Coming off tamoxifen early to have a baby
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Hi slg76
My next onc appointment isn't actually until march 2014 but I can't wait that long. I'm going to call my Macmillan nurse to get some advice from her.
I've decided that, if its ok with my docs, I would like to come off tamoxifen in January 2014 as that will be 2 years of taking it and 2years 6months since diagnosis.
How are you doing slg76?
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Hi
Just to add that I've decided I will nit be doing tamoxifine. I will be going down the homepathic route and change life style and diet to concur a reoccurrence.
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fab1-good to hear you have a plan in place. I'm a big believer in both western and alternative medicine. What changes are you making in diet? Are you taking particular supplements? My onc is a big supporter of vitaminD and fish oil...which I guess everybody should take anyhow.
Rutts-can you make an extra apt with your onc? I forget where you are and don't know your insurance info. Anytime I want to talk to my onc she will see me and I just pay the office copay of $30.
I'm doing well. I just finished a third round of Femara, which is a fertility drug much like Clomid. No luck so far. My body didn't respond to the medication by making extra follicles like it should have. I'm working on finding a way to finance a cycle of injectable medication. I found one financial assistance program that I qualify for and will send off the application this weekend. I'm pretty sure if I don't get money from that we will just borrow the money and go for it. It would be around $2000.
Arale--sounds like we have some things in common. Ovulation sticks usually don't work for me. Since treatment my hormone levels are wacky and the sticks say I'm ovulating all the time. I also get egg white mucus several times a month but usually don't ovulate at all. I recently learned that you can have a regular cycle and not ovulate! I had no idea that could happen but that was in fact what my body was doing. You will have to get a day 3 progesterone test done to see if you ovulated the prior month. Remember, if you are using the sticks (as opposed to a digital monitor) they turn positive the day BEFORE you ovulate and will probably be negative again by the time you actually ovulate.
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Sig76
I've changed my diet im juicing fruit and veg ever day and no red meat. No sugar, once I complete the chemo my homepath will give list of foods to take to combate eastogen positive. I will send a list once I got it from her. X
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Slg76 - I live in the uk so I'm really lucky to have the support of the NHS and yes I'm hoping I can make another appointment.
Sorry to hear your fertility treatment isn't working yet but I'm sure it will and I really hope you get the funding you need.
Fab1 - your plan of going down the homeopath route sounds really good. Really hope it works for you. And I would also be interested in your food/diet list when you get it
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Hi rutss
I will post list once I get it. I noticed your from UK to, where you from in UK?
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Hi fab1 I'm not far from the Bristol area
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Hi girls
I just thought I would share with you a lady who has created a blog in which she gives excellent ideas and suggestions on what to eat extra fir those who have gone through b.c. She herself is a survivor and decided not to go down tamoxifibe route but through a holistic approach. See info@marnieclark.com. You can contact her personally and she id very good at responding with her views and experiences.
Rutts good to hear from someone in UK. X
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Hi girls! Just wanted to check in,it has been forever since I have been on, the twins are so much fun but sooo much work! We never sleep! Lol my three year old also keeps us on our toes so not much down time the girls are six months now and doing great, starting to sleep!! Lol! I just skimmed the last few months of posts! Letlet congrats!!! I love hearing success!! As for some comments on recurrence with pregnancy, my oncologist never blinked and eye at the thought of there being a problem al we know is that there is no real evidence of recurrence and those who have become pregnant continue to do well, my onc even said the estrogen is different in pregnancy, am I scared that although I'm not BRCA that my girls may one day get breast cancer, of course, not a day goes by that I don't think about it but I try to be hopeful when my mom had breast cancer to when I got it so much has changed hoping they will know more in 20/30 years and my girls won't live in fear! Good luck ladies keep the hope and know it can happen! My twins were a complete surprise no drugs or fertility treatment! If I can figure out how to post a pic I will!!take care lots of love and prayers to each of you!!!! Xoxo
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Hi
Congratulations onbtgr twins, would love to see pictures. I too have nit heard anymore news from others just assumed everyone busy with trying to make it happen before others post thier news. I myself still going through chemo, god willing once done and chemo out my system we can try to get pregnant. I will join thud thread with my attempts once im at that point. However in tgr meantime I do like to hear of how others are getting on. So please post your news girls x
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Hi Everyone,
I want to thank all the ladies here for the information and support given on this thread. I cannot tell you how much it has helped me! It encouraged me to be proactive and to take measures to address my fertility before starting chemo. I met with an infertility specialist who encouraged me to get my eggs harvested before chemo. I contacted the USC Fertility Dept and am working with a doctor who specializes in fertility preservation for women going through cancer. I'm currently in the process, have been injecting hormones for the last week and will go in at the end of the week for the procedure to get my eggs out and create embryos for freezing. I am breathing such a sigh of relief! I'm so glad I did not just take the word of my oncologist and checked it out here with you guys and on Google. The IVF doctor was able to contact my oncologist and have a meeting of the minds - now everyone is on board and I will be able to have children someday. This is such a comfort to me.
