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Bottle o Tamoxifen

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Comments

  • TinyDancer5
    TinyDancer5 Member Posts: 217
    edited February 2019

    My last refill of T was a generic - Mayne Pharma - which I don't want due to too many hot flashes. I just called in another refill and asked for the Actavis brand that I've been on since 2016 and I was told that "Brand names are no longer available, only Generic pills or in a liquid". Looks like I'm stuck with the Generic.

  • Lomlin
    Lomlin Member Posts: 116
    edited February 2019

    TinyDancer I was able to get the Actavis from my pharmacy with no extra cost, that is the generic form of Tamoxifen. The Actavis is the manufacturer, the generic name is Tamoxifen Citrate. Brand names are Nolvadex and Soltamox.

    Dizzybee, I see my oncologist on Monday, I will look into mirtazapine.


  • Cpeachymom
    Cpeachymom Member Posts: 249
    edited February 2019

    Lomlin- yes to the heart pounding. That’s usually what wakes me up at night before the hot flashes hit. I can see how that would be tied to anxiety for some people. I wake up, notice the heart pounding and think, “Here it comes”, because I know a hot flash is coming on.

    Princess- I had hip pain for about 3 months, I was convinced I had Mets. It hurt to stand up, it hurt to lay down. Not even really my hip, more like the top of my pelvic bone. Then like magic it just went away. I don’t think it was even a different brand for me. It’s so hard when we’re told to watch for new lasting pain and then given drugs that cause pain!!

    WC3- Cold flashes! I’ve been having them right along with hot flashes for most of the year and a half I’ve been on Tamoxifen. Sometimes they’re short, other times they can last a really long time. And they’re always Before a hot flash, never after.

  • Cpeachymom
    Cpeachymom Member Posts: 249
    edited February 2019

    timetobebrave- I can say for me that the long lasting bone chills did not last. It was ridiculous for a while where I Just Couldn’t Get Warm. That was early on and lasted maybe a month or two. Now it just comes in waves like the hot flashes.

  • findingoptimism
    findingoptimism Member Posts: 31
    edited February 2019

    Lala and BlueGirlRedState and pretty much everyone on the forum,

    Thanks for sharing your wisdom on your Tamoxifen experiences. Have been trying to get a lot of exercise, drinking soooo much water, and have begun more regular stretching. I am continually amazed at the new side effects that show up and disappear just about the time I think I cannot take them anymore. Once I figure out how to manage the constipation, I may have this licked (until the next side effect).

    Loopy

  • Socat
    Socat Member Posts: 3
    edited February 2019

    Hi all! New to the group but am 16 months post DCIS. I have been taking Tamoxifen for a year (after 33 radiation treatments) and I have been getting major migraines while on it - anyone else? I use to get monthly migraines about 3-5 times a year when i was getting my period. Not a single migraine after surgery or during radiation. Started on 20mg tamoxifen and in 5 weeks had 3 migraines. My MO cut me down to 10mg 2x daily, that work for a few months and now a few months ago, the migraines have started again. I got one so bad at work yesterday that I could barely drive home when I left. She did prescribe pain meds, butalb-acetamin-caff, I've taken 4 in the last 12 hours and although it's not as bad as last night my head is still killing me. The last time I told my MO about the migraines all she said was drink more water, which I have been - apparently not working...anyone else having migraines or really bad bad headaches on tamoxifen? I feel like such a wuss sometimes, going to bed at 6pm with a headache, and I hate that this is affecting my life like this, but not sure what else to do. I've tried caffeine (Coke or coffee), caffeine pills, pain pills, magnesium supplements, acupuncture,....no other aches, pains, or side effects really, just these stupid migraines. Thanks everyone for letting me whine a little, and if anyone has any ideas, I'd sure appreciate them!!

  • princessbuttercup
    princessbuttercup Member Posts: 161
    edited February 2019

    CathieScott,

    Migraine headaches are the worst. I used to get frequent migraines, too, and now get them less often (but they haven't gone away entirely). Have you tried Excedrin Migraine? If I take one tablet at the first sign of a headache (typically vision problems such as flashing lights), I can usually nip it in the bud.

    I have joint problems on tamoxifen, and am trying to get the manufacturer switched back to a previous prescription. I spent some time on the phone talking to a pharmacist at the mail order company my insurance uses, and learned that Mayne bought out Teva's Tamoxifen business and stopped producing their own version. The pharmacist was able to tell me exactly which version of tamoxifen I was taking in December, when I had fewer side effects. Unfortunately it was the one no longer in production. I'm now going back to Actavis.

    All of that is to say that you might want to try a different manufacturer. Good luck!

