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Bottle o Tamoxifen

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Comments

  • KorynH
    KorynH Member Posts: 84
    edited July 2010

    IsThisForReal-

    I just found the LifeMath risk calculator. According to it, I get  a 14% benefit if I add Tamoxifen to the mix. That is for mortality rates, though. It doesn't show recurrence rates but my onco says the greater risk there for me is the her2+.   I wish I could find a more clear risk calculator. Anybody have one?

  • whitedove
    whitedove Member Posts: 121
    edited July 2010

    hope I won't have bad side effects.

  • IsThisForReal
    IsThisForReal Member Posts: 154
    edited July 2010

    KorynH - here another site, however it's down for maintenance right now.  www.newadjuvant.com/default2.aspx  It's supposed to be back up in September.

    Canada - Dx DCIS - IDC - 2 cm 30/Nov/2009

  • didel
    didel Member Posts: 733
    edited July 2010

    You know I was a LOT worried. My onc went over the study explaining the results and answering all my questions and he definitely made me feel better. I hope to not have any of the serious side effects but was happy to learn from the ladies here that for some the SE went away eventually. My onc also said if the SEs were too terrible I could stop that it was all preventative. I feel since completing chemo I don't feel so nervous about stopping T if I ABSOLUTELY had to.

    Diane 

  • cs7777
    cs7777 Member Posts: 303
    edited July 2010

    Koryn, The difference in the %'s you were told is that the 50% one is relative risk reduction and the small one (3% or 14%) is absolute risk reduction.  So for example, say that w/o tamoxifen a woman with a certain type of BC has a 90% chance of NO recurrance in a decade, and by taking tamoxifen that is increased to 95%. Said another way, she has a 10% chance of recurrance in a decade, reduced to 5% by tamoxifen.  Therefore, the tamoxifen has an absolute benefit to her of 5% improvement in recurrance rate (10%-5%), and a 50% relative benefit ( (10%-5%)/10% ).  Most of the tamoxifen studies show for many types of BC that tamox has a 50% relative benefit in reducing recurrances, and ~40% relative benefit in reducing BC deaths.  But, for any given woman, how big that benefit is on absolute terms depends on what her absolute risk was to begin with. For small low grade DCIS, a woman's absolute risk of recurrance may only be a couple percent in a decade, so reducing that by half is pretty miniscule.  (I made those #s up...I don't konw what the % are for DCIS recurrence)

    Another thing to be aware of is that the absolute % for recurrances and mortality have a time frame attached.  In other words, if someone says you have a 10% chance of recurrance, its 10% in some time frame, usually a decade. And that accrues over the decades, so your absolute risk of recurrance is greater than 10% over your lifetime if you live more than 10 yrs.  Luckily, tamoxifen's or any other treatment's benefit to you is greater on absolute terms if you're younger than if you're elderly, since you will have more decades of life for the benefit to accrue. 

    The LifeMath calculator is real, and quite good, except for the fact that it only looks at mortality and not at recurrances.  Of course mortality is the biggest concern but I'm all for no recurrances too.  I wrote to the researcher once asking if they had plans to add recurrance data but didn't hear back.

    Re AIs, about 25% of your estrogen is produced by other parts of the body, so it still feeds BC after menopause.

    Whitedove - good luck to you once you start tamox.  Here's hoping it's all good for you!

    CS

  • whitedove
    whitedove Member Posts: 121
    edited July 2010

    Dear CS7777,

    Thank you for the thorough lesson in understanding risk ratios. I really appreciated hearing your explanation of risk of recurrence. It helps to hear things put in different ways. Thanks for your good wishes about Tamox. I have mixed feelings about it being overtreatment. I am mostly worried about the SEs. Thanks for understanding. I am such a newbie to this topic. It is helpful to learn from all of this interesting information from folks on this thread. 

  • KorynH
    KorynH Member Posts: 84
    edited July 2010
    Yes CS7777! Thank you so much! That was the best darned explanation of "odds" I have ever read! White Dove-You can access the Life Math calc HERE <------ side effects vary for many women. Even for the same women but at different stages of her recovery after chemo. My first go around with Tamoxifen gave me a gross sticky snot like vaginal discharge many others have complained about here.  The second time, 8 months later, it was the leg cramps, distorting, disfiguring  charlie-horse like cramps that woke me up all night long. I'm crossing my fingers for ya!
  • whitedove
    whitedove Member Posts: 121
    edited July 2010

    Hi Koryn, Thank you so much for the supportive post. I did read about your terrible SEs and the swollen mouth. I guess it is like everything with BC - never is anything simple.