Congrats to those of you who are expecting and best of luck to those of you who are trying to conceive. I am rooting for you through my computer.
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Hi ladies!
I haven't posted in Awhile! Hubby and I have been trying for a baby for over a year and a half. We did get pregnant in Dec. 2011 but miscarried at 8 weeks and have been trying ever since. We finally went back to the fertility clinic (we have 9 frozen embryos there from IVF I did right after I found out I had breast cancer). I just did all the tests and the doctor said everything is normal and if I didn't do chemo then she would say that there was no problem getting pregnant. However chemo can damage the eggs which may be why we couldn't get pregnant so long story short, we are now getting ready for the frozen embryo transfer. I have been taking suprefact and estrace (estrogen pills). I was pretty nervous about thr estrogen pills since my BC is estrogen positive but its only for a short period of time. The embryo transfer is around thr 2nd week of August so I will keep you all updated. Fingers and toes crossed!! Hopefully it's another success story!0 -
I'm hoping for the best for you, SDK.
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Hey
SKD that's fab news for you and I'm sure it will all work brilliantly
Gildedcage so pleased you did the research and now in the process of egg freezing really hope you harvest some amazing eggs
I've got an appointment to talk to my breast nurse on Wednesday about finishing tamoxifen. Not sure what her reaction will be but she is a lovely lady and I'm sure she will just be honest with me (which is what I want) this is, however, just for advice, I will have to confront my onc about it at some point and not sure they will be so understanding!
Sending loads of pma to all ladies trying for lil bambinos and keeping fingers and toes crossed for you all
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Hi just wanted to see how everyone is doing?
I have my appointment with the breast care nurse to talk about having a 'baby break' tomorrow
feeling rather nervous and confused!!! Got loads of questions to ask but I'm sure I will forget most of them by tomorrow?!? I know I should write them down but I always seem to think of them at night in bed. Anyway I'm gonna stop gabbling on.
Really hope to hear from some of you soon.
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Rutts...how did your apt go?
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It went really good thanks. They are happy for me to come off tamoxifen in march next year. Its so nice to kind of have a date now
How's everyone else doing?
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I am 36, diagnosed with BC on May. I have 1 child of almost 3 years and, needless to say, I felt the diagnosis put a stop on my plans... I had surgery, going through chemo now, then radio and by the end of the year tamoxifen. I have read about it, side effects and all of that and am ver confused, in particular because I want another child.
When I read that some of you have conceived or will stop tamoxifen to conceive, I feel happy for you.
I am working on a more positive attitude, on my energy and nutrition to cure myself.
Wish you all the best and have a great week!
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Hi cuculi
Are you having zolidex with chemo too?
I can understand the confusion your going through at the moment, I was also very confused with everything but I think my confusion was because there was so much information to take in, I couldn't quite get to grips with it all.0 -
Rutts...I'm glad you have a plan in place. Now you have a date to look forward to! Yay!
Cuculi...it is so much information to understand and think about! I'm a scientist which gave me the upper hand on the medical jargon and such and I still had a hard time putting all the pieces together. I really wanted definite answers to my questions and struggled with the fact that we just don't know the answers yet. My fellow scientists need to speed things up
Can we help with any of your questions? Of course none of us ladies can offer medical advise but we can point you in the right direction or give you suggestions of what questions you might want to ask your doctor.
SKD...fingers and toes crossed for you. Please keep us updated.
I am still using fertility drugs in hopes of baby #2. This month I was to move on to injectable drugs which are stronger than the oral pills. But, my ultrasound yesterday showed a very large cyst on one of my ovaries. The cyst shouldn't be a problem but I can't take any fertility meds this month. Hopefully the cyst will be gone when we look next month and I will be back on track. Saw my onc recently and she is very pleased with how I am doing. This is my third year since diagnosis and I seem to be healthy with no sign of cancer
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Rutts, no I am not taking zolidex... I am doing the AC chemo (I think that is the name).
slg76, thanks for your asking. I am going through chemo quite well... even my doctor is impressed. One more "red" chemo and done with the 4, and then 12 of the "white" ones. Then radio (have not talked about how many or how is the procedure) and finally tamoxifen.
