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Coming off tamoxifen early to have a baby

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  • TessmereldaC
    TessmereldaC Member Posts: 81

    Hope everyone is doing well. 

    So yesterday was implanting day.  2 embryos implanted so fingers firmly crossed now.  Even though 15 eggs fertilised unfortunately they didn't seem to grow at the rate that was needed so besides those 2 I have only 1 other that will be frozen which gives us some sort of a backup as we can't really afford another full round.  So here goes!!  Happy

  • slg76
    slg76 Member Posts: 86


    Enverva, I'm so very sorry that the doctor was not helpful to you. I don't think he/she had any place saying what was said. My AMH reading was the same as yours. My doctor was optimistic from the start. She said it might not be easy but there is a good chance I will get pregnant. I have gotten pregnant once since, that ended in miscarriage and had nothing to do with my cancer. I'm sure that I will be pregnant again. Please don't give up hope and please do find a new doctor! It sounds like you need to worry about your surgery first but know that there is plenty of hope for you to become a mother.


    Tess, hoping, hoping, hoping for a sticky embryo!!!!

  • thelorax
    thelorax Member Posts: 12

    Hi Tessmerelda,

    Fingers crossed here for a sticky embryo!

  • TessmereldaC
    TessmereldaC Member Posts: 81


    thanks Hun x so nervous. Can't test til tues week. Feels like forever away.

  • TreadSoftly
    TreadSoftly Member Posts: 88


    fingers crossed for you too Tessmerelda, really hoping for a sticky bean for u! Smile


    I'm 16 weeks today & finally starting to return to feeling 'normal' again, nausea & vomiting have eased & energy levels returning to normal. First trimester is difficult but will be worth it, hopefully! Had a scan at 11 weeks, wonderful to see little person, v active with lots of arm & leg waving! Happy


    I have become extremely lop-sided, there was always a cup size difference but its at least 2 cup sizes now, C cup one side versus E the other! Oh well! Started wearing a prosthesis which helps, somewhat.


    Hope everyone is in good form, x

  • slg76
    slg76 Member Posts: 86


    So glad everything is looking good Treadsoftly!! I was high risk during my pregnancy which means they did an ultrasound every week or two near the end. I loved seeing Emily waving and moving around in there! Glad your energy levels are coming back. The first trimester can really knock you down!


    Tess, I'm sending you tons of sticky baby thoughts this week. Hang in there during the wait; I know it must seem like years away before testing.

  • TessmereldaC
    TessmereldaC Member Posts: 81
    thanks ladies!!! 8 days past transfer now - hanging on in there til Tuesday. So tempted to test on Saturday which will be 6 years to the day I found the lovely tumour on my breast.

    Treadsoftly - delighted that all is going well. Must be super exciting :)))
  • thelorax
    thelorax Member Posts: 12

    The waiting is excruciating. I always started testing 11 days after the fertilization date (so only 8 or 9 days after the transfer). This last (successful) time I had a faint pos test already at 11 days.

    Hoping to hear good news from you, fingers crossed.


  • Hello ladies


    I was on tamoxifen for three years before coming off the have a baby. My daughter is now three months old and my dr suggests I go back on tamoxifen. We plan on trying for another baby in a year but he says even going on for 9 months is a good idea. I am concerned with going on and coming off again so quickly and what it will do to my hormones .. Anyone else face this?

  • Marlene18
    Marlene18 Member Posts: 48


    I don't know that being on tamoxifen for a short time will impact your future fertility (aside from the miniscule risk of endometrial cancer of course). I've only been on it for 5 months but I still get regular periods. My doctor wants me to be on tamox for a year before potentially taking a break and then resume it as soon as the pregnancy is done. What do you think will happen with your hormones? I think tamox is just preventing estrogen from being absorbed by the breasts while you are taking it, it doesn't affect your body's production of estrogen.

  • velo
    velo Member Posts: 16


    Enerva - did you have your AMH test done after starting chemo? Do you still have periods? I don't think the test gives accurate numbers when chemopausal. At any rate I got the same result as you after my periods had resumed after chemo but a scan shows activity on the ovaries. So I am still hopeful - although my ovarian reserve is diminished it only takes one good egg :) Just not sure when I will decide to stop the tamoxifen.


    Tess - wow, wonderful results with your IVF. Keeping fingers crossed for you.

  • thelorax
    thelorax Member Posts: 12

    Hi, I hope everyone here is doing well. I wanted to update that I had my NT scan at 13 weeks on wednesday and every thing looks fine with the baby. He/she was sleeping all curled up with back to us, so the doc need to poke pretty hard to wake 'em up and get 'em to turn around for all the measurements. We didn't get the clearest images. My reconstruction was done with belly fat and apparently that changes how well they are able to do the imaging. But it was still great to see that little person in there.

  • Rutts
    Rutts Member Posts: 50


    that's amazing news thelorax really pleased for you :)

  • slg76
    slg76 Member Posts: 86


    Congratulations Lorax. Wonderful news!


    If it were me I would not go back on tamox for such a short period of time. My doctor told me to have one or two babies (finish my family) and then go back on it. I wouldn't risk the potential fertility problems and hormonal upset. It's a hard decision with not a lot of good research to guide us!

