Coming off tamoxifen early to have a baby
Comments
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cuculi- do you think your stomach ache could be acid? I had to be on rx antacids during chemo (omeprizole). Or is it nausea? I hate to say but taxotere (similar to taxol) kicked my butt.0 -
Thanks slg. During AC I was taking omeprizole...Now ranitidine once a day, every night, and I called the onc who said to take a pill for the stomach ache (pargeverine+clonixin)... the pain is less but still have it... this is worse than my previous chemo sessions since it is hard to work with this continuous pain... more like acid or just when it hurts, not nausea... ommmmm... patience...0 -
Sara - thinking of you and yours and hoping for great things for you very soon x
Marlene - I can totally relate to the age thing (just turned 39). I agree with all Sara says and would defo recommend AMH test...gave me great hope. We have been trying for a year and after 4 cycles of CLomid we start IVF next month. On a positive note my specialist have clients right up to age 45 so there is time yet if AMH is good
Cuculi - i'm a big fan of yoga, meditation, nutrition as well...find them all super. I hadn't heard of gyrotonic but youtubed it and it looks cool. Hope the stomach pains ease off. I took taxotol - I think it only lasted 1-2 days and I just took whatever meds I was on the few days after chemo - I think it was motilium.
Love to all x0 -
cuculi
I'm hoping, hoping, hoping that taxol goes ok for you. I was told by many that AC would be much harder than taxol. Not true for me! I had severe joint, abdominal, and chest pains on taxotere. I was hospitalized to do scans on both abdomen and chest and also because I spiked a fever on two different taxotere cycles. Augh! Of course the scans came back clear. My doctor said that was a really weird side effect to get but my body doesn't do anything the normal way. I'm sharing not to scare you but just to say it's ok if you find taxol hard. I still hear that many people find it easier than AC. I guess we all react differently and my body went on revolt during that part of my treatment.
Marlene
I was thinking that if you AMH comes back low you may want to wait on the tamoxifen, although I've heard from several places that it is by far most effective if taken immediately. You could also think about freezing eggs if your doctor gives the go ahead for the hormones needed to do that. But, if your AMH comes back low please don't give up on having another baby. My AMH was so low that it could not be detected on the test but I did conceive in Aug.
Tess,
Hi So glad that you have a new plan in place. Maybe we will be pregnant at the same time!0 -
Thanks for the welcome
I have actually been on the tamox since June so it's too late to delay that. My periods resumed in April though right after my last dose of taxol and have been regular since then so that is a good sign?
Sara, I'm not sure what specifically you mean by my prognosis. I don't think we have quite the same tests here in Canada so as far as I can tell, most young women with Grade 3 cancer cells would be recommended for chemo. My twin sister went through this whole thing five years ago and she was stage 1 and not even HER2+ and still did chemo. She declined to take tamoxifen though, since she wanted to preserve her fertility. Her son is 18 months old now and she's planning the next one! My oncologist throws out what sound to me like really rough numbers - like initially, my recurrence rate was 40%. With chemo, that is cut to 20% and with radiation, it is reduced to 10%. I'm not sure how they factor in tamoxifen...
Cuculi, I'm not sure what helps with your pain. I was so lucky with taxol and had pretty minimal side effects, just the tingly numbing at my extremities which was eased significantly by taking L-carnitine, magnesium, and B-6. I was strict about my exercise regime throughout chemo too, in order to keep myself in fighting shape to recover!
Let's all just hold on to hope.0 -
Hi slg76,
Sad news, I hope you can start trying again soon. Anyway, it is important the fact that now you know that you can actually get pregnant, so it is a matter of time that you can try it again. As for me, I´m almost 10 weeks pregnant now, and my doctor wants to do a chorionic villus biopsy for week 12, to discard the possible toxic effects of chemo on the baby, I hope everything will go ok...
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Hi Sig76,
I've been thinking about you pending your results. I'm sorry it's sad news, but I am so pleased that you know for sure that you can get pregnant which is fantastic. A friend of mine once gave me a new way to look at miscarriages - she said she'd rather it happened sooner than later as essentially it was her body doing the right thing. I hadn't really thought of it like that. Anyway, you know everyone on this board is rooting for you and sending those cyber hugs. I think it's 'watch this space' where you are concerned...
