Sisterhood of the Secret Handshake

lol kmmd, the only thing you miss about chemo  is not being able to blame stuff on it...

here's my completely unsupported by any empirical data (ok maybe just a little itty bitty bit) strategy for starting Tamox... We women (and maybe men) are creatures on cycles... and HAVE to be "pre-menstrual" to even be prescribed Tamox, the list of SEs seem to be exactly the same sorts of things that are SEs of plain ol' nothing to do with SFBC menstruation, PMS, PMDD whatever, and although they don't know how Tamox actually works to reduce recurrence, they do know it has something to do with hormones, our naturally occurring hormone levels and the hormones of the fcrikeyucking cancer tumor...  so it makes zero sense to me that there's been NO studies of effectiveness and/or side effects specific to which day of our cycles we begin taking Tamox... Unsurprisingly, even through the medical community ignores this criteria, other women on BC.org have had the same thoughts.  I read everything I could here, and only found a handful who noted which day they started.  They used the same reasoning that I initially used: thinking that the most advantageous day to start Tamox would be when our estrogen levels were already receding... like maybe our bodies would notice less that that there was some sort of interruption of the estrogen process if we we were already waning on estrogen levels... or we could get Tamox to work WITH our reproductive system schedule... OK so they all reported that this did NOT work.  They seemed to have more uncomfortable rides on the Tamoxitrain.  Also, I we all know about the Tamoxications... 2-5 weeks off Tamox and the SEs disappear.

 One more piece for the puzzle... when the women who were having an EASY ride on the Tamoxitrain were asked which day of their cycle they started Tamox, the answer always seemed to be "Oh I just took it one day, nothing special."  I had a chat with my fertility counselor, she is also the head of the American Fertility Association and we reasoned (again, this is not scientifically studied or based on empirical data per se, just her experience and mine plus some reasoning and educated guessing...) that a women tends to remember when she had her period, and "just any old day" would more likely be a day she did not have her period, was feeling generally good.  For me and many women that would be the "up" days I feel I have once my period is really over, and the day of the month I like to weigh myself, because I am usually lighter, not retaining water etc... For me that's about 2 weeks after onset, or the 13-14th day of my cycle, which coincidentally is the usually highest fertility day.  New theory: on the day we start Tamox, it sort of "freezes" our cycle at that moment.  So like for those women who tried starting when their period was beginning, they got all the crappy period symptoms- for the whole time.  And maybe that's part of why the Tamoxication works, because 2-5 weeks lands you on a different day of our cycle, especially 2 or 5 or even 6 weeks, like RoseG did.  So if we start Tamox on one of those "up" days of our cycle, when we're feeling lightest, not puffy, not emotional and all that lovely period jazz, maybe the Tamox will "freeze" our system at that point and we get that easy ride on the train.  Another point not to be missed is the power of suggestion/placebo effect.  You know how easily suggestible I am!  I watched others who began their ride from March to September, I read back on the old thread for a very long time, and checked in with some of the original members who were kind enough to stop back in, I also read the entire thread from KAK's group starting both kinds of hormone therapy (Tamox and AIs) and another thread for people starting Tamox who did not do chemo.  One thing to note is that everyone who did not do chemo and did Tamox did so well on Tamox the thread died, because no one had a complaint- it was too easy.  That fcrikeyucking chemo is some bad scrikeyhit.  Not entirely coincidentally, that  fcrikeyucking chemo also often or always- I am not sure, I know very little about chemo because I was lucky to escape it- causes chemopause, which certainly muddies the waters to say the least in terms of when the hell is your cycle... and if Tamox freezes the system right when you've been doing chemo, well that just plain sucks.  In the endeavor to not give cancer a break, the patient doesn't get one either.

OK so that's the reasoning behind my theory.  Shortest form is take the first pill on the day of your cycle you feel BEST.  

Turns out that it was kinda hard to tell which was my "good" day when I started, because my cycle was changing, period was not regular and I was under stress yada yada, but I was committed to begin in September so I picked the day that seemed bestest, and was sort of the second weekish as best as I could divine.  I take the 20 mgs with my other dailies- iron, eye vitamins and antacid in the morning- from a pill box and try to pretend I forgot the Tamox is in there.

So far, so good!  I am doing so well on it in fact that I am afraid to jinx it, afraid maybe it's not working- can it be this easy?  I am waiting on my third period, its late, but I think that's because this has been an intensely stressful couple weeks with the lawsuit failure, the holidays, the construction, the troop shipment and the economy all at once.

I also had another advantage, being able to wait a couple months after RADs to begin Tamox, I wrote down all the "SEs" I was having - BEFORE I STARTED TAMOX.  You have seen the actual data of tens of thousands of women on Tamox - half on placebo- who reported the SAME SEs, except for hot flashes & vaginal discharge.  So how can we almost-menopausal women really know if its Tamoxifen or "the change" causing the symptoms.  They know even less about menopause than they do about cancer and Tamoxifen!

As I think that Tamox exacerbates existing issues,  and I already have legs that get stiff too fast and ache and fall asleep, I make sure to follow the mayoclinic guidelines for women who get night leg cramps, I exercise before I go to bed, thanks to the kid, who wont go to sleep unless I put hin on my back carrier and get on the elliptical trainer with him for an hour.

I avoid salt like the plague to aid in weight loss.

I think Tamox has subdued my appetite a bit- or maybe I am just so relieved that I am not having bad SEs from Tamox that I am not acting out by eating compulsively.

