting all the new doctors.  

Since then  I've talked to this woman several times about the education classes she organizes, and various other matters, without ever knowing that she might have been available to help with the radiation decision and might have been a very welcome source of support.

I did meet some wonderful people - techs, doctors, and a couple of the radiation therapists.  I don't mean to claim that my life was unbearable without knowing a Nurse Navigator.

I'm just thinking there is an information gap there that kept me  from knowing about her, and perhaps kept other women from knowing how much she can help. 

Does your hospital cancer center have a nurse navigator?  Were you told about her?  

I salute our Nurse Navigator.  

And I wish you health. 

TAMOXIFEN, Cancer cells, and Magic Monster spray

After posting yesterday, I remembered 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 than like breast cancer cells..  Does this raise questions about Tamoxifen?


The new study (see May 5 post) may help women who don't metabolize Tamoxifen completely  . . ..... but what about those other cells?  Developing endoxifen as a drug may not make it the magic spray that keeps all monsters away from my breasts.

I can wait for some pill that will stimulate my own immune system so much that I won't even need pills.

Or I can do what I know to do now for my own immune system.  (This is the part that some people seem to tune out.)  And it's the part I often .neglect.

I can use interacting with wonderful people as magic spray.  Clean air is magic spray--I can look for places away from traffic.  I can keep looking for a good counselor.

I can do the things all those doctors in The Immune Power Personality have found helpful to our immunity. Like meditating (my way.)
Like  being more assertive, (not abrasive.)
Like expressing in a safe place what I want and what I don't want.
Like writing about trauma I've never talked about.
Like noticing how my body reacts to work, to noise, or to secretly dancing, and acting on those clues.
You can do it, too.

I wish you health.



 

TAMOXIFEN? - Scary reading, and exams that aren't optional!

I read murder mysteries.  But I don't like the ones that are too scary - the ones where we know in ugly detail what the psychopath is planning to do to his next defenseless victim.

This morning I read something even more scary - the manufacturer leaflet that comes with Tamoxifen (Nolvadex.)  I've known for years that warnings for medicine change sometimes. (We usually get that news on the Rx bottle or a leaflet that the drugstore publishes.)  And we often ignore it   But for certain powerful medicines, the drug store will give us the manufacturer leaflet, full of too-small print, and very important.    

The Tamoxifen manufacturer leaflet says:  "Because Nolvadex does not prevent all breast cancers, and you may get other types. . . "

WAIT A MINUTE!  This is the first I've heard of this, despite the deluge of medical news I get every day for this blog.

Just a week ago, I learned of new research to help women who don't metabolize Tamoxifen in a way that helps them.  (See May 5, DRUG NEWS - Bypass Tamoxifen. . .)  And I've heard a woman say:  "I took Tamoxifen and the cancer came back!"

After that, I insisted that my doctor refer me to an OB/GYN.  I have an appointment with one next week.

Now I read that this stuff  I take doesn't even prevent all types of Bc!  So I decided:

The new OB/Gyn doctor had better be enthusiastic about examining my breasts herself, as well as below-the-belt focus. Or else.
Daily exercise isn't optional.
I need to pay even more attention to my body.
I need to be even more careful, let's say obsessive, about what I breathe, eat, and put on my body.  Like reading labels.  And knowing the names of dangerous stuff.
I need to tell everyone to read the manufacturer leaflet that comes with Tamoxifen, and in your "spare time," read the drugstore-published leaflet that comes with other Rx.

I wish you health.  

(For some reason, the search feature on my blog is not always complete.  Please contact me if you can't find a particular post.)