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Starting/declining hormone therapy Nov, Dec, Jan 2018

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Comments

  • ingerp
    ingerp Member Posts: 1,515
    edited January 2019

    I’m pretty sure the AIs have been around long enough that their efficacy in reducing estrogen is well established. As to whether or not that translates to preventing recurrence in any specific individual—tough to predict. All I know is population-wise they’re effective.

  • RCCaliMom
    RCCaliMom Member Posts: 10
    edited January 2019

    Hi H8 - I was told AT LEAST 10 years (at 49). I've been on anastrozole for four days now, and so far so good - I don't think that I am having any side effects to speak of YET. Some of the other posters have mentioned asking to ease into the med by taking it every other day - I didn't do that, but you might want to ask your doctor - it sounds like a very sensible option.

  • RCCaliMom
    RCCaliMom Member Posts: 10
    edited January 2019

    LP and Ingerp - I guess I am wondering how we will know if the particular type of therapy (AI) is working for me as opposed to the Tamoxifen type of estrogen blocker? Because I am sort of in between pre and post-menopausal (have only been without a period for one month), am wondering what my ovaries are actually doing in this transitional period.

  • Appyfan
    Appyfan Member Posts: 55
    edited January 2019

    Umakemehappy-I just started Anastrozole, and I’m taking it every other day to start (didn’t tell MO). The morning after the first pill, I started sneezing like crazy, then my nose ran like a faucet all day. I must have sneezed at least 50 times that day. I didn’t take it the next day, then took it again last night. I was ok until around 1pm, then had another sneezing fit, but seemed fine after that. I’m not allergic to anything that I know of, and rarely sneeze, even when I have a cold. I’m going to go at least 1-2 weeks on every other day

  • alicebastable
    alicebastable Member Posts: 1,957
    edited January 2019

    I started Tamoxifen last week, four half-doses so far. This morning I woke up with leg cramps; I don't know if it's an SE or coincidence. I took a whole dose this evening, so I'll see how things are in the morning. My usual go-to for leg cramps is upping potassium, like eating bananas, but my MO's nurse told me a few weeks ago that my potassium levels are too high and to avoid foods rich in it. Oy. Maybe I'll drink tonic water at night, I've heard it reduces cramping - has anyone tried it for that? It's loaded with calories, though, and I do not get along well with artificial sweeteners. Any suggestions?

  • ingerp
    ingerp Member Posts: 1,515
    edited January 2019

    RCCaliMom--ahhh--that is a good question! All I can think of is that if your ovaries are shutting down, eventually the AI will be effective. It's only a matter of time before you're in full menopause, right?

  • jaboo
    jaboo Member Posts: 368
    edited January 2019

    So I had an app,. with my MO today. She puts me on AROMASIN + I am already on Zoladex. I am to start taking the Aromasin right away.

    I can take it at whichever time of day I want, but I should stick to it. Any suggestions?

    I asked about easing into it... She was surprised a bit, but then said OK. I can take it every 2 days for a week or two. + I have BMX mid-January, so she said to make a pause for a few days.

    She referenced me to the SOFT + TEXT trial about AI with ovarian supression in young women. I looked it up and well, I will take the AI and hope to be able to stick to it. I am determined to take it or find another one, but I feel I have to... my tumor was 100% Estrogen...

    ah well...


  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
    edited January 2019

    We can gently remind our doctors, that compliance is key to taking all types of medications. Also, taking ownership of that little bottle of pills is psychologically important. The pills don't run your life, or cause you to be scared to open the bottle. You decide how to start and accept that taking this medication is part of your wellness. We know how our bodies react to new substances, and can use that information to help decide how to introduce new preventative medications. Empowering ourselves to work with our doctors, is medicine itself.

    Magnesium helps with leg cramps, epsom salts soaks allows the skin to absorb some of these minerals. I had shin splints from taking Tamoxifen, which were curbed by taking 250mg of Magnesium. I don't take it everyday, only as needed.