I know resarch makes the treatments to change. They say tamoxifen 5 years but I know there are studies for using it 10... the studies gives you statistics and these are not 99% figures but a lot less. So, if it is so but so much less why would I submit myself to tamoxifen which has so many side effect if the % is not that high? I am not saying I will not use it, I am processing and analyising the info. Usually when I say it, it is a scandal, but I just say i will process the info.
I am 36 so although I have always been cheerful, positive... needless to say this has affected me and my life and my plans of life. My relationship with my husband is not the same (not only because of sex life but in general has changed) since this situation has changed me. Not been able to plan for a baby as I wanted and people saying "dont think about of another baby" is so but so ... cant find a word... So when I read that some of you are conceiving or will conceive I feel soo happy for you and I like to experience those feelings of happiness which I have started to feel less...
Cyber hugs
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cuculi, sorry to hear you sounding so sad. It is a sad, frustrating, and helpless situation that we are in. It is impossible not to think of another baby. You don't just want to be alive after your cancer, you want to live the life you planned. I know your friends are just trying to comfort you but thinking you may not have a baby is NOT comforting. If nothing else I think you have to grieve for the potential loss of not having another child. My husband and I both changed after my diagnosis. Times were tough but in the end we came out of the cancer just fine.
Some doctors insist on 10 years of tamoxifen. My doctor says it is a waste of time and not worth putting up with side effects after the 5 years since you will have already gotten pretty much all the benefit from taking it. She is also fine with me coming off tamoxifen after a year (I did 18 months) to try to have a baby but did make me promise to go back on it afterward.
The AC is the problem for fertility. That drug gets into your ovaries and kills off the immature eggs that are in there. That combined with age (I am also 36) makes our fertility decline during treatment. I had a baby the year I got diagnosed and only tried for 3 months before I was pregnant. Now I'm having trouble even with fertility drugs. But, I'm convinced I will get pregnant...we just haven't figured out the right mix of meds for me yet.
Glad to hear your chemo is going well. I think you will find radiation to be a breeze compared to chemo. And, I was lucky and had little side effects from tamoxifen. Hopefully you will be the same way. Hang in there. Sending you a hug though my computer screen
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slg76: I truly appreciate your words. True I am sad but there are days that I feel (emotionally) a lot better than others. I am trying to focus on today. When the moment of taking tamoxifen arrives, I will talk with my oncologist. If I realize he is not someone with whom, as you did, evaluate options, I will look for someone else. All are studies and research so I believe decisions/treatments cannot be so "rigid".
I am a teacher and work in university so I understand studies, research, statistics, etc, although I am not a doctor nor a scientist. I have always been more spirtual and believe the power of our mind, but with "my feet on Earth", i.e. realistic. Quite a mix but that is me.
I have an ovule frozen... just one since I did it after I was diagnosed and could not use hormones. Only one ... but at least is one and an illusion I can hang on in case of infertilty and in case I decide to try for another baby.
Thanks again and hope all of you will be able to have your child
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Hi cuculi
I am sad to hear your story, I just wanted to share with you that I to am a spiritual person and have decided once I have completed chemo and radiation I will not be starting in tamoxifine. I have two embryos frozen and my plan and wish is to start trying to have a baby once chemo is out of my system and I am back to full health. All hope is hope no matter how small and the rest is in gods hands. X
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Thanks fab1 for your response. As a matter of fact I am exactly thinking the way you are: surgery + chemo + radiation and stop there.
There is another thread (100% alternative) which I follow and someone is taking herbs instead of the tamoxifen... It is an option, no one has to agree... And I understand that others think it is not... just options all of us have.
I am sad because my main side effects are emotional... which does not contribute with my relationship with my husband... and when I explain him about tamoxifen he does not even try to analyse my position, which I consider valid although he thinks I am basically suicidal... He is suffering I know, but "digesting" all these info is too much for me...
I am so glad when I read posts that makes me happy ... happy news from someone who has conceived or is trying... makes me smile
Have a great weekend!
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Hi - its been a while since I have posted in here. My story in short - my husband and I had been TTC our first child since we got married 3 years ago. After no luck I had fertility testing done and was diagnosed with diminished ovarian reserve. Was considering whether to have any interventions or not when I found the lump (age 38)
Decided to have embryos frozen before chemo to preserve fertility. Had about 10 follicles developing, but only 4 had eggs in them, none of them mature, two matured in the lab afterwards, but neither fertilized. Was really devastated.
After much indecision, decided to go ahead with chemo anyway (for me it was about 6% benefit so in that gray zone). Periods stopped shortly afterwards and no idea whether they would ever come back - esp with my diminished ovarian reserve. Still with the risks of pregnancy while on tamoxifen was fitted with a copper IUD despite the fact that I desperately wanted a baby, was fairly certain I was not fertile anyway, and was menopausal complete with hot flashes.
