For Arimidex (Anastrozole) users, new, past, and ongoing

Spookiesmom

Peggy, I got a lawyer for my moms Medicaid. He was soooo worth it!

Proud! Good to see you!

AussieElaine

Hi Pita119, I started on Arimidex almost same time as you, I have been feeling hot but that could be because it is VERY hot in Australia ( summer time here) so not sure atm. My appetite has decreased and also a bit depressed but this could be related to the fact that I am feeling like a freak with the LE in my left arm. I just cannot cope that I don't look like a normal person any more with this huge fat arm. But so far no aches and pains but it's early days yet but I keep hoping and am doing plenty of walking. I have had to give up my job due to the LE and heaps of appointments but am looking forward to having more time to do things I enjoy.

Spookiesmom

Aussie, have you checked out the LE threads? Very helpful ladies there

PontiacPeggy

Spookiesmom, best money I've ever spent. It's impossible for normal people to figure out how to do Medicaid right esp. the first time and my guy says they have a nearly perfect record for the first time. They play by the book, no shenanigans. Fine by me. I have an elder law attorney (and staff - working mostly with the staff).

Spookiesmom

Sounds like the guy I had. Didn't take all that long, a month or less? All legal, no stress for me, done. Recommend it for anybody in that position

PontiacPeggy

Spookiesmom, plenty of hassle and stress since we had to do quite a bit financially. Hope to wrap it up in the next couple days then I can breathe - I hope. But my guy says jum and and I say the proverbial "how high?"

lago

AussieElaine Watch the depression I became depressed on Anastrozole/Arimidex. I finally took a 5 week break and to verify the drug was the cause. It was. I'm on Exemestane/Aromasin now. Ended up with Anxiety on that.after a few months I am not on a drug to treat that… I finally feel like my old self again. Don't let this go untreated.

I too have LE in my left arm but after some PT, wearing my sleeve and exercises I've been able to keep it totally under control.

AussieElaine

thanks Iago and Spookiesmom, it's actually my right arm not left, can't imagine how I got confusedI have found the LE thread really useful and I don't feel so alone but I just don't know how to cope with the fact that I do not look normal and will have to live like this for the rest of my life.

Iago, I keep it under control but that annoys me as well as it is so time consuming and I feel like this horrible LE is now my life and I don't want it to be. I am pretty sure the depression is all LE related and I am seeing the breast cancer psychologist. I really do not want to take any meds for it. Before the BC and LE I was the type of person who would have to scrape around for an aspirin ..ha ha now look at me. The loss of appetite is more worrying for me as i know it's really important to have good nutrition whilst fighting cancer and it's effects but I just don't feel like eating much. I'm so glad I found this site, you ladies are truly an inspiration

lago

AussieElaine I too never took any meds till cancer treatment. And never thought I would have an issue with depression. I got all through diagnosis, chemo, herceptin with no problem. But I now realize, because I so feel like me again that I should have treated the AIs side effect of depression/Anxiety sooner. There is no shame in it.

I too was upset when diagnosed with LE but in time you do get used to it. Best thing to do for it though is to keep active. Keep the fluids in your body moving around.

Manu14

Hi ladies,

Looks like I'll be joining the anastrozole group officially as of tomorrow. My MO decided to take me off of tamoxifen since I started having some uterine problems and I'm post-menopause anyway. He gave me the choice of trying anastrozole or letrozole. For those old enough to remember, I felt like I was in the TV game show of Let's Make a Deal - do I pick door #1, door # 2, or door #3? It really does feel like somewhat of a crapshoot with these drugs.

But I'm approaching the anastrozole with a positive attitude. I've already been taking calcium, Vit D3, and magnesium; now I thought I'd add a glucosamine / MSM tablet. And why not have a little fun with it too . . . I read some of the past posts and saw ruthbru's recipe for gin raisins to help with joint pain. So I just mixed my first batch of the white raisins and gin in a big mason jar and will wait the 10 days before trying. I'm sure it would have been amusing for experienced gin drinkers to have watched me try my first sip of gin (always got to sample the ingredients you know). Forget the raisins - the gin alone would make me forget about pain. I'm a red wine drinker but that seems like child's play compared to the gin.

I'm hoping for a minimum of side effects, but am so glad that I'll have the advice of experienced people here if I end up having problems or just need some support.

PontiacPeggy

You're a better woman than me, Manu14. Can't manage gin. But the red wine works very well. I've been on anastrozole for over 3 months now and everything is fine. No new aches and pains, just the normal creakiness of being 69. I'm only taking fosamax and vitamin D. Well, folic acid too, since I gather it is good for those of us still drinking (and I don't plan on quitting). Do think positive. Most of us don't have problems, remember that! HUGS! And welcome!

proudtospin

manu, you made me laugh on the gin!  I never tried Ruth's recipe but think my taste reaction would be similar.  You can do it, really! I just finished 5 years on what I like to call the DANG PILL!  it is over, did cheat a couple of times but just start the count down

Puffin2014

welcome Manu, I've been on anastrozole for 2 1/2 months, main issue has been some sleep problems - waking up frequently, but usually am able to get back to sleep fairly easily. Just miss the days when my head hit the pillow and my eyes didn't open till morning. I've taken calcium, Vit D3 and glucosamine with MSM for years.

Manu14

Thanks for the welcome and encouragement Peggy and proudtospin and puffin. I'm curious about the folic acid you take Peggy. I don't know what it really is or how it helps if you drink wine, but maybe I should look into since I'm not going to give up red wine entirely.