  • RCCaliMom
    RCCaliMom Member Posts: 10
    edited January 2019

    Hi JaBoo - I've been taking Anastrozole first thing in the morning, with water but before I eat (I started it last week). I have an alert in the calendar on my phone, and I make a little check mark on the phone calendar as soon as I take it. I am also jotting notes in the calendar entries re any potential side effects that I notice. I haven't really had any problems yet - a headache one morning, but who knows the cause? Anyway, I entered the headache into the calendar, and when I meet with MO again, we can go through the calendar and discuss.

    Don't be afraid to get started, even though it feels a bit uncomfortable to have to add another medication into your mix. You will do great (and if you do have side effects, take note and your doctor can adjust things accordingly).

    Happy

  • ingerp
    ingerp Member Posts: 1,515
    edited January 2019

    I take my anastrozole midday--that's typically my first meal of the day so it's easy to remember. I think I was a little more headachy early on but haven't noticed that much lately. I ended up doing every other day for about three weeks--my MO seemed okay with me setting my own timeline. (I think a week or two out of 5-7-10 years really doesn't matter.)

  • hapa
    hapa Member Posts: 613
    edited January 2019

    I'm about 2.5 weeks into anastrozole and zoladex and like Ingerp, I've been a little more headachy than usual. I'm hoping that wears off. No other side effects. I'm pretty sure all my back aches right now are from the plumbing project my DH dragged me into over the weekend.

  • ingerp
    ingerp Member Posts: 1,515
    edited January 2019

    I consider all cleaning/household chores exercise, hapa. ;-)

  • wanderweg
    wanderweg Member Posts: 487
    edited January 2019

    RCCali - The calendar notes is a good idea. I've been jotting down questions fro my MO so I won't forget them when I go in next month. I have a phone alert set for my tamoxifen, too. It really helps.



  • pebblesv
    pebblesv Member Posts: 486
    edited January 2019

    LPlibrarygirl, Michelle-in-cornland and Wised - THANK YOU so much for the positive vibes and good thoughts. Surgery went smoothly and we have 2 fertilized little embryos! Freezing them for now. Hopefully this is my last surgery for awhile, ideally ever!

    Have 10 days now where I don’t have to take anything, going to enjoy it. Then the tamoxifen journey starts. Dun dun dun!

    Jaboo - sorry if I missed this, but was there a reason why at your young age they or you want to shut down your ovaries and go with an AI vs tamoxifen? And I agree re: I have to eat meat still! So trying the moderation and organic path.

    RCcalimom - I asked my onc how we know chemo or hormone therapy or what not is working. He said we don’t, there’s no way to track it like prostate cancer can track PSI levels or something like that. We just know if it doesn’t come back. Pls let me know if you hear anything else as I know that’s a frustrating answer!

    Wanderweg - when do you take your tamoxifen? So far so good re: no side effects still?

    Feeling a little bit like this on a rainy post-surgery Monday. I’m actually at work in the office today but another week before I can exercise. So Domino and I are like this

    image

  • wanderweg
    wanderweg Member Posts: 487
    edited January 2019

    Pebbles - Somehow I missed that you had surgery for egg retrieval. I'm going to claim chemo brain. And distraction by your cute pup. Really glad it went well, though. I really feel for you and other women who have to deal with fertility issues with this stupid cancer. I take my tamoxifen along with 5 mg of melatonin every night at 7:00. I think the combo helps me sleep because when I lay down at night I feel just a wee bit woozy. As if I've had a couple glasses of wine. That's the only side effect, (and I count it as a good one) so far, and I'm a little more than 5 weeks in.

  • dani444
    dani444 Member Posts: 216
    edited January 2019

    Pebbles, so glad your surgery went well! I hope you are able to be as relaxed as Domino is in that pic! You deserve a restful day.I am still just following along here until I start my tamoxifen after rads. I still need to put in a call to my MO to nail down exactly when I am to start, just procrastinating I guess.

  • LPLlibrarygirl
    LPLlibrarygirl Member Posts: 82
    edited January 2019

    Pebbles, yay for your successful surgery! Enjoy 10 blissful days of no appointments, medicine or treatments. Hope you are resting comfortably on the couch with Domino right now!