Can I ask about the AMH test you were talking about - does the tamoxifen interfere with the result or is it a true result even though you are on a drug which effects hormone levels?
All my best to everyone x0 -
Hi Lisa I agree with Rachel, in my case I was dx at 38 never married and not Bf. the dr. gave me material to read but at the same time schedule my first chemo in 7 days after I saw them so I had not enough time to research on all it meant with regards to having children. I then realized what had happen and it was too late the fertility clinic told me I was to freeze the eggs before I started chemo ;( so I was sad. then during chemo I started reading and reading and came to the conclusion I did not want to take Tamoxifen as Rachel said its a small risk and I am ok taking it. I feel I want my body to try to fight back and I need to be as free of drugs as possible. I am afraid yes but I also feel way safer by not taking that drug. I am still single and now after cancer I don't even think I will find my other half but if it is meant to happen then I hope my body will have a chance to have a child I am now 40, waiting for my final surgery which will replace the TE with permanent implants and that is all I want to focus on. After that I will try to eat healthy and be positive keep smiling, and see what happens. Feel free to PM any time. I hope all turns out well for you and your hub.
Rachel thanks for your post it made me happy I am afraid to tell people I do not take Tamoxifen I usually just keep it a secret cuz ladies get offended and mad at my decision
PM me any time, good luck
Take care0 -
Thanks to everyone for your well-wishes. I am very disappointed about my mc but it is good news that I was able to get pregnant and I also believe that this is natures way of doing "quality control". I would much rather have an early mc than have an unhealthy child. I'm confident that I will get pregnant again. I'm still waiting for my body to figure out that the baby stopped growing and get on with the bleeding. I hope it happens soon.
Marlene: You did answer my question. I was asking what your recurrence likelihood was. From what I have read tamoxifen offers a small, but statistically significant, reduction in recurrence rates. If a woman's cancer had spread and recurrence was very likely then it seems to me this small amount of extra protection from tamoxifen is more needed.
cloudberry: AHM stands for anti-malarian hormone it is tests how many eggs are left in your ovaries. My doctor told me that the results are not valid if you are on tamoxifen. She had me wait a couple of months after I stopped taking it before she tested my AMH.
Enerva: that is terrible that people give you a hard time about your medical decisions!! It is certainly nobody else's business but yours. I think that as long as a person is well-informed about what the options are then it is totally their decision to make and it should be respected.
Arale: so happy that you are moving right along with your pregnancy. I have read a study that says cancer survivors who had chemo do NOT have an increased rate of birth defects in future children. I hope your test comes out well.
Have a great weekend everybody!0 -
Hi Ladies -- I have been lurking on this thread for awhile because my mind often wanders to the possibility of a second child. It's a little early for me to really think about having a second, but I always wonder if its something I should dream about or try to move on from that thought and redefine my planned future. I too was diagnosed while pregnant. I noticed my lump the month I got pregnant and pointed it out to my family doctor. Unfortunately, she told me it was a SE of being pregnant, and me being young and naive I believed her and didn't really press her. 7 months later, I mentioned it to my OB/GYN and she sends me to get an immediate ultrasound and biopsy... and well, we know how this story goes....
My BC was 99% estrogen positive -- and I'm terrified to get pregnant again, both because of the increase in hormones and nightmare flashbacks to the last time and my fear that the pregnancy caused the BC (I was 31 with no family history). My MO hasn't told me anything about my recurrence rates so I'm not really sure what my prognosis is - however my BC spread to two lymph nodes (possibly because it was fueled by my pregnancy hormones for at least 8 months). I see a lot of your MO's are saying it is OK to stop tamoxifen after 2 years to have a baby break. Would your MO think differently if it had spread to your nodes? How would I find out more information about my specific situation and if it would be a slight risk or something awful to try and get pregnant again one day?? Sorry for all the questions, but I feel so clueless because my MO is so conservative and just told me to take tamoxifen for five years and we will see how my health is. Very vague and open-ended! EEK! I would love to have more children, but also want to be as healthy as possible for my first child -- and just can't seem to figure out how risky future pregnancies would actually be for me.... ARGHHHHHHH!!!
