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Coming off tamoxifen early to have a baby

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  • SKD
    SKD Member Posts: 35

    Hi ladies!

    So I came off tamoxifen a year after I was on it to try and conceive (onc was okay with it), 5 months later we did conceive but I miscarried at 8 weeks. We started trying again and it has been a year and a half with no luck so we went back to the fertility clinic. Luckily we have frozen embryos. I did all the tests (follicle count, HSG, blood tests) and everything came back completely normal so now we are doing the ovarian reserve test and will wait for results. If not, we will try IVF with frozen embryo transfer. Anyone have any luck with this?

  • TessmereldaC
    TessmereldaC Member Posts: 81

    Hello ladies,well it took longer than I thought for the AMH results - the wait was agonising but the news is good.  it's 27.  The Normal range is 22 - 40 so the doc is very happy with the result so will be going on Clomid shortly!!!  So delighted.  It's really given me that extra confidence. 

    Sig76 - any results for you yet?

    Treadsoftly - no idea what the royal jelly is for!!  My accu reckons its good so giving it a try!!  She has me on a multi vit, vit c, omega 3 and 6, agnus cactus, and dong quai.  Great to know that your onc is ok with hornonal therapys - makes me hopeful that my onc will feel the same :)

    SKD - so sorry to hear about your miscarriage - must seem so unfair after everything else.  Any results from AMH yet? Fingers crossed!!

    Baby dust to all ladies!!! xx

  • slg76
    slg76 Member Posts: 86

    Hi everybody.  

    Thanks Tessmerelda for asking about me.  I'm so happy for you that your AMH came back in the normal range. Fantastic news!  Are you using clomid on your next cycle?

    SKD-so sorry about your miscarriage.  I am so happy to hear that you have frozen embryos though!  I have a friend that is pregnant now (after breast cancer) via frozen eggs and her husband's sperm.  I wish I had this option.  I was pregnant with my first when I was originally diagnosed and I had to start treatment right away.  I could do any fertility preservation because of the pregnancy.  I have high hopes for you to be pregnant soon!

    I tested AMH, estrogen, progesterone, and FSH.  All hormones indicate menopause.  But, we can see follicles that are starting to develop during my cycle via ultrasound and I have having cycles which are good things.  My doctor says she has definitely seen people get pregnant with the hormone levels that I have.  I am going to try letrozole and ovidrel on my next cycle.  Femara (letrizole) is used for the same thing as Clomid but my doctor says that letrizole is also an aromatase inhibitor and keep estrogen levels lower than Clomid during treatment.  This will be safer for me since my cancer was estrogen/progesterone positive.  The ovidrel shot will let us know exactly when I ovulate.  Right now we have no idea when, or if, I am ovulating on my own.  My doctor reminds me that success with each cycle is less than 10% but I am optimistic that I will have success if I am persistent. 

    Sending good wishes to all of you!  

  • TessmereldaC
    TessmereldaC Member Posts: 81

    Sig76 - keeping my fingers crossed for you.  Interesting that you are going to have Femara.  I'm meeting my onc next week to discuss his opinion on what I should use so I will ask him about that.  My fertility doc says Clomid but I really want my oncs view.  So looks like I will be trying some thing on my next cycle..............or maybe the cycle I am on now is THE one where I get pregnant!!  I am opening the space for that :)  Have you tried the ovulation sticks to see if you are ovulating during your cycle?  I found them good....the monitor did not work for me cos cycles still around 35-40 days.  Optimisim is the way to go alright - believing is recieving!!! xx

  • slg76
    slg76 Member Posts: 86

    Hi Tessmerelda,

    It looks like we are going to be going through fertility treatments at just about the same time.  I will keep fingers crossed for both of us.  Where do you live?  Do you have other kids?  I live in Denver, Colorado (USA) with my husband of seven years.  We have one daughter who is almost three.  I was diagnosed when I was pregnant with her.  My husband and I both come from large families and can't imagine having an only child.  Oh, and my name is Sara :)

    I am so lucky to have an oncofertlity specialist 30 minutes from my house.  She works on the same floor as my oncologist so they can easily discuss my treatment with each other.  So, so lucky!  From all the reading I have done and from talking to my fertility doctor my understanding is that many doctors use Clomid because it is the tried and true drug for fertility.  Femara (letrozole) has been around quite a while now and has proven safe and effective.  Some doctors shy away from it because there was a safety concern early on and because using it for fertility is off-label (it is actually a breast cancer drug).  Femara will keep your estrogen lower during treatment, has fewer side effects for most women, and has a lower risk of multiples.  My doctor will monitor my follicle growth during the cycle so we know how many mature follicles are present at ovulation and could release a mature egg.  My doctor prefers to have 2-4 follicles for best chances of a singleton pregnancy and if for some wierd reason I have more follicles than that we would know not to try that month because the risk of twins, triplets would be much higher.  Not all doctors do monitoring with ultrasound but in my opinion the responsible, involved doctors do.  