    RCcalimom, I suspected that there might not be a way to tell how the endocrine therapy drugs are working. And that brings me back to the question about the dosage, again. If we all have different amounts of estrogen (and progesterone) and we're all different sizes and ages how does one size (dosage) fit all?! I can't wait to ask my MO about that.

  • RCCaliMom
    RCCaliMom Member Posts: 10
    edited January 2019

    Pebbles, congrats on your little fertilized embryos - how exciting! Glad the surgery went smoothly - relax with cute Domino!

  • egregious
    egregious Member Posts: 145
    edited January 2019

    Pebbles,

    Hope you're recovering ok from your procedure.

    Thanks as always for the sweet Domino pictures!

  • Cjzach10
    Cjzach10 Member Posts: 29
    edited January 2019

    Hi all!

    I'm starting femara tomorrow so i wanted to hear from others in the same boat!

  • wised
    wised Member Posts: 184
    edited January 2019

    Pebbles, that is wonderful! Relax and take care of yourself. Domino Heart

  • jaboo
    jaboo Member Posts: 368
    edited January 2019

    RCCalingmon, thanks for your answer... the calendar reminder is a great suggestion. you take it in the morning, Ingerp takes it midday, others still in the evening - I think I just have to try and see what works for me...

    hapa, when I started Zoladex, I didn't have any SE untill about a month after the first dose. I guess maybe it has something to do with the monthly cycle. I noticed first mild hotflashes shortly after the 2nd injection.

    PebblesV - congrats to your eggs! ❤️ and regarding your question - why shutting down my ovaries + an AI - - - it's because the latest release of SOFT\TEXT trials. These trials show an advantage in young women when taking ovarian supression + AI over taking Tamoxifen. I believe hapa here is diong the same out of the same reason - am I right hapa? If I remember correctly she is about my age (although I can't rely on my chemo brain as much, sorry hapa if I am mistaken)

    LPLlibrarygirl - the dosage bothers me too!! I am quite tiny, always take small dosages of medication... and now I am to take the same dosage as a woman weighing say a 100 pounds more. I actually asked yesterday - and my MO just said there is no other dosage. In the next breath, however, she said lets test your estrogen levels. I was glad she proposed this, since it was next on my questions list 🙂. I will know the result end of Jan. during next meeting (next Herceptin injection).


  • ingerp
    ingerp Member Posts: 1,515
    edited January 2019

    Pebbles congrats on the embryos and the down time. I put in my Christmas letter for 2018 that I started the year thinking it was going to be blissfully uneventful but ended up with 67 medical appointments. I know how two free weeks feels!!

    Re: timing of the pills, honestly my biggest fear going into this was that the AI would interfere with my sleep, but I haven't found that to be the case at all. A little woozy sounds great! ;-)

  • hapa
    hapa Member Posts: 613
    edited January 2019

    Jaboo - I am 42 and taking the AIs + OS because I had it for three months as neoadjuvant treatment and the only SEs were hot flashes, so I decided to go with the devil I know. Though my MO did mention that it has been shown to be more effective than tamoxifen.

  • jaboo
    jaboo Member Posts: 368
    edited January 2019

    hapa, thanks for clarifying. I'm glad to hear you had no big SE's from OS+AI! I hope it stays the same for you!

    Hot flashes can't be helped apparently, but I personally see them as a proof that the anti-hormone tx is working...

    My aunt is just finishing her AI's after 5 years. I am just starting...

  • pebblesv
    pebblesv Member Posts: 486
    edited January 2019

    Thank you wanderweg and Dani and LPlibrarygirl and RCcalimom and egregious and Wised and Jaboo and Ingerp and all you lovely ladies for the well wishes!

    Wanderweg - good to know you take tamoxifen in the evenings, I think that's what Michelle-in-cornland does and what I'm going to do too. Especially with your example of no SEs so far! And yes, dealing with trying to preserve fertility is something I never expected to have to do. My husband and I had actually decided NOT to do any sort of IVF thing prior to the bc hitting, ironically partly because I didn't want to "mess with my natural cycle", and we've always been content with just our "paw family". But suddenly when the bc hit and I realized that door might close, everything changed in terms of priority for me, and after the lumpectomy and that wire localization and 6 weeks of radiation treatment and bone scans and CT scans, suddenly IVF is a walk in the park in comparison. Funny how life and your outlook on things change!