ok, well.... just wanted to introduce myself and share a little of my story since I've been following all of you. Congrats to those who have little one's on the way!
slg - I'm so sorry for your loss, my heart is breaking for you. But I have faith that you will be sharing happy news with us again soon - be strong & I am sending lots of love your way!0 -
Hi fight4two,
Welcome to the board! Everyone is lovely here and, as we all find ourselves in a grey area, I hope you find it useful to hear other people's stories. For my part, I was diagnosed at 30 with no family history. I had 2/10 lymph nodes positive and my oncologist would have been happy for me to go off tamoxifen after 18 months to conceive. He is very relaxed about it and says that retrospective studies show that statistically speaking women who get pregnant after cancer actually do better than women who don't, even though they are not sure why. That said, my consultant advised me to stay on tamoxifen for 5 years, but said he would compromise at 3 years. Of course that was before they started talking about 10 years!...
Personally I am weighing up the (conflicting) advice of my oncologist and my consultant with what my husband and I want for the future. Having looked for more definitive information and discovering there isn't any (!), I feel that our hopes fill the gap and become a significant part of the equation. While I don't want to jeopardise my health, I'm also not willing to put aside my hopes of having a family for an unknown. It's not easy though is it? And of course I find it is one thing to talk about it in theory, but I know I will be anxious when the day comes to stop taking the pill. But then look at Enerva - who has made the decision not to take tamoxifen in the first place.
Swings and roundabouts! I hope you find the right person to talk this through (your oncologist?) and come to a decision you are happy with xxx0 -
just to throw in my bit of info when I was making the decision to come off Tamox my onc told me that with my story (grade 3, stage 1 with 4 years post dx) I had a reoccurrence rate of approx. 10% with tamox and 12% without. Seemed low to me. I do intend to go back on it after (I think) but as regards when is after I will make that choice. For now I prefer to supplement that 2% with healthy eating, exercise, meditation and yoga. Best wishes to all xxx0
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Hi everyone it's been a while since I last logged on and wow lots has happened.
Firstly welcome to the new ladies and thank you for sharing your journeys.
Slg im so sorry to hear of your news. I can't even begin to imagine how your feeling
emotions flying everywhere. Stay strong and keep positive and you'll get your little bundle of joy that you so very much deserve. Sending lots of pma your way.
Enerva everyone has different views on the medication/treatment path they want to take. It is completely your decision, you should be proud of yourself for being strong enough and brave enough for the path you've chosen. I admire you for it
As for me I'm counting down the months (only 5 left) until I come off tamoxifen for my baby break I can't wait til I'm counting days instead of months. I've also recently had my yearly mammogram and reading my results was the best feeling ever, as it was worded 'cancer free' that's the first time since diagnosis that I've read those words.
Xx0 -
Thanks Rutts congratulations on your results i had by lateral mastectomy so no more mammogram 4 me. i am sure i wont miss those lol i have to be careful now and watch for any signs myself 0 -
Hi Ladies,
its been a couple of months since I checked in, but just thought id c how everyone is going.
slg sorry to hear about your miscarriage, but like u pointed out, at least u know everything is working and hopefully the angel that is waiting to b sent down to b with u is not too far away.
Marlene, I was told that tamoxifen reduces risk by a further 40%, which at first seems huge, however this number is taken from the odds of recurrence after taking all your other treatment into account. so u mentioned your number without tamox was about 10%. another 40% from that is really not a lot of percentage points. For me I was told without tamox my chance of recurrence would b about 11%. so 5 years tamox it'll bring it down to around 7%. but like most of u ladies on here im not willing to wait that long, and I was told that most benefits happen within the first 2 years, so im thinking that by stopping early its only about a 2% difference. not a lot when u look at it that way. particularly when u think about holding a newborn baby in your arms.
a massive congrats and good luck to those couple of ladies who are pregnant. hoping more of us can join u soon. I actually had an onc apptment today and happened to c a different one from my usual. it was kind of nice getting a second opinion on everything I have to say. and he is also on board with me stopping tamox after 2 years. so 8 months to go!!0 -
Thanks for the warm welcome! Hearing the positive stories and learning that some of your MO's feel comfortable with you stopping tamoxifen early really raises my spirits. I think maybe when the time comes where I seriously am considering a baby, I might have to change MO's -- I'd love to hear from an MO that knows about studies and cares about us women living the lives we hoped for. I think my current MO just does things by the book. Also, he has a lot of older patients and I don't think he fully understands the different issues us younger girls face.
