Starting 2015 with Tamoxifien

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  • Professor50
    Professor50 Member Posts: 220
    edited January 2015

    I take mine (20 mg) after dinner (usually around 7 or 8). I have to say that although I have had a few very hot flashes wake me up one two nights overall I seem to be sleeping better (not worse) overall. To me, it is just amazing that this little pill can do what it does. I am thrilled that it exists!

  • Blownaway
    Blownaway Member Posts: 760
    edited January 2015

    Psalm - I wonder why your dosage is so much more than the rest of us?

  • IsabelArcher
    IsabelArcher Member Posts: 297
    edited January 2015

    Hi all, I started taking Tamoxifen in April 2014, partway through the ATEMPT clinical trial for stage 1 HER2+. I have a little ER/PR positivity (!) too, hence the Tamox. SEs from Tamox: I have hot flashes but was having them before. I hit menopause the same time as my diagnosis (age 51). So I figure the hot flashes will just continue now for 5 yrs. I had some all-over prickly sensations when I first went on it, so my doc had me interrupt for 2 weeks, and when I went back on Tamox, that sensation never came back. She told me that the body sort of "resets." Given my attitude toward hot flashes--that they're better than PMS, and better than cancer--my only real complaint is that I gained weight. About 7 pounds. This is distressing for me, as I had successfully lost 12 pounds right before my diagnosis and felt fantastic about my weight. I assume it's the Tamox doing this. But again, what else is there to say other than that 7 extra pounds are better than cancer recurrence!

  • Manu14
    Manu14 Member Posts: 153
    edited January 2015

    IsabelArche - Your complaint about weight gain is pretty common with women taking tamoxifen or the aromatase inhibitors. I think part of it may be tied into going through menopause whether you had cancer and hormone drugs or not. I'm in my 60s, but I remember most of my women friends and me feeling bad about the extra 7 - 10 lbs we all seem to put on in our 50s while going through menopause. Your body just does not metabolize food the same and it takes some adjustment on how much and what kinds of food you eat to not gain weight during that time. I hope the tamoxifen goes well for you. I found exercising more to be a real help.

  • robinblessed54
    robinblessed54 Member Posts: 578
    edited January 2015

    Hello, I am new to this board today.  On October 14, 2014 I started Arimidex and after 3 weeks asked to switch to Aromasin due to horrible arthritic pain in my hands and wrists.  That was even worse!  So I saw onco yesterday and will start Tomoxifin next week.  I am telling you, this better work.  I am 60 and postmenopausal. I have already dealt with hot flashes, so hot flashes are much easier to take than arthritis pain.  I will keep you all posted on how it goes.  Let's hope that the pain in my hands goes away too.  Anyone else done the jump from med to med?  Thanks, Robin

    I guess I should make my diagnosis public, didn't know how to do that!

  • Moderators
    Moderators Member Posts: 25,912
    edited January 2015

    Robinblessed54-

    We just wanted to welcome you to our community here at BCO! We're glad you've found us, and we hope you find this place to be one of support and encouragement.

    Keep us posted on your new regimen, we wish you luck and will keep you in our thoughts!

    The Mods

  • LiLi-RI
    LiLi-RI Member Posts: 291
    edited January 2015

    Robinblessed54:

    Welcome! I am 52 yrs - surgerically postmenopausal. I originally started with Arimidex and switched to Tamoxifen on November 1, 2014. On Tuesday, I had my 3-mo check with my MO. She said all the side effects that I am feeling now should subside in a couple of months. One of which is - I have terrible arthritis in both wrists and hands. I find that I have less pain on the Tamoxifen than Arimidex - but still pain and trigger thumb issues. I am finding that I can tolerate this drug better. She prescribed a low dose Effexor for hot flashes and depression. Keep the faith in the drug. I was torn about whether or not I could tolerate it. Hopefully, your pain will be reduced. Lisa

  • robinblessed54
    robinblessed54 Member Posts: 578
    edited January 2015

    thank you LiLi-Ri!