  • jallyson
    jallyson Member Posts: 13
    edited February 2019

    CathieScott, While many of us take Magnesium to help with body aches and other reasons, I have also read that it helps with migraines.  Hope you will find relief soon.

  • Lomlin
    Lomlin Member Posts: 116
    edited February 2019

    Cathie I agree with Princess try a different manufacturer. I had some bad SEs when I used TEVA, I was on Actavis, I went to the pharmacy and asked them the next time I refill my RX if they could please stick with Actavis. They did. Much happier. Good luck.

  • Catkin
    Catkin Member Posts: 42
    edited February 2019

    LomLin. I'm sorry to hear you are getting bad anxiety from the Tamoxifen. I'm 52 and have been on Tamoxifen for 3 years and almost 3 months (I'm counting). I was perimenapausal before taking tamoxifen but not anxious or depressed. It did stop my periods immediately. I feel that the drug does give me anxiety and low mood. The first 1-2 years were the worst I think.- really crushing anxiety sometimes.I also several times got a fast heart rate for no reason for either a few minutes or up to an hour- very weird, unnatural, disturbing feeling (I did not feel like I was being squeezed though). I stopped caffeine and alcohol and take magnesium, vitB complex and VitD. Now in year 4 I'm still easily stressed/ low mood but nothing like the early days and I actually feel that these side effects are better than they were and my brain/body has finally reached some kind of adjustment. The nurse allowed me a 1 month 'Tamoxibreak' per year which helped get me through. I had a small amount of invasive cancer so she was happy for me to do that. I hope the Mirtazipine or Xanax work for you if you need them.

  • Lomlin
    Lomlin Member Posts: 116
    edited February 2019

    Thanks Catkin. I am 64, diagnosed at 63, and no periods. I do take magnesium and vitD, trying to find a vitB, do you have a recommendation? After the episode of the heart for several days, I am not experiencing that now. Weird, I wake up with a different SE from Tamoxifen. For a long while I wasn't getting leg cramps, this morning I had a real doozy. I was wailing, woke my husband up, kicked the dog out of bed. It was bad. So I wonder if I need to up my magnesium intake. I just don't know anymore, once I figure I have this licked I have a different SE. I only have been on the Tamoxifen since Aug of 2018, so not even a year yet. Geez.

  • Nas
    Nas Member Posts: 76
    edited February 2019

    I started to drink plenty of water with soaked fresh ginger in it, my joint pain is a lot better, still there but feels 10 times better

  • runor
    runor Member Posts: 1,615
    edited February 2019

    I found taking codeine in combination with acetaminophen helped my migraine headaches. Used to buy a product called Mersyndol. No prescription needed. But in Canada they do not keep it on the shelves out front, you have to ask for it as it is stored elsewhere. No amount of aspirin or ibuprofen or tylenol touched my headaches until I added the codeine. I have not hand a migraine in a long time, thank heavens, my heart goes out to those who do. So brutal!

  • lala1
    lala1 Member Posts: 974
    edited February 2019

    I have a question and am not sure where exactly to post it.

    Did anyone's doctors talk to them about future implant swap? I was told that implants have a 10 year warranty and lots of women choose to swap it out then so their implant is always covered. My PS said he tends to tell women to swap them out about every 12-15 years. My BS said he's seen women never swap them out. Just curious if anyone has been given any hard info about this. Or maybe tell me where I should post this question! I just posted here cause I think this thread has lots of informed gals. :)

  • Catkin
    Catkin Member Posts: 42
    edited February 2019

    Lomlin. I take the Vitamin B complex because I heard that it is good for stabilising mood and calming the nervous system. I'll tell you what I take but I live in the UK so you probably can't get it. It is Boots RE:BALANCE Re-energise Vitamin B Complex. It contains the following at 100% NRV (Nutrient Reference Value) for each vitamin: Vit B1-Thiamin, Vit B2-Riboflavin, Niacin,Vit B6, Folic acid, Vit b12, Biotin, Pantothenic acid.

    That's good the heart racing thing has gone, what a relief. A lot of people on this forum seem to find taking Magnesium helpful for cramps, have a look at the old posts. I had cramps just mildly and now hardly at all (though once I had a shocking one that left me with an achy calf).

    I'll be really annoyed if some new side effect comes in the last 2 years of my 5 year stint. Shocked The side effects do come and go. I hope that we all can reach a steady state that is tolerable.

  • Lomlin
    Lomlin Member Posts: 116
    edited February 2019

    Thanks Catkin. I will check into the vitB. Weird thing with my leg cramp I figure I would pay for it today and it's like I never had it, usually I too get the achy calf. Nothing!

