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Bottle o Tamoxifen

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Comments

  • Variable
    Variable Member Posts: 28
    edited January 2017

    Still no Tomoxifen :( At around 9, started getting nervous, looked at the Lifemath calculator, and then made an internal deal with myself that if someone responded to me directly on this forum about taking it, it would be a sign I should. So, as you can see, I am looking for any EXCUSE not to take it, and something in my gut is really fighting me on this.

    Funny image in my brain of an old TV show the A team. One of the characters was afraid to fly so his friends would sneak up on him and tranquilize him right before the flight. Wishing I had an IV form of this I could just ask someone to give me when I am not aware!!!

  • Catkin
    Catkin Member Posts: 42
    edited January 2017

    Variable - I don't know your full medical history and I'm no doctor but if something in your gut is really fighting you on this then go back to your oncologist/doctor/BC nurse for advice and reassurance. Otherwise, just go for it and take the pill :). You can always stop it later on.


  • tbalding
    tbalding Member Posts: 383
    edited January 2017

    Variable, I understand your anxiety totally. I remember staring at the pill for several minutes before popping it and washing it down with water. Then I waited all day for the side effects to start. And when they didn't, that day, I took it the next and wondered if this would be day that se's started. This became my daily routine. And now 6 mos later I don't think about it so much. I still have no noticeable side effects and I make sure that I never miss a dose because it's helping to keep BC from reoccurring. I can't promise you that you'll have no se, several do have them, but many of us have none or they are manageable. I wanted to make sure I tried everything to keep BC from coming back. You won't know unless you try it. We are here to support you if you have se and how best to manage them. Hope this helps. Sending you hugs and positive vibes.

  • jpBCfree
    jpBCfree Member Posts: 72
    edited January 2017

    Wanted to share my Tamoxifen experience at month 3 into taking the pill and hope it helps to inform us all.

    Background: 52 yo (just) post menopausal, Stage 1 ER/PR+ ER-, 0/2 nodes. No chemo/rad but double mastectomy. My first MO suggested I take AI (arimidex) but dexascan showed some post-menopausal osteopenia so I opted to take Tamoxifen because AI was just marginally more protective angst recurrence but seems to be much more harsh on the body (bones + maybe future brain health). I eat very healthy plant based diet and exercise (fast walk/run + yoga or stretch) almost daily. No more alcohol since diagnosis. Weekly accupuncture. Monthly Manual Lymphatic Drainage and massage.

    Started taking 10mg Tamoxifen 11/1/16 at night and increased to full 20mg on 12/2.

    At first I had little/no SE but starting a few weeks ago I started to have more frequent warm flushes/hot flashes. My ankles and hips ache if I sit still for too long and/or don't exercise daily. Feel like I have more cramps like when I was menstruating. Despite my good diet and exercise (and that I've never had weight issues), I've gained appx 5 pounds in the last 3 months.

    Two issues with estrogen blockers I'm still struggling with: estrogen levels + dosage.I don't understand how post-menopausal (i.e. not making estrogen in ovaries but only in fat tissue + pituitary) with lower body fat should take the same amount of estrogen blocker as women with higher body fat. The answer I get is that is that the studies (drug companies) speak only to 20mg full dose and they did not consider lower dosage. My next concern is estrogen levels and if we are being asked to take toxic/powerful estrogen blockers then should be monitoring estrogen levels in blood to see if working and how well...right? My MO is willing to do so and interesting that my estrogen level pre-tamoxifen was lower than post tamoxifen. I'm going to keep track and keep asking every doctor I speak to about it! I agree with whoever posted that they should be giving us more options/information/variations than take this for 5 years and we'll see where to go from there.

    @gardengypsy: I would love to hear more about your experience with herbs/supplements: I don't know if this is a good decision, but the herbs and supplements I take supposedly interact with Tamoxifen pathways.

  • jpBCfree
    jpBCfree Member Posts: 72
    edited January 2017

    Also, another BC group posted this BC Treatment Calculator...interesting but not sure I fully understand.

    http://www.lifemath.net/cancer/breastcancer/therapy/index.php

    Any thoughts?

  • louisedoe
    louisedoe Member Posts: 1
    edited January 2017

    I just started Tamoxifen. This is only my second day.  And I can't stop crying.  Just wondering if folks think this is the Tamoxifen or if I'm just going crazy.