    I have tried every way there is to monitor my ovulation.  My cycles have been anywhere from 19 to 65 days!  I don't get a temp. shift which means either that I'm not ovulating or that I'm one of the minority of women whoes temp. doesn't shift.  I used OPKs to time my first pregnancy.  Since cancer treatment (probably the tamoxifen) OPKs are positive for me no matter when in the month I take it.  I thought I could rely on my cervical fluid to tell me ovulation time but I get "fertile mucus" several times a month, I think because my estrogen levels are always shifted high from treatment.  So, the bottom line is I have no idea what my silly body is trying to do!  

    I'm waiting for my next cycle to do an ultrasound because I had a small cyst on my ovary that my doctor wants to be sure went away.  If it did then I'm clear to start fertility meds whenever we are ready.  My husband is getting used to the idea but I think we will probably start on my next cycle unless timing doesn't work out with our trip to Disneyland.  Taking my daughter to meet Mickey Mouse definitely takes priority over baby making for now :) 

    I never wanted only one child, although I am blessed to have her and feel lucky that she made me a mommy before my diagnosis.  I do feel like having another child is a little like telling cancer to shove it!  A victory for our return to health.  

    I'm glad to hear your doctors are involved and open to some options for you. Good luck with your appointments and of course with getting pregnant the old fashioned way in the meantime.  

  • slg76
    slg76 Member Posts: 86

    Sanbar8771

    Any news with your IVF?  THinking about you and hoping that it is going well.  

  • miss302
    miss302 Member Posts: 17

    i got pregnant after breast cancer doing the femara/ovridel combo with an iui.    i liked the femara much better then clomid, 

  • slg76
    slg76 Member Posts: 86

    Hi Miss302.  Congratulations on your son and now your surprise daughter as well!!  So happy for you and so nice to hear a success story.  Looks like we had the same chemo. drugs so your story gives me hope for my own chances of pregnancy.  How many femera cycles did you do?  How many follicles did you have when you did the Ovidrel shot?   I am doing timed intercouse to save money on the IUI (insurance doesn't cover any intertility).  Undecided about how many follicles to hope for...I guess I just need to wait and see what my body does.  

  • TessmereldaC
    TessmereldaC Member Posts: 81

    Sig76 -Tess here - yeah lets hope we both get great success with our treatments.  I'm in southern ireland and don't have any other kids.  I met my hubbi 4 years ago and am married almost 2 years.  I guess we could have started trying earlier than last sept but I really wanted to give myself the best chance by staying on tamox for as long as i could.  I'm definately intrigued with the femara idea. Meeting my onc on tues so will be questioning him on this.  Once he is happy with clomid/femara then I will do a final preg test as my period MAY be due in a week so if I'm not then I'm anxious to start immediatley.  Any update on your AMH?  And I can totally relate to what you are saying about an only child - i'm hoping for 2 so maybe clomid/femara will mean twins!!!!!! :)

    Miss302 - thanks so much for sharing your success story and congratulations!!  Can I ask what age you were when you concieved?  I'm 38 now and hearing the ticking pretty loudly these days!! 

  • TessmereldaC
    TessmereldaC Member Posts: 81

    well I met with my onc for my 5 year review and it went well.  I'm off tamox 1 year now and trying for 8 months or 6 cycles.   He is in support of going on clomid.  Even though I took tamox for 4 years he would be in favour of me going back on it after pregnancy until menopose and he has more plans for me then as well....hormone therapy.  Bit dissappointed that i'm facing back into meds for the long haul but I guess as long as it keeps me on this path to health then so what.  He says that coming off tamox puts an extra 2% chance of reoccurance over me but that seems quite small so i'm ok with that.  He also said that there is no research or evidence that clomid or IVF can be harmful for post cancer patienet so I was really happy with that.  We have a really good relationship as he is same age as me and has young kids so I feel he knows where i'm coming from.  So clomid starts this weekend when my period starts - wish me luck!!! :)  xxx

  • slg76
    slg76 Member Posts: 86

    Sounds like good news, Tess.  Wow, sounds like you got your cycle back very quickly after coming off tamoxifen!  My onc said that average is 7 months; mine was only 4 months.  It's reassuring to hear such similar thoughts from both our oncs.  My onc does say that there is no evidence that tamoxifen for more than 5 years adds any extra benefit.  But, I don't think there is evidence that it hurts anything either.  By the way, I am 36 so we are very close in age.  

