ses are individual. I've never heard of starting low dose and going up helps with ses. If they're going to happen they will.

I'll let you know how it goes after I do it--this is my preference. Bonus is that my doctor is OK with it but honestly if he weren't, I probably wouldn't take it. Yes, I know not everyone gets those side effects. I generally do get side effects from all sorts of medications and this one may be the rare exception. But if it's not, then some of the listed side effects would greatly impair my ability to do the physically active sports that are so important to me.

We all have lines we won't cross. For some, it's radiation, others chemo. For me, I'll try this drug but won't hesistate to stop it if it interferes with my quality of life.

Goldfish, I have been on Tamoxifen for a year. I take it in the morning with my yogurt. The side effects are weird, for me they come and go and different ones from month to month. Right now I am experiencing massive hair loss on my head. I like have 20 different bottles of shampoo to help and have not gotten anywhere, I started the hair loss just in the last 4 months. I also break out like I have gotten bitten by bugs, I am seeing a dermo to figure this out. I try not to itch, when I do I scar. It sucks! But this comes and goes as well. I drink tons of water, like any where from 40oz to 80oz. My skin is dry. Oh, I am postmenopausal and have osteopenia. Supposedly tamoxifen will help with that only because I am postmenopausal. This isn't the case for women who have not gone through menopause. Also depends where you are in life, like where your hormones are as how the tamoxifen will work and the side effects, just all over the place. Not to mention your mental state, I take xanax which helps me, but everyone is different. What works for one may not work for another, just do your homework and come to this website to the forums, they have helped me. Good luck. Oh, I am 65 years old. The last time I saw my surgeon, he is for staying on tamoxifen, he believes that this pill works.

Just throwing this out there...random thinking out loud.

Many women here and in other threads say they are starting out low on tamoxifen and plan to work up eventually to the full 20mg dose.

Why?

Why are we all convinced that we NEED to be at the full 20 mg dose? There is no evidence anywhere that says that's where we need to be. I will type that again and let it sink in: THERE IS NO EVIDENCE THAT 20 MG IS THE DOSE WE NEED TO TAKE.

And yet we all labour away, working our way up that steep mountainside of increasing our dosage to attain that holy grail, that pinnacle of success, that aimed for and much coveted 20 mg daily dose.

Why?

If the answer, " well this is the way we've always done it and this is the dose everyone takes and this is the dose that was mentioned in all those texts books I had to read in med school"...if you feel that is a solid and worthy answer, well then you are right on track. Work up to your 20 mg dose and feel good about it.

However if you are one of those inquiring minds, Why should we drink the Kool-Aid Mr. Jones, is it because you have told us to and it will be good for us and we should blindly put our faith in you just because you tell us we should?... if you would be the person at the Kool-Aid line up asking, hey, why are we all suddenly lining up to drink Kool-Aid...then this whole '20 mg is the dose' is not going to fly with you.

It does not fly with me.

Whether you do fine on tamoxifen or not is beside the point. The point is that unlike a whole lot of other cancer related meds, which have been researched to death, the same CANNOT be said for tamoxifen. (concerning effective dosage) Despite many months of digging the evidence that says the lowest dose was the aim of any early studies simply cannot be found. It's the unicorn. It's the abominable snowman. It is the stuff of fairytales. It exists in stories, but I have never been able to find proof.

We do know that tamoxifen is effective. Would it be as effective at 10mg a day? Don't know. Why not? No one cared to find out. Why not? Perhaps because no one cared. Why not? Damn good question.

I am bothered by a thick, non-responsive medical system that leaves some of us struggling with a dose of medication that leaves us feeling like shit when in fact maybe we DO NOT need that much of a dose to be helped by the drug. When I read about oncologists who insist (as if they have that power, puhleeese!) that their patients be on 20mg, I think here's an oncologist very in love with their own white coat and very concerned about protecting themself from legal action, but who is not leveling honestly with their patient. Because the truth is NO ONE KNOWS THE LOWEST EFFECTIVE DOSE OF TAMOXIFEN. My oncologist confirmed this with me. That research was never done. NEVER DONE.

