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Tamoxifen for gals who have not had chemo

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Comments

  • bluegems
    bluegems Member Posts: 507
    edited February 2009

    awb,

    I love your quote!

    blueLaughing

  • KAK
    KAK Member Posts: 297
    edited February 2009

    Hi, all.  haven't visited in a while.  I already went through natural menopause before I diagnosed and was still suffering.  Now that I've been on tamoxifen a few months, I'm actually having far few hot flashes.  Don't know if it's the effexor I'm taking along with it controlling the SE's, but I've felt just fine now after 3 months on it.  I still want to ask my med onc about maybe getting the metabolism test to see if my body is using it well.

    Just had my six month mamm and it was negative!  Best news I've heard in ages.

  • Makratz
    Makratz Member Posts: 1,605
    edited February 2009

    Congrats Kathi on your mamo!  I bet it's the best news!!  Hope your head is feeling better!

  • AccidentalTourist
    AccidentalTourist Member Posts: 72
    edited February 2009

    Great news Kathi.

  • KAK
    KAK Member Posts: 297
    edited February 2009

    Thanks, Makraz & Nena.  I was so relieved, I wanted to cry.

  • shelteringtree
    shelteringtree Member Posts: 23
    edited February 2009

    Congratulations Kathi! Great news!

    Christina 

  • fairy49
    fairy49 Member Posts: 536
    edited February 2009

    Hi Shelteringtree! I thought tamox reduces estrogen, essentially putting you into menopause, just for the time you are taking it?

  • shelteringtree
    shelteringtree Member Posts: 23
    edited February 2009

    The way it was explained to me by my onc is that tamoxifen works as a lock on cells which disallows them to uptake estrogen. I'm not sure about reducing estrogen though. He never said that to me. I still get a regular period every month though so I know that I am not in menopause. I haven't taken my tamox for two days now and my leg feels so much better. It has got to be somehow related. I guess I will find out next Wednesday when I see my onc. I am still worried though.

    Christina 

  • AllieM22
    AllieM22 Member Posts: 188
    edited February 2009

    Hi ladies-

    yes the tamoxifen works like shelteringtree said. It does not reduce estrogen but your body isn't getting the estrogen so it gives you similar symptoms of menopause. I believe that the AI's that post-menopausal women can take DO reduce the estrogen in the body so that's why they don't want pre-meno women taking them.  

    Here is the info from the NCI site (I wanted to make sure I was correct): http://www.cancer.gov/cancertopics/factsheet/Therapy/tamoxifen

    Tamoxifen:

    Estrogen can promote the growth of breast cancer cells. Some breast cancers are classified as estrogen receptor-positive (also known as hormone sensitive), which means that they have aprotein to which estrogen will bind. These breast cancer cells need estrogen to grow. Tamoxifen works against the effects of estrogen on these cells. It is often called an antiestrogen or a SERM (Selective Estrogen Receptor Modulator). 

    AI's: 

    Estrogen is produced by the ovaries and other tissues of the body, using a substance called aromatase. AIs do not block estrogen production by the ovaries, but they can block other tissues from making this hormone. That's why AIs are used mostly in women who have reached menopause, when the ovaries are no longer producing estrogen. 

    Also Shelteringtree--I heard elsewhere (here) that drinking bubbly water helps with leg cramps--I forget why... 

  • fairy49
    fairy49 Member Posts: 536
    edited February 2009

    Thanks for clarifying AllieM22! I am supposed to start tamox so that helps me too! I have been drinking tonic water it has quinine (sp?) and it works very well, thank goodness! :)

  • KAK
    KAK Member Posts: 297
    edited February 2009
    Tamoxifen is a selective receptor modulator, though, which means that the estrogen can be taken up by some parts of your body, like your bones & circulatory system, which is why it's helpful for diminishing osteoporosis & cholesterol.
  • Makratz
    Makratz Member Posts: 1,605
    edited February 2009

    What do you all think about taking milled flax seed, which has an extremely high phytoestrogens??  (plant estrogens).  Do you think it is safe for ER+?

  • shelteringtree
    shelteringtree Member Posts: 23
    edited February 2009

    AllieM22-I had heard that about the tonic water with quinine. Is that something that is available in any store?

