Starting Tamoxifen - Fall 2011

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Natters
Natters Member Posts: 361

I'm still enjoying my Surgery Month group and Radiation Month group and I thought I'd try starting a Tamoxifen group for those of us starting T now to support each other. Not sure how many women with DCIS are starting T this month, so I put "Fall 2011" in the subject line to make it comprehensive. I started reading the Bottle o'Tamoxifen thread several times but it was just overwhelming to me, with so many posts already! So that's why I'm starting a new thread, for us Tamox newbies coming from a DCIS dx.

One thing that has been personally hard for me every step of the way was accepting that I needed tx, despite having no symptoms and no evidence of disease except for some specks on a mammogram and then of course the biopsy results. So even though I have a grade 3 manifestation, now that I've healed from surgery I feel GREAT and I am so ready to get on with my life and stop thinking about DCIS and BC. And although it involves me taking a pill every day, which I have never done before, the Tamox seems easier somehow than rads, and so I started it the very day that I got my prescription.

Anyway, that's enough from me and I look forward to hearing others' experience on a similar journey.

Nat 

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Comments

  • YamahaMama
    YamahaMama Member Posts: 221
    edited September 2011

    Hi, Natters...  I'm with you on the Bottle thread...  Hopefully there will be others who are starting with us so we can share our experiences.  I started my Tamoxifen mid-August, and only have five more in my first bottle... 

    BTW, your screen name brings back good memories for me...my mom, who passed away a year ago last April, used to call me "Natterly," and my grandmother, who turned 100 a year ago in July, then passed away last December, used to call me "Natty."  Thanks for the good thoughts! 

    Edited to add:  Sorry!  Just noticed this thread was intended for DCIS DX...

  • YamahaMama
    YamahaMama Member Posts: 221
    edited September 2011

    Deleted my prior Edit.  Sorry for the confusion! 

  • Natters
    Natters Member Posts: 361
    edited September 2011

    Natatlie, my name is Natacha (pronounced Natasha). So I usually get called that or Nat, but I also get Natty from a couple friends. And I've used Natters in the past as a screen name because Nat is always taken.

    Sorry to hear about your losses, and glad to hear your grandmother lived to such a ripe age - you must have good genes. Great genes, even :) 

  • orlandpark65
    orlandpark65 Member Posts: 106
    edited September 2011

    I kiss the Tamoxifen every night when I pop it.   I've been taking it for 3 weeks and so far so good.  I know other women that had no side effects.   I think the good of the pill out ways the side effects.    Keep taking it so that you don't have to go down this BC road again.    Good luck

  • rn4babies
    rn4babies Member Posts: 409
    edited September 2011

    I just had my lumpectomy yesterday. I will probably start rads in October then Tamoxifen after that. My mother and aunt took it for 5 years with no SE's. I hope I'm just as lucky.

  • ANA_424
    ANA_424 Member Posts: 109
    edited September 2011

    I had IDC, too. Hope it is ok to post here, since I'll be starting Tamox in a few weeks. Just had final chemo last week, so need to wait until that is out of my system. I've already got hot flashes from the chemopause, so my onc has prescribed Effexor. Also waiting to get chemo out of my system before starting that.

    I'm hoping this combination will work for me. The hot flashes have not been horrible, but not fun either. They are mainly at night, so interrupt my sleep and I love sleep :-). Will keep you all posted once I get started.

    Best wishes to all!

  • Natters
    Natters Member Posts: 361
    edited September 2011

    I don't mind if you have IDC as long as you don't mind I have DCIS. I am hoping that I will be one of the majority that my MO told me does not haveSEs. I like orlandpark's attitude and I will try to remember that! Thanks for posting, guys. So far, so good at my end!

  • BlazerFanC
    BlazerFanC Member Posts: 71
    edited September 2011

    I'm another late August 2011 Tamoxifen newbie.  I'm 2 weeks into my first bottle and set a reminder alarm on my phone so I remember to take it every day.  This is my first daily prescription. 

    The only thing I've noticed so far is a rash that is new to me.  I don't know for sure if it's from the Tamoxifen, but I'm watching and waiting to see if it gets worse each day.

    Other than that, it's not too bad.

  • survivor11
    survivor11 Member Posts: 550
    edited September 2011

    3 weeks into my first bottle and no SE yet except for an occasional hot flash.

  • dblh1227
    dblh1227 Member Posts: 34
    edited September 2011

    Hi everyone.........I just completed rads a week ago and have an appointment with the med onco in 2 days so I believe I will get my prescription this week.  I am nervous.......more nervous about the Tami than I was about anything else in connection with this nightmare.  Let's all hope for minimal SEs!!  Good luck to all!

