About-to-Start-Hormones Group

Hey, y'all!  I was reminded last week, at a talk given by Dr. Susan Rose, to be grateful for my hot flashes, because they mean my body is absorbing the tamoxifen well!   However, now that it's summer, I'm perhaps a bit more grateful for having A/C!!

Hope you are all well.  Thanks for bumping, Rachel.

Good going, pclarky!!!

Happy Pink Month, girls.  Here's my contribution to my own personal bc awareness: 

In the interest of full disclosure, I'm reporting in to tell you all something that might shock some of you, but here goes:  I stopped taking tamoxifen over a week ago.  And I stopped taking Effexor this past weekend.  Long story.  I've been a "good girl" for a year now and I have had a whopping case of Cancer Related Fatigue since my 7th rads treatment.  For a while, I thought I was starting to feel better and then, around six months ago, I started to feel worse.  And worse. 

Anyone who has not suffered from fatigue, real fatigue, it cannot be compared to mere tiredness.  I thought I knew what fatigue was from 3 years of crappy sleep, hot flashes and night sweats from menopause.  Wrong!   That was nuthin'.  I was a lightning bolt compared to how I've felt this past year.  I inserted a link above to the information pages on CRF on the National Cancer Institute website.  Also, I pulled some info together on a couple of my blog posts, particularly one called "The F Word" which some of you might find helpful.

I finally signed up for a research study on CRF and got my surgeon to prescribe something.  Not that I wanted to take another drug.  But believe me when I tell you, I've done all the things I'm supposed to do for it, and nothing helped.  And then after 4 weeks on this new, reportedly amazing, expensive fatigue-fighting drug, the drug started not to work anymore.  I was continuing to feel dizzy and light-headed every day, as I have for months.  I was getting a headache every afternoon as I had for months.  I would push myself to get through my work day, and then collapse and have no energy to live the rest of my life, see my friends, wash the dishes, pay the bills.  And that's been going on since last year.  I felt pretty desperate.

So, I started taking a very hard look at side effects.  The Effexor has seemed to do a decent job, but I've had trouble with it from the start with side effects from it -- stomach pain & cramping, dizzyness, loss of concentration, etc., which are pretty standard SE's for it.  Most of them seemed to resolve when I switched to the brand name extended release version.  Then, most of them came back.

Then there's tamoxifen, which has its own SE's.  My med onc, my new med onc, that is, said that basically, if you have some hot flashes and discomfort, it's doing its job for you.  If you have no SE's, you're probably not metabolizing it and should take something else.  And if you have a lot of SE's, you're on too much of it and should be on a lower dose.  But the one thing no one has been able to tell me is how you can tell tamoxifen hot flashes from the hot flashes I've been having with post-menopause for the last 3-4 years.  It was just more of the same for me.  Worse in degree, but the same symptoms.  Was it menopause?  Or was it tamoxifen?  No one could say.

Then I interpreted my recurrence risk again based on the Van Nuys Prognostic Index, which is an evaluative tool used by docs for DCIS patients to determine what treatment to recommend.  I plugged in all my path report data and looked at it, hard.  I did some more research.  I read some more statistics.    And I decided to see how I felt if I stopped the tamoxifen for a week.  So I did.  And I felt a whole lot better.  Then I thought about it all some more and realized that the minimal reduction in my overall recurrence risk from tamoxifen (according to all the info I got & what the rad onc told me) which is maybe reducing a 15% recurrence risk to perhaps 10%, is just not worth sacrificing more of my present life to and not feeling well.  It is also a statistically significant fact that being able to feel really well again, get your life back, and get fit again is one of the best things we can do to prevent a new occurrence or a recurrence.  So, I'm done with anti-hormone therapy.

I would never presume to recommend that others do this.  But for me, I was facing the prospect of not being able to work full-time anymore, possibly having to go out on another medical leave and maybe even applying for disability.  And that was just not acceptable.  I have a mortgage to pay.

I really am astonished at how much better I feel off the tamoxifen.  I really would not have suspected that between the tamoxifen and the Effexor, I was accumulating SE's that would contributeso greatly to this crippling fatigue, loss of concentration, lack of good restful sleep, memory deficits, etc. etc., that has threatened to change my life a lot more than cancer has.  I've heard stories from other women who have had a nightmare trying to take tamoxifen, but I usually don't suffer much from any medication, so I wouldn't have believed I would be feeling so much better now if I hadn't experienced it for myself.  I can't take AI's so don't even suggest that -- bone loss issues.  I would maybe consider Evista, because it's a bone loss fighter that has also been found to help prevent BC.  But not now.

The reason I've bothered to write all this is just to remind us all, in the month of breast cancer awareness, that each one of us has to decide what is right for ourselves.  Not our friends, not our doctors, even.  I have frankly not found any of my cancer docs to have fulfilled the principle of helping me exercise my right to "informed consent."  None of them gave me complete information about any aspect of my treatment, not even my surgeon, whom I like very much.  So, I was not able to consent to their recommendations in any sort of informed way without gathering information for myself.  The docs just don't know everything for one thing.  And for another, like all medical specialists, they frequently become blinkered by their own narrow knowledge and do not step back and take a look at the whole person before them to assess whether this person is getting well -- NOT whether she is "cancer-free" but whether she is well.

So, be well, dear ladies, whatever that may mean to each of you.

Thanks for your concern, Rachel.  I'm fine and I'll be fine.  I think Raloxifene is the other name for Evista, so I'm keeping that possibility in mind.  And Zometa is another bone builder, as well as a good drug for bc bone mets.  I have osteopenia, so I don't really need to take an osteoporosis med yet.  Just get plenty of weight-bearing exercise and calcium and vitamin D.

I give a talk on osteoporosis each year at an annual Women's Wellness Day at our local hospital.  I put together a pretty decent handout this year, if anyone wants it.  It can be downloaded as a PDF from here:

Standing Tall:  Preventing & Treating Osteoporosis

Hugs back.