    We're still fine either way this turns out, whether it's in the cards for us to have children or always be a "paw family"... just want to feel we're doing everything we can. At least preserve the option.

    Ingerp - this morning I said to my husband excitedly, "Guess what I have to take tonight? Nothing!" - 9 more days to enjoy that. Here's to hopefully a blissfully uneventful year for you in 2019.

    Cjzach10 - good luck with your start on femara! I took it (letrozole) for 10-14 days with the min stim IVF treatment and did not have any SEs during that time.

    LPlibrarygirl - I came to my surgeon with 3 pages of questions and oncologist with 5 LOL. I look forward to hearing all the details after your visit with your MO! I too am curious about the dosage being only 5 ft. My onc said it's because that's what the oncotype stats were based on (20mg) so it's most reliable, I'm curious if your MO offers more flexibility.

    Jaboo - thx for letting me know, l looked up the study! http://www.ascopost.com/issues/july-25-2018/8-year... - makes sense then why we're both premenopausal and our oncs would favor ovarian suppression and AI for you and tamoxifen for me. It seems whether you needed chemo or not has a lot to do with the outcomes. For anyone curious, here's part of the summary from this article, which also explains why we're all being prescribed different things from our oncs. for being pre-menopausal:

    "It turns out that the excellent outcomes in women considered sufficiently low risk not to require chemotherapy diluted the benefits of the interventions being studied! The 8-year overall survival of these women in the SOFT trial was 98.8% for tamoxifen, 97.9% for tamoxifen plus ovarian function suppression, and 97.7% for exemestane plus ovarian function suppression... Among chemotherapy-treated patients... The benefits in 8-year disease-free survival were more consistent among SOFT and TEXT, from 71% for tamoxifen to 76.7% for tamoxifen plus ovarian function suppression to 80.5% for exemestane plus ovarian function suppression."

    Domino apparently is just fine with me needing some bedtime recovery when I return home from work lol. Dani, Wised, Egregious, Salamandra, etc. one more Domino pic for today:

    image

  • Cjzach10
    Cjzach10 Member Posts: 29
    edited January 2019

    Pebblesv Thank you! And how could that cute little Domino not make anyones anyone's day better!

  • ghostie13
    ghostie13 Member Posts: 39
    edited January 2019

    I was suppose to start taking Femara on Monday and all I can do is state at the bottle of pills.....😡......I can't seem to make myself take them.....

  • findingoptimism
    findingoptimism Member Posts: 31
    edited January 2019

    Joining the gang! Finished rads mid December with no substantial challenges so I hoped I would skate through everything. I am close to post-menopausal, but not close enough for my oncologist so she recommended Lupron+AI. Since Lupron didn't have an end date, I chose to start on Tamoxifen in mid-December. It has been a rough month. I am counting 12 side effects with the worst being the overwhelming stomach acid and now the insomnia. Some of them are tapering off, but cannot be soon enough. See the doctor next week and deciding whether to change my direction.

  • LPLlibrarygirl
    LPLlibrarygirl Member Posts: 82
    edited January 2019

    Welcome Finding Optimism! We're sorry you have need of this website but happy you have joined in the discussion. If nothing else helps, you will at least find that the Domino therapy on this thread is great! I'm enjoying the month off so I can't comment on any SEs except to say that having 12 of them sounds really crummy.

    Cjzach10, it sounds like you are enjoying our mascot too! Good luck as you start your AI. And good luck to you too, Ghostie. I wonder if anyone has any visualization ideas (of the pill working it's magic) that would be helpful?

    JaBoo, keep us posted about the estrogen level test. I'm going to ask about that too.

    And I thought I had a lot of questions for my doctor... I love that you had 5 pages, Pebbles.

    Ingerp, 67 appointments and you are still going strong! I totally get that you/we never would have imagined that would be how you/we would be spending the last few months. And here we are...

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