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Bottle o Tamoxifen

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Comments

  • Tpralph
    Tpralph Member Posts: 281
    edited February 2018

    Cpeachymom, i too go from hot to cold. been on tamoxifen since early December. Getting used to the hotflashes, but the chilled feelings not used to those!  

  • Lewhy
    Lewhy Member Posts: 33
    edited February 2018

    Hi everyone, I started Tamoxifen Valentine's Day. It's been 1 week and I would give anything to feel cold! I had hot flashes before, but nothing like this. I am so embarrassed. I am completely soaked!!! It is disgusting. I really cannot see myself doing this for 5 years.

    I too have heard no grapefruit with Tamoxifen, but I thought I read somewhere not to eat soy?!? My husband and I have been trying to eat a more plant based diet and have been using tofu and endamame. I see my MO in April so I guess I will put that on my list of questions.

    It is so helpful to read everyone's opinions and suggestions! I hope everyone has a good SE free day!

  • Tpralph
    Tpralph Member Posts: 281
    edited February 2018

    Lewhy, my dietician at the cancer centre said i could still eat soy but no more than one serving a day. I just stopped altogether, but if there is a product i eat with a bit of soy, i don't worry about it.

  • Lewhy
    Lewhy Member Posts: 33
    edited February 2018

    Thanks Tpralph. I thought I heard that the original studies regarding soy were performed on mice and rats, which were later found to process soy differently than humans so "they" have said soy is okay, but then I read another study that said it isn't. One serving per day sounds reasonable! And, I don't think there would be too many occasions where I would eat more than one serving, if that, per day. It's all so confusing and seems to change all the time!!

  • trvler
    trvler Member Posts: 931
    edited February 2018

    Yep on the cold. I get cold, put something on to get warm and then have a hot flash. I don't sleep well at night because I am cold and half asleep because I am aware that I am cold. I do think regular exercise helps. I notice it I don't let myself stay still too long, I don't get cold, then hot.

  • bbwithbc45
    bbwithbc45 Member Posts: 367
    edited February 2018

    Lewhy, my hot flashes subsided after a few months on Tamoxifen. I still get them but very few and not as strong.

    I don't think you should worry about them lasting for 5 years.


  • Lewhy
    Lewhy Member Posts: 33
    edited February 2018

    BB, I hope mine do too! This is brutal!!! I am not usually a complainer but I cannot stand tbis!

  • AmyQ
    AmyQ Member Posts: 821
    edited February 2018

    Hi all,

    Let me introduce myself, I'm Amy and have ER/PR HER2 - Stage IV BC. I was dx de novo 5 years ago. I moved from bi-lat mastectomy with reconstruction to deconstruction after two years of neuropathic pain. Started on TC IV for 5 cycles with a great response. NED only after 5 treatments. Then started Femara which worked for two years - moved to Ibrance which failed within months, last treatment, Xeloda worked for 18 months but now new cancer in spine dx as a result of PET on Monday. While I'm happy to ditch Xeloda bc of the HFS, I'm disappointed the cancer is back again.

    My one is starting me on Tamoxifin and Afinitor. I haven't read this entire thread but will go back and see how everyone's done with it and garner some tips and tricks for dealing with side-effects. My main point of writing this is to introduce myself and get to know some of the regulars here.

    Up until now and even including now, I've enjoyed a pretty good quality of life. I recently rescued two beautiful horses from Kill Pens and brought them to Minnesota where they are stable and pasture board. They are such sweet animals and are just now starting to calm down and settle into their new owner and new herd. I really love spending time with them as they take all my aches and pains away. The love and gentleness I see in their eyes just melts my heart.

    I've been slowly working on reliving my youth, things I used to do when I was young and dumb. Skiing, ice fishing, trout fishing, horse back riding, jumping, dressage and training dogs in obedience. I am working on my husband to let me get a German Shepherd puppy for friend and companion but that isn't going as I would like.

    Anyway, hello. I hope you are doing well and if you would like to learn more about me, please ask. I have survived for five years + so far with a terminal disease and I hope to survive a lot longer. I have seven grandchildren I want to see grow up.

