Bottle o Tamoxifen
Comments
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I have been lurking here since starting back on Tamox. I had been on AI’s for about 30 months and the pain was totally debilitating. This summer I started back on Tamox at 20mg but felt like I was walking around with a continual fever, the hot flashes were so intense. So I took a week off and restarted at 5mg. I plan to work my way back up. My question is has anyone asked to take Tamox with summers off? Obviously I am hoping a gradual loading will bypass some side effects, but I know on AI’s hot flashes were tolerable during the winter and much worse during the summer. The idea of facing 2-7 more years on this thing is truly depressing me. Thankfully I am not experiencing pain on this—just crazy hot flashes and thinning hair.
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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.0 -
Preach. From everything I've read (with the caveat that I'm no Beesie), 20gm is the protocol because (a) it's what was studied and (b) it was the highest dose women would more consistently take before bailing b/c of side effects.
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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!
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then that can be said about all meds..
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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
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Goldfish, you say you are sure they didn't come up with a random number. What makes you say that? If studies were done on 5mg and 10mg, where are those studies? What were the conclusions? Who were the test population? What were the starting diagnosis of these subjects? HOw long did these trials go on? How long after where the subjects followed for? What were the results? There is a Big Black Hole when one goes searching for this evidence. Were you a researcher in the late 60s and early 70s when tamoxifen first came on the scene? Are most of us aware that it was never intended to be a cancer treatment but a fertility treatment? I think laws and standards of drug trials have changed in the 50 years since tamoxifen was discovered so to say that the research rules that apply now MUST have applied back then is probably not totally correct. Maybe close to correct but still there have been shifts.
Artista, yes, the same could be said for many medications. But I think many newer medications have been more thoroughly tested. Tamoxifen is an old drug.0 -
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.
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Thank you @runor for posting what I've been thinking for weeks now! My MO wants me to start taking the tamoxifen and I haven't picked it up yet to start because of my fear of side effects. If and when I start taking it, I will begin with only 5 or 10 mg. Taking something is better than not taking it at all - in my opinion.
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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!
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Yup. I'm willing to try the drug with an open mind.
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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.
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@ runor - yes, I am open to at least try it at a low dose and see what happens. Thank you
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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.
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rash is a known side effect of Tamoxifen. Hope your dermatologist can help. Itching is misery!
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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.
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LomLin, my benzo was Klonopin/Clonazepam. My flashbacks from PTSD were 4 hours long! I needed long lasting anti-anxiety meds and Xanax was too short. I tried Ativan for awhile but the discontinuation syndrome was so severe I told my doctors I would never take it again. I took Clonazepam for years and eventually was able to wean off. Now I keep it on hand for the rare flashback—but I have been super stable since before my cancer diagnosis—I take it once or twice a year. The Paxil is sufficient—and every other SSRI/SNRI I have tried either didn’t help with the anxiety or made me suicidal—so I refuse to switch again. I am pretty stubborn over it—I mean, I elected for a full hysterectomy just to stay on this med! I do tend to prioritize my mental health over my physical. I would rather die happy than live in misery
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Just love reading your comments, love you ladies. Hugs, Lisa
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Recently prescribed Tamoxifen after Breast Cancer surgery but having never taken any tablets, I am 52; and having read all of the frightening side effects I am struggling with actually taking even the first tablet.Has anyone else faced this dilemma?
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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.
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Hi Annoyedwoman- I totally relate to your
thoughts- I was supposed to start
tamoxifin may 1 but couldnt bare the
thought of subjecting my body to
a pill everyday- i dont take pills
of any kind- so end of june rolls around
and after much angst i took the advice
of many people to at “ least try”-
can always toss if want- so i popped the
first 20 mg at nite with water and have
done same ever since- still not one
side effect- i think alot depends on
each persons unique pathology-
if i had a higher risk of recurrence/mets
i think i wouldstill be pissed , but
resigned- as of now, i am pissed
and on the fence about continuing-
stage1b grade 1 with unifical tumour
of 7 mm0 -
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.