    I am on day four of my Femera now.  No side effects at all.  I go in for an ultrasound in another week to check follicle growth and hopefully to a trigger shot to release the eggs.  I'm having my husband rearrange his work schedule for those few days since I can't get this done alone ;)  

    I'm so hopeful!  I have to say that my husband and I are a little worried about the potential of increased chance of birth defects.  Are we pushing our luck by forcing eggs to be released that otherwise would not be?  All we can do now is think positively and take good care of my body.  

  • slg76
    slg76 Member Posts: 86

    Hi all.

    The discussion has been quiet lately.  Anyone have thoughts or news?

    soccergirl-I also did accupuncture.  I got my period for the first time in 2.5 years the month that I started accupuncture!  Are your cycles smoothing out?

    Sanbar-any news from your IVF treatment? 

    I am on my first cycle of fertility meds.  My AMH was undetectable but my RE says she has seen many women get pegnant with the hormone levels that I have.  I go for an ultrasound to look at follicle growth on Thursday.  The past few days I have had a headache and some sharp pains in my abdomen (ovaries?).  Heads up for everyone that these are the most common side effects of Femera.  

    Sending good wishes to you all tonight.  

  • soccergirl
    soccergirl Member Posts: 190

    sig76- I do read the posts but I am a bit shy with posting.  You didn't have a period for 2.5 years?  Wow!  

    The acupuncture has helped with regulating my period and I am having more regular periods!  It is hard to be in our situations.  The reailty is that the posts on this site are the only info I can find about fertiltiy and cancer treatments.  I appreciate every post and the honesty of everyone's experience.  It is inspirational!!

  • slg76
    slg76 Member Posts: 86

    Good to hear from you, soccergirl. 

    I'm glad to hear that the accupuncture is helping.  I also take comfort in the posts here and knowing that other women are in a similar situation as me.  I think cancer complicates our lives in ways that other people just can't understand.  

    I feel so lucky to have a wonderful doctor in my area that specializes in fertility after cancer treatment.  I go to the Dr. tomorrow to see if I responded to my first round of fertility meds.  Fingers crossed for good follicles :)

  • soccergirl
    soccergirl Member Posts: 190

    I will cross my fingers!!! We are going to try this summer.  It is so scary!!

  • slg76
    slg76 Member Posts: 86

    scary for sure.  I go from worrying about have triplets to worrying that I won't get pregnant at all to worrying that my cancer will come back (even though there is no reason to think pregnancy will cause recurrence).  My husband and I are just big old worrywarts! 

    Soccergirl-where are you?  I'm in the US, Denver.  Do you actually play soccer?  My little sister and her husband are both soccer coaches :)

  • soccergirl
    soccergirl Member Posts: 190

    I live in Boston, Ma and yes I did play soccer in a  women's league prior to diagnosis.  I have not played competitvely since treatment but have been concentrating more on climging mountains.  I love CO!  I hiked Pikes Peak a few years ago and it was so wonderful.  

    I am afraid of the same things.  Each day does get easie.  On another note, I am pretty confident I am ovulating at this moment!   

  • slg76
    slg76 Member Posts: 86

    Hi all.

    I did my ultrasound today after taking Femera.  Looks like one potentially good follicle.  Not what I was hoping for but it's a start nonetheless.  We will give it a shot but not super high hopes for this cycle.  On a good note it seems that I am now able to monitor my ovulaton with OPKs!  For the last year they have been positive all the time.  I'm pretty sure I'm not ovulating every day :)  This should be interesting since my Dr. isn't sure if I am ovulating on my own or not.

    Soccergirl-I wish I was adventurous enough to climb some of the mountains around.  I drove to the top of Pikes Peak :)  Co is beautiful and I really like it here (I have been here 6 years).  My husband and I have made it a goal to do more hiking this summer.  Good news about your ovulation!!  That is a huge step in the right direction.  No trying yet though, right?  

