Tamoxifin use for the over 60’s

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Hi all- Thought I might start a topic for those
of us over 60’s ( me: 63)...taking
or about to take tamoxifen.
My path stats show local recurrence of 6%
without meds - mets 3% without meds)
Given that, my mo said i could try either
tamoxifin or femara - ditch if couldnt
handle se.
I started last nite on 20 mg dose which
did nothing to stop the “ would you rather”
game from the never ending reel in my head-
ex:
femara ( and alendronate ( to protect bones
but has a host of its own eye popping
side effects risks eg: jawbone death.)
i am a hair sway from full blown osteoporosis right now)
OR
tamoxifen with its own host of potentially
lethal se’s.
Please forgive me if i sound whiny- for
those of you who may have no choice-
I completely and unequivocally hope you
do not see me as being a wimp- after all
I fully am prepared to launch in full throttle
with whatever it takes should my
mets/recurrence happen-I have zero delusions about that reality-
butmy situation is unbearable right now cos
i cant launch in because i dont know if i
should- does my small benefit from tamoxifen
outweigh the lethal risks of tamo ?
my call- i get it-
so do any of you fine ladies have any
words of wisdom/ experiences that you could
share?
pls forgive my lack of stats- havent entered
yet - but grade/stage 1 tumour idc - ( t1b)
7 mm idc tumour that came with
a surprise add on of 1.5 cm of
dcis ( ugh)-
thanks to all and hope you are all doing
well i

Comments

  • edj3
    edj3 Member Posts: 2,076
    edited June 2019

    You might find some really good information in this thread (I know I have):


    https://community.breastcancer.org/forum/78/topics/696015?page=994#idx_29797


  • cassiecanada
    cassiecanada Member Posts: 166
    edited June 2019

    Thx edj3- i think i may have come full circle - haha
    I roam all over this site snd post all over and sometimes lose track of where-
    I have actually seen that thread- yes- its
    very good- Did you break a bone
    in a run? way back i think i respinded to you cos of fitness thing ( even tho
    i may be 63 i am still a road warrior-
    cycling marathons)
  • edj3
    edj3 Member Posts: 2,076
    edited June 2019

    Well yes, my bone broke :( and yes from running. Had just gotten back to building my base when this dx hit.

  • cassiecanada
    cassiecanada Member Posts: 166
    edited June 2019

    edj3- you are a trooper- a tough woman-to
    have that warrior mindset/ in zone etc-
    I hope i didnt sound cavalier- Hope
    you are back to running- I think
    the diagnosis
    of cancer made me angry at one point
    becsuse of the impact on my fitness regimen-It seems both if us have similar paths
    and comtemplating this dreaded
    hormonal stage-
    thx for respinding- keep us posted
  • edj3
    edj3 Member Posts: 2,076
    edited June 2019

    I salute your cycling marathons! Had a bad bike accident as a kid so that's pretty scary to me (silly but there you go). And you didn't sound cavalier at all!

  • jessie123
    jessie123 Member Posts: 532
    edited June 2019

    I'm having the exact same problem as you are having --- do I want to take the drugs. I typed a risk/benefit for my Oncologist to look at yesterday. He didn't push me too hard, although he is for the drugs. He did say that I have a very good chance of the cancer never coming back even if I don't take the drugs. I already have mild Osteoporosis and I also have periodontal disease. Are they saying I won't be able to have any invasive dental work for 10 years. That's crazy at my age - 70. I consulted with an oral surgeon and he said on Prolea you have to be off the drug a year before invasive dental work --- with Fosamax it's 2 months. What if you have a toothache --- how does that work? My cancer is a 1B (new staging) -- I'm not sure the risk is worth it. Also, when they do the trials I don't think that they separate the participants by grade, stage or lymph node involvement. I'd love to see statistics on recurrence potential with the lower risk groups. I bet the advantages with the drugs would be much different. I sound angry because I kind of am -- I'm so tired of the professionals making US make all these decisions. Oh, and there is no way I'll take the tamoxifen -- those death side effects aren't worth it to me --- I'll see what my surgeon says when I see her in a couple of weeks --- if she is also iffy about my benefit I'll op out of any drugs.