  • ahewitt2
    ahewitt2 Member Posts: 4
    edited September 2011

    Hi. I took my first tamo pill this morning -- after taking a half hour to figure out to open the bottle!! By the time I got the top off the bottle, I was more relieved than anxious about starting to take it. One of the pharmacy inserts warned of possible interactions with "herbal/dietary supplement products". Does anyone know about this issue?  I've read that it's not good to take tamoxifen with some antidepresants (btw, effexor's ok) or with benadryl -- but I don't think of those as "supplements". One good thing about tamoxifen (besides cutting recurrence risk in half) is that it helps build bone density, while other BC treatments do the opposite. Yay! (DX: DCIS 5/29/2011; < 1 cm, stage 0, grade 1) two excisions, 10 rads in one week. 

  • Natters
    Natters Member Posts: 361
    edited September 2011

    My pharmacist asked me if I took anything herbal or natural before he gave me my bottle, ahewitt. If you are taking anything, I would definitely call your pharmacist or DR to make sure it's not contraindicated.



    Why do you think it's bad with Benadryl? Both my pharmacist and my MO know I take something like Benadrly to help me sleep and they seemed ok with that?



    I went from hating that I'd have to take a pill every day to trying to find out if I'm eligible for a clinical grail where I might have to take another drug during rads.

  • ahewitt2
    ahewitt2 Member Posts: 4
    edited September 2011

    Hi Natters. I WILL check with pharmacist.  I don't want to count on my oncologist being up on all the possible supplements. RE: benadryl, I read that it keeps you from metabolizing tamoxifen into endoxifen -- which is how it protects the breast.  However, I've also read that oncs are prescribing tamoxifen even for people who lack the enzyme that metabolizes it into endoxifen (CYP2D6). Still, if there is a comparable sleep aid to benadryl (melatonin in my case), it makes sense to use it, instead (maybe!!). I guess there aren't a lot of solid answers, just best guesses and statistics. Anyway, I'm very grateful that there are 15 years of well-studied women taking tamoxifen. We're lucky they participated in clinical trials. I am in one on partial breast radiation for DCIS. Hope it doen't have to help my daughter down the line, but am glad to know they are still studying how to treat, cure and PREVENT this plague.

  • Natters
    Natters Member Posts: 361
    edited September 2011

    I agree with participating in clinical trials! Unfortunately, I am considered too young for partial breast - I asked because I wanted that for myself, not just to advance science. I am waiting to hear if I am eligible for one now that tests women with DCIS for HER2+ and then gives half of the + women a targeted therapy in addition to rads. I haven't started rads yet so I could still do it. I will look into that sleeping pill I take, too - I thought it was like Benedryl but maybe that's a different substance - I take them both every night at the same time so it's sad to think they might cancel each other out....

  • BlairK
    BlairK Member Posts: 399
    edited September 2011

    Dear Natters - Benadryl is not a sleeping pill although it often has the effects of one.  It is a strong antihistamine for allergies or even a strong allergic reaction.  I take it for my eczema to reduce itching.  I am familiar with Ativan which is for anxiety and Ambien which is a well-known presecription sleeping pill.  In any event, you really should consult with either your BC specialist or your internist.  Thank you for your posts to my thread about my wife and I hope this post is helpful for you.  Best regards, BlairK

  • Natters
    Natters Member Posts: 361
    edited September 2011

    BlairK, Benadryl and some common OTC sleeping medications are basically the same drug: diphenhydramine. I am pretty sure that both my MO and pharmacist know that I take 50mg each night, but I think I will double-check that it is OK. I keep meaning to wean myself off it, then I get hit some new stressor that compromises my sleep...but maybe I can switch to melatonin or something else for now, if the diphenhydramine interferes with my body's ability to metabolize endoxifen.

  • ahewitt2
    ahewitt2 Member Posts: 4
    edited September 2011

    Everything I've googled about benadryl and tamoxifen suggests benadryl cancels out tamoxifen''s helpful effect. I'm curious to learn what your onc thinks.  Paxil also interferes with tamoxifen, as does Tagamet. Prozac and some other SSRI's are less problematic but do interfere somewhat. Effexor is fine with it.

  • hondagirl
    hondagirl Member Posts: 74
    edited September 2011

    I have been putting off taking Tamoxifen since having surgery but am planning on starting this month after meeting with my MO.  I am 39 and am worried about the side effects being premenopausal.  Does anyone else share this concern?