    Lots of hugs to you all,

    Amy

  • runor
    runor Member Posts: 1,615
    edited February 2018

    Hello AmyQ. Sounds like you are one busy lady! I hope you do well on the tamoxifen. I have always wanted an Irish Wolfhound and have found a batch of puppies but I am really on the fence about getting one. I hope you get your puppy! (I need to remind myself what a lot of work puppies are!)

  • scrafgal
    scrafgal Member Posts: 413
    edited February 2018

    Amy, welcome! Thank you for sharing your story. It is quite inspirational to hear that you are active in so many ways. I returned to work (on Jan 2) after a year of surgeries and treatment. I am trying to replug into my areas of interest. It is not as easy to do as I thought it would be, partially because work is so time consuming and, now, I still need my rest every now and then.

    I think that this forum is great! Lots of advice and opinions to share!



  • Lewhy
    Lewhy Member Posts: 33
    edited February 2018

    Hi Amy, nice to "meet" you! I understand why you like horses so much. My daughters used to ride when they were younger. Now to give you and runor some advice: Do NOT get the puppy, lol!!! I got a rescue puppy on 1/21, the last week of my radiation appointments. In fact, he went to my last appointment with me on 1/25. He was born 11/08/2017 and I have been so busy with him, it's been crazy!! I am only kidding about not getting one. I am so happy I got him. My husband is a little frustrated with him, but he will get over it. He certainly makes my life busy. I am able to walk home for lunch every day so I play with him and walk him and then my entire night is consumed by him. They are a lot of fun. Good luck!

  • tlfrank
    tlfrank Member Posts: 76
    edited February 2018

    Hello AmyQ - Thank you for sharing your story with us. My best thoughts are with you and you inspire me to become more active. So far I don't have many issues with Tamoxifen - a little nauseated for the first couple weeks, but now after 1 month on it I can't say I have any except for a little increase in arthritic pain

  • Chiarara
    Chiarara Member Posts: 20
    edited February 2018

    Hi Amy- I have been on the Big T for almost 2 months. SEs so far have been mild. I have not adopted any horses, but I do find myself turning into the crazy cat lady- feeding stray cats at the moment, hoping they will get used to me and I can catnap them to the cat welfare shelter...But can foresee this not going well, and I will just end up with a lot of cats.

    Pomegranates- yes, my onc recommended steering clear of regular consumption of the juice, as lab tests indicate it can affect enzymes that metabolise drugs. However in ‘real life’ (ie with humans, eating regular food), these results are much less conclusive. https://www.ncbi.nlm.nih.gov/pubmed/23673492 It is probably one of those things that might cause a problem if you were already not very good at metabolising a drug, you know?

    I love pomegranate, and grapefruit (which caused my onc much surprise). Based on how tricky the little seeds are to extract, I’d say that they are self-limiting and unlikely to cause problems, except in respect to removing stains on the laundry.

    Runor, I say rock on with the morning vodka- if its a Bloody Mary, surely that is extra vegetables? Also, please take a photo of your onc’s face when you tell them about how the SEs are ruining your morning tipple.

  • eastcoastts
    eastcoastts Member Posts: 352
    edited February 2018

    Amy:

    Hello and welcome to Tamoxifen Central. ;)

    I've had very few SEs that are bothersome. Some I feel are mainly moving-into-menopause issues. I have NOT had hot flashes and not everyone does have them. So hopefully, you'll do really well. I got headaches the first couple of weeks but that passed.

    I love the list of things you used to do when you were "young and dumb". ;) I'm also trying to capture the things in life I love and dump the rest! (Well, with exception of work and shitola I still have to do.) Idk. My advice: push for the puppy. I'm pushing for another cat (I'm crazy cat lady/rescuer) and I admit to playing the cancer card. I foster kittens during kitten season (starting in March or so with warm weather) and it's so much work -- and I've cried over the hard cases -- but nothing is more rewarding than a puppy or kitten. I wish I could manage horses. I admire that.

    Only tip I can come up with is magnesium sometimes helps with joint pain, if that occurs. And tumeric, if your MO is okay with this. You may already be taking.

    Glad you joined us.

  • shelabela
    shelabela Member Posts: 327
    edited February 2018

    Hi Amy! Welcome to tamoxifen world.