  • TaRenee
    TaRenee Member Posts: 406
    edited February 2019

    lala1 My PS told me he didn't need to see me till roughly 2028 unless I have problems. He did tell me that 10 years was the recommendation but with the new implants it could be longer. He said I may not need to have them switched out. The research is ongoing on that end, and as implants change, so do the recommendations.

  • Elizabeth9
    Elizabeth9 Member Posts: 31
    edited February 2019

    I started Tamoxifen 20 mg on Jan 6. Today is the FIRST day I have woken up and been able to go down the stairs as a normal person---as opposed to a creaky, achy, one step at a time person. Could it be that my body has acclimatized??

    I have had my surgery, finished chemo (minus last two treatments due to reactions), done radiation. Now when people ask me, "Are you cured? Are you clear? Are you in remission?" I say, " I gueeesssss so? If all went according to plan, I am clear?" I do not like that answer. I want an 'all clear' , full body MRI. Anybody else feel this way after being done everything?

  • TWills
    TWills Member Posts: 509
    edited February 2019

    I would love to get an “all clear”. Even if a scan was clear doesn’t mean it will stay that way unfortunately. For my stats my MO said she would consider me “clear” in about 20 years if nothing pops up before then. It’s the worst part of the whole “experience” for me, the not knowing. The simple answer to “are you cured?” Is, time will tell. Most people don’t know this, I sure didn’t!

  • DeeBB
    DeeBB Member Posts: 71
    edited February 2019

    I just started Tamoxifen 02/04/2019. So far I haven't had any noticeable side effects, actually I was a little light headed at one point this morning but that could be because I haven't eaten anything today. When have the side effects started for most of you?

  • salamandra
    salamandra Member Posts: 751
    edited February 2019

    I had a couple of side effects that seemed to come and go really quickly in the first two weeks - some ashiness and stuff. The one that's still bothering me now - acid related - seemed to settle in between week 2-4.

    Also I'm waking up sweaty the last week or two, which NEVER used to happen to me. It's really disconcerting.

    Elizabeth9 and Twills - I struggled with that question too! I finally came up with an answer that works for me. I say, "Everything went according to plan and they say I have a 90%+ chance that I'm done with it forever!"

    To me that captures the fact this round of treatment is over, but the final outcome is unknown (i.e. not perpetuating the idea that early stage cancer is truly curable and NBD), but also that treatment went well and framing it positively to make it easier for the listener.

  • molliefish
    molliefish Member Posts: 650
    edited February 2019

    I am happy to report I've pretty much returned to "normal" which includes very few if any hot flashes. That said my skin is incredibly dry in winter where it used to be just 'dry' and with my long time hair dresser we've decided my hair came back about 80% quantity, but about half of the texture (the strands are very thin where they used to be coarse and curly). It's still curly like before and I am learning new styling and care practices to defeat the frizzies. My nails chip and peel a lot where they never did before, so i keep them trimmed shorter than I used to, but really who knows if this is long term effects of chemo or tamoxifen. I've just started my fourth year of tam on Jan 10th (wow!!!!) and will take it for 5. i've not decided if i'll take it longer but if the side effects have disappeared to this degree I can't say i wouldn't take it for another 5. I WOULD like to see any studies regarding the risk/benefit analysis over the 10 year period. Keep on Keepin' on Girlfriends (and Boyfriends).

  • runor
    runor Member Posts: 1,615
    edited February 2019

    Elizabeth9, when people ask me how I am I often say, " Fine. For now." Because that is the truth. For now I am fine, although I might learn otherwise at any moment.

    Molliefish, I am wondering too if I would continue beyond 5 years. At this point no one has suggested that I should. Some of the initial side effects have gotten more manageable, most happily the intense body ache in bed at night, the stiff joints, that seems to have really eased off. Still get hot flashes day and night. Still have Ninja leg cramps that leap out of nowhere and attack me. The odd bout of constipation (that was way worse in the beginning!). I have aged rather drastically and my hair is thin and frizzy and my middle is fat and frumpy. But I think I would consider it for another 5 years, but only maybe a pill every few days. I would reduce the dosage for sure. There is no research saying a reduced dose is effective. There is also no research saying it isn't. So.... ?

  • Angel-of-Courage
    Angel-of-Courage Member Posts: 1
    edited February 2019

    I too had horrible hot flashes after starting Tamoxifen and read about taking Gabapentin for them. I take 300 mgs in the morning and 600 at bedtime. I read about it in some chat room and it has really worked for me. I was waking up 2-3 times a night soaking wet and now it rarely happens. And the ones during the day have disappeared.