PontiacPeggy

Manu, I read about the folic acid in Dr Love's Breast Book. I take 400 mcg once a day. Dr Love isn't a fan of drinking. I AM a fan. I don't drink a lot but I want my glass of wine with dinner. I figured that folic acid was easy enough to do and if it helps, fine. I won't hurt.

jojo2373

Manu we are starting at the same time, let's hope for good results!

Manu14

Thanks for the info on folic acid, Peggy. I'll look for some at the drug store tomorrow; because like you, on most nights I enjoy a glass of wine with dinner. I've made some good changes to my eating, but you just can't take all the joy out of our meals, right?

jojo, good to have another person taking the first step at the same time. I've decided to take the anastrozole at night time just because that's when I took the tamoxifen. I haven't heard if there is any recommendation if taking it with food helps or not; or if it's just an individual thing. We'll definitely have to compare notes as the week goes along.

PontiacPeggy

Manu14, I take my anastrozole in the morning. I heard some of the ladies mention that it caused sleep problems so figured morning would work. I haven't had any sleep problems at all. I take it right after breakfast with my other pills. This works for me. Experiment to find what works best for you.

Miminiemi

This question may have been addressed already, but there isn't a great way to search through all the posts. My gynecologist has recommended Premarin to ease painful intercourse caused by Arimidex and menopause. I know this is controversial but am wondering if anyone has good info about how much this decreases the effectiveness of the Arimidex or increases risk, etc. He acknowledges the oncologist would not be thrilled, but thought it would be very effective for the problem of painful intercourse. My choice.

I thought I would use it for the three months until my follow-up with gynecologist and oncologist. Then decide if it is worth continuing. Anyone with experience?

lago

My oncologist would not support me taking Premarin if I needed it.

intothewoods2

Hi all...anyone experience hair loss with Arimidex?

BrooksideVT

My oncologist OK'd estrace cream. As it is applied, and it absorbed, locally (which is where you need it, no?), very little enters your system.

Yes, hair thinning right here! When I first went on this drug, it lasted a couple of months, then evened off. In hopes that it would help joint issues, I switched to exemestane for a while, and the hair loss was worse than it had ever been on arimidex. I'm now back on drug #1 and it's starting up again, but not as bad. Nobody but me can tell my hair is a little thinner.

RhodyMMM

Puffin, I found the yoga videos on Amazon. We got a one-month trial membership to Amazon Prime where you can stream videos for free....I created a watch list so I can have a variety. The free membership expired yesterday and I will continue it so I can keep getting the videos and some other benefits. We don't shop on Amazon to justify a membership just for free shipping, but I think between the videos and the music it will be worth it for us.

Martha

Redheaded1

I don/'t like Gin either, but there's a bottle in the back of the fridge after I mixed up my raisins.  the raisins are actually pretty tasty, so I guess they take the edge of the gin.

Gin tastes like aftershave (not that I've tasted that)......

Redheaded1

Mimineimi--don't do it without talking to your ONC first. .   The instructions with the Arimidex tells you not to combine it with any estrogen products, and it may list that one.  I just don't use any, so I don't have the insert anymore.

ruthbru

My DH is a raisin/gin convert. He just said again last night how much it has helped his knees! I don't taste the gin (or aftershave) when I eat the raisins either.

sugarplum

Well, after 8 years I must reluctantly bid goodbye to Arimidex. My spine has finally crept so close to osteoporosis that it just doesn't make sense to continue the deterioration (after 6 annual infusions of Reclast, we've determined it's no longer able to stave off the bone loss). My onc has suggested a switch to Tamoxifen which really scares me - not just dealing with a whole new side effect profile, but also the knowledge that my current drug is more effective at preventing recurrence.

I have an onc appt on February 6th to get the prescription - they are recommending a 3-week break before starting the Tamoxifen (NO drugs?Another scary thought!).

There are just too many unknowns in this journey...

Julie

Terri0202

hi all. Just diagnosed 11/13/14. I am just in my second month of anastrozole. I am scheduled for 4 more months of neo-adjuvant prior to my masectomy on my left breast, and have the choice of masectomy on right or lumpectomy. I am bilateral, invasive lobular carcinoma (ER/PR+, HER2-) 48 and had no idea until I felt a flutter in my armpit this past fall. Left is toast. - tinker toys is a fabulous analogy - right is deep and small - only detected on MRI. Gosaralin + anastrozole is my treatment until surgery + radiation. Words of advice? I can't seem to find much on ILC experience since it is not as common as IDC ... I'm a busty gal. The girls have been a big part of my life. I'm having a hard time wrapping my head around waking up to find them gone...

Moderators

Hi Terri,

We're so sorry to hear about your recent diagnosis but really glad you found us and decided to post.

Others will be along soon with advice and support. You might like to check out the ILC Forum too.

Keep posting and keeping us updated on how you're getting on with treatment.

Big hugs from us (the mods)

Chloesmom

Welcome Terri. So sorry you have had to find us. I has diagnosed 11/21, but saw the tumor on the Mammo on 11/14, so am still trying to get my head on straight after the whiplash of finding out this diagnosis.

The doctor started me on the medicine right away but when I saw the oncologist she said it takes about 3 months to fully work. I had my BMX as soon as they could schedule as the tumor became painful over the month of November. It wasn't as big a deal as I expected. On the mend now. gentle hugs!