    Not sure who brought up being cold but it strange, i can be freezing then sweating. Sucks, can't sleep, have no idea how to dress.




  • TaRenee
    TaRenee Member Posts: 406
    edited February 2018

    For those of taking Magnesium, when do you take it? AM or PM? And what dose? ( I wish I could just go get a bottle but so many options!!!

  • Blownaway
    Blownaway Member Posts: 662
    edited February 2018

    Cpeachymom - I am hot cold hot cold hot cold hot cold hot cold...... I am only comfortable for short periods of time between hot and cold flashes. It started with menopause, stopped with HRT, restarted after b/c dx (no HRT allowed), continued through 3 years of Tamoxifen and still continues with no change even though I quit Tamoxifen on Thanksgiving day. I have to conclude that's it's just MENOPAUSE! Uggggg

  • eastcoastts
    eastcoastts Member Posts: 352
    edited February 2018

    TaRenee:

    Magnesium is built into the calcium I take. Not exactly sure how much that is. I used to take -- pre BC -- for migraines a supplement on Amazon called Migra-Relief. A neurologist told me that mag. helps with headaches. But on here, I've also heard it helps with joint pain.

    My headaches are better. But that is because I cut down on wine! LOL

  • AmyQ
    AmyQ Member Posts: 821
    edited February 2018

    Thanks for the welcome everyone - when do you chose to take your pill? I see the literature says pick a time and stick with it. I'm going to shoot for breakfast since I need to force myself to eat this meal so if I know I have to take the pill with food, then breakfast ought to work. I am cold all the time so this will be interesting to see if I get any colder...I will welcome hot!

    Regarding the puppy. I absolutely fell in love with a breeder in northern Minnesota who really knows the bred. She brings in mating dogs from Germany so they don't inbred or dilute the puppies. Their personalities are the opposite of what one expects of German Shepherds. These guys are mellow, smart and very gentle around children. My husband thinks we have the PERFECT dog and doesn't want to disrupt the animal karma in our house. I just want another project to train, show and love.

    Last question, do you wrap your pill in something before swallowing to avoid irritating or burning your mouth or throat as it goes down? My onc suggested marshmallow but even a small one seems like something not easily swallowed. Other suggestions?

    Thanks again. I hope to spend time with you for many many years to come.

    Amy

  • runor
    runor Member Posts: 1,615
    edited February 2018

    AmyQ, if we are talking dogs, wrap all pills in bacon. If we are talking people, wrap all pills in bacon. Cause...bacon.

    I take my pills in the morning. Tamoxifen in the morning, blood pressure at night. But honest to god I had such a horrible time remembering to take it! I'd set a pill on the counter to take the next morning then I'd see it there the next morning and think, is this the pill I'm supposed to take, or did I take it already and this is the pill I put out for tomorrow? It was like my brain had turned to mush. So I got one of those days-of-the-week pill organizer things. I fill it. Snap the little lids shut. Then forget to take my pills. Or I remember, looking at all the days of the week written on the lid and realize I don't actually know what day of the week it is. Crap! Then I leave the bathroom to consult a calendar and while looking at the calendar notice how dirty the floor is, so I vacuum. And forget to take the damn pill!

    The struggle is real.

    Of all the side effects I have I swear the WORST has been the loss of short term memory. Hub comes home and asks me what I did today. (blank, open mouthed stare as I try to conjure up the day's activities ... and come up with nothing) I literally cannot remember what I did 10 minutes ago. Like, I vaguely recall something about bacon. I could be wrong.

    (I have never had a problem swallowing the pill, and I cut mine in half so there is a jagged little edge. No worries. I wash it down with coffee mostly, since vodka is off the list now)

  • scrafgal
    scrafgal Member Posts: 413
    edited February 2018

    I use the pill organizer to keep track...I also set my phone alarm to remind me to start drinking water and to take the pill. It's the only way for me to stasy on track and water before the pill is a must for me. Otherwise, I would get dizzy...

  • scrafgal
    scrafgal Member Posts: 413
    edited February 2018

    oh...and I take it in the morning. My schedule is controllable in the am..

