Wednesday, November 19, 2014

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.

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