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited June 2019

    Im 69, 68 last year when I had surgery and radiation. The Dexa scan I had the same day as my mammogram showed full-blown osteoporosis in my hip and osteopenia in my spine. My MO wanted me to take an AI plus Prolia, but there are dental problems with Prolia and I probably need dental work. Due to other medical issues I had to deal with, I didn't want to get into a complicated, multi-drug situation. I was having problems wrapping my head around all of it, so my nice MO looked at me and said "Let's try Tamoxifen." I'm already on a daily aspirin regimen, so she thinks I'm safe from clot problems. I don't have to worry about endometrial cancer (been there, had the hysterectomy in 2008). And my BS said that Tamoxifen actually helps build bone strength. So I took it for four months. The hot flashes were easing off, and the multiple muscle cramps had improved, but I was turning into a shrieking bitch. So I quit in early April. And I remained a shrieking bitch. Maybe that's just me, now. Anyway, I started taking them again early last week, but just one every other day. Oddly, my mood swings seem to have improved very slightly, but I'm still scaring myself (and the poor dog. And husband.) I have an appointment with my MO next month, and I'll discuss it all with her. My BS said I was one of the few patients she's had who admitted stopping the pills, so I've been feeling smugly saintlike since that appointment! 😇

  • jessie123
    jessie123 Member Posts: 532
    edited June 2019

    Smugly Saintlike --- that is so funny !!

  • cassiecanada
    cassiecanada Member Posts: 166
    edited June 2019

    Hey Jessie- glad to have an ally in this
    HRT dilemma- last nite i took
    day 3 of tamoxifen ...down the
    hatch it went - arghhh- my new thinking
    is until i have made a decision i will
    at least try it ..then today i spoke to
    my daughters friends mom who is 59 and
    has been on tamoxifen for 7 1/2 years-
    wow-... she had
    switched from tamoxifin to letrozole
    and became a raving bitch as she described it-... so bad were her anger
    outbursts and ragefests she tossed
    them- had ovaries removed-
    went back on tamoxifin- been a pretty
    decent life since- no bleeding- i asked her
    why ovaries and not uterus- isnt
    uterus the problem? she said ovaries
    cos that one cant be detected very well
    but with uterine cancer- bleeding is
    a sign and cancer gone when uterus
    gone- she feared ovarian but doesnt
    fear uterine- god- just one more side
    effect to think about now. she said its
    a fast and easy day procedure-
    maybe i will ask for one or the other-
    she has a higher recurrence percent
    than me- doc strongly encouraging
    10 years for her-
    would you try tamoxifin ? This woman
    even said the name Letrozoleeeeee
    even sounds like a sinister beast- i know
    many woman are fine on it- but
    honestly- i thought she was going to
    talk about bone issue but she said
    she was so preoccupied in screamfests
    and outbursts with her loved ones that
    bone issues werent even on the radar-
    wow- that surprised me- need to
    think about that one- sounds horrible-
    keep me ( us) posted on your thoughts
  • cassiecanada
    cassiecanada Member Posts: 166
    edited June 2019

    Oh Alice- I love your dry humour-
    still scaring the dog-
    It sounds like the tamoxifin journey
    has levelled somewhat for you-thats
    good news-and thx fir sharing cos
    i need to hear experiences to help
    with decision making-
    an aquaintance today told that
    she turned into a shrieking
    bitch on “ femara”- ya can’t win-
    anyways- thanks for posting-
    tonite is day 3 of tamoxifin
    - taken only cos waiting yet another
    month to decide seems worse-
    so i will take until i decide- ugh
    By the way- somebody mentioned
    that tamoxifin only zeroes in on
    breast tissue and actually stimulates
    in a minor estrogenic way, other
    linings in the body- so i need to look in
    to that because how is it possible
    then for it to lower mets risk-
  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited June 2019

    Cassiecanada, I'd suggest checking reputable sources, like this site we're on, before believing what "somebody said." Science matters, not what some random internet person thinks.