    I have not taken my tamox for the last two nights and as of today my leg feels completely normal and is not bothering me at all. Do you think it could be leg cramps in just one leg? I have been taking the tamox since last October. Do you think it is possible this is some sort of weird delayed SE? When it first all started happening I was worried it may be circulatoy because of the tingling and tightness as I know tamox is known to sometimes form blood clots. My onc told me I could take baby aspirin and I started to as soon as the problems with my leg started. It did seem to help a bit. I don't know. I'm confused and of course worried. Wish me luck ladies!

    Christina

  • fairy49
    fairy49 Member Posts: 536
    edited February 2009

    Hi Christina! Good luck, I am sure everything is fine! Yes, you can buy tonic water in the liquor section of the grocery store, its a mixer for gin too so its sold by the alcohol!

    Lorraine

  • desdemona222b
    desdemona222b Member Posts: 90
    edited February 2009

    I took Tamoxifen for 2 years with very few side effects.  I have a sensitive liver due to having had Hep B, so discontinued the treatment because of that after consulting my onc.

  • AllieM22
    AllieM22 Member Posts: 188
    edited February 2009

    Don't know on your leg cramps--just have heard on this site that that is a common side effect, although of course not everyone gets the same SE's.

    Desdemona--glad to hear you had few SE's. I need to start this weekend! 

    Makraz-there is a lot of discussion on flaxseeds for ER+ women...bottom line is that they really don't know. I think studies have shown that it can be good for women with BC and to prevent it, but unlike soy (which actually is lower in plant estrogens than flax seed although a different type) I haven't seen any studies that show it can be bad. So...I'm putting it on my cereal in the morning! Wish they knew more...

    Question--do you taking tamoxifen take it at night or in the morning? 

  • shelteringtree
    shelteringtree Member Posts: 23
    edited February 2009

    AllieM22- I take mine at night or I had been Undecided 

    Fiary49- Is tonic water different than seltzer? I used to drink alot of seltzer, but I don't remember it containing quinine.

    Christina

  • fairy49
    fairy49 Member Posts: 536
    edited February 2009

    Hi Christina! Yes, tonic water is different, I just drink a glass and it really does the trick! :)

  • AllieM22
    AllieM22 Member Posts: 188
    edited February 2009

    Oh thanks Fairy49--I was just looking at other threads to see where I had read that! :)

  • fairy49
    fairy49 Member Posts: 536
    edited February 2009

    welcome!! I was quite amazed at how well it worked, I had been having that restless leg thingy quite a bit and the tonic water worked in about 5 mins!! :)

    Lorraine

  • shelteringtree
    shelteringtree Member Posts: 23
    edited February 2009

    fairy49-Thank you! I will look for it at the grocery store this weekend.

    Christina 

  • sunandsandgirl
    sunandsandgirl Member Posts: 23
    edited March 2009
    I am being evaluated to take Tamoxifen by my oncologist.  I just heard from my oncologist that I qualify for a biophosphate study.  I was randomly selected to take Clodronate.  The oncologist is running a few more tests before I start taking Tamoxifen.  Has anyone taken both of these medications that is currently on the discussion board.  My oncotype score is 11.  Sunandsandgirl 
  • GrammaD
    GrammaD Member Posts: 2
    edited March 2009

    I'm so thankful I've found this forum to share those things that you can only understand if you've gone through it yourself.  I'm 57, no hysterectomy, but stopped having periods at 35.  I did HRT on and off for about 3 yrs. - it made me irritable and edgy, and I had concerns of future cancer.  I was diagnosed 6/08 with non-invasive DCIS; lumpectomy and re-excision in 07/08; 30 radiation treatments ending 9/30/08.  I had no problems except a few weeks of burned, uncomfortable skin after treatments ended.  I was very blessed and thankful!!  I also struggled about taking Tamox, was determined I wasn't going to, but after much research and talking and talking and talking, I started it 12/2/08.  For the first 2 months, things seemed to be okay........what I hadn't connected were incidences of my heart racing, my insides shaking and jumpy, anxiety, some depression and very emotional.  Things started getting worse, and I realized it had to be the Tamox!  I've never had depression or anxiety or anything like it (even after dx)......I felt like I was losing it; I had thoughts I'd never had before.  I stopped taking it two weeks ago.....and I am now having more good days than bad - and even the bad days are more tolerable.