  • Paco
    Paco Member Posts: 53
    edited February 2019

    Just for your information, please ask your doctor to get regular blood tests if you are taking Tamoxifen. I was on Tamoxifen for 9 months and have decided to take a break from Tamoxifen due to hair loss and have been off for about 2 weeks now (since January 31). I had an appointment with my primary doctor and she ordered routine blood tests for me (I had the blood drawn on Feb. 12). Turns out my ALT and AST levels (testing for liver enzymes) are abnormally high and my WBC (eosinophils) were down close to 0, i.e., abnormally low. Both of those indicators are normally due to alcohol abuse. I drink very little, maybe one drink or at most two per week, so there is no way my liver is affected by alcohol. It is likely due to the tamoxifen.

    This only confirms my decision to come off the med. I had early stage cancer, so my doctor gave me her blessing to go off, but please be careful if you are going to take this medication.

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900
    edited February 2019

    lala1 - The plastic surgeon I consulted before any surgery said 7-10 years before implants would need to be replaced, but that it was an out-patient surgery, and much less involved. It definitley is something to talke about with the surgeon,and why there is variability in the life span of implants. I did not do reconstruction. I did consider DIEP.

  • Sgoodkin
    Sgoodkin Member Posts: 1
    edited February 2019

    I'm in last 4 months of 5 years on aromatase inhibitors and have worsening cold chills. My thyroid is normal and exercise a lot. I really haven't complained about them to and doctor. I Wonder if they will go away when Istop the pills in 3 and half months.

  • moderators
    moderators Posts: 8,637
    edited February 2019

    Welcome, Sgoodkin! Sorry you are here, but hope you're able to find the answers you're looking for. If you need help navigating the forums, please don't hesitate to reach out to us. We're here for you!

    The Mods

  • WC3
    WC3 Member Posts: 658
    edited February 2019

    I skipped my Tamoxifen today. I've only been on it for a month and a half but it makes me acutely depressed and I needed a break. It puts me in the strange position of not wanting to die from cancer but also feeling like I can't hack existence.


  • runor
    runor Member Posts: 1,615
    edited February 2019

    WC3, your post gave me pause, for a few reasons. I think your short post covered a wide range of complicated topics.

    I was no fan of tamoxifen. I felt and continue to feel that the research ball got dropped a long time ago and we do not know the lowest effective dose OR if different women would be fine on different doses. OR why not use a more creative approach to taking tamoxifen other than blasting us with it for 5 years then pulling the plug and sending us on our merry way.

    When my Oncotype said I was not likely to respond to chemo I was, at first, relieved. But then I thought, well if there are only 4 bullets in the gun to shoot this damn disease; surgery, radiation, chemo and hormone blockers, I am down to only three bullets. I hope whoever is aiming the gun has a steady hand and good aim!

    After much research (most of it wildly inconclusive) I decided that I was going to take HALF a dose of tamox, then I would only get half the side effects at half the intensity. Right? WRONG!! I've had it all. But I want to say this to you, for me at least, it got better. Much to my surprise, it got better. Yes, my joints ached like hell for the first year but a while back I woke up and thought, hey, wow, I don't hurt as much. Oh my hair is still falling out in handfuls, I get terrorist leg cramps, epic chin hairs and hot flashes and my hoohoo packed its bags and moved to Florida. BUt overall, I have to say I am doing better than I thought I would.

    I see that you were only diagnosed last year. It has been a bad year for you. Maybe, just maybe, your depression is from the fact that some seriously depressing things have actually happened to you. Your life got sucked into some circus of crazy that you were not planning. You have weathered treatments and adjusted to some terrifying realities. And there are not guarantees. I think depression, not to mention a well earned case of PTSD, is completely rational, absolutely normal, to be expected and YOU ARE NOT ALONE in that! I say this with the most gentleness I can muster...it might not be the tamoxifen. It might just all be crashing down on you now, now that all the rush and fuss has ended and you are just standing there, mouth open, a little wobbly like wow, what was that bullshit all about? You may be feeling this way even if you weren't on the tamoxifen - because the timing is about right. We stagger through and then sometime later, when the dust has settled, THEN we get the shakes and wobbles and come unhinged. We are much stronger and tougher than any of us knows.

    If you feel the need for a break, but also feel at risk not being on the drug, take half. OR take a whole pill every other day. OR take half a dose in the morning and half at night. This is not what your doc would tell you to do. This is not standard of care. But your doc also CANNOT show you any research that says your risk goes up if you lower your dose for a while. Tweaking your dose or the timing of it might cover both your concerns. It might allow you to have a bit less of the drug in your system, and maybe your mood will change. AND it allows you to have some drug in your system, providing you some measure of protection and some mental security that you didn't abandon it completely. Obviously, you are the ultimate decider and you know what you are most comfortable doing. But if you are feeling unsure, I don't think it has to be an all or nothing proposition. You can fudge it if you want. I hope you feel better. Misery is ...miserable.


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