Estrogen Blockers ... To Take Or Not To Take

pixelpup:  I am so sorry you are having such problems with your ALs.  I have been on Arimidex for going on 7 years this January.  I managed to endure any and all SEs with sheer determination to survive.  I gave up on quality of life a long time ago.  When I try to speak to my Onc about the SEs I am having with Arimidex, his only abrupt reply is "Well, you are "still" alive aren't you!"  He seems to take it as a personal affront that I dare complain about side effects when the alternative could be so much worse.  It would be great if you have an Onc you can talk to who could provide suggestions to help you cope with your problems.  He needs to know how overwhelmed you feel.  I just hope he doesn't have the same attitude as my Onc.  As you can tell from my post, I gave up on quality of life  and decided "life" was worth what I am enduring to survive.  Not everyone on ALs agees with me but every decision has to be personal.  I hope you can make the best decision for yourself.  Best wishes for you.

pixelpup (I just "adore" that name you selected!)  First I think you need to understand "why" I have been able to cope for 7 years with that Heavenly drug from Hell.  Once I reached 5 years, my Onc felt that as long as I took the Vit D and calcium and my bones held up, there was no reason not to keep going on the drug since he felt my bc was aggressive and needed the estrogen stopped.  "He" seems to feel that putting up with being an emotional wreck and crying for days in my room is a small price to pay for being alive.

The worse side effects I have had were the emotional ones.  I get depressed and can't take any antidepressants due to many other medical problems I have to cope with.  I find that I get so irrational and my behavior embarrasses even "me".  I warn my family not to be frightened by my overly emotional outbursts and behavior they are not used to.  I think the reasons I have been able to cope with the joint and bone pains are because my body has been so used to pain from past injuries and medical problems that I had to learn many years ago to "cope" with pain or give up on my life.  I have a spinal fusion, followed by a cerebral brain aneurysm, followed by bc next year and when we lost our home to hurricane Katrina and moved to another state, I had an attack of Vertigo and fell and had a sub-dural hematoma and had to have another brain operation on the other side of my head.  The miracle of all this is with everything that has happened, none of my facilities were affected and I keep surviving when the doctors felt I could have died.  

Sooooo my torments with Arimidex to me were just new ones to add to everything else and I was determined bc was NOT going to keep me from taking care of my family.  Thankfully, I am retired and so is DP so I still run everything for the family and keep things going smoothly every day no matter how much my "body" tries to force me to be a vegetable.  If I get real depressed I close my personal bedroom door and have a good cry, say some prayers for so many others I know who are suffering maybe even more and then I get up and find something to make myself useful.That is the secret.  You must try to force yourself to stay active when your body wants to give up.  I have not asked to change ALs because I think they all have SEs and prefere to stick with Arimidex as long as I can keep the SEs under control and my tests are good.

Best of luck to you on your journey to survive.  BTW,  I think because my Onc may have to see many patients who are not fortunate enough to survive, he has developed a very cold determination to keep those like me surviving as long as he can.  So that is good for my family that I can still take care of them and he is really helping me with his cold manner.  

I do hope you make the right decision about what you should do.  Best of luck to you pixelpup!

Pixelpup, so sorry you are having so many SE.  I'm post-menapausal and have been on Tamoxifen for 6 weeks and have had no side effects.  You may want to see if your Doctor will let you try a SEM rather than an AI since the mechanism of action is so different.  I debated about taking Tamoxifen and decided I would give it a try and if the side effects were intolerable, I would stop.  

I'm post menopausal and had a small Stage I tumor.  I tried Arimidex and couldn't deal with all the side effects, which were nausea, vomitting and vertigo/dizziness.  The benefit to me in taking Arimidex was about 4 or 5% and I was still above 90% that the cancer wouldn't return.  I also tried Tamoxifen .. with the same problems and throw in some depression to boot.  I quit taking that as well.

My quality of life was more important than adding another 4% or 5% to my reduction rate.  I might add that this was against my doctor's recommendation.  I was lucky that my tumor was so small, less than one cm. and my margins were 6 cm all round. 

It was a very difficult decision for me to make.  I struggled with it for many months, read a lot of research and decided what I feel was best for me.

One thing though ... I never recommend that anyone follow my decisions .. I'm just sharing what I chose to do.  This was about 3 years ago .. and I'm still cancer free.

Hugs,

Bren

Alison -- Believe it or not, there ARE women who experience minimal to no SEs on the AIs, but generally they don't post here!  That is not to say I think you should try them out, however.  The oncs recommend them because it seems (as far as they are concerned) that is all they have in their arsenal to try to prevent recurrence.  There are some alternative tx (check out the alternative/complementary forum here at BCO) and then do some googling or find an integrative doc to help you sort through these.  Whatever you decide to do, make sure it feels RIGHT FOR YOU.  That's the most important thing.

I've noticed in my own case that the mild to moderate aches and stiffness lessened a great deal after about a year on Femara, and while I attribute occasional bouts of the blues (and memory lapses!) to the drug, it doesn't really affect my QOL.