    I too hope Tamox will be my last and best drug. I will keep you all posted on the outcome.

  • lilmouse
    lilmouse Member Posts: 10
    edited January 2015

    I've been taking tamoxifen for two weeks and haven't noticed anything different so far. I'm taking 20 mg 1x/day, in the evening. My oncotype score was 14.

  • MarieBernice6234
    MarieBernice6234 Member Posts: 202
    edited January 2015

    Hi All -

    This was day 2 on Tamoxifen 20. For now I am trying to take it in the morning, with my other medications. I tend to have less problems remembering to take my morning medications. I thought that by taking it in the morning, it might lessen the chance of having the hot flashes or night sweats.Then the pharmacist told me that this medication doesn't have a "peak" as the level remains fairly consistent. Is it true that it could take up to 3 weeks for side effects to happen? Luckily I am currently on Effexor 150 mg, split into two doses - morning and evening. I hope that I don't have any side effects. I had a hormonal level blood test done in Oct and the estrogen (estradiol) level was over 400. In preparation for the appointment on Thursday, a repeat one was done and the level was down to 16. Could radiation treatment play a part of this? My FSH level, increased, but this is okay for perimenopausal women. Do I have my terms correct or is it the other way around? My other two follow-ups went well


    MarieBernice6234

  • Stacie13
    Stacie13 Member Posts: 19
    edited January 2015

    I started Tamoxifen Dec. 29th  2014. I just received my 90 day supply (my insurance cover 100% I was shocked. About time they started kickin' in lol)  So far have not noticed any side effects that are too bad. Sleepiness and depression, but think its emotional issues.Started on Effoxor Er  hoping it helps.

    Has anyone else's oncologist put them on Tamoxifen for 10  years?? Mine did. Every story I've read, 5 years was recommended??

  • Blownaway
    Blownaway Member Posts: 760
    edited January 2015

    Stacie13 - Oddly enough, when I picked up my Tamoxifen for the first time (recently) I was told "No charge per your insurance company" I have Blue Cross....what's up with that? I just figured I'd get billed later somehow.

  • IsabelArcher
    IsabelArcher Member Posts: 297
    edited January 2015

    Stacie13--I have seen recent reports of studies showing that 10 yrs of tamoxifen, instead of 5 yrs, has benefits (lower number of recurrences). I guess 10 years must have passed since studies began.

  • ForHisGlory
    ForHisGlory Member Posts: 64
    edited January 2015

    I have been reading for a couple weeks. I picked up my script last week and have one more week of radiation then I am supposed to start. My dr also said for probably 10 years but I am hoping I am able to take it at all! I'm extremely nervous about it. I have suffered from horrible PMS for several years and am afraid this will make me feel that way all the time instead of just a few days a month. I am 43 and still having a cycle. I am also post ablation and have suffered from ovarian cysts all my life and had my right ovary removed about 10 years ago due to that. I am supposed to take 10 mg in the morning and evening. She even said i could start with I just 10a day for two weeks if I want to

  • Carynbrit
    Carynbrit Member Posts: 51
    edited January 2015

    Trudging in reluctantly..finished rads and am due for follow up on feb 5th.. so.. hello. drug talk.

    Whats with the 10 years now? What recent studies changed this.? I thought that it was 5 years because it stays effective after that. Guess i need to do some seraching/research.

    I'm 43. btw. Anyway.. ive been stressing about Tamoxifen since I had my surgery back in Oct... but although im fearful.. I figured I'd at least try it.. (current thinking.. prior to this i was oh hell no)..and see how I am on it.. maybe I'll get lucky and be okay... or maybe not.. but I think i'll be happier with my decision to try it and come off it,rather than not try it at all.

    Hate the juggling feeling of 'life'.