  • dsgirl
    dsgirl Member Posts: 193
    edited July 2010

    Hello....... and THANK YOU THANK YOU to all of you from the bottom of my heart for posting the LifeMath link.

    I have suffered with SE from Femara, Tamoxifen, and Aromasin starting in November '09, and recently decided that my body was telling me to quit these hormone therapies.

    There has been this nagging thought creeping into my mind ever so often that I have not made the right decision, but after using the calculator I find that I chose the right path. I know we are all different and the stats are just what was calculated based on other b/c patients, may and may not apply to us individually, but I now feel so at ease with my decision and the rest of my life.

    Can never thank all you wonderful ladies enough.

    dsgirl

  • ansar
    ansar Member Posts: 7
    edited July 2010

    It's been a couple of weeks now and I've been surprised about my lack of SE's, save one brief bout of nausea followed by a hot flash.  Things have been so easy that of course I then worried that I could be in the poor metabolizing group.
    However, the last couple of days I've had the MOST hair-trigger temper.  I've yelled at my husband, one daughter (twice) and, most alarming, a complete stranger. (I mean, I didn't think I yelled at her, but a few moments later, she referred to me nonchalantly as "the lady who is yelling about this").

    I would never had attributed it to the Tamox if not for this helpful thread. Back to acupuncture tomorrow and I better add meditation and yoga to the mix or it's going to be a long, hard 5 years for my friends and family!

  • cs7777
    cs7777 Member Posts: 303
    edited July 2010

    Hey ansar, no guarantees, but a local friend of mine (i.e., not on BCO) said she had similar feelings of hair-trigger temper and being really short with people for the first few months but that it waned and now she doesn't feel that way, so perhaps that will happen for you too.  Or perhaps your family will learn not to cross you, which could be good too!  ;)  She too had a couple kids and she jokes that it wasn't her, they really were being pains in the a**. 

    dsgirl - best to you. Indeed each of these decisions is really personal.  Do remember that the data in the LifeMath thing is for mortality , it doesn't provide info on recurrances.  I'm not saying that should affect your decision, but wanted to point it out just in case it is important to you and you hadn't realized that. 

    koryn & whitedove, you're welcome.  This stat stuff really drives me nuts because it often gets presented to us poorly and then we go on to think about it inappropriately.  Sigh. 

    whitedove, you're the second person I've seen on this thread that did BMX for DCIS and was still recommended tamox.  I know that MX's don't get every last breast cell so theoretically a recurrance could occur, plus, there might have been an invasive that wasn't found, but, both times I've been surprised about the tamox still being recommended.  Please know I'm not an oncologist and I'm NOT saying its wrong or bad, but...like you I would also be asking how much benefit it can have.  Your idea of a second opinion seems like a good one.  In addition, remember that you can try it and always stop if SEs affect your QOL too much.  Again, best wishes!

  • whitedove
    whitedove Member Posts: 121
    edited July 2010

    Thank you CS

  • bcincolorado
    bcincolorado Member Posts: 4,758
    edited July 2010

    Hi Tamox Friends,

    I'm a firm believer in "least invasive" when it comes to medicine and surgeries.  Since Tamox has the least amount of SE, I'm thankful it is an option for me.  I wouldn't say I have a shorter temper now, I do find that I am more nervous now and get anxiety that I never had before (like driving on the freeway).  I am definitly more emotional though and can start crying at the drop of a hat now.  Life can be worse though.....and has been.....so another 4 1/2 (at least) years for me!

  • didel
    didel Member Posts: 733
    edited July 2010

    Yes I agree, I warned people at my office that I was starting a new drug that may cause mood swings and I might get bitchy....they said ok so no different then how you are now...and I said...OH WORSE MUCH MUCH WORSE..and gave them an evil laugh...I don't know if I scared them, made them laugh, or if they now just think I am the crazy lady in the corner office. LOL

    Good night all!!

