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Bottle o Tamoxifen

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Comments

  • sonson
    sonson Member Posts: 50
    edited November 2012

    I am obviously on the wrong discussion boards...I don't get to see any mandays on my discussion boards.  And I must say that I appreciate the mandays!  So yeah, I'm new to this board.  I will be starting radiation soon.  Does anyone know when Tamoxifen starts?  Do you start that along with radiation or do they wait until you are done with radiation?  Or is this something each MO does differently?  Just wondering.  I haven't received a RX yet so I was just curious, but just had to let you guys know that those pics are really great!  I'm a fan!

  • Outdamnedspot
    Outdamnedspot Member Posts: 164
    edited November 2012

    I started my Tamoxifen one week ago and have yet to start rads.  Though I did not do chemo and have my simulation appointment this Thursday.  I was 6 weeks post-op before I started and glad to get going on it.  I suppose each MO does it differently.

    So far, no complaints.  A little warm flash every now and then, but gone as quick as it comes.

    Cheers.

  • likepink
    likepink Member Posts: 2
    edited November 2012

    Hi sonson and ladies I started My Tamoxifen approx. 3 weeks after radiation Its been a little rough but getting better

  • chabba
    chabba Member Posts: 3,600
    edited November 2012

    Different MO's do it differently.  After two years here it seems to me that most start tamoxifen after rads.  I'm way past menopause so started out on the Al's but had very bad reactions and switched to tamoxifen 11/1/10.  The side effects are many and varied and they can come and go.  Hot flashes and early menopause seem almost universal in pre-menopausal women who come here.  Of course those who have just minor SE's don't usually show up here.

  • jo1955
    jo1955 Member Posts: 7,545
    edited November 2012

    Chabba said it right.  MOs tend to be different.  I am postmenopausal and my MO started me on an AI before rads and had to stop it due to extreme nausea.  Tried another AI and same result.  Was switched to Tamoxifen and have been on it since Jan 5, 2011.  The only side effect I have is some warm flushes every once in a while.  Don't know how I got so lucky.  

    Bottom line - it really doesn't matter when you start the medication - just as long as you take it for the entire 5 years. 

  • BlueLily
    BlueLily Member Posts: 24
    edited November 2012

    Agree with Chabba - my mo did not want me to wait since I did not do chemo but was node positive with a very low onco score.  SE's come & go ... maybe I'm more aware of them because of the information I've learned here ... ignorance had me just thinking I was getting older! (... which is my goal - so 5 years it will be)

  • bgirl
    bgirl Member Posts: 435
    edited November 2012

    If you are pre meno, especially if you don't do chemo they usually want you to start right away.  I guess we have more estrogen floating around.  My RO would have preferred to wait.  But she deferred to MO's wishes.  So the day I got my onco score and decided against chemo, I walked out with prescription in hand.

  • harley63
    harley63 Member Posts: 30
    edited November 2012

    Hi ladies...

    Just an update...  I took my last Tamoxifen on Halloween!  YAY!   I also had uterine polyps (again!  GRRRRR.... :(    )   so I had an in-office biopsy.

    The dr. called me earlier this week and it was benign!  YAY!  

    So I bid a fond adieu to TAMOXIFEN....    

    Will try to keep in touch...  I am on FaceBook, mostly now, so if you want to look me up, just send me a pm...

    Harley63

  • bgirl
    bgirl Member Posts: 435
    edited November 2012

    congrats on being done with the little with pill

  • jo1955
    jo1955 Member Posts: 7,545
    edited November 2012

    Congrats Harley on being done with that stupid white pill.

  • Sherryc
    Sherryc Member Posts: 4,503
    edited November 2012

    Harley congrats on finishing Tamox and for the B9 results.

    I started Tamox 2 weeks after finishing rads.

    I had breast revision surgery yesterday.  My implants were bottoming out so they had to remove them do alot of intenal stitching and put them back in.  I have been in quiet a bit of pain but the pain neds are working pretty well.

  • Lacey12
    Lacey12 Member Posts: 2,895
    edited December 2012

    So did anyone else hear the news report today that docs are now recommending that women stay on Tamoxifen for TEN years not five? Oh dear! Looking forward to ten years of sleep disturbance, now. They must be less concerned about the uterine problems that long term use was supposed to create. I'll be interested to see where my MO comes down on this....and where arimidex stands in the mix, since in the Boston area they have frequently used Tamox for a few years then switchover to an aromotase inhibitor.

    I hope that those of you who just finished, can STAY finished!

    I just spent a couple of days at the hospital being evaluated for cardiac symptoms, which I developed after getting up to my "optimal" level of gabapentin prescribed for my body temp regulation issues which the MO felt was the cause of my horrible sleep issues. Well, after all that, my heart seems to be fine, and I will be titrating myself off of this newest meds poste haste, since that seems to be the culprit. I actually feel badly about adding to the healthcare costs in our country by this unnecessary inpatient trip and was aware of that throughout my stay....could not even take my own vitamins..theynhad to issue them since ghey were on my meds list. Oy! Frustration! Not sure I want to try any other meds for this sleep issue, if I can learn to put up with it, maybe try meditation or some other mind/body techniques. :)



    Sherry, I hope you are feeling a lot better...

