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

Spookiesmom

that too, Proud!!!!!

208sandy

Yes, to switching MOs - unless they are on an AI don't know how they can tell us how we feel - might be helpful if they'd read the literature too. I had knife like pain in my knees on both Femara and Arimidex but not on Aromasin and not now that I am off all three - also have arthritis in my hips but it's not the same pain as when on AIs and yes I had pain in my hands, ankles and feet as well - all pains gone except for hip pain.

Pbrain

Redheaded, I'm sleeping like a teenager these days. On weekends, since I'm single and no one wants me up for anything, I can sleep until 3 in the afternoon. I honestly struggle with the question--is it depression or Arimidex? And I'm coming to believe it is this drug. There are so many days I wake up happy and ready to go (once I've had coffee) but then a few days a month I just call in sick and crawl back to bed. I think it is normal.

And to all of your struggling with this class of drugs, many hugs. I was in essence, crippled, by month 5 but by month 8 I was back to my old self except for the lingering side effects from chemo.

PontiacPeggy

Pbrain, don't you wonder how chemo effects the SEs we might get from the AIs? I didn't have chemo so I can't speak to that. I don't know how long the aftereffects of chemo linger in the body. Pretty amazing how you "healed" from the effects of Arimidex. That's wonderful. HUGS!

lago

Pbrain it took my 3 years to realize it was Anastrozole. I increasingly got more negative and depressed over that period of time. I never felt depression before, not even when I was first diagnosed or going through chemo. I took that break and noticed a difference in days. Don't ignore this. It's no way to live. Try a different AI or get something for the depression.

PontiacPeggy

That's excellent advice, Lago!

cwayman650

Hi. Just wondered about the gin/raisin recipe and what is supposed to do? Having joint issues myself.

Redheaded1

PBrain thanks---I don't think its depression because I am upbeat most of the time and I think maybe Pontiac Peg is on to something abut the chemo connection to when we get Arimidex side effects.  I didn't do chemo, and had only very slight symptoms of SE when I started, but now I am 8 mos in and the stiffness and pain is beginning....is it from the Arimidex, or is because I am doing a new exercise class, or is it something entirely unrelated.....who knows.

But yes, being single, if I didn't have to worry about my Dad's care, I could probably sleep till 3pm once a week.  (if Esmerelda the  cat would let me)

It is very encouraging to see that once you are off, it goes away.

lbrewer

I didn't see any difference switching to the tea brand. I asked my doctor about alternating with tamo instead of just taking a break. He says many women take AI breaks but no one has ever suggesting staying on tamo during those breaks. He thought it was a great idea. Tamo is good for bones and cholesterol. He gave me a prescription and said have at it! Seeing a dr about a lymph node transfer this week.

IamNancy

cwayman650 - the gin soaked raisins is for joint pain and arthritis.. many say it really helps.  

Bren58

For me, it was the Arimidex that caused the depression. After a year I switched to Aromasin, but that didn't help. I have tried anti-depressants in the past and I don't tolerate them well. I have now been off AI's for 3 1/2 months and can't believe what a difference it has made. I am a different person! Much happier, more joy, less snappy and irritable. When I look back at that year plus, I don't think I was a very nice person to live with. While I don't advocate going off the AI's for anyone else, for me it was the right decision for now. But I will revisit it with my MO at my spring appt. For the rest of you who are struggling with depression/anxiety many hugs, it's a rough road.

Redheaded1

What is a lymph node transfer?

lago

I had the same issue as Bren. I chose to stay on the Exemestane (Aromasin) and ago the anti-depressant route. I only have a little more than 1 year on the AI so I figured for a year why not. Of course with all meds you can get SE. I now have tinnitus from it in my left ear all the time. 1% change of that happening but it's better than dealing with that funky emotional crap.

Manu14

lbrewer - I continue to be surprised as how much differing information we all seem to get from our medical oncologists. Mine told me that there needs to be a minimum of two weeks of no medication when switching from one hormone therapy to another - and even longer if you're stopping the first one due to toxic effects. He also said it takes at least a month before the drug you're starting begins to have any real effect. All in all, I think there are a lot of unknowns in all of this.

stage1

Switching from an AI to Tamox, seems okay, but I don't think going back and forth to take breaks, makes sense, as the meds work in different ways. I would ask a pharmacist.