  • Scottiemom11
    Scottiemom11 Member Posts: 1,072
    edited January 2017

    Variable. . .I agree with Catkin. Talk with your MO.

    Scottie

  • Variable
    Variable Member Posts: 28
    edited January 2017

    Hi all,

    Thank you for all the encouragement and comments. I met with my MO on Thursday, and he is a brilliant man. That is why I and again planned to take it starting Friday, giving me the weekend to get a sense of what it might do to me. Logically I know I should take it, but instinctually I just feel it is wrong and will seriously hurt me. I know I am more likely to die from cancer than the SEs of Tamoxifen, but I am still terrified of this prospect.

    On another note, he did mention the body actually produces more estrogen with Tamoxifen because the brain is getting a signal there is not enough in your system when it is being blocked.

    Thanks again! Still deciding...

  • trvler
    trvler Member Posts: 931
    edited January 2017

    That's interesting, Variable.

  • gardengypsy
    gardengypsy Member Posts: 499
    edited January 2017

    tsoebbin~

    Here is the list of supplements that I use that the Dana Farber pharmacist said interacted with Tamoxifen. They are also listed on the Memorial Sloan Kettering website as interfering or possibly interfering with CYP3A, 2C9, P450, and/or 2D6 pathways.

    My go-to cold remedies: Echinacea, Goldenseal and Elderberry Syrup.

    My #1 favorite sleep aid: Valerian.

    A mushroom tincture with strong anti-cancer properties: Reishi.

    Cannabis Oil

    My joint pain remedy: Turmeric

    For my brain: Ginseng.

    I did not have severe side effects on the Tamoxifen. I am switching to the AIs only because my "medicine reconciliation" vetoed the use of the supplements above, some of which I take on a daily basis.

    Bummer.

  • farmerlucy
    farmerlucy Member Posts: 596
    edited January 2017

    I use Apothecana cream for my joints, and just discovered Absorbine Horse Linament for my aching knees. My plumber recommended it and it works great. Stopped the Tamoxifen today since it is causing me too many uterine issues. Guess I'll go back to Femara. I'm afraid to try Aromasin. Back to the devil I know I guess. Still waiting on the biopsy results. This has been the longest and shortest five years of my life.

  • tsoebbin
    tsoebbin Member Posts: 199
    edited January 2017

    gardengypsy…

    I have some valerian in my tea. I think it's 20mg... My MO didn't mention it was an issue. Could it be because of the low amount? Any idea?

  • Catkin
    Catkin Member Posts: 42
    edited January 2017

    louisedoe - I doubt that you are going crazy. That seems quite quick for the feeling emotional to be a Tamoxifen side effect, doesn't it. You could be worried because you have just started the drug and you are on edge wondering if side effects will start. Also depending on your age you could be perimenapausal /menapausal anyhow, which is enough to make anyone tearful.

    Having said that I believe Tamoxifen can make you emotional / feel down /tearful. I think it affects me that way by making me feel menapausal, which makes me weep at the slightest thing sometimes (adverts on TV etc) :)

  • Charlene1
    Charlene1 Member Posts: 28
    edited January 2017

    Hi dtad,  my oncologist used the phrase "we have found",  I took that to mean based on her experience

     she is head of oncology at my hospital and has been in oncology for over 30 years and is also involved

    in BC research so she knows her stuff.... but I have not seen any studies in regards to AL's but also I remember reading on one website that same phrase that most women will not complete 5 years on AL's that a large number stop taking them due to SE's but I cannot remember where I read it.


    Charlene

  • moderators
    moderators Posts: 8,643
    edited January 2017

    Hi Charlene, and welcome here. Probably correct that "we have found" based on her/their experience, as well as research studies. Many people do experience side effects to ALs, indeed, but many can find alternatives, if one isn't working well for them. Hang in there, and glad you found us.

  • gardengypsy
    gardengypsy Member Posts: 499
    edited January 2017

    tsoebbin~ I have no idea how much that is. I drink a pure cup of Valerian that I grow myself. It packs a punch.

    If that tea is helping you, go for it, but ask an onc pharmacist! Noone could get me to stop taking it.Very powerful and probably addictive.

  • superius
    superius Member Posts: 310
    edited January 2017

    gardengypsy ~Do you take those supplements in pill forms?