So it comes down to gambling with that random Force that dealt you a boob full of cancer in the first place. You swallow your pill and think that makes you safe. You swallow that 20mg and hope that this sacrifice of misery will appease the cancer god and he will pass you over, choose a different victim, because you have made the sacrifice in falling hair, disturbing hot flashes, aching joints, killer leg cramps, a vagina that squeaks when you walk and a bladder that goes pee when you least expect it. You tolerate all that because you have the magic idea that being a good girl and following orders will buy you random universal favour.

Wrong.

I feel really mean saying this and it is not an attack on anyone! But it is an attack on the unsupported notion that we NEED to take 20mg every day, MUST take 20mg to get any protection. No one knows if that is the truth or pure bullshit. So why do we beat ourselves with that standard or allow anyone else to beat us with it?

I do not want to die of metastatic breast cancer. Do I think that taking 20mg of tamoxifen every day for 5 years is the magic bullet that will prevent that from happening? Oh, please. I believe that like I believe that cutting out my weekly donut will magically bring back the bikini body I had when I was 18. Not going to happen. I take a 10 mg dose most days and a 20mg dose some days because that is the dosage I decided I was comfortable at. With NO HARD EVIDENCE to say otherwise, and lots of evidence that women on the full 20mg still get recurrences.... I think it was a pretty sane decision. Might I get cancer again? Yes. If you take 20mg every day, might you get cancer again? Yes.

What is my point here? That if you can take 20mg a day and function, then do it and good for you. But if you are living in anxiety, misery and beating yourself to take the full dose of a drug that you really can't tolerate, realize that you are striving to reach a goal that is not supported with any research as to effective dose. Cut yourself a little slack and demand from your oncologist the proof that lower doses were tested over long periods in large trials and conclusive evidence was reached. He won't produce it. Then make a plan that works for you. We do know that tamoxifen works, but how you get there, well that's open for debate.

Edj3, EXACTLY! The dose where the most women did NOT say, screw this I would rather take my chances with cancer than feel like this every day. What does that tell you about this drug? Furthermore, it makes me wonder about the ethical standards early researchers had. The evidence that this drug carried massive side effects showed up early on and yet getting the dosage right was not on anyone's radar. The survival of the patient might have been a goal but the LIFE of the patient was not taken into account, if you know what I mean.

I just get really bothered when I hear reluctant women or women who struggle very much on this drug working towards that 20mg goal as if it is backed by hard scientific research. It's not. I think tamoxifen might be the knight on a white horse charging in to save us and if we're not careful that big white horse will trample us to death!

My question: How did they come up with 20 mg dose of Tamoxifin to do the research on. I am sure they didn't just come up with a random number. Studies must have been done on 5 mg, 50 mg whatever. I used to work in a research lab and they don't just pick a number out of the air. I believe after years of study the 20 mg was the most effective dose, not to say that 5 mg, 10 mg would not give significant benefit too. It's like any other drug, how do they know what dose of Tylenol to take, what dose of insulin to take.Medicine is not an exact science, it's all about the percentages, trials go on and on. Who really knows

That makes sense goldfish. Tamoxifen has been around a very long time. I'd question the ai's that are newer. 2.5 mg letrozole, not 2, not 3. I'd be willing to try 1 mg if there were enough studies. But not until then. I'm too high risk.

Spratt, yes, taking some is better than nothing.

I was worried that the side effects would be so horrendous that I'd quit completely. That's what I was hoping to avoid. I take 10mg a day and 20mg on Wednesdays and Sundays. I do have side effects. But they have been tolerable. Annoying and problematic for sure. But tolerable. You might find that the quality of your life does change, but not enough to make you want to quit the tamoxifen. Many side effects ease off over time. Or as others have said, they seem to come and go in random waves. Your life will be affected but maybe not derailed. So try and have as open a mind as possible because you might be one of those people who sail right through without a hiccup. Let's hope so!