  • Montmartre1540
    Montmartre1540 Member Posts: 8
    edited January 2015

    Hello ladies,

    I am 40, was diagnosed with ADH on Jan, 20 th. I dont have family history still, my oncologist advised me to be on tamoxifen. I am dredful about side effect. I have been looking at the med now for a day but scare to take the first pill.

  • runningcello
    runningcello Member Posts: 110
    edited January 2015

    Today was my first day on tamoxifen.. here's to hoping it isn't that bad!

  • Birdgirl11
    Birdgirl11 Member Posts: 51
    edited January 2015

    Took my first Tamo last night - I was kind of warm and then cold and then warm last night, but that's not out of the question for me anyway, so I'm not ready to blame the tamo yet. My onco said he was putting me on for 5 years because my lymph nodes were clear. If there had been any positive nodes, I would be put on for 10. I had not heard that before either, so maybe that is the new thought on the meds. Good luck to everyone starting - here's to minimal side effects

  • IsabelArcher
    IsabelArcher Member Posts: 297
    edited January 2015

    I just want to say again to everyone who's afraid of the side effects of Tamoxifen, that I have had zero SEs other than hot flashes and a few extra (annoying!) pounds. I realize it may be different for me because I started at 52 and some of you are in your 40s. But taking this pill is not like getting chemo. I finished treatment (a clinical trial of a targeted therapy) several months ago and have been on Tamoxifen for about 8 months and I feel great. I say this in hopes of giving you encouragement ! Try to remember this is one of the breakthrough drugs in BC treatment. Best wishes to all.

    Here is the recent info on 5 yrs vs 10 yrs:

    http://www.asco.org/press-center/asco-guideline-update-recommends-tamoxifen-10-years-women-non-metastatic-hormone

  • have2laugh
    have2laugh Member Posts: 132
    edited January 2015

    Hi, ladies I am a little farther out from starting Tamoxifen, started in June but I was interested to see if anyone had been prescribed topical form. It has been studied a bit with DCIS and has been around a while. Wondering if it is in use so if anyone knows anyone using this I'd be curious to hear about it. 

    I was very hesitant to use Tamoxifen but I will say I really have had very few obvious side effects. I told my MO I would try it on month to month basis and just see. I have been pleasantly surprised how easy it has been and I hope some of you will be, too. The only issues I have are changes in uterine lining noted by ultrasounds and have had a biopsy but I am not having any symptoms from this. This is what interests me about topical forms-reduces or eliminates effects on uterus and blood clot risks. I am 44 so hoping body adjusts and with DCIS only five years so will see. I am higher risk due to family history (two sisters with IDC at 44 &45, I was diagnosed at 43 w/DCIS) and pathology/surgical final results so trying whatever I can to lower risk of future issues.

    Blownaway-just wanted to encourage you that there are great medications and time can make the difference with heart so hang in there! I had severe cardiomyopathy related to pregnancy at 40 and had very low heart function for six months. It took a year on meds to get back to low but acceptable range and my first normal echo was preop for breast surgery-so three years from diagnosis. I was able to have radiation to left breast and hope to avoid ever needing Herceptin. Timing of those medications and staying hydrated can may a big difference in your stamina if you find they lower your blood pressure or energy level. Small changes made big difference for me so make sure you are open with cardiologist-they can help you manage side effects. Wishing you continued healing!


     

  • robinblessed54
    robinblessed54 Member Posts: 578
    edited January 2015

    well ladies I am 60, post menopausal and wating for Arimidex/Aromasin to get out of my system to start Tamoxifin! I Still wake up with sausage fingers and trigger thumbs! Horrible! I am anxious to see if the SE go away and do better on this!

    Blessings! Robin

  • MarieBernice6234
    MarieBernice6234 Member Posts: 202
    edited January 2015

    Hi Robinblessed54 -

    It looks like you and I started Tamoxifen on the same day. This is the first and hopefully, the only form of medication that I will have to take. At least until I am truly postmenopausal and can them switch to one of the others. So far Day 3 into it and no side effects yet. Sometimes it can take a bit longer for the side effects to appear though. How is it going for you?