Is there a thread called "I stopped tamoxifen early to have a baby and my health is still EXCELLENT"!! I'd love love love to hear positive stories from women who have successfully conceived, breastfed, and then gone back on tamoxifen. (BTW, does anyone know if you can breastfeed from your treated breast if you had chemo and radiation? Getting way ahead of myself, but just wondering if its safe.)
Love to all you inspiring ladies0 -
Hi fight4two. When you find that group of women who have been through this and have wonderful stories to tell I want to know about it!!! I'm sure there are some out there but I haven't found them yet.
It is considered safe to breast feed from your treated breast (chemo and radiation). BUT, most women produce very little or no milk from that breast. Many women still breastfeed successfully using just the other side. Another thing to keep in mind is that when you get pregnant and breast feed it's likely that only your non treated breast will get bigger. Padded bras are in our future! On a smilier note my mom has an inverted nipple and could only breast feed from one side; she fed 5 kids that way0 -
I just did a quick internet search and ran across this story:
21-11-2012 08:10 PM
Have posted this elsewhere but I think it could be quite encouraging for you so am posting here.
My sister had breast cancer aged 32. Grade 3 and in several nodes. She had lumpectomy, all nodes removed, chemo and radiotherapy. She wanted more children so did not opt for the strongest chemo. She chose to take tamoxifen for 2 years only. 4 years after diagnosis she had another baby girl. That was 10 years ago. She has had dcis in the other breast-widespread so had to have mastectomy but absolutely no invasive cancer. I might add she has lived life to the full and not stuck to a healthy diet in any way and enjoyed many many glasses of wine, parties, late nights and only the odd bout of exercise. I'm not suggesting this as the best lifestyle choice but seems to be working for her at the moment.
There is definitely life (lives) after cancer!
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that's a really good story to read Sara - love hearing these success stories not unlike Lisa who started this very thread!! We will get there ladies. I think some days i'm so lucky to have a great job, husband, family, etc, etc but why not have it all???!!! Why should one episode with stupid cancer stop us from living the lives we dreamed of and wish for. Bring on the 2014 babies!!! 0
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browsing the internet for some success stories. These are women here on the forum but I liked re-reading their stories. Here is your dose of optimism for the day...
miss302MinnesotaJoined: Jan 2009Posts: 10
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May 9, 2013 06:06pm miss302 wrote:
i have had two children after treatment, i am doing great. my first one was born exactly 4 years after my first chemo. i did femara with ovridel shot and iui to get preggo with my son and my second child a girl was a surprise, no plans or noit even trying!
Dx 4/10/2007, IDC, 5cm, Stage IIIb, Grade 3, 1/12 nodes, ER-/PR-, HER2-Radiation Therapy ExternalChemotherapy TaxotereChemotherapy TaxolChemotherapy 04/20/2007 Adriamycin, CytoxanSurgery 06/28/2007 Mastectomy (Left)Surgery 02/28/2008 Prophylactic Mastectomy (Right); Reconstruction: GAP flap (Both)
sakura73Melbourne AustraliaJoined: Feb 2009Posts: 446
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Apr 19, 2012 06:28pm sakura73 wrote:
hi elesha, I am one of the 2 women pickle mentioned. I had a baby almost 2 years to the day after finishing chemo. I didn't need to use IVF, my periods returned naturally after chemo/Zoladex and I conceived naturally. I refused Tamoxifen so that I could try and conceive. Arthur is now 8 months old and perfectly healthy, thank God. I am still breast feeding him from my non-cancer side.
Dx 1/22/2009, ILC, 2cm, Grade 2, 2/17 nodes, ER+/PR+, HER2-
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Thanks for these Sig76 - great stories. As Tessmerelda says, bring on the 2014 babies!
