I don't want to know

awnie1301

Please don't tell me how your life has changed now that your are taking hormones. I don't want to know about how menopause was ruining your life...how you never got any sleep, how you are surprised you "didn't kill anyone" during that time. I don't want to hear how much better it all is now that you are taking hormones. And please, don't ask me again, "why is it that YOU can't take hormones".

My daily life is a roller coaster of emotions and hot flash or flush (or any other F work you might insert here). I don't sleep...well I do if I take one of those little blue pills which I have been told are addictive, but at this point who cares! I ache all over. Sometimes the first walk to the bathroom in the morning takes minutes...a journey that should be seconds. I can't participate in some of my favorite activities due to permanent nerve damage in my hands and arms. Heck, I still can't get my left arm over my head! I vacillate from depression to anxiety to feelings of "I should be grateful". Oh, and did I mention I have no sex life! Oh, I can still have sex. Thankfully my vaginal opening is still somewhat open but I have absolutely no sexual feelings.

So again, please don't tell me how things are for you now that you have discovered hormones. I promise I won't regale you with stories of soaking sheets and night time TV.

Thanks ladies...just needed a place to put my thoughts down. Having one of those days!

littleblueflowers

Hey lady. I totally hear you!

Deba1

I will just say....I am living in your world...........Where's that "like" button!!!

WinningSoFar

That was my life for at least five long years, and some of those symptoms still hang around. But, now I can sleep, oh boy can I sleep. And I no longer drip over everything. I had to white knuckle it too without any hormones. It almost makes me laugh when these hormone-taking ladies moan about their symptoms.

ElaineTherese

awnie,

I don't think you'll be finding too many women taking hormone replacement therapy on this board. Oh, and I don't sleep well either, and I run a fan over my bed all night, every night.

Fiona70

I understand so much. I'm only five months in and I'm seriously considering stopping treatment

ShetlandPony

Sing it, Sister! Next verse: I don't want to hear you chucklethat you have all the same symptoms (really?) and it's normal, when you are twenty years older than I am.

Optimist52

What a great thread! And I thought natural menopause was hard! I had just noticed my hot flashes were gradually easing off and was starting to feel ok again when whammo! 2nd BC diagnosis and onto letrozole. It should be called anti-hormone treatment.

awnie1301

Thank you all for your responses. I had a feeling I would find others that get it. I have had some rough days recently. Trying to live in the moment and find 'grace' every day...some days are just a bit more challenging than others.

Lou10

I cracked up at the flash or flush or any other F word! What a great post. I can so relate. You're only on one sleeping med? I'm now up to a cocktail of three (well, one of the three is for the neuropathy but it's supposed to help sleep too). And I can't even have an ultrasound wand up the wazoo, let alone sex. I'm jealous of you! It's so pathetic you gotta laugh. Thanks for the comic relief!

ChiSandy

Do you mean HRT or anti-hormone therapy? I never wanted HRT before bc--menopause was a breeze (and a relief), and before I had to make the decision (expecting to take it for both heart & bone protection), the reports came pouring in about it being heart-unhealthy and might increase risk for both ovarian and bc. So that was that.

As for anti-hormonals, I’ve been on letrozole since Jan. 1. The only side effects I’ve noticed are a little morning stiffness before my Celebrex kicks in, carb cravings and difficulty keeping my weight steady, and night sweats--but nowhere near as severe as during late pregnancy and definitely not true “hot flashes.” Haven’t seen more hairs in my comb or brush than usual. And any insomnia tends to be from too much stimulation close to bedtime as well as obsessing over stuff (especially about logistics).

Remember, people who don’t get side effects tend not to post in these drug subject threads. Your mileage may vary depending on how far out you are from menopause, physique (my MO puts her slim patients on anastrozole and her overweight and obese ones on letrozole), and whether you had preexisting OA and thinning hair.