    I drink Echinacea tea sometimes, put Turmeric in my coffee & cook with the American Ginseng from time to time. I remembered someone suggested Turkey Tail (in pill form) & my MO (and other friends in Onco) said no; but she was ok with the tea and food. i.e. tofu/ soybean in moderation is ok, but no soy protein.

  • lala1
    lala1 Member Posts: 974
    edited January 2017

    So I know that a SE of Tamoxifen is insomnia but has anyone experienced just the opposite? I am 4 years on it (tomorrow!) and find that I sleep very hard and can pretty easily do 8 1/2 to 9 hours. I do wake some in the night, mostly if I have a hot flash, but quickly fall back asleep. Sometimes I even wake up because a body part has gone to sleep because I haven't moved in so long! I know most people would love this SE but I want to be sure this isn't a problem. I'm not tired during the day usually but every once in a while will get really sleepy around 7pm but then bounce right back. I'm just wondering if it is just me or if it even has anything to do with the Tamoxifen. When I first started it, I had insomnia bad. But my doc suggested a very tiny dose of melatonin (0.3mg) which worked beautifully. Once I started sleeping well, I weaned myself off it and haven't used it in a couple of years. I just hope too much sleep isn't bad!!

  • ronitsolo
    ronitsolo Member Posts: 2
    edited January 2017

    i lost 6 pounds in the last couple of weeks. i don't know if its the tamoxifen or following my husband's diabetes diet. i think that losing weight can be a side-effect for a number of medical problems.


  • trvler
    trvler Member Posts: 931
    edited January 2017

    Too much sleep and weight LOSS? Why oh WHY can't I have THESE se's?

  • bbwithbc45
    bbwithbc45 Member Posts: 367
    edited January 2017

    Allison, I'd love these two SEs too, but with me it's the opposite. Can't sleep at night and gaining weight. Scared


  • lmencken
    lmencken Member Posts: 77
    edited February 2017

    Hi All..I am starting tamoxifen on the 6th...I am eager to learn and share!

  • lisey
    lisey Member Posts: 300
    edited February 2017

    I wanted to share with this group that I got my endoxifen tested - free of charge from Kaiser. Many more labs are doing Endoxifen testing to see if you have therapeutic levels of it in your system from the Tamoxifen. There are some new studies out showing that some women with below therapeutic levels have a greater chance of recurrence, but it's still so new they don't have a perfect baseline yet. They just know that those women below 15 nmol/l have a higher chance of recurrence than women above 30nmol/l . If some of you are wondering if tamoxifen is being metabolized, rather than get the genetics test like I did (which said I was an ultra rapid metabolizer) this maybe a cheaper, alternative to make sure it's working for you.

  • farmerlucy
    farmerlucy Member Posts: 596
    edited February 2017

    Just to follow up my uterine biopsy was a benign polyp but gyn wants me to do another hysteroscopy and polypectomy. Instead I'm pushing for a hysterectomy. That way I can stay on Tamoxifen.

  • ARCats
    ARCats Member Posts: 105
    edited February 2017

    farmerlucy, I'm also going to have a uterine biopsy this coming Monday and will get the results next Wednesday. When I saw my gyn and explained that I've been on Tamoxifen and what started out as just cramps, then spotting and now bleeding she recommended a hysterectomy. I wasn't to keen on the idea but the thought of avoiding something worst in the future has made me think that it's the best thing I can do at this time. I'm also thinking of staying on Tamox and just start taking magnesium to help with the leg cramps as others have stated that it helps them. I'm going to be 61 this year and my only thought is if after the hysterectomy if that's what happens I'll be post-menopause, will they then recommend something else instead of Tamox?

    Anyway, wish you luck with your decision.

  • Rubiayat
    Rubiayat Member Posts: 17
    edited February 2017

    Hello all! I'm starting tamoxifen tomorrow and wanted to say hello. I declined to take tamoxifen three years ago when I was diagnosed and had my first surgeries. I was scared of the SEs and wanted to believe I could take good care of myself and reduce my risk. My tumor was small....I was in control. After three years my thinking has changed. I want to maximize my chances that I won't have a recurrence, so I'm going to give this a shot. I'm 44 and the prospect of how my body and sexual desire may change weighs heavily on me. But I won't know until I try. Hoping for the best for myself and all of you ladies out there!!

