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Bottle o Tamoxifen

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Comments

  • Sandra60
    Sandra60 Member Posts: 15
    edited March 2013

    Hi Ladies,

    I am new to this board .  I just finished TC chemo a little over 3 weeks ago - and doing Rads - 6 weeks - starting 4/1.

    My question to the group about Tamox - is when did you start on it if you had chemo and rads?  My ONC says I can start any time or wait a month .  I still do not feel " normal"  - chemo not all out of my system yet and did not want to start taking the daily pills until I felt a bit better.

    I am 52 and was pre-menopausal prior to chemo

  • ssla01
    ssla01 Member Posts: 216
    edited March 2013

    I'm on tamoxifen as well. This is third month and the side effects are lessening. I will stay on it until surgery and then five years after.

    Sharon

  • justagirl
    justagirl Member Posts: 633
    edited March 2013

    Sandra: started Femara (now on Tamoxifen) about two weeks after finishing rads - that's what my oncologist wanted. Me, I wanted it all now to get in as quick as possible and fight against recurrence. The chemo left in your system is supposed to give you some coverage and any side effects you get on the Tamoxifen, if any, should not kick in for at least two weeks or longer.

    But ultimately, it's your decision, it's your body!

  • new2bc
    new2bc Member Posts: 254
    edited March 2013

    Hi everyone,

    I am supposed to start on Tamoxifen in a few weeks. I read that side effects depends on the manufacturer of this medicine. Can you please share with me which manufacturer are you using and where are you filling your prescription and what side effects do you have?

    Thanks so much for your help.

  • bhlri
    bhlri Member Posts: 13
    edited March 2013

    I read somewhere in one of the treads that there are different manufacturers of Tamox and SEs are different with different ones. Can you please list them so that I can know which manufacturer's I am taking. Thank you

  • swim_girl
    swim_girl Member Posts: 10
    edited March 2013

    new2bc and bhlri, If you check out the Differences in SEs with Tamox from different manufacturers thread, people have posted their brands and side effects. A few pages into the thread, somebody has summarized the information.

    I started out on Mylan for the first 3 months and have been on Watson since then (about 4 months) when my pharmacy switched manufacturers. I was annoyed when they did this, but I honestly didn't notice a big difference when I switched. I have some side effects, but most of the time they're just annoying (and occassionally more than that).

    I think some women notice a big difference dependign on the manufacturer but many don't--and don't have many side effects at all, especially after the first few months. Good luck!

  • bgirl
    bgirl Member Posts: 435
    edited March 2013

    Ray - it does get you down, after a year I am getting more used to it and coping better.  I do occasionally use Restoril (my doc not fond of Ambien) when I have gone several nights with almost no sleep and it does help.  Maybe you could talk to your dr.

  • surfette
    surfette Member Posts: 108
    edited March 2013

    Justagirl: Thanks. Every time I add something new to my repertoire, I wonder how it will work with the big T. My onc seems to think it doesn't fight with other meds/supplements but I always like to ask.

  • justagirl
    justagirl Member Posts: 633
    edited March 2013

    surfette: I always check too and wouldn't of told you it was fine if I hadn't gotten the ok from my Dr. Only thing oncologist said was she thought alcohol might reduce, to some degree, the effectiveness of T. Don't want that so it's easy to stay with the soft stuff.

    Supplements usually are fine, unless you are mega-dosing and that can potentially cause anyone problems.

    As a RN I will say T mixes with everything I have used, but there are some drugs we all should not be taking at the same time due to interactions which are negative to our bodies or decreasing the effectiveness of a drug.

    With doctors all using computer programs now, when they enter a prescription to issue to you, the computer will pop up with a warning of possible complications due to any interactions with the meds you are already taking that are listed in your computer file.

    I used to get hot flashes when I took Femara but it is now many times worse on Tamoxifen - and it usually happens while I am supposed to be sleeping, therefore I awaken every hour of two during the night to change pj's, go to the bathroom and drink a couple of cups of water because I am so dehydrated....and yes, I drink an adequate amount of water during the day.

  • kkemp2211
    kkemp2211 Member Posts: 11
    edited March 2013

    I started on Tamoxifen about 2 weeks ago and have noticed an increase of vaginal discharge.  Like I could change my underwear 5 times a day.  I've only read a few pages of the posts on this board but didn't come across anything about this yet.  Did anyone else experience this and is there anything to do?  geez, it's gross!  Especially after having no discharge during chemo because I was so dried out!

  • scrapmom40
    scrapmom40 Member Posts: 29
    edited March 2013

    I posted this earlier today, but thoughgt I woudl post here as well since you ladies are on tamoxifen as well.  Not sure if any of you have had a similar experience.

    I have not had my period since October 2011 and started spotting yesterday and now have my period. I'm not too worried, since I have all the symptoms of a normal period (headache, backache, cramps), but I am wondering if anyone else has had a similar experience. I was diagnosed at 40. My Periods kind of came and went for a while (chemo-pause, etc)., but I haven't had anything for the last 17 months until today. (I will be 46 in June).

    Just wondering if anyone has had a similar experience. Thanks for your feedback.