In pre-menopausal women, Tamox is said to shrink fibroids, which is would be a boon to me. 

Two months into Tamox, on my second period, which continued pretty normally, considering that my period was already going facakada, I got my first hot flashes - and wasn't even sure that's what it was until Little Red confirmed it.  Mild.  I was irritable and I felt like I was wearing an itchy wool sweater from head to toe under my skin.  I do what i read helps normal menopausal women with hot flashes, deep breathing.  I also take a xanax if I am afraid that my irritability will  make me unkind ot my son or otherwise embarrass me and set me back in some way.

I am super delighted.  I can do this for 5 years, noooo problem.  Thank you for asking, and if its OK with your ONC to try it this way, I'd say use the power of suggestion, plus common sense to counter any effects from existing issues that could be exacerbated, and give it a whirl!

QOTD- don't forget how clean Mary's ceilings are... no apology necessary I'm so happy you could get the wildlife folks there to save the baby possum.  I still have images in my head about terrible things I have seen in nature- the worst due to something humans did... I tried to help too.  I won't retell the story, knowing that others here feel the same way, like you, like me Of course I'm thrilled to see you posting here nyah nyah nyah

OK Little Red, I'll play.  I know jack shcrikeyit about chemo, but if that's no impediment, and if you can matriculate into the Little Engine That Could School of Thought- that is, "I think I can, therefore it will be so"... otherwise known as the "power of suggestion", then I can extrapolate on my Tamoxitiming theory.  First, I'd want to know if women who enter chemopause who then take no more meds, like the Triple Neg gals, do they generally get their periods back after chemopause, or is that it... chemopause and that's the end of your period.  If they do generally get their periods back, when does it come back generally?  Is it the same for chemo patients who enter another drug therapy or specifically Tamox after chemopause?  In my ignorance, I am under the impression that periods come back after some months off chemo.  Next question would be for the ONCs to answer.  I believe the gals who took Tamoxications may have been Stage I.  Most of those gals got permission from their ONCs- I thought.  RoseG definitely did not get permission and freaked her ONC out big time.  Helena says she didn't get permission, but also went back after 2 weeks.  Certainly there are ONCs who tell patients to stop Tamox a couple weeks before surgery regarding blood clotting issues- and others who don't.  So with the answers to these questions, a Tamoxitiming and Tamoxication could be worked out like this:

IF a chemo patient's period returns after the patient has begun Tamox (and not for 3 weeks like what happened to Catherine - ugh!, I mean a somewhat normalish period) and IF that patient's ONC feels that its safe to take a Tamoxitiming Tamoxication of 2-5 weeks, even OK 6 weeks, to a) clear the symptoms- because generally that happens pretty damn fast, although again, not so for Catherine and b) drop the patient in a new point in her cycle that may spare her those side effects and c) by the power of suggestion and illusion of having some control the mind provides the relief and moves into the future sans intolerable or just unnecessarily uncomfortable side effects.

This seems not only reasonable to me, but its what kookiesmom, kmmd and catherine's ONC's seem to have prescribed- at least the part abotu taking a break to clear the symptoms.

Helena's experience is one of the ones I watched unfold- especially because emotional trouble is the most terrifying side effect for me, and maybe for everyone.  It's nothing short of losing your mind, which is too fcrikeyucking close to losing your life.  It was such a huge victory in my eyes to see that simply restarting 2 weeks later provided her complete relief.

I also can't emphasize enough how important it was for me that I could keep a diary of my "symptoms" for a couple months before starting Tamox.  That whole game of "Guess what's causing the Symptom" sucks dog poop.  Is it the stress of the DX?  Is it what would normally be happening "at this age" regardless of SFBC?  Is it from chemo?  Rads? Surgery? Some other unrelated medical issue we already had that we forgot because it wasn't holding a knife to our throat?  Is it nits?  (Were you there for Helena's itchy head that turned out to be head lice?)

Back to the decision tree, if the answer to the first question  is no, the periods did not generally- or specifically that patient's period didn't come back after chemo I'd think of two approaches.  The first would be comparing as many women as possible whose periods did come back, and how far off their usual schedule they were.  Like, wouldn't it  be just amazing if it turned out that despite the ravages of chemo, a woman's cycle stays basically on the same timing?  This would be somewhat of a miracle because we all know our periods shift when we are close to other women to match theirs- if such a subtle thing can influence the timing of cycles, and chemo can not, that'd be a pisser.  Anyway, based on that information, use the calendar to make the best guess of what your cycle would be and aim for anywhere in the second week.  (Better than period, better than PMS weeks.) The second would be to just pick a day, any ol day, that you feel good.  In fact, now that I said that, that's probably the whole answer right there.  JUST TAKE THE FIRST ONE ON A DAY YOU FEEL GREAT.  If it's "freezing" the system, who cares what day of the cycle it is if it feels good?

Hmmm.  It'd suck big time if you were feeling great, took Tamox and then felt not great.  You'd be stuck with the Guess The Cause game again.

continuing the Tamoxitiming for Chemopause patients from the Little Engine that Could School of Thought...

even so,  in this case, I'd still want to run it by your ONC.

The last scenario is IF there's no telling where your period could be in your cycle, and your ONC won't give you a green light to try a Tamoxication to a) clear the symptoms and b) drop into your cycle at a different point, then that's one of those paradoxes I have failed my whole life.  (Star Trek fans will recognize this is as the Koibashi Maru test)