  • soccergirl
    soccergirl Member Posts: 190

    We will start at the end of the month.  It is very nerve racking to say the least!

  • TessmereldaC
    TessmereldaC Member Posts: 81

    Sig76 - good luck with the follicle. Great news about the OPKs!!



    Soccergirl - good luck with the baby making - great that ovulation is looking good :)



    Been a bit quiet on here because I hadn't a clue what was going on. Should have had my period over a week ago but there is no sign. Really weird cos the time between ovulation and period is always 14 days. Of course we got all excited but i've taken 3 preg tests - all negative. I just want to make the start on Clomid now and move on from this roller coaster week. So annoying as not only does it tell me i'm not preg but also that my cycles are gone funny again. The only thing I can think of is that I missed accupuncture for the last 2 weeks. Won't be missing it again!! :)

  • fab1
    fab1 Member Posts: 43

    Hi lisa

    I'm not sure if your still involved in thus discuss. If so I would be grateful if you would respond as im in a similar situation and have soooo many questions. Please get in touch.

  • Skibunny
    Skibunny Member Posts: 54

    Hi Fab1. I'm also from the UK. I've posted in this group in the past and pop in to see how everyone's doing every now and then (fingers crossed for a thread baby boom!) but am keeping my head down at the mo and cracking on with 2 years of Tamoxifen.



    It looks like things are pretty fresh and new for you. I hope you're being looked after well. It's rubbish.



    Let me know if I, or any of the other girls, can help with your questions.



    X

  • Skibunny
    Skibunny Member Posts: 54

    PS I am a member of a Facebook group for younger women with breast cancer in the UK and have met up with some of the London girls. PM me if you think you might like to join our group. X

  • fab1
    fab1 Member Posts: 43

    Hi skinunny

    Thank you for your reply, it meant the world to me. I'm in the early stages of this rollercoaster, im due to start chemo in mid June. I'm currently going through ivf yo see if I can save some embryos. I'm desperate to have a child so the while timoic if tamoxifine is driving be crazy...im not sure if I want to take it!!! As it will interfere with my chances of having a child. I am not sure if I could after chemo try for a child then revisit the tamoxifine issue im 43 yrs old so clock sounds like big Ben to me. I'm in sooo much conflict is anyone else in this dilemma? All advice and help is welcomed.

    I'm so pleased to hear of all the girls on this thread happy stories. Xx 

  • Mirmirpanda
    Mirmirpanda Member Posts: 15

    Hi ladies.



    I've been reading along for a while, trying to keep up my hopes. I am 34, finished AC and now onto taxol/Herceptin with rads and tamoxifen to follow. I do have a little girl, Hazel, almost 20 months old. Infact she's how I discovered I had breast cancer!



    Anyways. I'm writing because I saw my MO the other day and well I've been in a constant state of tears since. She basically flat out told me I will NEVER have another baby. She told me it is too risky and that I should just be happy with what I have. I understand that I am highly ER+, and that is an issue, but I just feel gutted. She said it was basically me or a baby. I was just telling her that we may be revisiting having another child 3-4 years into tamoxifen, incase of recurrence. I was just trying to go over options like adoption and IVF/surrogate and stuff. She's set on the fact that having another child just isn't possible and that I should even consider having my ovaries and fallopian tubes removed.



    I love my daughter and hubs more than anything and if it was just the three of us together forever I'll be a very happy lady, I just don't want the chance of having another child, say in 5 years, to just be dismissed so easily and taken from me. I'm only 34!!! It's horrible enough to be going thought treatment, being betrayed by my own body and having to endure so much. But this is something that is important to me, to my family and I just feel like I need to forget about it now.



    I'm still in the very early stages of this journey, I know some of the facts. I know everyone is different. I guess I'm just trying to get more information, should I talk to another MO? Fertility Dr.? Will this piss my MO off?



    Any advice would be GREATLY appreciated

  • soccergirl
    soccergirl Member Posts: 190

    Miripanda- Maybe in 5 years they will have a cure for this disease.  I have been reading that there is a vaccine for the Her2 cancer cells.  Don't worry too far into the future.  My onc said pregnacy could be protective against BC.  I have a feeling there will be an explosion of options in the next few years!!!  