    Karen

  • bgirl
    bgirl Member Posts: 435
    edited March 2013

    Karen, tami doesn't put you in menopause, so periods are normal.  Often out of whack though, timing, light heavy, etc.

    Discharge, yep .. wear a pantyliner every day now. Pretty common

  • new2bc
    new2bc Member Posts: 254
    edited March 2013

    Some people have mentioned they started having vaginal discharge. What company  manufactures your pill? I have learned different companies will have different side effects. What other side effects do you have besides the discharge?    

  • justagirl
    justagirl Member Posts: 633
    edited March 2013

    I've just started getting the discharge in the last month and have been on T since mid January. It's not much but enough to disgust me and sometimes I itch there (maybe too much information?) Anyway, it's not like a yeast infection but  do think I will have my GP check me when I see her next week.

    I was on Femara almost 2 1/2 years before my mets were discovered and the oncologist switched me to T. Ah, the joys of being 60 and now on T. or something for the rest of my life.............which I hope is a long time and I am determined to make it so!

  • bgirl
    bgirl Member Posts: 435
    edited March 2013

    Discharge is listed as a common SE, the panty liners help keep drier and help with the itch.  Has gotten better after first 10 months on tami.  Hope this isn't TMI.

    Some do get infections, so always wise to consult your PCP or GYN, but often it is just one of the joys of being on tami.

  • edwards750
    edwards750 Member Posts: 1,568
    edited March 2013

    My ONC switched me from Arimidex to Tamoxifen because of osteoporsis. I was taking supplements to offset what Arimidex does to the bones but it was getting ridiculous trying to find something that didnt cost 120 a month for one pill. Cant/wont do that. ONC said Tamoxifen actually builds up the bones. Weight gain? A little. ONC also said she had a patient who lost 40 lbs while taking the drug so I guess its possible. The vast majority from what I have read, gain weight. My sister in law was on it for 5 years and she sure did. Didnt help that she eat like a Marine anyway...she has a BIG appetite. She did have horrible hot flashes too. I have those but not too bad. Regardless of the SEs I think of it as extra insurance. I have read some drs are recommending taking it 10 years. There is also a link between Tamoxifen and lung cancer. I had a friend who got LC and never smoked or was around anyone who did. She didnt survive; it went to her brain. Anyway drs may recommend in the future to at least try it to combat LC. I have just learned to live with taking meds everyday. Diane

  • april485
    april485 Member Posts: 1,983
    edited March 2013

    Question about tamoxifen and wellbutrin? I read that taking wellbutrin at the same time as tamox can blight the effectiveness of the tamoxifen? Is this true? If so, why in the world would the APRN prescribe wellbutrin for me (smoking cessation at the same hospital I am being treated for my BC and they have access to all of my records!) if she should have known this?

    Ugh...I have not started either drug yet because rads will be starting but tamox will be prescribed for me beginning in May and I don't want to take both if the tamoxifen won't work due to the wellbutrin! Frankly, after reading all the SE's of both drugs, I don't want to take either one!

    Why can't ANY of this BC shit be easy? Thanks for any help you can give me about this issue.

  • jo1955
    jo1955 Member Posts: 7,545
    edited March 2013

    April485 - I would advise you to not take the wellubtrin with Tamoxifen.  Talk to you MO first.  There are SERIOUS interactions between the two.  Google Tamoxifen & Wellubtrin Interactions.  WebMD or drugs.com (I use this one alot) will list the interactions and what it could happen.  For one thing, the T will not work as well.  It could also cause heart problems.  

  • ageorgiadeb
    ageorgiadeb Member Posts: 11
    edited March 2013

    I haven't read this thread (or any thread for a while).  Trying to be "normal" which would include trying to get up early when I don't work-it doesn't happen becausee I am tired all the time.  Also, pretending not to be dying from a hot flash because no one gets it and they think I am over this BC thing.  Oh, and feeling like a dummy when I can't remember anything.  (my friends get this becasue it happens in menopause too)  I could keep going.....

    I am taking tamoxifen and will be discussing with my oncologist about changing to an AI.  I was not in menopause when I started tx so I am scared to change.  I know what I am dealing with now!  Just glad I can read about other ladies who have the same side effects as me.  I know that not everyone has them and that is great.  But those of us who do have side effects  feel a bit crazy!!  

    Keep sharing those experiences and I will tune in more!

  • justagirl
    justagirl Member Posts: 633
    edited March 2013

    To AGeorgiaDeb: You are normal. We are all 'normal'. It's just our normal is not anywhere like some else who has not had BC enter their life and then the delight of taking one of these drugs. No, you are not alone. No, very few understand what we are going through (I am lucky to have an understanding husband and teen son and three BFF's, of which one I met here on BCO). Yes, they all think after surgery, chemo, rads that that is the end of it and we just forget it ever happened. I've had many fellow nurse friends just not get how I feel, how anxious I was for almost three years, what with taking Femara, and having done a DM, chemo and rads - I still lived in fear each day of having mets. My SNB was clear but my tumor was invasive. Well, my anxiety (which the unknowing majority of people I know  just didn't 'get') became my reality and I was diagnosed with lung mets on January 21 and changed to Tamoxifen. And now I have raging hot flashes. The ones I got on Femara are nothing compared to these.

