Arimidex - Coping with the SE's

ruthbru

Not everyone has horrible SEs (saying this for the newbies). I feel great and am probably more healthy than I ever was, because now I really work at it.

schatzi14

ruth...how long have you been taking Arimidex? Am sure I have asked you that before but still have some residue of "chemo brain"....good excuse anyways! So far I have had no SEs from it...but I am just beginning my 4th month.

ruthbru

In August I will be done with my five years .

schatzi14

ruth...congrats, that is an amazing feat in itself....continued good health

Anonymous

Like ruth, I have little to no problems with se's so everyone will be different.  You won't know until you try and then it could be that they won't hit until 3 mos or 6 months or 2 years (yes, they can come as late as that, unfortunately).  For the record, I'm 3 years in with probably 4 more to go.  I am also working hard at being healthy though I'm not going overboard.  As JO-5 always said, SE's are easier to fight than BC! 

HUGS.

LovesChristmas-Barb

That is wonderful Ruth! I'm looking forward to the day when I can say I'm almost finished but it's still 4 and 1/2 years away...

sebm9

Like Ruth and Patoo, I have almost no SEs from anastrozole (I had the whole enchilada, on tamoxifen). I offer this especially to  those women who might be "reading ahead" on what's in store for future therapies they might need to take. Please remember that every step of the way -- chemo, rads, hormonal -- there is a menu of SEs for any treatment but it is only a menu of *potential* SEs. You may or may not get any or all of them, and in varying degrees and for varying amounts of time. For example, I had no SEs from chemo or rads, tons from tamoxifen, and very little from anastrozole (once I figured out that Claritin will alleviate bone pain).

Cheers,

Susan 

WaveWhisperer

Susan, thanks for that reminder. I just started anastrozole and was worried about what was in store for me. I had lots of SE from chemo, none from rads (other than a bad burn). I appreciate your comments.

Bogie

For anyone having terrible side effects on Arimidex, my Oncologist took me off it for 3 week break and put me on Aromasin OMG! it was night and day for me. I know everyone is different but that switch made did the trick and hope this helps others

Anonymous

Bogie

I too had to stop Arimidex atfter 3 months - and restarted after a 6 week break, and have been FINE since, like Ruthbru will be 5 years in August.

SOMETIMES JUST TAKING A BREAK - and restarting, will be the answer to SE's.  I'm not saying Aromasin isn't better for you than arimidex - but it is also the STOPPING and starting that makes a HUGE, HUGE difference.

spunkyboobster

Bogie-sorry you had to suffer thru nasty se's, but glad your onc switched you early-on and you're doing better.

ginger_mea

Ruth congrats to being on the home stretch

schatzi14

I wonder why it helps to stop and restart...whatever works but it is curious. Did anyone get an explanation as to why?

ruthbru

I came to anti-hormonals from a different route than most. Originally, I was mis-diagnosed as triple negative (a long story), so when tests were rerun and I found out I was estrogen positive I cried tears of joy. Being able to take armidex cut the amount of chemo I had to do in half, and has given me something I have been able to do every day for the last five years to keep up the fight (instead of the 'goodbye and good luck' that our triple negative sisters get). Plus once I'm done, I will have a greater level of protection for many years beyond. I am beyond thrilled and thankful that I had this as an option!

Snoopsmom

I need some help here....I was told (by a nurse friend) that AIs were actally chemo and as a result I had to minimize my exposure to infection. That includes swimming pools....but I love to swim! I won't be seeing my RO until mid June so I was hoping to get some clarification of this before then.

slousha

HI,

I was told from RO no swimming pools three months after rads. Now I'm two years on AI's and swimming had lessened a lot of SE's from AI's - they are not chemo but estrogen regulator.

Best

Usha

NativeMainer

Snoopsmom--AIs are chemothererapy in the sense that it is chemical treatment of a condition (the actual definition of chemotherapy).  Unlike the drugs that we refer to as chemo, AIs do not cause bone marrow depression, which causes low white blood cell counts and leaves one at risk for infection.  So it IS safe to swim, go out in crowds, etc while taking an AI, where these activities are contraindicated during and for a few months after traditional chemo.  The AIs are in a class of drug called hormonals, meaning they affect one or more hormones in some way.  Chemo kills dividing cells, a totally different action with a different set of side effects.  FYI--I am a nurse, and used to work in a chemo clinic. The nurse who told you to minimize exposure to infection was caring but misinformed.  Enjoy your swims!

ruthbru

And you should point this out to her so that she does not give other women the same (stupid) advice!