  • Natters
    Natters Member Posts: 361
    edited September 2011

    Hondagirl, my MO told me that the farther away you are from menopause, the less likely you are to have side effects. I may be 3 years older, but I'm not ready to go through menopause or have those symptoms, either! I've been taking it almost a week now, though, with no side effects :)

  • hondagirl
    hondagirl Member Posts: 74
    edited September 2011

    Natters- I sooo hear you! I feel like I will be in menapause before I know it anyway.  I don't need to feel like I got there any sooner than I have to!  I am hope I don't have the SE's too!

  • tgisiner
    tgisiner Member Posts: 69
    edited September 2011

    I started tamoxifen in August. Has anyone noticed a change in their hair? Can't get mine to do a thing! ugh...

  • 90norge
    90norge Member Posts: 9
    edited September 2011

    Started Tamox on 9/1/11.  I had some tummy issues at first but now I'm just not sure if it is the drug or just stress that makes me feel bad.  I assume a combo of both??  overall hoping that that pill a day will keep me out of surgery again

  • gginga
    gginga Member Posts: 3
    edited September 2011

    I was diagnosed with DCIS Sept. 2010. Had lumpectomy. Had 5 days of Mammosite radiation. Started tamoxifen Oct. 2010 so I am furthur along in this journey than most posting. I was nauseated for the first few days but eventually adjusted. My biggest problem has been with insommnia. Tried a couple of prescription sleep aides that did not work for me. Melatonin did not help me. Finally I am now using Tylenol PM which has worked the best for me and gives me at least 5 to 6 hours of good sleep. Hope this helps somebody that has not yet found what works for them. I had my 1 year mammo. check up last week with a cancer free report. :)

  • Natters
    Natters Member Posts: 361
    edited September 2011

    Tgisiner, I have not noticed any change in my hair. Although I am overdue for a haircut and will be for awhile now because I scheduled my appt too late. I did notice more greys when I was wearing it up in a ponytail the other day, but I don't think they are all that new. In other words, I don't think that a couple weeks of Tamox gave them to me.

    Gginga, I was already using something like Tylenol PM when I was diagnosed and most nights it works, but I find that I am not sleeping as much as I used to - although I would not call it insomnia. I do not that think that is a side-effect from Tamox, though, because I was having problems sleeping before taking it, due to stress. It has just been a stressful year. So far, Tamox has been the least stressful part of it. As far as I can tell, NO SIDE EFFECTS SO FAR :D

  • ahewitt2
    ahewitt2 Member Posts: 4
    edited September 2011

    gginga, Does your oncologist know that you're using Tylenol PM? I just checked its ingredients and It has generic benadryl in it, and benadryl interferes with  metabolizing of tamoxifen. It's my layperson's impression that you might as well not be taking tamoxifen if you are also taking benadryl. I'd love to hear an oncologist's much-more-informed opinion than my own.  I'll ask my oncologist when I see her next month.

  • dxr52
    dxr52 Member Posts: 2
    edited November 2011

    Hi All,

    I am a 44 year old mom of a 6yr old girl and wife. Back in April, I was diagnosed with DCIS, from my local hospital. I sent my biopsy slides to SLoan Kettering in NYC and they found stage 1 cancer in my left breast. I have no family history of BC. I opted for a bilateraI mastectomy at the end of June. Turned out to be a good decision because they found cancer in the nipple and severe hyperplasia something in the other breast. I started T. almost 3 months ago, I am just about to refill my first bottle. I find that I am short tempered and irritable. I also lack motivation to do anything. Are these side effects of the drug?????Or just cancer in general?  I am having some flashes albeit mild and infrequent.

  • dxr52
    dxr52 Member Posts: 2
    edited November 2011

    I am losing a lot of hair. My hairdresser says it is healthy and sees a lot of regrowth, but the hairbrush and the shower are filled with hair.

  • jwilco
    jwilco Member Posts: 486
    edited November 2011

    I'll be meeting with my oncologyst on Thursday.  I will have to take Tamoxifen for sure.  Not positive about any chemo yet.  <sigh>  I'm very nervous about this appointment. 

  • bb226
    bb226 Member Posts: 102
    edited November 2011

    Hi, I am new to this thread. I started tam 9/9. I have had very minimal SE. I do notice that I do not tolerate alcohol without problems at night. That is ok since a study came out today on how alcohol increase breast cancer risks. Dxr 52 I also asked my hairdresser about hair loss but she said my hair looked good. Also all the symptoms you are having are listed as SE of tamoxifen. Other threads suggest that your body will adjust with time to some side effects. I know that I did have a side effect that did resolve with time. 

  • Natters
    Natters Member Posts: 361
    edited November 2011

    I'm still doing ok on Tamox, nearly 2 months after starting. Not everyone has SEs. You can always stop taking it if you are one of the people who does get SEs- doesn't hurt to try it, right?

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