To be fair, I also take Paxil, which is thought to interfere with Tamox. So much so my PCP has been getting letters from my pharmacy and insurance saying I can’t be on both. 🙄 I have to be on Paxil—I tried Effexor with Tamox first thing after radiation. That was bad. It’s why I elected to have a hysterectomy and go on AI’s. And I got almost 3 years on that regimen—but the pain was debilitating. My MO was going to let me drop anti-hormonals altogether, but he said recent research is questioning the Paxil/Tamox interference and said it would be worth trying. He gave me the prescription and wants to see me after 6 months. I feel if there IS an interaction I need to try to take the recommended dose to get as much benefit as possible. But here I am only taking 5 mg, dreading going up to 10. I think it would be easier if it were October—the timing is bad. I think he is trying to get me to at least the 5 year mark—and I can appreciate that.

Re: Hot Flashes.
(just a reminder - I am not on any anti-hormone, My Hot flashes are because I stopped taking Hormone Pills upon DX)

Anybody hear of SGB? (STELLATE GANGLIAN BLOCK) for Hot Flashes? Its an injection in the neck area. It was on 60 Minutes - talking about how SGB Has helped with PTSD, and what caught my attention, they said ' by the way, it was originally used for HOT FLASHES'. Not even sure where/ or what Doctor to start with on this one.

DeeBB - thanks for the suggestion for AM PM. Ordering it now. Little concerned about the Valerian ingredient, (that and melatonin really do a number on me - makes my skin crawl) But I'm willing to try anything!

LomLin- I have the exact same thing happening to me 'breaking out like I'm getting bit by bugs and scratching causing scabs' They are everywhere. Going to dermatologist next week. or call an exterminator.

Musogirl- I've had severe hot flashes 24/7 for two years. Summer/winter, doesn't matter. Summer time I hibernate in my cold cold house, I'm either freezing, teeth chattering, or completely drenched, then the chills start - rinse and repeat. I have panic attacks they are so severe. My OBGYN has given up on me.

I guess timing is everything when you start on tamoxifen. I am post menopausal and have no hot flashes, thankfully, but I would trade that one in for other crappier side effects, like hair loss, bone pain, mental issues, you know what I mean. I feel like it is a crap shoot of what side effect you are going to experience for the month.

rljes, yeah an exterminator, if they can find the buggers! That's funny.

Musosgirl, can you take xanax, my oncologist is willing to prescribe it to me, not my primary. I take it as I need it and works right away, it works great, I like it.

Just love reading your comments, love you ladies. Hugs, Lisa

Annoyed it is natural to feel that way, I was worried about how I would do because when my mom took it 25 years ago it was awful. I told myself I would give it the good old college try and so far almost 5 months in it hasn't been too bad. I take 10 mg in the morning and at night, get a few warm flashes and lose a few strands of hair each morning. Good luck, you can do it, and if it is awful you can stop. But I feel like we always hear about the bad but not the good.

Hi Mymomsgirl, thanks for your personal input.My prescription is a 20mg single tablet.I have an appointment with my GP tomorrow so will discuss with them my concerns as the consultant I saw at the hospital was not very forthcoming with regards to someone not accepting that they must take the prescribed tablet without any questions.

Wow- Annoyedwoman ( love the handle)
you speak my mind-omg- In fact, through
this whole cancer thing, which for me started in Jan 2019- I felt that the surgery
snd radiation were far more easier
to accept and go through than the
daily pill popping- So many woman
of all stages choose to forgo tamoxifin
because of side effect fears- my sister
did and she reached her 5 year
mark in July- My great aunt
lived to be 97 and she had a mastectomy
at 55 with nothing after-
so my sense is that because breast cancer seems to recur more than
othercancers( fromall i have read)-
the standard of care is pretty standard
for all- eg: hormonal therapy always
suggested/recommended- because
there is no way of knowing who will
and who will not benefit- we are
just given petcentage rates and
make our decision- which is a crapshoot-
so in my great sunts case- she
needed nothing after her mastectomy
ehen she was 50. Had she been 50
with todays dtandard ofcare- she
would have been offered hormonal
therapy- but as i see- she would never
have needed it- so thats the most
difficult pill to swallow of them all-
who will it make a difference to???
yes- becsuse we feel same/better
snd overthe worst ( diagnosis/durgery etc)
its very very aggravating to face
this pill with all the uncertainties
and more importantly- whatever choice
we make we have to have some
measure of peace with our decision-
that is the elusive piece for me
tight now-
hang in there- i am sure we all reach
that at some point- to some degree/
keep us posted