    MarieBernice6234

  • RainDew
    RainDew Member Posts: 305
    edited January 2015

    I've been prescribed 10years too. Think this is now standard of care for women diagnosed w invasive cancer in their 30s.

    As per above, I've been taking it for 3-4 months - completely tolerable, no real SEs I can discern other than a few left over from chemo (menopause at 39...ugh)

    I don't have too much else to say...might be that's why we hear less from ladies who are doing just fine on it. I have MO appt in 2 wks and my bigger concern is after SOFT trial results he will suggest OS/AI. I am less excited about that...

    Good luck everyone!!

  • MarieBernice6234
    MarieBernice6234 Member Posts: 202
    edited January 2015

    Hi IsabelArcher -

    I am another woman, who like you is 52 years old and just started Tamoxifen three days ago. As it has only been a short time for me, side effects, if any, have not appeared yet. I am hoping that there aren't any, and not that they haven't appeared yet. When did you actually start the Tamoxifen?


    MarieBernice6234

  • Stacie13
    Stacie13 Member Posts: 19
    edited January 2015

    My oncologist said I am better off not know the side effects from Tamoxifien, that way I'm not "looking" for side effects. Also to stay off google.

    Okay, I may have looked a little bit, mostly at the info that comes with the script from the pharmacy. Winking

  • robinblessed54
    robinblessed54 Member Posts: 578
    edited January 2015

    too late for Google!! Good luck to both if us!!

  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited January 2015

    I am keeping up with the posts and I am really glad to hear so many of you are doing well. I get my script for tamoxifen on Tuesday. This thread makes me feel better. Hoping everyone continues to do well with it

    Nancy

  • IsabelArcher
    IsabelArcher Member Posts: 297
    edited January 2015

    MarieBernice, I started Tamox in April 2014.

    Nancy2581, it is so good to hear that this thread makes you feel better

  • Blownaway
    Blownaway Member Posts: 760
    edited January 2015

    Just wondering...How many of you got your first Tamoxifen script for free? Mine was. Found that to be odd.

    Havetolaugh - Did yours get down to 35 and do you remember being easily out of breath? After 1 month on meds, I'm back up to 45 and the cardio doesn't want to see me again for 6 months. I was told to start exercising again. I still get winded and feel like I have to catch my breath. I've always stayed in shape till diagnosis back in March. Can't believe it was almost a year ago and I've gone this far downhill. Some of the ladies worked out during their treatment but I just didn't have it in me. I did keep working the entire time, I know some took medical leave but I hated to see what the bookkeeping would look like when I came back.

  • mmtagirl
    mmtagirl Member Posts: 509
    edited January 2015

    Hi all,

    Just thought I would share that I started on T in October and did not stop taking it during rads which I have since heard is a bit unusual. Anyway, i do have hot flashes, many at night. They started during chemo, along with the joint and muscle aches in the hips and lower back. Exercise helps a lot for the joint and muscle aches. The hot flashes continue but are not as intense as when I first started in October.

    Earlier this month when I had my MO appointment and mentioned the aches he recommended that I start taking vitamin D. WOW, what a difference. The aches have essentially disappeared in my legs and back. He also suggested taking one regular aspirin per day since studies were showing that aspirin can help prevent cancer. He and his wife (a BC survivor) both take it.

    Yes, I have gained a few pounds since starting T. Can't really blame it on the meds. I didn't exercise as much in Nov/dec with rads and I really enjoyed my holidays! I have to blame the extra weight on my own lifestyle choices.

    I will say that since chemo and starting T I do feel much softer and rounder in the abdomen area. I am 52 and was still pre-menopausal. Chemo slammed me right into menopause which may be the culprit.

    Hope I helped someone.....

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