  • cassiecanada
    cassiecanada Member Posts: 166
    edited June 2019

    hey alice- oh, def yeah!
    cant imagine accepting carte
    blanche everything ya hear-
    good to send that message out
    tho- ! thx !

  • momofone
    momofone Member Posts: 11
    edited June 2019

    I recently completed five years of exemestane and because the BCI showed benefit of continuing hormonal therapy,(7% risk of distant recurrence) I am going (back) on tamoxifen. Not staying on aromatase inhibitor because I've had extensive bone loss (have taken Reclast for the last 2 years which did reverse osteoporosis a little bit). Anyone else go beyond their 5 years of treatment and go back on tamoxifen? I had all sorts of issues on tamoxifen during my first diagnosis but have since had ovaries removed. I'm on a 30ish day holiday of being off everything until switching over. Hot flashes seem to continue, but less frequently. No Estring when on tamoxifen because of estrionic actions noted in above thread. Not sure how many years this is going to last.

  • cassiecanada
    cassiecanada Member Posts: 166
    edited June 2019

    Momophone-You may have noticed
    a comment i posted above- if not, I
    mentioned that a woman I know
    ( actually- my daughters bff’s mom)-
    has been on tamoxifin for 7 1/2 years.
    When she reached menopause they switched her to femara which she said
    just about ruined her so went back
    on tamoxifin- got her ovaries removed-
    and like I said- shes now 59 and
    goung on 7 1/2 years- I asked her
    alot and she was kindly willing to share-
    mainly trying to get me steer clear of
    femara if I am able. She has never
    bled, never really had side effects
    and says her brain fog and lethargy
    may be chemo aftermath she doesnt
    know- she says the tamoxifin is
    no big deal for her- i wonder if she
    hadnt had her ovaries removed
    if it would be different- she said that
    procedure is a simple day surgery
    ( at least for her, it was ).
    I may ask my mo about that next time
    i see him

  • cassiecanada
    cassiecanada Member Posts: 166
    edited June 2019

    momophone- what is Estring ?

  • momofone
    momofone Member Posts: 11
    edited June 2019

    Hey cassiecanada, the Estring is for vaginal dryness which was an AI side effect. It was really helpful and I rarely got UTIs once I started using it. My onc. and my gyn said I could be on it -- but not when on tamoxifen as that med has an opposite effect and won't be needed nor is it recommended. There is some estrogen released but does not go into the bloodstream. I had my ovaries out so Im hoping I won't have the tamoxifen issues that I had during my first go around.

  • DorothyB
    DorothyB Member Posts: 305
    edited July 2019

    I am 61.

    My oncotype score is 29 which means 18% chance of recurrence if I take the hormone therapy. Because I already have a little osteoporosis, I will be taking tamoxifen - probably starting the end of this month if I opt out of chemo (most likely will NOT do chemo). I finish radiation on July 23rd (unless I miss a treatment due to machine down, etc).

    I will likely start at the lowest dose I can (probably 5 mg) and slowly build up.

  • cassiecanada
    cassiecanada Member Posts: 166
    edited July 2019
    Momofone- thx for reply and hope
    things are an easier go this time around
    on tamoxifin.
    Hi Dorothy- Thx for posting-a few of us are not on aromatase inhibitors for personal
    concerns eg: osteopaenia- i understand
    a med eg: alendronate can be taken alongside this drug to prevent bone loss-
    however, there are also issues with that one ( side effects eg: throat etc )-
    so rather than risk the se’s from 2 drugs
    i opted for tamoxifin-altho i am well aware
    that many women have had ovaries/uterus
    removed due to the estrogenic-like effects of tamoxin on them-
    so still on fence really- but still taking
    tamoxifin- I had no idea that you could start on low dose and work up- my mo
    just launched me in to 20mg dose
    right oughta the gate- never occurred
    to me to start lower dose- but just so
    you know- its been a month and i
    havent had any side effects yet- it
    may be too soon- but zero side effects-
    actually has me wondering if its even
    working- but i have read that some women
    on here dont experience any until
    a few months in- good luck with the remaining radiation days !

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