PerAngusta

Hey Awnie!!! I am just reading this post of yours today! You poor thing!!! I COMPLETELY feel ya!! I just wrote (see Arimidex - Delayed Side Effects) a VERY SIMILAR post to yours on March 21st!!!! I am hearing from many women, that I am not alone in this......hell. But between all of us, I haven't been successful in identifying anyone who has taken the drugs, experienced the hell and found a way to get through it all. Mostly, I hear that women are going to STOP taking the meds....they are forced to make a decision between the quality of living and the benefits of reducing our risks of recurrence! That doesn't seem fair!! My hope is that there are PLENTY of women out there who just got happy again, moved on and moved forward and then....stopped posting because they became soooooo damned happy that they had no more time to post!! Too busy enjoying all of their happy days!!! Wouldn't that be nice? If there is ANYONE out there who can shed some light on this scenario or offer some hope....please write it all down....and if I have missed posts that already do this, please direct me to them. I am admittedly not "awesome" at navigating through this site because prior to bc....I was an outdoor, active, woman with very little time for online chatting. Now, it offers a nice change to constant TV watching!! lol

ShetlandPony

I've never watched so much TV in my life, PerAngusta. Found some funny shows, though.

My perspective about the option of quitting letrozole is influenced by the stage iv status. I'm not quitting. When the choice is living or not living, the side effects don't seem so insurmountable. I have to manage them, annoying as that is. That's my own personal experience--certainly not minimizing anyone else's. It doesn't feel like hell to me. Moving, exercising helps with joint pain. Replens and Astroglide X plus and other strategies help with sex. Moisiturizer, make-up, new clothes, a good haircut, dancing help me not feel the accelerated aging so much. Cotton jammies, layered clothing, etc. for hot flashes. Melatonin to help fall asleep. Accepting the things I cannot change. It is not fair, and it still annoys me when my much older relative tells me we all get this. But I am, as PA says, "busy enjoying all my happy days!"

awnie1301

Hi Shetland. I totally agree. I choose Letrozole over the alternative...not living. I am even hesitant to take a AI vacation as my Onc has suggested. He thinks if I do that and then switch to another AI I might get some relief of my symptoms. I figure it is better the "devil you know".

I keep taking my Advil if I am too achy. A good walk and stretch often makes me feel better. I realize that there is probably nothing to bring back my sex drive...after all I have had my ovaries out...but I do enjoy the closeness with my DH. I have learned to love layers and have discovered all sorts of light and breezy tops and bottoms for work. I still haven't found the perfect haircut that looks great both wet and dry but I am working on it.

I am working on the "living in the moment" stuff and finding joy in some of the small things.

Scarlett152

if I had a dollar for every person who asked me why I'm not taking estrogen after my prophylactic oophorectomy to ease my symptoms, I'd be a rich women!!! Unfortunately, it does underscore the general lack of education about the realities of breast cancer, especially ER positive.

PerAngusta

Oh man, great job Awnie and Shetland....all FABULOUS points and very positive....sounds like you have found ways to combat the "little devil" that seems to have taken over my mind and body. I caaaaaan do that (positive talk) sometimes and I liken it to seeing through a seriously thick fog....every once in a while I am thrilled by the glimpses of positive thoughts that pop in and back out of my conscious mind. When it happens (admittedly I am in a bit of a clear minded, happy mood for right now).....I feel strong and think that I can do anything, get through anything. I convince myself that I can endure - I have come this far!!!! I am happy for you and I applaud your ability to maintain a positive outlook - I am cheering for you both!!! Honestly and truly!!! PLEASE STAY POSITIVE - you are doing GREAT - I loved reading your words!! I wish I could do the same. I want to soooooo badly.

I am getting my hair done next week. My gorgeous, long (to the middle of my back), one length SILKY STRAIGHT brown hair with natural blond highlights and only a hint of gray in the widow's peak is now short, fuzzy and so curly that I wear a bathing cap after I get out of the tub (to mash it down after washing) and found a teensy tiny flat iron that can grip the short length of my BLACK PUBIC LOOKING head of hair. If any of you ever watched Brady Bunch reruns, you might remember the hairstyle of MR. BRADY? That, baaaaaaad 70's hairdo of his? Well, that's me. Sooooo, my hairdresser is (so sweet - grasping for words of encouragement while holding back her laughter - yes, my hair is THAT ridiculous looking).....planning to straighten my hair with some sort of natural product, give me a good cut and install (is that the right word?) hair extensions that are completely non damaging...and might give me a sexy little bang across the forehead!! Uh-huh.....I am afraid. I have been having nightmares that the finished product makes me look exactly like....eighties TV now ladies.....ALF!!! (google that image if you really want a good laugh!!)....and sadly, with my luck I WILL LOOK LIKE ALF. Funny now....won't be funny later!!!!