  • Jennt28
    Jennt28 Member Posts: 1,095
    edited December 2012

    An additional 2-3% of women get endometrial cancer after 10 years according to the research - http://www.sciencedaily.com/releases/2012/12/121205090917.htm



    I'm only 3 months into this Tamoxifen and am already crying everyday about the SEs (or maybe the crying is an SE...). 10 years seems like hell...



    Jenn

  • jo1955
    jo1955 Member Posts: 7,545
    edited December 2012

    Lacey - I have been on Tamox 1 year and 11 months.  On Jan 5th 2016, I will take my last pill - end of 5 years.  There is no way I would do 10 years.  I have had many uterine issues already.  I can't imagine what issues I would have in the long term.

    It seems I have read report after report that states there is no benefit of Tamox after 5 years and this is why if you are postmenopausal they are switching to an AI.  There are so many studies out there that tend to contradict each other - what can we really believe.  

    I do have my 6 month MO visit on Monday and I will also get my refill for another year of this nasty white pill.  I will have to ask my MO what his feeling is about this.  He trained at MD Anderson and I'm pretty sure he keeps up with all the latest.  I will get back here and tell everyone what he said.

  • bgirl
    bgirl Member Posts: 435
    edited December 2012

    Like your new pick Jo.  I know what you mean ... this my 12th month on this lovely little white pill.  Pre-meno so causing ovarian cyst issues too.  Can't imagine 10 years.  Doing D&C and endo ablation on Tuesday  ... so hopefully will solve a bit of QOL issues.

  • sbaaronson
    sbaaronson Member Posts: 121
    edited December 2012

    I just read that article in the NY Times. The percentile bump between 5 and 10 years is under 4%. I am only 2 years in but the merry-go-round of side effects is astounding. Quite literally, the joint pain as of late has been so brutal that I have resorted to Vicodin some nights. I'll re-evaluate at the 5 year mark but if I understand correctly and it's so low a percentage rate gain, it doesn't seem likely.

    I feel pretty great these days but I often wonder how I would feel if I wasn't on the Tamoxifen...

  • jo1955
    jo1955 Member Posts: 7,545
    edited December 2012

    bgirl.  Thanks.  That pic was taken in Roatan, Honduras.  First trip there this summer.  Went snorkeling and just loved it.  The water was so clear.

    Two summers on Tamox - last summer hysteroscopy and a D&C,  this summer another hysteroscopy and had a 3 cm polyp removed.  Both times I insisted on having a transvaginal US.  Next summer - complete hysterectomy.  I am not messing around with this crap anymore.  I would hate to think I have 4 more summers of hysteroscopies and something else.  On Jan 5th, 2016 I will take my last pill.  Not going to do anything after that.  Want my life back.

  • Sherryc
    Sherryc Member Posts: 4,503
    edited December 2012

    Jo love your new picture.  I am right behind you my last tamox will be 2/6/2016.  but my MO has already made noices about using AI's after that.  Not sure I will agree with it.  Will cross that bridge when I get there.

  • jo1955
    jo1955 Member Posts: 7,545
    edited December 2012

    OMG!  What did I read in the newspaper this morning?  Studies now show Tamox is effective for 10 years especially if you are at high risk.  Are you friggin' kidding me? So for the next 8 years I have to deal with more uterine issues?  Weight issues, cholesterol that I can't get under control?  I don't think so.  I have made a note and will ask my MO on Monday when I see him.  

    Thanks Sherry.

  • bgirl
    bgirl Member Posts: 435
    edited December 2012

    QOL??? We are the one's taking it.  Want many more details about effectiveness and stats. 10 years seems like a life time after a BC diagnosis.

  • jo1955
    jo1955 Member Posts: 7,545
    edited December 2012

    Jane, I couldn't agree more.  I can almost bet you that men are making these decisions.  They don't have a clue what we are dealing with.  I am so tired of the uterine issues - did not have these before BC.  I truly think 3 more years is my limit.

  • Linda-n3
    Linda-n3 Member Posts: 1,713
    edited December 2012

    Hi, Tammi sistas! I am just popping in to wish you all well. Have been off tammi for many months - gave it the old college try twice, and both times it reduced my quality of life so severely I would rather have just died. Now am doing about a thousand percent better in that respect. I did have recurrence again this year, but it was small nodule, removed with wide excision, and BS says I have over 70% chance of this being all I will need. MO would like me on more drugs, but I am finally feeling like a human being again rather than a raging monster in pain, so will try to live a healthy lifestyle and enjoy each day.