    I used the Penguin Cold Caps to save my hair during treatment.  This was unheard of a few years back!!! Things are changing!!!

  • TessmereldaC
    TessmereldaC Member Posts: 81

    Mirmirpanda - Soccergirl is so right - things are changing every day. Who knows what the 5 years will bring. As she says having a baby can be protective against BC. I was your age having treatment and i'm 5 years down the line and have started clomid this week...fingers crossed and all that :) I was stage one but was grade 3 ER + and HER2+ also. My onc never once suggested I not have a baby. Is your onc older? Mine is my age with 2 small kids. Mind you he is only allowing me the one pregnancy (so lets hope for twins!!! lol). The main thing now is the get through your treatment and cross that bridge in a few years.....never give up hope xxx?

    Sig76 - how is it all going for you??

  • slg76
    slg76 Member Posts: 86

    Hi Mirmirpanda.  Welcome to our little group!  I'm sorry to hear about your discouraging doctor apt.  Sounds like we had somewhat similar situations.  I was diagnosed (stage III due to large size, ER/PR+, 0/8 nodes) when I was 33 and I was pregnant with my first child.  I did my chemo while pregnant then more chemo, lumpectomy, and radiation after I had her.  Emily is now almost 3 and perfectly healthy.  I also am healthy and for now there is no sign of cancer.  I did 18 months of tamoxifen and then went off the medicine to try and have another baby.  I tried naturally for a year with no luck and am now on my second cycle of fertility meds.  I'm actually lucky enough to be working with a fertility doctor that specializes in cancer patients.  

    I consulted 4 oncologists during/after treatment.  I get different answers on many issues depending on the doctor.  My first oncologist told me never to have more children...to just forget about it.  The more I pushed her the more she backed up and in the end said that she thought it wasn't a good ethical decision to have more children in case I wouldn't be here to raise them.  My current oncologist, who also specializes in pregnant women, wanted me to take tamoxifen for at least a year and then she gave me the go ahead to go off tamoxifen to have one (or two) more babies.  I did have to promise, promise, promise her that I will go back on the tamoxifen after I'm done having babies/breast feeding to finish the 5 year course.  My father, who is an oncologist, has an opinion somewhere in the middle.  He thinks having kids is ok but he would like me to take the full 5 years of tamoxifen first.  Of course his opinion is biased because he's my father.  By then I would be 39 and the cytoxan did a number on my fertility so I'm not sure I could have more kids at that point.  Even now I'm not sure if I can get pregnant.  My AHM (ovarian reseve) is nondetectable.  

    I would say that you don't know what your future is going to bring but there is no reason to rule out more kids at this point.  Most especially if you are open to fostering and adopting!  Make sure that your doctors are giving their medical opinion and not their ehtical/moral opinion.  Your doctor should always be willing to explain the reason behind his/her opinions and should be open to you getting second opinions.  You can decide the moral implications for yourself when the time comes.  And, remember that your doctor can give you suggestions but you make your own decisions.  All current medical literature supports that pregnancy after treatment does not increase the liklihood of recurrence.  That said it seems that your recurrence liklihood may be higher since your nodes were all positive?  

    Tess-

    How exciting to hear about your clomid.  I guess we are officially fertility buddies now :)  I had no luck last month and just starting taking my med yesterday for this cycle.  I did ovulate last month which is great.  I feel like I'm moving in the right direction.  The letrazole (Femera) makes me so very moody and also gives me bad cramps and headaches.  Maybe this month will be easier?  I warned my husband that there will be needless tears for a week or so.  I hope you don't get the side effects.  Are you having your follicles monitored by ultrasound?  Keep me updated and I will keep fingers crossed for you.  I go in Friday for an ultrasound to check follicle growth.  

  • slg76
    slg76 Member Posts: 86

    By the way, Tess, we are also hoping for twins :)

  • TessmereldaC
    TessmereldaC Member Posts: 81

    Sig76 - i'm going in on Sunday for my scan so we have an exciting weekend ahead for us both!!! Sunday is also fathers day here in Ireland so i'm hoping that is a good omen!! Side effects are ok. I take the clomid around 5pm and so far so good. Have headache now but i'm putting it down to too much sun today!! Fingers crossed for us both!!! :) My period was very late which was SO frustrating cos I have been doing accu and they had gotten so regular. Oh well...a minor blip. Keep me posted on the ultrasound!! Baby dust to all!!

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