  • jpBCfree
    jpBCfree Member Posts: 72
    edited April 2018

    Soy is good to eat-- so much fake news about soy. Check out the great info in Dr. Greger's Nutrition Facts.org website about this issue and many other nutrition issues ! https://nutritionfacts.org/video/is-soy-healthy-for-breast-cancer-survivors/

    https://nutritionfacts.org/video/is-soy-healthy-fo...

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
    edited February 2018

    Amy, I take 2 10mg tablets at 8pm and 10pm. After the meds you have been on, you will probably do great on Tamoxifen. I have been on Tamox o fun for a year, and am doing better than I was before breast cancer. I also ditched my uterus/ovaries because of non stop cycles that were wearing on me and also to reduce estrogen production. It is wonderful that you are very active. Keep up the great effort and may Tamoxifen be the best drug yet!!! Hugs from the heartland....Michelle

  • Katiejane777
    Katiejane777 Member Posts: 28
    edited February 2018

    Hi everyone! I’m due to start Tamoxifen on the 1st March. Any tips or things to watch out for? I was so stressed about starting Tamoxifen but I’m feeling a bit better about it now. My MO wants me on Tam and then Zolodex once he can see I’m coping with Tamoxifen. He eventually wants to take my ovaries out but I am very nervous about that. How has everyone else coped who has had their ovaries removed? Is there a thread somewhere? Lol I’m still trying to navigate my way around these boards.

  • shelabela
    shelabela Member Posts: 327
    edited February 2018

    I take mine in the morning. They are sitting right by my coffee cup I set out the night before. I also have 2 containers on Sunday I count out 7 pills and put them in the 1 container. What ever works.

    Runor, memory loss sucks. I am so horrible some days.

  • Lewhy
    Lewhy Member Posts: 33
    edited February 2018

    Hi all, I take my Tamoxifen with dinner. I thought if I took it at night I would get most of my hot flashes then, instead of during the day. I've only been on it a week and have noticed more hot flashes, mild nausea, which I hear goes away, and I've had some headaches. The worst is the hot flashes! They are terrible. I haven't noticed any memory issues yet, or maybe I just don't remember, lol! If these are the only side effects I get I feel lucky! I had a hysterectomy about 8 years ago, due to fibroids. I still have my cervix and one non working ovary. I had the blood test prior to starting tamoxifen which did show I am post menopausal.

  • eastcoastts
    eastcoastts Member Posts: 352
    edited February 2018

    Thanks for the nutrition link, Jpbcfree! I watched the soy discussion and kept the site for more viewing. Lots of studies to back up what he says. (I still eat soy.)

    I take Tamox in the evening. I just started doing it before bed and it's worked out well. I place it on my night table so I see it. I'm only forgotten a couple of times, then I just took in the morning.

  • tlfrank
    tlfrank Member Posts: 76
    edited February 2018

    I take mine at night right before bed. Was advised to do this based on likelihood of hot-flashes occurring shortly after taking it.....(Dr was hoping I would sleep through it I guess). Have been on it for 6 weeks now and have a consult tomorrow to discuss any side-effects. Has anyone else had to go in 6 weeks after starting it? My Dr. also is making me come in every 6 months in order to sign a new treatment plan (acknowledging risks). Does this seem right?

  • capecodgirl
    capecodgirl Member Posts: 93
    edited February 2018

    Hi Katiejane-

    I had my ovaries removed in November 2017. Laparoscopic BSO. I did not want to have it done but ended up doing it due to brca2 gene mutation.They offered to take my uterus as well, but I said not if it is not necessary. Now I kind of wish I had it taken out but too late now. Surgery and recovery was very easy for me. Regarding coping after with no ovaries, I do not really feel much different. The main thing for me is I have noticed my fingernails are splitting and cracking and breaking. Dermatologist said probably from lack of estrogen and suggested adding collagen to my diet. My hands get very stiff at night and from time to time during the day. Osteopath says that is likely from the tamoxifen. Also my knuckles are very swollen and I cannot get my rings over them. All in all for me it is hard to know if the different SEs I have are from tamoxifen, lack of estrogen, or just getting older.

    I have not seen a thread regarding this topic.

    Good luck with your decision. It is not an easy one to make .

    Barbara

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