    Maria, I hope things are being sorted out with your mom. You have been through so much. Jo, sounds like you are getting on with life, and you have really earned it with all YOU have been through. I miss Manday, geez, Paula, you are the best! Best wishes to all the rest of you who were so supportive, and who continue to be so supportive.

  • jo1955
    jo1955 Member Posts: 7,545
    edited December 2012

    Linda - Glad you are doing so much better.  Quality of life shoud be the most important thing.  Let's hope you do not have to deal with this beast again. Even though you are not on Tamox, please visit with us often, please. You are so right, I have been to hell and back a couple of time it seems.  I do not regret the decision to have reconstruction done.  Love the results.  Hope I am done.  

  • odie16
    odie16 Member Posts: 1,415
    edited December 2012

    Hey there ladies.

    Love the new pic Jo. Lynda, so glad to see things getting better for you. Sherri, I hope you are healing well. 

    Just wanted to chime in on the Tamoxifen study. When I heard that news yesterday, I realized my 4 more years will likely be 9 more years. Yell

    Hugs to everyone. Namaste!

  • jo1955
    jo1955 Member Posts: 7,545
    edited December 2012

    odie - Thanks!  Let's hope we don't have to do the additional years.  I talked to my 18 year survivor friend and she had hear of this same study when she was doing her 5 years of Tamox and her MO told her all she was going to have do to was the 5 years.  So there may be hope yet.  I am going to see my MO on Monday for my 6 month check up and will ask him about it then.  I am not one bit nervous about this appt.  I just see this as another routine doctor appt - am I weird or what?

  • odie16
    odie16 Member Posts: 1,415
    edited December 2012

    Not weird at all Jo. Smart I say! Besides it will be what it will be so worrying won't do anything but stress you out anyway! 

    Hope everyone has a great day! Gonna spend mine putting up the Christmas tree and cleaning house... Yippee!! 

  • heartnsoul76
    heartnsoul76 Member Posts: 1,204
    edited December 2012

    Hi ladies!

    Well, my experience with Tamoxifen sure seems to be the opposite of everybody here.  I just had a transvaginal ultrasound (mainly because I asked for it).  I wasn't having any problems (my gyn said not to worry unless I had abnormal bleeding), but about a year before I started Tamoxifen my uterine lining was on the thick side.  I was worried about that since Tamoxifen can cause thickening of the lining and I have been taking it for almost 2 years.

    Everything was normal, and in fact, the uterine lining measured at 3 mm (they prefer it to be less than 5).  I am post-menopausal (I was right in the window when I started chemo), but I don't think that's a factor.  I have no idea what causes some to have gyn problems, but I just wanted to let the newbies know that not everyone has them on Tamoxifen.

    Haha, but I seriously doubt if I will be one of the ones that takes it for 10 years!  I don't pay much attention to the latest study that flies in the face of 20-30 years of conventional wisdom about something.  I go with the long-term thinking that says it can actually cause problems if you take Tamoxifen longer than 5 years.  Now if 3 years from now they have study after study that says it's a bad idea to stop Tamoxifen after 5 years, I'll reconsider but I have become somewhat jaded after so many contradictory studies.  Do this, no don't do this!  On 2nd thought, do it!  Aargh!  I actually chose Tamoxifen because it has been around so long - since the 60's, and they know it well.

  • BlueLily
    BlueLily Member Posts: 24
    edited December 2012

    Ditto with Heartnsoul ... I linger on this thread and guess that most with SE's do as well - those who don't suffer SE's have no reason to stop by.  So ... Obviously, I have SE's but I generally figure they beat the alternative ... aches and pains -I deal or take advil when dealing or (wine:) need help, cholesterol - I now take a statin of 40 mg's whereas I took 10mg prior dx - not my first choice, but beats the alternative ... I had been counting down the months with each scipt refill ... I am not going to say no to adding on 5 more years .... not going to say yes either.  One precious day at time ... and when the aches, pains and sleepless get a bit rough to bear, I remind myself how lucky I am.  On that note, I will also remind myself that they may come up with a new study between now and then.... and making myself crazy about the 10 year thing is too much for me.  Gosh nows, I could get hit by a bus before then!   It's all good ... research today will someday lead to a cure ...  

  • Ado
    Ado Member Posts: 21
    edited December 2012

    Sixteen months on Tamoxifen and had six cm polyp removed this week. Will get results next Friday. Am a bit worried about uterine cancer. Would like hysterectomy to prevent this recurring in future. Stopped Tamoxifen ten days ago and cannot believe the improvement in my joints. I have not been able to bend my right fore finger for the last year and my hips and knees have been terrible at night. Not now though I feel so much better already.

  • jo1955
    jo1955 Member Posts: 7,545
    edited December 2012

    Ado - I also have had numerous uterine issues with Tamox - had a 3 cm polyp removed this summer.  I definitely want a hysterectomy.

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