    Since our bodies are all different, some will do well on Tamox and others won't.  The only thing we can do is try it!   I have chosen to walk in faith!!  I want to enjoy my life!

  • AccidentalTourist
    AccidentalTourist Member Posts: 72
    edited March 2009

    GrammaD I thing there is no woman on this site who does not wish to give up hormonal treatment.   I change my mind about about Tamoxifen several times a day.  Tonight my husband said that looking at photos from before and after Tamox (not surgery and radiation) you can see a physical change in me.  The latest thing I have noticed are changes on my skin.  On my face it started looking like rosacea (rash like skin). I use only half a dose and still get all the side effects.

  • Jherbes
    Jherbes Member Posts: 6
    edited March 2009

    I've been on Tamox for 4 months now and have been experiencing hair loss, night sweats, hot flashes, and insomnia.  My oncologist put me on ambien for the insomnia at first but after my last visit he is having me try Neurontin at night to see if the insomnia is partly caused by the hot flashes and night sweats.  I did not have to have chemo or rad since I had a Bi -Lat Mastecomy and I was only stage 1.  My children are complaining about the hair loss and my husband is noticing that I get depressed.  My period is also very radical and I am experiencing alot of discharge and spotting.  anyone else having this problem?

  • fairy49
    fairy49 Member Posts: 536
    edited March 2009

    oh Janet I am so sorry you are having such a bad time, your dx and dx date is almost identical to mine....I haven't started tamox yet, too scared! I so hope others post with answers for you! Hang in there!

    Lorraine

  • KEW
    KEW Member Posts: 450
    edited March 2009

    Hi--I've been on Tamoxifen since December 12th.  No chemo, no rads, I am going to have a full hyster/ooph in May.  SE to date have varied.  For a few weeks my eyes were really dry and almost unbearable, that has stopped.  Even though I'm 48, I had not started missing periods, but after starting the Tamoxifen, the first period was barely 2 days, I'm usually 5 heavy days, and I have not had a period since the short one in December.  Went through intense night sweats that have all but stopped, still have them once in awhile and sometimes a hot flash during the day.  I'm really tired, but I can't rule out that isn't coming from the experience, surgery, bills, going back to work, kids, worry, etc..  I have had several days of very watery discharge, no smell, I became a little sensitive, so wore a pad for a few days and it stopped, and I'm fine.  For me at least, so far, I think my SE have been pretty OK.  I'm actually more mellow since I don't have the big hormone fluctuations.  Haven't noticed hair loss.  Weight loss, about 8 pounds, would probably be more if I were exercising more, but tired.  Vicious cycle. I'm actually hoping to stay on the Tamoxifen after the hyster/ooph for the full 5 years, being tested now with new test to see how I metabolize it.  If I'm metabolizing well, will stay on it, then move to AI, or whatever is happening in 5 years.

    I was scared to begin taking it, but I decided to surrender and trust, not usually my nature. I have a friend who has been looking at her rx for a year.  We all have to do what we are comfortable with and what our timing tell us to do, sometimes we are on our own clock, and can't/won't do something until we are ready. Just have to love ourselves.

  • sunandsandgirl
    sunandsandgirl Member Posts: 23
    edited March 2009

    Jherbes,

    I have just started tamoxifen.  I experienced my first hot flash last night.  The insomnia started immediately.  All I can say is that it is making me really feel different.  I am having trouble concentrating, and I keep having spells where I just have to sit down.  This still could be residual from my surgery January 27, 2009.   I also was on my period when I started but I am continuing to have discharge and spotting.  I started taking Clodronate 4 days before the Tamoxifen so it is hard for me to tell.  Just know things are different.  I was feeling great post op, but now I am exhausted.

    Sunandsandgirl 

  • AllieM22
    AllieM22 Member Posts: 188
    edited March 2009

    I started taking it two weeks ago and thus far no SE's. Crossing my fingers, knocking wood, etc.

    Fairy, I know you dread taking it but you might just jump in and try it--not everyone has SE's or if they do, many are mild. :) 

  • sunandsandgirl
    sunandsandgirl Member Posts: 23
    edited March 2009

    Feeling much better today!  No sweats.  Must have had a bad day yesterday.  I have been so positive throughout this ordeal since the beginning.  I guess I was due for a down day. Probably should not have even posted.  I am back to positive and ready for these meds to prevent in further recurrence.

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