  • farmerlucy
    farmerlucy Member Posts: 596
    edited February 2017

    Rubiayat - I started a year late for similar reasons.

    ARCats - Sounds like we're on the same wavelength. I'm doing it more for peace of mind. Any type of uterine issue in the future will send me down the bunny trail of testing and retesting. I figure I may as well be done with it. Once you are menopausal they'll probably recommend an AI, but Tamoxifen is always a fall-back option. Take care!

  • lala1
    lala1 Member Posts: 974
    edited February 2017

    farmerlucy and ARCats---I also had all the usual utereine changes from Tamoxifen and after a year of watchful waiting, took the plunge and had a total hysterectomy. Had 3 tiny incisions in my belly and everything removed including ovaries. It's been 2 years and I feel fantastic. I am 53 now and was "slightly perimenopausal" at the time of surgery. I felt great within a few days and was back driving in a week and in the gym at 8 weeks. I followed my doc's orders to walk for half an hour every day and never had any gas issues and only took Tylenol for 2 days after I came home. I am still on Tamoxifen. After talking with my docs, the general consensus was that I do pretty good on it and the slight benefit from swapping to an AI probably wasn't worth the increased SEs. Yesterday was my 4 year anniversary on Tamoxifen. At the end of the year, my MO is going to do the BCI test to decide if I will stay on Tamoxifen, swap to an AI or drop all therapy altogether. I'm hoping to just stay on Tamoxifen because it gives me peace of mind and it's not too brutal for me. I had my 2 year checkup last week and told my gyn that I was so happy that he convinced me to do this. No periods, no bloating, etc and I don't have to worry about those types of cancers. I do still get a pap smear done just to watch out for vaginal cancer but I can totally live with that! Just thought I'd share my story in case it might help with your decisions.

  • farmerlucy
    farmerlucy Member Posts: 596
    edited February 2017

    Thanks layla1! That is good to hear, especially about the recovery time.


  • gmmiph
    gmmiph Member Posts: 662
    edited February 2017

    Hello ladies. I hope everything's ok with all of you.

    I have some questions about hormonal therapy and i hope to find some answers on this thread from the wonderful ladies here. Please allow me to post my questions.

    I am actively posting in the TN groups but actually i have a low positive ER/PR with 5% & 3% hormonal assays respectively. My HER2 is negative. I am about to finish my FEC-D treatment (3 FEC and 3 Docetaxel) with only one Docetaxel session to go.

    After my fifth chemo session two days ago, I was briefly told by my MO in advance that i dont have to undergo radiation and that i should take Tamoxifen 20 mg. once daily initially for 300 days starting one month after my last chemo session and she already gave me a prescription for it. She adds that it is suppose to be a 5-year maintenance and after evaluation, another 5 years for a total of 10 years! She said that i will need it to improve my survival rate and prevent breast cancer recurrence since my ER is 5% positive and my PR is 3% positive. Low weak positives but still they're positives according to her! However, she told me that there is also a moderate chance of developing Uterine cancer from taking Tamoxifen. So there's a dilemma!

    I am thinking that ...

    First, I just became a full-pledge menopause since October last year before i started my chemo in November and from what i have read, Tamoxifen is best given to pre-menopausal women.

    Second, what are the side effects of Tamoxifen? If not Tamoxifen, what other aromatase inhibitors are best used in my case? I've read that Arimidex is used for menopause women but i am not sure about this and i read that it has more serious SEs including baldness. What is Raloxifene? Anyone used this? Do you have any better treatment suggestions?

    Third, Can total hysterectomy prevent uterine cancer and if it does, what are my chances of not developing cancer elsewhere in my body???

    A bit of info about me, I have gone thru right BMX in September 2016 and even before my right breast cancer appeared in January 2016, there were already existing benign tumors in my left breast for i think more than 5 years and i already have a cervical myoma (5cm since my last dx in mid-2015, if i remember correctly) when i was still pre-menopausal and going into menopause and after right breast cancer surgery in September 2016. I did not have my myoma removed because the doctor i consulted said my myoma will most likely disappear after i become menopausal.

    With my specific case presented above, I would appreciate any suggestion, recommendation or references that any of you sisters could give especially those having been in a similar situation i am now in.

    Thank you very much for letting me post and i hope to find answers and friends here too.

    Wishing everyone here the best!

    Take care,

    Gina


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