    Oh, and I think it helps to be a bit crazy to deal with our 'normal'!

  • Linda-n3
    Linda-n3 Member Posts: 1,713
    edited March 2013

    AGeorgiaDebbie, I took tamoxifen twice and had terrible SEs, the hot flashes were so bad every hour, I nearly passed out I was so dizzy with them. Not good when trying to give a lecture in front of 75 students! So I quit, tried it again when I got recurrence, had to stop again. Switched to letrozole against my fears - I was terrified because of all the SEs it COULD cause, and have been EXTREMELY PLEASED that I have tolerated it pretty well. The pain is much less than I had with tamoxifen, the hot flashes replaced by drenching sweats only every 3-4 hours, no passing out feeling ... DH says NOTHING can help the ditzy brain or emotional stuff with me as he swears I had that BEFORE BC! .... anyway, I love my tammi sistas here, miss them, but if you need to change to an AI, let me reassure you that not everyone has a rough time with them. Yes, some do, and they will post a lot, so remember that there are a lot of others who don't post because they are doing fine with the meds. Fear is our mortal enemy here in this fight. Don't let it win. Do what you need to do, discuss with your MO, get a plan. If the first plan doesn't work for you, get a new plan. Then pay attention to every moment of beauty and joy you can find in each day, know you are loved by many, let them help you.



    Greetings to all my tammi sisters .... missing you and hoping you are doing well. 24-hour rule always in effect!

  • heartnsoul76
    heartnsoul76 Member Posts: 1,204
    edited March 2013

    Hey Linda!  So glad you check in with us!  My MO wants to put me on an AI after 5 years of Tamoxifen - I'm so glad to hear that they're not always bad.  I guess I can give it a try.  Here we talk about the problems we've had with Tamoxifen - I feel like the problems with the AIs are much worse.  But like you say, if someone's not having a problem they don't usually post about it. Wink

    Your recent post on the Hospice thread about process theology was beautiful and thought-provoking.  Thank you for that!

  • Belinda977
    Belinda977 Member Posts: 150
    edited April 2013

    A little over 6 months on tamoxifen.  My MO indicated 25% of people will have their period stop.  I have had mine every month until last month.  Still nothing.  Took a pregnancy test to be sure..negative.  Other than that a little weight gain it has been very tolerable.  

  • april485
    april485 Member Posts: 1,983
    edited April 2013

    Thanks Jo1955! I will talk to my MO. I have not even opened the wellbutrin bottle and I have had it almost a week. Stuff scares me even without tamoxifen! Thanks again.

  • ksm
    ksm Member Posts: 1
    edited April 2013

    APRIL485 - I will start Tamoxifen this week and my MO called today to tell me I could not take Wellbutrin anymore. I have taken it for years because of anxiety. He did say there were other choices, but I am going to wait and see how it goes with the Tamoxifen and then decide if and what to take for the anxiety.

  • jo1955
    jo1955 Member Posts: 7,545
    edited April 2013

    I have gotten into the habit of looking on drugs.com if I think there is a possibility of any medications counteracting with Tamoxifen.  Like we need something else to worry about.  I will be sooooo glad when I can stop taking this.  Mind you, I have very minimal SEs - a bit of warm flushes and some brain fog.  Part of the brain fog could be just plain old age and the antidepressant I have to take for permanent nerve damage from rads.  Grrr!!! HUGS

  • Belinda977
    Belinda977 Member Posts: 150
    edited April 2013

    I taked Celexa.  On the safe list if you are taking Tamoxifen.  

  • Doragirl34
    Doragirl34 Member Posts: 38
    edited April 2013

    It's been awhile so I thought I'd give my update. I've been on my T since Feb and am doing great. The night sweats are less frequent but daytime hot flashes are now coming. It sucks but they don't last long and seem to come in waves. Im still a little down and I do agree that it's hard to adjust to the new me. I take it day by day trying to keep things into perspective. My main complaint besides my hunger that I blame on T is my dryness. Everything is dried up. My skin my vagina, good lord it's dry down there. And of course I have no interest in intimacy. Thank god my husband hasn't said anything but it's been over 7 months and I worry about it. Don't know what to do to kick start our sex life. I'm only 34.

  • ED2012
    ED2012 Member Posts: 12
    edited April 2013

    Doragirl34 - I just read an article on this site mentioning topical external estrogen cream for vaginal dryness...and wondering if it might not be something you could look into?  I can completely empathize with what you are experiencing...but just as I was thinking of asking the question for myself...it seemed to get better on its own - weird, huh?  I have been on T since 9/12...and have only experienced minor issues that I can live with thus far.  Its good to hear you are doing ok, too.  As far as the intimacy interest....I go by "fake it til you make it!!!!" Lol :)

  • new2bc
    new2bc Member Posts: 254
    edited April 2013

    Ed2012,

    Which manufacturer makes your T? I will start taking T shortly and would like to try one with less side effects. Thanks for your help.

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