When the blues hit me.....they hit HARD! And if it was just me, then certainly, I would hang in there and tolerate myself. But I am hurting my loved ones.....badly. I feel ashamed but I just can't seem to control what comes out of my mouth!!! This, I compare to shots of strong alcohol....to illustrate, let's say "whiskey".....an Arimidex (or previously, Tamoxifen) dosage is like having to endure a shot of whiskey per hour, every hour AND NEVER SLIP UP AND SHOW ANYONE that I am ever feeling intoxicated or affected by the substance....it is impossible sometimes, to hold it all back!! I dooooooo try. I thought time would help....but so far, it doesn't seem to.

I have been trying to manage the se's of Tamoxifen for the past year and now Arimidex (after my hysterectomy)....Sometimes I caaaan manage....and other times (let's be honest - most times), not so much! When I am good, I am very good and when I am bad, I am HORRIBLE! On a recent drug holiday (suggested by med onc).....immediately following my (deliberate/my choice) hysterectomy, I no longer had to take Tamoxifen and we planned to delay my start date of Arimidex for a couple of weeks.....and I felt completely clear....everyday....back to living. And I wrote a list of things to remind myself about later.....just in case Arimidex DID happen to cause any side effects and sure enough....here I am...whining about se's again. It's embarrassing, actually....and funny enough, my letter of helpful tips, written during the drug holiday, is an awful lot like something Jekyll might have written to Hyde!!! Comical, but pathetic at the same time!!!

So sometimes, I am not sure if I am actually "living" or just "existing"? And is there a difference? Will my young children remember that I used to be clear, calm, beautiful and lovely? Or will this up and down, topsy turvy woman (whose every other word begins with F) take over their memories of mom? My youngest children were 9 and 11 when I was diagnosed and now they are 11 and 13 and I just started Arimidex 2 months ago....got FIVE YEARS OF THIS LEFT??? I don't know....I am really babbling here and will likely regret posting this note for the world to see....but maybe there are others out there who are also struggling like I am and maybe all of this babble helps....at the very least....helps people out there by reminding them what a nutcase I sound like and how they might wish to emulate a more positive mind and clear thinker? lol

Whatever is your issue with these crappy drugs.....wherever you are....please know that I am wishing great things for all of us (except when I am foaming at the mouth and throwing darts at photos of myself in a bikini - then, no....not so great of things for anyone!!! whahahahahahahahahaha).

Hang in there everyone and thanks for letting me RAAAAAANT!!!

Try to enjoy the long weekend, the bunny or whatever is your "thing"!!!! I wish you clarity and peace!!!!!

ShetlandPony

PerAngusta, I appreciate your honest and eloquent description of your experience. When depression or irritability has a physical component, can we just will ourselves out of it? The mental side effects of estrogen deprivation are real, and I suspect worse the younger you are. It sounds like you are fighting valiantly for a good life with your kids. And yeah, you want a life, not an existence. I don't think that staying positive all the time is possible, and I don't think it is some kind of moral failing to be not-positive. I do think that people have an amazing ability to adapt, and that the right support is extremely helpful.

Please forgive me if I give suggestions when you just needed to rant, and ignore them if that is best. But here is a little part of my story. When I finished taxol, I went on aromasin for about six weeks. For those six weeks I was depressed. Sobbing-on-the-couch depressed in a way that was not normal for me even during a sad time. I don't know how much part the drug played and how much was chemopause, or the psychological impact of the transition to my new stage iv life, or an upsetting situation separate from bc treatment. But I remember that my therapist said that even if aromasin was playing a part, she could still help me feel better. And I was ready to take antidepressants if necessary. As it happened, I changed three things all at once: Ibrance got approved and I was switched to letrozole, I fixed the bad situation, and I continued with the therapist. She helps me a lot.