  • sakura73
    sakura73 Member Posts: 76


    Dear all


    I have not been on this thread for the best part of a year - how wonderful to check in and read about successful pregnancies! My congratulations to all of you, and my sympathies and love to those still trying.


    I've posted my story on this thread a couple of times (including right back when it started) so I won't repeat it here except to say my son Arthur is now nearly 2 and a half and was conceived naturally 14 months after the end of AC/T chemo. I had previously had a miscarriage at 11 weeks - I think my body needed a bit more time to adjust to post-chemo life. So slg76 please don't give up hope - my first pregnancy ended as yours did.


    For those worried about lymphoedema - I developed a mild case shortly before my pregnancy with Arthur. Pregnancy did not affect it and it remains a mild case 3 years on. .


    Anyway, I partly returned to post my own personal update which is that I am pregnant again at the age of 40. Only 12 weeks along so far, so a long way to go, but all looking as well as it can. This was another natural conception. I am very lucky and I bless the doctor who prescribed me Zolodex during my chemo as I am sure it helped preserve my fertility so that at the age of 40 and post chemo I am able to conceive. I urge all women facing chemo to ensure they get those Zoladex shots. They really do make a difference.


    I breastfed Arthur to 20 months on my non-cancer side, and hope to have another successful breastfeeding relationship this time. I never took Tamoxifen and my oncologist has never pressed me, since my initial decision, to change my mind. I feel comfortable with my decision to live, rather than just to survive. There are no guarantees in this life - the first woman to die from my chemo group was on Tamox and it did not save her. We have to make the best decisions we can in an uncertain world.


    Again, my love to all of you brave women!


    Rachel

  • TreadSoftly
    TreadSoftly Member Posts: 88


    congrats Rachel! Delighted to hear little Arthur is doing well & getting a little brother or sister! I remember reading your posts when I was going through treatment 3+ years ago, they filled me with such hope & confidence!

  • stephaniegee
    stephaniegee Member Posts: 42


    Hi Sakura,


    I am now where you were a few years ago, trying to decide between Tamoxifen or pregnancy. We are looking into surrogacy but I'm told it could be a year long wait to be matched, so now I am considering waiting a bit and then trying myself. My doctor was adamant that I should be on Tamox for the five years but I know I can make my own decisions.


    Did you take anything else instead of Tamoxifen?

  • sakura73
    sakura73 Member Posts: 76


    Hi Stephanie


    I took a supplement called I-3C for a while, prescribed by my naturopath. But otherwise, no.


    Do you have useful and precise stats on the benefit Tamox will give you? For instance, in my case the oncologist told me that post chemo my chance of a recurrence was 18%. With 5 years of Tamox the risk would be 12%. So while I would be reducing the risk by a third, I would still be left after 5 years with a more than one in ten chance of a recurrence PLUS I would have had no baby. A risk reduction of 6% was no way near good enough to justify saying goodbye to any chance of motherhood.


    Your stats might be different depending on the kind of tumour and the kind of treatment you had. But if, like me, Tamox offers little additional benefit, then that might be a basis for you to decide not to take it. Your oncologist should be able to give you that information.


    There is some growing evidence that in fact pregnancy post-cancer is protective against recurrence. Only time will tell as more and more of us decide to become parents, of course. As you know, your oncologist's role is to try and stop you getting cancer again. That's important, but being cancer-free is not the only thing we want. We want to be able to live our lives. And for me, though I respected my oncologist's view, his priority was not my priority.

  • angelbaby1
    angelbaby1 Member Posts: 27

    Sakura73 - I have followed this thread for a long time also, and have read your story a couple of times. im so glad u have jumped on for an update - and that it is all such great news!!
    I have chosen to take tamox for 2 years and have just 6 months to go. after a baby my onc said there is very little point for me going back on it, so I don't think I will, but I just cant wait to start trying for a baby. its also great to hear u were able to breastfeed for so long. im hoping I can breastfeed from my remaining side too.

    good luck with baby number 2 and thanks for giving us all some more hope!!

  • TessmereldaC
    TessmereldaC Member Posts: 81
    ah delighted to hear your new news Rachel!!! Great to hear that Arthur is doing so well too. It's a good point you make about statistics. I was told I now have a 12% risk and tamox wil take off 2% to that risk. My doc is anxious I go back on at some stage. He gave me 2 years to come off, get preg, and breast feed....not much time when you are in your late 30s!!!

    So.............as to where I am at. I haven't been on the thread for a month now following my first IVF. Things started out pretty good there with 20 eggs being retrieved 18 fertilising but then 2 days later we were down to 6 and in the end there were two to transfer (day 5 blastocyst) and only one left to freeze. I suppose I was just naïve and thought I'd have a freezer full!!! Anyways the two embies were transferred on Nov 13th. The 2 weeks that followed were the longest EVER. I started having symptoms but then I read that the progesterone I was taking would cause a lot of those symptoms so my head was completely melted. My testing date was on a tues so I took mon and tues off work cos I was completely nervous and wanted the time to process. By the Monday morning I was completely freaked and just wanted to know so I could grieve or whatever. I did the test and then freaked cos I didn't want to know!! I can't even explain my complete shock to discover two very distinct lines - I read the instructions a million times, took the second test....just sat there staring for ages. So now I am so very proud to announce that I am 8 weeks pregnant and I had my 2nd scan yesterday where I clearly saw my darling baby and heard his/her heartbeat!! Still can't believe it!! This will be some Christmas present for both my parents and DH's!!