Best of luck whatever you decide!    Linda

Hi Everyone,

I am also post-menapausal.  I found the breast tumor only by finding a lump in my armpit, so it had already spread to lymph nodes.  So very lucky I found the lump in armpit!  Full masectomy, chemo and rad.  Femara has also been a big pain in the butt for me.  I was very lucky about the nausea, but the aches, pains, fatigue and weight gain have not been fun.  My 5 years on Femara was up 11/04/10, so I have now been off Femara about 3 weeks.  I have not noticed any changes yet, in fact and trying to find out more about Femara withdrawals.  I am now having extreme headaches and some dizziness.

If your onc. is keeping you on longer than 5 years and you are post-menopausal, I would definetly go off Femara right away.  Onc says 2 1/2 months or so to get out of system, I have read 6 months before you start feeling normal again.  I don't know how important it is to be on Femara if you only had a lump removed, but if you are HR positive, I would definitly think about it twice.

Hey, regarding the brain loss.  I remember reading somewhere during chemo. that the chemo they use for breast cancer can cause some memory problems.  I don't know if it's reversable or not, I just printed it out to show my boss that I had "chemo brain", not my fault.

Anyone else having side affects from Femara withdrawal?  Thanks for sharing all your stuff!

pixelpup

I won't go near the estrogen blockers.

I too am supposed to take Arimidex after chemo. I'm only 30% ER+ and 5%PR+. My feeling is I'm willing to give it a try. I do hear that many have SE the first month but then not as bad. I also hear that although many women do have SE they aren't as bad as MammaB or pixelpup is experiencing.

And what is with these oncs that don't seem to be concerned with quality of life. I mean they give us all these drugs to minimize the SE of chemo ( unless you're stage IV). Chemo is only for several months. These hormone suppresser are for at least 5 years! They need to do better than "You're alive aren't you".

I'm with Mollyann on this one.  I tried Femara, but had an extremely severe SE -- so severe that I was afraid to even try one of the other A/Is.  So, against my onc's wishes, I've gone the natural route.  I use I3C as an estrogen modulator, have modified my diet to remove estrogenic foods as much as possible, and walk several miles a day as part of an overall self-devised estrogen-lowering program.  My primary doctor checks my estrogen levels, and I'm satisfied with those readings and my routine.

I've honestly had times when I've worried if I've made the right choice, but after my bad experience with an A/I and not wanting to do Tamoxifen either, it's where I am.  And as a BCO-friend reminds me, if I'd done an A/I or Tamox, I'd be constantly worried about their potential SEs (blood clots, ovarian cancer, etc.), so no choice is without concern.  Fortunately, I'm post-menopausal, and I had also been on HRT prior to my dx -- both important factors in my decision.     Deanna

Hi Pixelpup,

I have been on tamoxifen for almost two years and have very few side effects.  Maybe you should give it a try.  I know that the AIs have lower recurrence rates than tamoxifen, but tamox is still a very good drug that has been used for many years.  It may give you a better quality of life.  Good luck!

I have read that tamox can be used and has been used on post menopausal women. I think the als are newer and because they work a little better (not that much though) and don't have a risk of endometrial or uterine cancer (which is very slight on tomax) they might be preferred.

MommaB

I have a thyroid issue and take Tapozole it took five years to get my meds and levels right . I can not take it with Tamoxifen .  I'll be 45 this Jan 8 and have regular periods . How much estrogen could the adrenal gland produce? YUCK I hate all this over thinking . I'm just trying not to be a full time patient . Thanks for the advise  

First off, to all of you, your courage and strength are amazing. I pray each of you find peace and comfort in your battle. For me, I just registered to this site, and my wife was diagnosed with stage 1 BC in June this year. Quite a shock, but I guess you have all been through that same shock. She has finished lumpectomy, sentintenal biopsy, and radiation and gone thorugh that rather well. Fortunately, she had an Onca DX test which indiciated chemo would not be needed, but of course, standard protocol is now for her to start five years of AI (arimidex). We have both been doing much research on SE, and of course, many horror stories out there. I am an engineer, and therfore, rely on statistical data to help decide a path to take. Of cource, we all know stats are generalistic, and clearly each person must decide on the risk / reward relationship they are willing to assume. Having said that, the one question I cant seem to find data for, is what is the recurrence rate and long term survival rate of someone who choses AI after surgery and lumpectomy, verus 'bypassing' the AI protocol? I have seen much data comparing SERM (tamox) versus AI (arimidex), but no studies that indicate such data specific to treatment versus no treatment. My wife is looking at alternative routes, and while some of these may have merits, I dont see any real supporting data on those protocols other than personal testimonies. The SE numbers I have seen would lead one to believe that 70-80% of patients taking AI's  *should* have no side effects, but clearly when you do web research, all you read about is people that have experienced quite difficult encounters. Have any of you heard of people who are tolerating these protocols well? Has anyone heard of any estrogen blocking 'alternatives' wither fewer side effects (the ones I have seen are generally targeted at body builders and athletes, and again, no data exists to demonstrate SE's based on any clinical studies). Lastly, just curious, has any ONC recommended or suggested that one tests their estorgen levels prior to beginning an AI protocol? Clearly, if the point of an AI is to reduce Est levels for patients with est + receptors, it would seem that you would want to know waht your level was prior to beginning treatment, and then once the protocol was started.  Sorry for all of these questions, but I really dont think i get clear answers from the medical community in these areas, either the 'conventional' ones or the 'alternative' ones.

thanks for any advice or data you may have.