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Hi Mymomsgirl and Cassiecanada, thanks for both personal inputs.My prescription is a 20mg single tablet daily.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.
I am a high risk patient as my mother had breast cancer, no recurrence; whilst her mother had stomach cancer and passed away from it.My father and his side of the family have mainly died from cancer.
Call me pig-headed or stupid but I just don't want to fill my body with chemicals that can have such negative effects.Having being healthy so far throughout my life then ingesting chemicals that may have negative consequences is not something I am jumping up and down about.
In addition to all this I have been headhunted to oversee a very large school as Principal outside of my home country; one of my dream jobs.So you can just imagine how unbelievably vexed, frustrated and angry I am.At this time I just want to ignore everything medical and just go and live my life.
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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
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AnnoyedWoman—you echo my sentiments exactly. I hate taking this pill not knowing if it’s helping me or not
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Preach. All of you.
You want to know what I'm pissed about? I'll tell you what I'm pissed about. An MO who wouldn't listen to me or my concerns about tamoxifen and even less about my concerns about AIs. An MO who looks 30 if she's a day and hasn't got the first freaking clue what it's like to have a hot flash, or be vain and middle aged and desperately trying not to age before your time. She even made up some total bullshit story about how a lower dose of Tamox can lead to cancer cells becoming resistant to it. Maybe it's true, what do I know. But I've never heard that before and I tried to find something on it and couldn't.
I went ahead and took her advice and started at 20mg, figuring "WHATEVER" I'll go lower if I need to whether she likes it or not. So far so good, but it's only been two days.
This is not a good relationship I have here. Am I being unfair? I only saw her once. I'm supposed to see her in a couple of months to see how I'm doing on the Tamox, but right now I'm thinking I'm going to break up with her after that.
To be fair to her though, she did tell me that not everyone gets the side effects of these things. I didn't know that. I assumed it was a given. So she was comforting on that score, but otherwise.....
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mom2bunky I'm right there with you. I will try the tamoxifen in September after my upcoming 10k race. I may do just fine on it. If so, great. If not, I'm going to stop. I haven't tolerated hormone-related drugs in the past, and I've had bad side effects from drugs that are supposed to have little effect on people. But the number of affected people is still above zero and sometimes I'm that one.
When I read about joint pain and fatigue, when I read about debilitating hot flashes, well all of that would most definitely interfere with my quality of life and with me doing the things that bring me joy and are part of me being me.
So I hope for no side effects but won't hesitate to stop taking tamoxifen if it does interfere with what I love to do.
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yup- my thoughts exactly- we give it
a shot- at least we did that- and toss
if quality of life is compromised-
some of these women have a recurrence
even while on tamoxifin- ya cant win-
its really all a crapshoot- cancer is
wily- you do what gives the greatest
peace of mind, trying not to
second guess constantly ad nauseum-
at some point, time just marches ahead
- stretches on further out- perhaps greater
1 1/2 mos on tamoxifin- still will
give it a chance- and still am waiting
for any se0 -
I am giggling, because I have had all of these thoughts over the past 8 months on Tamoxifen and the 4 months reading about it before that. Unfortunately, I have had a slew of side effects, but, at this point, I have them mostly managed. I have resigned myself to the fact that the oncologist's role is to keep me on the pills because the studies show it lowers recurrence risk. Mine will help me deal with the side effects (gabapentin is my best friend) if I complain routinely, but mostly she just wants to hear that I am still popping that pill. I imagine that if the side effects were so unbearable that I said I was quitting she might choose to switch my treatment, but I am not sure. On the optimistic side of my analysis, I am actually a "fairly boring" patient given my low risk and I am happy to maintain that status.
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That's exactly the cycle I don't want to get on--take a drug to possibly reduce my fairly low risk of recurrence and then need other drugs with other potential side effects to manage the side effects from the first drug. UGH.
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