GG27

Ibrewer, there seems to be serious interactions between anastrozole & tamoxifen. When I changed from tamoxifen to anastrozole my MO insisted that I take 2 weeks off before starting my new meds. GG

StrongEnough

My MO told me that there is no literature showing that it is okay to take a vacation from an AI, and that if I ever switch between AI's, I would switch from one day to the next with no break.

Indeed, every doc comes at this from a different direction!

scraps

hi! My sister has been on arimidex for 5 years and her dr is talking about transitioning her to tamoxifen in about 6 months due to osteopenia setting in. She actually would like to stay on the arimidex longer. Has anyone done that? Any advice to offer? She is just 46 with kids still at home. Ex of stage 3 breast cancer at her first mammogram. Both breasts removed and full hysterectomy along with extensive chemo and radiation. Other than that she is super healthy

lago

I had osteopenia before chemo at age 49. Got worse after chemo (put me in chemopause) and 5 months on Anastrozole but still osteopenic. 3 years on Anastrozole I was diagnose with osteoperosis in spine. Now doing Prolia shot. I'm older than your sister so I can understand the concern and why they are considering Tamoxifen switch. She should ask, if she wants to stay on the AI if using one of the bone strengtheners is an option. I tried Fosomax first but it gave me reflux so that's why I do Prolia.

Redheaded1

i'd also want to see about addressing the bone issue with Fosamax or one of the other drugs that work to build bone/stop loss.  Otherwise, she could consult with another MO to see what they say about switching to the Tami.  46 is young to be experiencing bone loss with or without the drug being a factor. Good Luck to her with this.  Let us know what works out!

dunesleeper

Hoping to hear about the lymph node transplant. I have never heard of that until reading it here today.

Puffin2014

Had pain in the joints of my left hand that woke me up during the night, now this morning it's mainly the joints of my middle finger. Trying to think if I did something yesterday that would have stressed my hand or if this is the next side effect of my anastrozole.

PontiacPeggy

Puffin, when did you start anastrozole? It isn't on your profile.

lago

Here is an MD that does lymph node transfer. There aren't a lot of MDs that do this. They only do this in the most severe cases. Remember if they remove some nodes from one place you risk getting LE there too. linky

Bren58

Here is another link about lymph node transfer from University of Pennsylvania Hospital

http://news.pennmedicine.org/inside/2013/05/a-new-...

Puffin2014

Peggy, thanks, somehow that part of my profile got marked as private. I started anastrosole on Nov 10.

PontiacPeggy

Puffin, it's so hard to remember to turn that on. Thanks!

LizzyinMI

I'm curious if anyone has had issues with vertigo while on Arimidex.  I know dizziness can be a side effect.  Ten days ago I had extreme dizziness with vomiting - was flat in bed for three days thinking I had some flu bug.  I finally went to my PCP a week ago and was diagnosed with positional vertigo caused by a virus infection.  I got a script for the infection and was much better within a day but the vertigo hasn't completely gone away.  I'm still a little dizzy and unsteady on my feet and my eyes kind of track off when I'm looking at something.  A very disconcerting feeling.  I really don't think it's the Arimidex but after diagnosis and treatment it seems everything that doesn't feels right anymore is scarier and must somehow be related to the cancer and/or treatment.

Spookiesmom

I think we all have a tendency to blame any unknown ache or symptom on ca. It IS scarey! I've read here the general rule is, if it lasts 2 weeks, get it checked out.

As for dizzy, I get it a little. I ordered new glasses, thought maybe it was the old ones. New ones came, still a bit dizzy. Nothing bad though. Maybe it is the darn pill. Check with your doc, maybe change AI

proudtospin

had a bought of vertigo about 2  years ago while on aromasin, it lasted about 2 weeks and the dang docs sent me to a neurologist to see if I had brain cancer~~not!  I saw a bunch of docs with no absolute answer as to the cause but since I battle sinus issues, my vote is it was a sinus infection

yeah, balance has never been the same since and I work at it at the gym

never thought to blame the AL