Snoopsmom

Thanks for the information. I knew AIs were not chemo in the common usage of the word, and I knew they worked by hormone supression. That's why I was so surprised by her comments. My MO never said anything about having to guard against exposure to infection.

otter

Snoopsmom, listen to your med onco, and to NativeMainer. NM explained the situation wonderfully. As she said, your nurse-friend is caring and concerned, but seriously misinformed. Go swimming, and enjoy.

otter

GirlPowerDebbie

I have previously posted and lurked, but I have to jump in here with an update.  I started Arimidex early March after my rads was completed.  So I have 2.5 months under my belt. 

I have swiss cheese brain way worse than during chemo - I just cannot come up with words sometimes.  It is like the hard drive is grinding around looking for the word.  I hate this very much.  Sometimes my DH helps me out with the word, but it makes me feel "less" at work, definitely not cool.  I loved whichever one of you gorgeous ladies mentioned about not even knowing what WORD you want the synonym for, LOL!

I have serious aches and pains pretty much from the waist down - I feel like a 70 year old woman with numb feet.  And I exercise as much as I can - lots of yard work and walking - but the numb feet are cramping my style on walking.  I have fallen twice - once requiring stitches - I am so doppy now.

Thurs I was at the hospital for some pre-op work - getting my ovaries & tubes out 5/31 - and one of the nurses I talked to is a BC survivor.  She had identical issues on Arimidex and her onc switched her to Femara and she got some relief.  My onc said we would try Arimidex and if that did not work we will switch to Femara next.  I see her on 6/8, about a week out from my surgery. 

I confess I quit taking my Arimidex on Friday, and in 3 days I can feel a difference in my legs and feet.  I am giving myself a break so I can get all my outdoor work done before my surgery.  What - the cancer police will come to my house if I stop taking the damn things for 2 weeks? 

I completely agree not everyone will get every side effect, but I definitely have the swiss cheese brain and ridiculous pain, stiffness, numbness issues in legs.  Exercise or no exercise. 

These are quality of life issues.  Bleh.

Debbie

LovesChristmas-Barb

Debbie...I had a lot of problems with arimidex so my MO switched me to femara two months ago and I am feeling better. I still have some joint and muscle pain and fatigue but I'm overall feeling better and this is doable for now. My attitude is that it can't hurt to try the femara...you can always stop again if you want. I hope things improve for you!

Anonymous

Hi, Debbie, at one time or another I've experiened EVERYTHING you describe.  From my perspective, 5 years in August, it is all cyclical . I can't tell you WHAT I've done that's helped each "episode"cuz I keep adding supplements - the only thing I still have is the "swiss cheese" and I KNOW that's the lack of estrogen.  Low energy, not asmuch muscle strength as I had.

Basics for me: Acupuncture, Gluten Free, Thyroid Medication ( test TSH=Thryoid Stimualting Hormone shold be BELOW 2.5), Massage, NO SUGAR,low glycemic carbohydrates ( veggies,some quinoa, brown rice) BEANS, Exercise (walking, gardening, free weights), getting Vitamin D Blood level UP TO 50 ( at least) - hoping for 70 soon.

You've got E- in your signature?  Typo?

GmaNiki

I have been lurking around here for a while, but since today is my first day on A1 I thought I would introduce myself.

I am Type 2 diabetic, thyroid issues, asthmatic, with allergies, now  C. I take several meds for cholestrol, bp, diuretic, depression, allergies, reflux, thyroid, diabetes. I take them all at one time each morning with supplements including fish oil, calcuim, vit d, vit b, multi vit. and a fiber supplement. Enough meds to not feel like I have to eat after taking all that with a 1/4 cup juice. But I do eat usually right after taking the meds.

I had a hysterectomy w/ovaries in '99 so already went through a rough time with menopause, not looking forward to some of those symptoms coming back (insomnia, hot flashes, nite sweats!) But it is really important to me to keep the cancer at bay, so I will do what I can and put up with some SE's.