    Diane

  • KorynH
    KorynH Member Posts: 84
    edited July 2010
    I found a very interesting tid bit on Tamoxifen and where the drug company gets their 50% reduction claim. I call it a tid bit because nothing written should ever be your only source, and of course you have to research everything you read and consider the sources, but I thought some of you may find this interesting nonetheless. You can read large portions of the whole book at this link Sex, Lies and Menopause is the title. Click the title to go to the web page at google books. Pages 99 - 107 are the pages that talk about Tamoxifen. You can turn the pages at the top using the arrows. The pages about synthetic hormones I found very interesting since I took birth control pills for over 15 years and the day I was diagnosed with breast cancer my doctors all told me to stop taking them and when I asked why they all said "because they cause breast cancer." This chapter explains the  why behind that claim. That begins on page 77.
  • gulp
    gulp Member Posts: 44
    edited July 2010

    Hi everyone. I've been meaning to write about lavender. It's been mentioned a few pages ago and for what it's worth I thought I'd share what I had heard about it. Before my mastectomy I went to a wonderful massage therapist who specializes in women with breast cancer, She uses essential oils and I saw her several times. Among other things she used lavender oil and told me to rub it into my scars (from my multiple lumpectomies). Then I read the same article that cs7777 and others read about lavender and I got concerned. Ah, forget the summary, read the emails she and I wrote:

    I wanted to ask you a question about lavender. I read some articles 
    the other day about a connection between lavender and breast tissue 
    growth in adolescent boys, and its link to estrogen. http://www.sciencedaily.com/releases/2007/01/070131204136.htm

    It got me nervous. I was curious if you have heard of this.

    I love lavender and have been putting it on since we met last week. 
    Now I am nervous about putting it on my body.

    Karen

    Hi Karen

    That article appeared a few years ago and in my opinion and in the opinion of many experts it's ridiculous.

    In the instance of the boys in the article they did not investigate other ingredients in the products they were using or the quality of the lavender oil, which was probably adulterated with chemical and not therapeutic grade lavender oil. I'm sure the products contained sodium lauryl sulfate and other petroleum based products and chemicals. That article is unfortunate and very misleading.
    Lavender has always been known to be safe for breast tissue, in fact, often reducing lumps.
    You should feel comfortable in using the Young Living lavender.

    Anyway I thought I would post this. Of course she is a massage therapist and not a scientist. Aside from that one article (study or whatever it was) I haven't heard anything else about lavender.
  • cs7777
    cs7777 Member Posts: 303
    edited July 2010

    Thanks gulp for the additional opinion about lavendar.  I will note that the lab tests of lavendar oil and tea tree oil on breast cancer cells, that showed stimulation of BC growth through signalling of the estrogen pathway, used lavendar and tea tree oils directly.  These studies did not use the personal care products that were associated with the boys' gynomastia (breast growth) that contained the oils but also many other things, as you note.  Anyone interested can find the actual research study (not news summary)  here: http://content.nejm.org/cgi/reprint/356/5/479.pdfhttp://content.nejm.org/cgi/reprint/356/5/479.pdf.  As an ER+ BC patient, this is enough for me to not use products with these oils, but I respect anyone else's opinion for themselves that this isn't strong enough data to warrant their own avoidance.  Best -

    CS

  • bcamnb
    bcamnb Member Posts: 334
    edited July 2010

    Hi Favourite Women,

    Re recurrence with tamoxifen. I am taking it mainly to prevent cancer IN THE OTHER BREAST. It has only about a 5% reduction for the BC breast but up to 40% for the other one. That is a good enough reason for me.

    And as an only partial metabolizer of T, I am avoiding lavender and tea tree oil as well (trying my darnedest to avoid anything with phytoestrogens).

     Have a great w/end all

    C

  • cs7777
    cs7777 Member Posts: 303
    edited July 2010

    whitedove, one more thing, and obviously you don't need to answer if you don't want...did your onc give specific statistics or reasons why, even w/the BMX, you should take tamoxifen?  I mean, beyond the general "it reduces recurrances and mortality"?  As I said before I'm not suggesting it's right or wrong, I'd just find the medical reasoning interesting. 

  • ansar
    ansar Member Posts: 7
    edited July 2010

    Ladies--

    Thanks for your encouragement regarding the onslaught of my "grumpfest".  For whatever reason, acupuncture seems to be my favorite approach to all things Tamoxifen.  I had an appt. today, and felt a ton better after treatment. (I'd say it's the placebo effect if I wasn't the biggest Natural Born Skeptic you'll ever meet!).  I realize that while my body is getting used to this onslaught of Estrogen With Nowhere To Go, I better be really kind to myself.  Taking people up on things and saying "no" are two things I added to my life after surgery that I don't plan to stop now!

  • didel
    didel Member Posts: 733
    edited July 2010

    Ok so after all the tossing and turning about taking T and FINALLY taking my first pill this week, my onc just told me to stop taking it for a while.