I love how positive and pro-active everyone is on this thread. I ran a half marathon recently and was getting tired towards the end. I saw a man raising money for Breast Cancer who also looked tired and thanked him. He smiled and pointed out that I was going to beat him (!) and I thought of all you ladies and how strong we are and it pushed me on. I thought how lucky I was to be running the race myself, rather than being a picture on someone's jersey, and I got my best time. So thanks for the virtual inspiration! x0 -
great story Cloudberry and congrats on your run. We are so lucky to be here living our lives! Here in the states it is breast cancer awareness month. I just came across this quote on the internet:
"Hope for the fighters, peace for the survivors, prayers for those taken"
It hit close to home for me as I certainly know people in all those categories. My aunt just had her first bc surgery the other day. We are waiting for the pathology to come back and hoping for clear nodes and margins.
I had a hard few days with the miscarriage. Physically I am fine but my hormones freaked out and I was an emotional wreck. I was moody like PMS but much worse. It seems to be calming down now, thank goodness. I'm sure my husband and daughter are grateful for my more stable mood Just scheduled my mammogram today and am looking forward to getting it behind me. I always get nervous on mammogram days!0 -
Sara - it's breast cancer awareness month here too in Ireland fingers crossed for ure aunt x you just reminded me about booking my mammogram - might leave it til after the IVF.
So I start IVF this weekend coming (depending on when AF arrives - that's if it does then if not happy days!!) Trying not to think about it too much as I know there is so much riding on it but I am determined to think positive and not get tied up in anything else.
Cloudberry - well done on the run - i'm starting to do a bit of training at the mo to build up to a 5k run to start with....anything to get to optimum fitness.
Fingers crossed to all x Tess0 -
Another success story at: http://www.babyzone.com/pregnancy/pregnancy-complications/pregnancy-after-breast-cancer_71688 (just copy this link into your browser)
and another one!!!
http://www.ivillage.com/real-story-babies-after-breast-cancer/4-a-286092
accar7 replied 1 year ago
I was 34 when I was diagnosed with breast cancer and since then I've had 4 children - 3 girls and 1 boy - my miracle babies
Guest replied 2 years ago
I had three babies after my breast cancer diagnosis at age 23. I had six months of chemo and 6 weeks of radiation. My first son was born 4 years after I finished treatment. I knew I wanted to be a mother, but never so much as when I was told that I might not be. But fertility wasn't an issue for me (clearly!) and my sons, now 16, 15 and 11, are strong and healthy. I know I am a better person for having had breast cancer and that I am blessed to have had my wonderful boys.
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Oh!! Thanks SO much for posting the stories and links to all the happy stories!! You girls are the best! I've only just joined this thread and already love you all so much
Wow - cloudberry, your running is impressive!! I used to run (2 years ago before my pregnancy and BC) but was afraid that exercising would cause lymphodema after my node removal surgery. I've been very afraid to exercise (lifting weights) or run even though I read that exercise is so important for us. You are so inspirational! Like Tess, maybe I'll try and gear up for a 5k. I'd love to feel fit again!!
Hugs to all of you -- you really make me feel happier than I have in months And yes, bring on those 2014 babies!!!0 -
More brilliant stories! All the best to you Tess, you know we will all be willing you on.
fight4two - I've got lymphodema and it doesn't stop me! Running is absolutely fine. I'll admit my arm doesn't particularly like a half marathon on a hot day, but all my training runs are fine. It's good to get the blood pumping and exercise is so beneficial - for mind and body. It's great to feel strong too. I've done a lot of physical stuff this year and I've loved it. Aiming for a 5k is a great idea, then you can work up to a 10k... ;-)
As for exercise and lymphodema - in my experience strain is the thing you have to look out for, so you are right to avoid weights. I'd advise being a bit soft on your arm - I carry heavy shopping with my good arm or use a backpack or shoulder bag. To be honest though, I generally tend to give it a stiff ignoring! I was so concerned about getting lymphodema but like all these things, you just get on with it ;-) x0 -
exciting times, Tess! I would say try to relax and not worry too much about the IVF, but who are we kidding?!
I had my aspiration for the miscarriage done 4 days ago now. I've just been lightly spotting and my HCG today was 1,000 (down from 20,000 last week).