I had my LMX on March 29 and have lost 20 lbs since surgery, and have really been trying to eat healthy, and working on removing all wheat from my diet as I know visceral fat can manufacture estrogen so I would like to cut it naturally. Carbs are a big reason belly fat accumulates, so I want to gey rid of what I have and not make anymore.  I have increased the amount of protein I take in and really concentrate on eating vegetables with every meal hopefully to keep from have any constipation. Since I have never been one to regularly excercise getting that into my daily routine is stiill not happening, and my strength is down because of the TRAm reconstruction. Will try to walk more, but I know myself better than to say I will defintely do it.

I will return to work in 2 weeks hopefully and my office job really does keep me busy and also active, up and down, lots of stairs, a 4 block walk to my office from where I park, rain or shine! WE are planning a long weekend visiting my son and his family this weekend, not looking forward to the 6 hour drive, because riding in the car is when I like to munch.And hope for no SE during the weekend!

GirlPowerDebbie

Nikki - the long car rides kill me too - 5 hours round trip to OSU to see my son at school - and sitting in the car that long is killer.  Best of luck. 

Sunflower - thanks for the info!  Acupuncture is next on my list after I recover from the 5/31 surgery.  I am taking lots of supplements - getting that Vitamin D up - but have not gone gluten free yet, just not there yet.  Baby steps.  I have a demanding full time job and a yard crying for my attention.  I love my job, and it has been getting all my strength since they were kind enough to let me work at home the 5 months I was going thru chemo.  And the garden got NONE last year while I going thru treatments summer thru fall.  Iin the gardn is where I want to be in my free time, it is my therapy.  And no, the ER- is not a typo but my onc has never been 100% confident of the original path report.  We are treating agressively because I have a strong family history.  I am BRCA1 negative for the familial mutation that killed my niece, but her sister was just diagnosed with stage 3 ovarian (their mom, my sister, is a 33 year survivor).  I am waiting for results of additional genetic testing, will have those results Friday.   

Cancer sucks.  Just get thru each day the best you can.

Debbie

walley

Hi ladies,

I read every day but don't post  too often.I am about 1 year on armidex(generic) .Doing okay but recently have had the word thing....trying to think of simple words......and pains in my ankles when I walk.Feels like they are about to snap:( Anyone have this?????Thanks for any replys.Have a great night:)

Rocket

Hi Gals,



I refrain from posting too much on this thread because I have many side effects - joint pain, high cholesterol, night sweats, hot flashes, weight gain, insomnia, and forgetfulness. I don't want the newbies here to be scared off. Many women get very few side effects. I just happen to be one of the lucky ones. I have been on Anastrolzole for two years now without relief. I will suffer through because I am over 80% ER+ and I really believe this drug is working to protect me. I have been trying the Claritin, and while it's working for my allergies, it isn't cutting the joint pain. I required surgery in my thumb for trigger thumb, and it got better. Now it's back again. I can hardly bend my thumb. I will give the hand splint a try before resorting to more surgery. Gosh it gets discouraging now and then. I'll probably be taking this drug for longer than five years if the research shows it's beneficial by the time my five years is up. Like Ruthbru, I am very thankful for this drug in my arsenal despite the side effects.

Lifeafter

walley - Every morning!  Or like this weekend when I've had my feet up lounging around.

Started getting knee pain too.  I didn't take Claritin on Saturday and my body was so achy.  It took everything I had to get moving and I just went to Target. After that, I went straight home and laid down in bed.

I am hoping my exercise and eating keeps this under control.

Michelle

Anonymous

GmaNiki

There are all sorts of "warnings" on my Thryoid meds NOT to ake within 4 hours of Calcium, Iron.

Rocket - DO try the wrist splints - they made all the difference in the world for me, and I know for many other women.  ESP sleeping.

Wren44

I've been on Arimidex for 2 months now and have started having facial pimples, mostly on my nose. The skin on my body is very dry. I took a hot tub at my son's house and itched for 2 days. I started using almond oil on my scar and on my face to remove makeup, so perhaps that's the source of the pimples. I wipe it off immediately, so I wouldn't think that's the cause. Anyone else have this problem? Otherwise, I haven't had SEs (pause to go knock on wood).