Got my first period back a few weeks ago YAY!! about 10 months after finishing chemo, and while still on tamoxifen. Had some idea something was going on before it happened because I had a crazy jump in libido about 2 weeks previous, and had sore boobs before.
Just went back to see the fertility specialist who did an transvaginal u/s around cycle day 25. The right ovary had 3-4 large follicles on it (I think she referred to them as cysts) - largest was 28mm. There was one follicle on the left ovary which she referred to the left ovary as "fairly quiet". Anyways, she said basically that tamoxifen acts like Clomid and stimulates the ovaries, and that is why its fairly common to have cysts.
Am scared to come off the tamoxifen early to TTC naturally - pregnancy is protective supposedly but I worry about trying without success. But I really don't feel so great about taking tamoxifen anyway - I'm more of the philosophy that give the body the right conditions to heal itself - and worry about its toxicity. I also noticed a big jump in my fatigue since my period came back while on the tamoxifen - anyone else have this - wondering if the combination of tamoxifen and premenopausal isn't so great.
Anyway, the fertility specialist saw the follicles developing on tamoxifen a good sign that my body would respond for IVF, though cannot explain why we had little success the last time. Her idea is that I can have IVF while on the tamoxifen, and then freeze any embryos through vitrification (newer technique than traditional freezing) to use whenever. I just need approval of the MO (who pretty much cut me loose after starting me out on the tamoxifen) - which I can't see as being a problem since the tamoxifen should protect against the hormone spike.
I like this idea because then I can be on the tamoxifen for say 2-3 years but use my slightly younger eggs. But of course if I'm lucky enough to end up with embryos the number will likely be very small and I will have no idea if they will be viable or not until I try to use them.
I'm also coming around to the idea of egg donation, or possibly adopting an older child. (not being a spring chicken anymore - approaching my 40th birthday) Seeing as it seems you need to win the lottery to actually adopt a healthy newborn. So I don't really want to throw my limited financial resources at long shots either since all the options are expensive
Damn hormones - I can definitely see the correlation between my desperation to have a baby and my hormone levels - this quieted down during the chemopause.
Anyway the current plan is she wants to do another u/s at CD3 and have an AMH test done - which she said should not be affected by being on tamoxifen. I guess at this point I can evaluate what happens next.
Glad to read everyone's success stories, and wishing everyone that is currently trying the best of luck!
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Velvo I am moved by your honesty and your personal story. I relate so much to your post and others who have shared their experiences. I struggled with retrieving eggs prior to chemo but did manage to get two embryos. I was 38 at the time and did complete chemo and a year of herceptin. My period returned 3 months after treatment ended. My period is completely affected by stress and I do acupuncture to balance my hormones. Since doing acupuncture am off medication and can sleep soundly. This feels amazing because I have suffered from terrible insomnia. My period is mostly regular but can skip a month here and there.
I passes on tam. I didnot like that it increased the risk of uterine cancer. I also was on the pill at the time of diagnosis. I am off the pill and I am mindful of my diet, exercise 6 days a week and practice yoga. I wish doctors could explain why this happened. I think the pill was a factor for my bc.
My husband and I are taking a natural approach. We are enjoying the process but we have other goals. We are both mountain climbers and have been traveling across the country picking the highest peaks to summit. I did get a green light to see a fertility specialist and my doctor head of breast oncology at the Dana farber gave me his blessing. I just can not go down that path. I can not bear to hear a doctor sum up fertility based on some tests. I have heard so many wonderful stories where babies were conceived against all odds.
Lastly, it feels like the healing process from this trauma is so important. People who injure themselves playing a sport go to rehab and have recovery plans. Oncology is limited. Recovery , healing , and moving beyond this is sooooooo important. We all have a second act! I love hearing the inspirational stories on this thread. Good luck to everyone.0 -
I wish you tons of luck with a baby in the near future:) I have a question... Do you know if pregnancy could increase chances of lymphedema. I had one node removed and am concerned about future pregnancies. Looking for some knowledge from ladies who know way more than I do! Thanks and good luck!
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alrz...hmm, not a question I have thought about. With only one node gone it doesn't seem like you would be at much risk for lymphadema. A good question for your oncologist I guess. I would be curious to know too. I had 8 nodes taken out.
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Hi girls, how are you? So... I´m a little bit shocked these days, because after a really long cycle (for me) I decided to take a pregnancy test and... a pale purple line was there. I´m going to do another pregnancy test tomorrow and we´ll see... So surprising. We had an appointment next week with the fertility specialist.
If this is finally true I can test myself the possibility of lymphedema, because I have all my right nodes removed.
xx
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