    I am having horrible joint pain all over every joint, while he (and I) don't think the T is responsible for the joint pain (since it started before I took my first pill), he thinks it is adding to the fact that I feel very depressed about my body aches and the fact that post chemo I think I'm heading to permanent menopause. I know T can cause mood swings and I guess he wants me to get the joint pain under control until I feel ready to start again. I am seeing him next week but I feel very defeated.

    Just needed to vent

    Diane

  • cs7777
    cs7777 Member Posts: 303
    edited July 2010

    ansar - so cool about the acupuncture.  I keep saying I'm going to try it at some point for something, but still haven't.  Any idea if it works for allergic rhinitis (hayfever)? 

    DiDel, vent away, that's why we're here.  So sorry you're having such a tough time with the joint pain and the depression about it.  I think time itself helps a decent amount - some time past all the surg and chemo etc. to let the body heal from all these traumas...hopefully that will be the case for you.  Hugs to you!!  Do something nice for yourself this weekend if you can.  :)

    Have a good weekend everyone!

  • didel
    didel Member Posts: 733
    edited July 2010

    Thanks CS I appreciate your response. I think I am gonna call it a night and try again tomorrow.

    Good night all! Have a good weekend as well.
    Diane

  • bcamnb
    bcamnb Member Posts: 334
    edited July 2010

    take care Di  (only 6 pm here ;-)   a rest/break from T may be all you need and you may be back with the rest of us soon ;-)))

    C

  • KorynH
    KorynH Member Posts: 84
    edited July 2010

    I stopped having periods after chemo too. My onco was fine with my not taking T until, you guessed it, the periods returned 8 months later. Side effects were life / quality prohibitive. I can't go without sleep and being drugged in order to sleep for 5 years. We are discussing alternatives next month. Worst of all were my legs cramping and contorting all night long.....very painful too. Sexual side effects the worst. I need something that won't further hamper that area of my life!

  • bcincolorado
    bcincolorado Member Posts: 4,758
    edited July 2010

    Well I sure can't say that any SE is worth acupuncture to me.  I know it uses small needles, but they are still needles.....and I'm sure tired of being a pin cushion!

  • lee45
    lee45 Member Posts: 22
    edited July 2010

    So... I just had a 2 week break from Tamoxifen ( I stopped taking it before my exchange surgery.) I was so looking forward to a break from the non-stop hot flashes. I don't know if the heat had been making them worse lately, or they're just getting worse since the Tamox has built up in my system (I've only been taking it since May). Guess what? No change at all!! I don't know what to make of this. Does it take longer than that for it to clear your system? Now I'm wondering if it was the Tamox at all. The leg cramps stopped in a few days. Maybe the hot flashes are just regular menopause. I stopped getting my period in February during chemo. Now I can't even tell myself I can just take a break from the Tamox if I need one!!

  • whitedove
    whitedove Member Posts: 121
    edited July 2010

    Koryn, thanks for the  birth control pills comment and for the Sex Lies and Menopause title.

     CS777-Hi, response to Q.  onc said that estrogen is produced all over the body, tamox would prevent them from receiving estrogen > would decrease cancer recurrence risk. 15 years from now rate of rec. goes up & by then any treatments would warrant far more aggressive interventions than Tamox.

  • cs7777
    cs7777 Member Posts: 303
    edited July 2010

    Tx whitedove. 

    lee45 - sorry your hotflashes didn't get any better.  Given the residence times of tamoxifen and its metabolites in the blood, it would take 4-8 wks or more (depending on which metabolite) to significantly clear from your system.  So either, the 2 wks obviously wasn't enough to get the concentrations low enough for you to stop triggering the hotflashes, or, as you say, possibly you're going into regular menopause & it has little to do with tamox.  Unfortunately you probably won't know for sure unless you take a longer break in future.  I hope they get better with time!!!

  • cs7777
    cs7777 Member Posts: 303
    edited July 2010

    Hey all, there have been a couple gals (so sorry that I can't recall exactly who) who've mentioned being really tired all the time, and same or others who're having trouble with weight gain (or inability to lose weight).  I was researching thyroid hormone and hypothyroidism for a friend just diagnosed with that and ran into some Q&As from cancer patients who couldn't recover from chemo-related fatigue and it turned out they had low thyroid hormone levels.  Main symptoms of hypothyroidism include fatigue, weight gain/inability to lose weight, heavy menstrual periods, sensitivity to cold, constipation, and more.  Anyway, I mention it for the gals w/fatigue and weight gain in case you want to have your levels checked (simple blood tests used).  I googled thyroid and tamoxifen out of curiousity and couldn't find definitive data about any relationship between them. 

    bcincolo this one isn't for you since it would involve getting poked!  ;)

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