So I guess my points are, first, be kind to yourself. Second, problem-solve with us, with your onc, and with a therapist who has oncology experience. Explore every practical solution to side-effects, discuss switching drugs, ask about medications to help, meet with a good therapist. Seek out relaxation and fun. And you are not absolutely trapped. Quality of life is part of the equation.

By the way, my chemo curl is just about gone now. So if your current hair troubles are from chemo, maybe yours will get back to normal, too.

awnie1301

Hi PerAugusta and Shetland,

Both of your posts are wonderful! PerAugusta your description of your hair is priceless and I laughed and laughed. I also love that you wrote yourself a note in your AI free days. I hope your incredible sense of humour is helping you through all of this. I imagine your kids probably see this too. They will grow up and, at some point, recognize how strong you are. I also have young(er) kids. They were 15,13, and 8 when I was diagnosed (now 18, 15 and 11). Thankfully they all have a sense of humour too...they can just laugh at me when I start flailing around and screaming for the windows of the car to open. I tell people that just after my mastectomy when I finally had a chance to call home my oldest daughter (15 at the time) answered the phone "hey titless, how are you". My younger daughter followed it up with "feel like you got a weight off your chest?" Just when I am feeling at my worst they can make me laugh.

Shetland your suggestions are great. I am taking an anti-depressant and I can't imagine life without it right now. I also see a therapist. I love having someone outside my family...with no particular connections to anyone in my life that I can talk with freely. I always come out of her office feeling so much better.

I think being able to connect with others having similar symptoms and issues is also a huge help. I don't post frequently on BCO but I have always appreciated reading and hearing others stories and ideas.

Thank you, thank you

VioletKali

LOVE. Being post menopausal at 33, nearly 34, is very unique. I get those types of questions ALL of the time.

chef127

Menopause has been a rough ride. Breast Cancer, exacerbation of a neuro condition that has left me semi disabled, hot flashes that sometimes lasts for hours, hair thinning, and everything else that the lack of estrogen causes, and of course getting old(er). I miss my period. strange girl. My mom and sister had almost no issues with meno, breezed through it.

I can't imagine being so young and in meno. Good for you, embracing the change.

xoxMaureen

ra1950

Where else can you "talk" with others who have been/are going through what you are experiencing and try to keep some humor about the whole situation?? I took Arimidex for 3 months, could not walk because of terrible pain in my toes/feet (gout-like symptoms), swelling/pain in my hands, irritability/mood swings, insomnia, vaginal dryness/no sex drive, and hot flashes. I had cervical cancer in 1978 and had a partial hysterectomy later followed by ovaries removed in 1981 and at that time started HRT.

At my diagnosis, my surgeon had me stop my HRT (at this point I'm 25 yrs. on the lowest dose possible) and I went through withdrawal including mood swings, hot flashes, etc. On Arimidex I felt like a 90-yr. old woman. I swear I even walked stooped over. I herniated a disc in my neck just by putting away my toothbrush! As a result, my MO had me take a break for 3-1/2 weeks and I just started taking Aromasin 4 days ago--not long enough to see if any SE's are going to pop up. MO says if I cannot tolerate the Aromasin he will switch me to Tamoxifen. My tumor was in the high 90's ER. One thing that is disturbing is how expensive the Aromasin is...even the generic will cost me about $200/mo. My first month was sent to me free from Pfizer, but currently my household income is right above the cutoff for any kind of assistance.

I try to remain grateful for SO much that IS positive...cancer caught early, Stage 1/Grade 1, lumpectomy, and much more. However, as many have said, it's great to have a place to let our guard down.

Hugs to all. RA

Occovegirl

I agree with you! It's horrible!

dtad

optimistic...actually it is called anti hormone therapy, not to be confused with hormone replacement therapy. Side effects from lack of estrogen are very real. Im happy for anyone who is doing well on anti hormone therapy but the fact remains that only 50 percent of women complete the 5 years due to side effects. My MO at a major NYC facility confirmed that statistic. My beef is can't we do better than a treatment that only 50 percent of us can tolerate? Maybe if more of us spoke up and just didn't settle than research money could be spent on finding better alternatives!