I have gained some weight recently. Maybe a little from being pregnant but probably a lot from too much chocolate and not enough exercise. I need to get back into my exercise habit. I've never been a great runner but doing a couple miles a couple times a week is really good for me. Tess, you keep bugging me about this to get me going, ok? I need my jeans to fit again!
Wow! 4 kids after breast cancer. I read that and think, "hmmm, maybe two more would be a good idea"0 -
hello all!
Although I made my acct about 3-4 yrs ago when I was first diagnosed, I have been inactive on the site....
I am sooooo happy I ran across this thread while trying to do some research on stopping tamoxifen... All of u ladies stories have been SOOOOO inspirational for me, and have made me finally make my decision to stop taking tamoxifen, quick recap about myself, I am now 28, I was 24 when I was diagnosed, I did chemo, lumpectomy, rads, and now I've been on tamoxifen for 3yrs and the side effects are becoming unbearable! :-( between the mood swings, hot flashes, bone pain, decreased libido (not cool as a newly wed) I'm over tamoxifen, my husband and I would like to start trying to get pregnant next year... But I wanted to make an informed decision before taking myself off.... But the problem is I can't find any concrete info on statistics, but like I've said I am so happy to finally know that there are actually other young women out here experiencing the same things I am.... I wish I had become active on this site sooner, maybe I wouldn't have felt so isolated....
Congrats and blessings to all of you guys!!!0 -
This thread is definitely the best!
I have been quite busy and did not want to write a couple of lines, so almost 2 weeks or actually more than 2 weeks have gone by... and wow soooo many things happen... I do follow coz I get the notifications on my phone.
Where should I start?
Exercise: I do believe we should all excercise! I used to weight lift and have stopped since diagnosis. Probably next year will start again after finishing chemo and rads. I am doing gyrotonic as I said before and really like it... But I have to admit that last month was hard... emotionally and busy at work... ups and downs which it is normal plus a cold that took me ages to recover! Congrats to all that are running... I cant do that yet...
Sara: Thanks for the info regarding Taxol and your honesty. I appreciate it! I know you dont want to scare me. I have done 4 already and I am feeling better. 8 more to go I visited my homeopath and immediately started to feel a lot better regarding my stomach ache... this is good coz I was in a really bad mood... I know, we all do, you will get pregnant sooner or later. I know these words are not enough... I had a miscarriage last year... September 25...and another one when I was diagnosed... never had a problem getting pregant and well, I just think it happened for a reason... dont know why but there must be a reason... When I was diagnosed this year I decided to freeze an egg...I could only use my regular cycle coz as you know we cant use hormones,so they could not guarantee to "get it". But I did. I wanted so much to have this egg frozen, I did meditation the night before and I arrived calm and focused. So here we all know what we want and that it the first step. The next one is actually doing it so I know we will get pregnant.
I have to admit that the use of tamoxifen scares me. I love this site because it gives me the info I need. I am actually evaluating on not using it,howver now I am focusing on my chemo and my future rads.
I think it was Enerva who decided not to use tamoxifen? I follow also a thread here called Anyone else 100% alternative? It has provided me with interesting information you could check.
Kellee24: On that alternative thread, most women dont use tamoxifen, but use herbs, acupuncture and nutrition.And they are doing really really well.
I also love the succes stories... there is so much hope...
Regarding statistics,I believe there are not as many as we would have hoped for... But I do believe everyone is different... we are all different individuals and I have to admit I dont like to be considered as one more statistic but as a different individual. However, I must say statistics also gives us orientation,but I like doctors who understand me as well, what I want for my life... So I probably end up changing my onc coz I dont think he will understand that when I put it forward. We will see...
Now time to go to bed!
Cyber hugs!!!!!!!0 -
Hi Kellee! I'm so glad you found us. I'm sorry you are dealing with cancer when you are so young! I hope you find the support you need here and I'm glad you are weighing all your options. I can't point you to a particular study off the top of my head but I know that everybody says the most tamoxifen benefit comes in the first year or two. Does anyone have a reference for that?
As for me, I'm feeling better since my hormones are calming back down from the miscarriage. I'm started to get excited about being pregnant again, whenever that may be.0