    I would like to wish all the other expectant mothers here every luck and am so glad to now be in that position. For those still trying I hope this adds to the hope as all the other success stories here helped me so much. Never give up hope ladies....I was almost at the end of my journey and look what happened. I think I can say that this was the first cycle that I felt I was ready and that this could actually happen - not sure if it was the good success rates of IVF or just my determination to be a mother. Hold on to your dreams and have a super Christmas ladies and every best wish for loads more 2014 babies!!! xxx Tess
  • TreadSoftly
    TreadSoftly Member Posts: 88

    tess, delighted for you! That's such amazing news, the best Christmas pressie you could ever wish for!! Hoping all goes great for you, you deserve it! 

  • Rutts
    Rutts Member Posts: 50

    wow Tess that's amazing news :) congratulations. It's less than 3 months now until I can have my baby break from tamoxifen. I'm so excited but really nervous as well. 

    It's so nice to read all these positive post :) 

  • slg76
    slg76 Member Posts: 86

    Rachel...thank you for your update.  You put a big smile on my face.  Congratulations!!!  I hope you have a healthy, happy, fun pregnancy. 

    Tess...Congratulations on your pregnancy progressing so well.  I'm so happy for you.  I can't wait to see a picture of your little bundle once he/she arrives. 

    I got disappointing news from my doctor.  I haven't gotten a period in the 8 weeks since my miscarriage so I got some blood work done.  My FSH levels are really high which is a bad sign for fertility.  When your level gets to about 15 you are considered in peri-menopause and are not a candidate for any fertility treatments because your ovaries can't respond to the medications.  My FSH level came back at 100!!!  There is nothing to be done to bring a FSH level down.  Either my body will do it on its own in a couple months or not.  If not my doctor says I may spontaneously ovulate occasionally and that would be my only chance at pregnancy.  But, my hormone levels have always been pretty wackadoo so it's possible that I was in this same situation when I did get pregnant a few months ago.  Maybe I can do it again? 

  • TessmereldaC
    TessmereldaC Member Posts: 81

    you will definitely do it again Sara!!  I know it feels disheartening but as you say you may have been in this situation when you last got pregnant.  My periods were very up and down for a while as well and your body is bound to be messed up a bit after the miscarriage.  I have high hopes for you young lady!!! :)

    Have an amazing Christmas to you all and every best wish for 2014 xxxxxxxxxxxxxxx

  • angelbaby1
    angelbaby1 Member Posts: 27

    YAY Tess Congratulations!!! That's fantastic news Happy
    hope everyone had a fab Christmas and im looking forward to hearing more good baby news in 2014

  • sakura73
    sakura73 Member Posts: 76

    Congratulations, Tess! Wonderful news.

    Sara, don't give up hope yet! Modern medicine can work marvels, and so can our bodies.

  • Tpettis
    Tpettis Member Posts: 6

    I have been off chemo since feburary 2013. Before the start of chemo I had eggs frozen incase I gointo early menopause. Lucky my period came back in August 2013. I have been have been trying to get pregnant with my boyfriend.  In November we had sex every other day around the week of ovulation and even on day of ovulation.  My last period being of December was spotting and not enough to even fill a panty liner. I have worse acid reflux, bloating and constspstion. I am 2 Days late on my period but preganacy test was negative.  Help wwhat's wrong with me.  Why can't I get peso and now I missed a period I so dont want to go back into menopsuse yetim only 32. 

  • TessmereldaC
    TessmereldaC Member Posts: 81

    welcome Tpettis - first of all that is great news that you managed to get eggs before chemo - I was stage 1 and grade 3 also but my onc was insistent that there wasn't time before starting chemo to collect eggs.  That must be a great back up for you not to mention you are still so young - lucky you!! it's also fab that your period came back so quickly - it all sounds so positive for you!!! :)   As for your current predicament have you tried a second pregnancy test?  That's what I would do.  And even if that turns out to be negative also remember you have not being trying that long - hang in there hun - I have every faith you will get there - sometimes it just takes time for our bodies to fully settle down after chemo.  Every best wish to you - I have no doubt you will have good news for us soon!! xxx

  • gildedcage
    gildedcage Member Posts: 68

    Yea! Congrats, Tess!

  • Rutts
    Rutts Member Posts: 50

    hi Tpettis I would say do another test. You've also got to remember it can take up to 2 years for chemo and it's side effects to leave your body. It would be worth seeking medical advice as well. That's amazing news that you managed to save some eggs. I was unlucky with my attempt in egg collection as my follicle sacks were empty and we didn't have time to try again. 

    As for me I'm hoping this will be a good year, I come off my tamoxifen in march to start trying :) I'm so excited.

    Happy new year everyone... Here's hoping it's fab for us all xx