For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
-
I had to request my Vit D levels be checked. Sure enough I was low. I now take calcium with vitamin D and a separate Vitamin D3 - 2000iu daily along with multiple vitamin, biotin, fish oil and Vit B. I've been taking calcium/Vit D supplements for years. Was glad to have my D levels checked as living up north I was pretty sure it would be low and it was. I think 'they' are realizing a low D level can contribute to many conditions.
Today again some back pain. Seems to come and go. Lessens the more I can move about so got up early and cleaned the whole darn house. Always feel better when surroundings are clean. Good weekend to all!
0 -
Ditto Sherry on everything you said...especially the clean surroundings - don't forget "the sunshine", it makes every day seem better...
0 -
Going to see the endocrinologist in 3 weeks and will talk to her about the prolia shot. Thanks for the heads up.
0 -
Hi ladies. I just wanted to join your group because I started Arimidex 3 days ago. I am eager to learn all about it. Thanks in advance. Healing hugs.
0 -
I'm glad to find this thread! I had my 2 year Dexa scan in Feb and found a 14% loss in my spine. Other areas were more like 5% losses. I was perfectly normal at my baseline 2 years ago before starting anastrazole. I saw my Onc a couple of weeks ago and he said I need Prolia every 6 months. Does anyone know if you take that until the Dexa returns to normal? Is that possible? I'm only 46 and need my bones for a long time! My PCP said to take Caltrate and vit D, but if I go on a bisphosphonate, I will be on it "the rest of my life". Can anyone explain that statement?
0 -
shells I would discuss this with your doctor. Since it looks like in a couple of years I might have to go on this stuff too I know I would be asking the same questions. From what I have read staying on these drugs for a long time can actually make your bones brittle. I know after 5 years or so on the drug I would want to take a break for a couple of years so my bones don't get brittle.
0 -
I started fosomax 5 years ago due to osteopenia from parathyroid disease where it sucks the calcium out of your bones and throws it into your blood. I shoud be stopping it for a year but the endocrinologist said due to my situation and taking arimidex she wants me to wait one more year to take a break from it.
0 -
Iago, I did do a bone sensity scan. In fact, I have been doing one every two years for about the last ten years or more (don't remember), and the condition has deteriorated over the years so that it is now full fledged osteoporosis in one hip. I have been taking 1000 mg calcium+D daily as well as Fossomax or its generic equivalent, and I also took Evista before that. I am sure that taking the above has slowed down the degeneration of the spine and hips. Last time I was at my onc end of December. I showed her my latest results, and she said we'll stay on top of it. I started Arimidex and now AL since end of July12 after 5 years of Tamoxifen. I just made an appointment with an orthopedic surgeon who specializes in the hand, to see what can be done about the numbness. It's a little like damned if you do (take Arimidex) and damned if you don't. I don't want to make a choice yet. I like my onc and trust her, so I want to discuss this issue when I see her end of June. Now a dumb question (I don't live in the US after all) - what does PCP stand for?
0 -
Dassi PCP is primary care physician. Everybody has different health issue so what might be good for me could be very bad for you. That's why I always say ask your doctor… and if you don't trust your doctor find one that you do trust. We on this site are all strangers. Take our advice as something to discuss with your doctor, not as advice. In your case I can totally understand why they won't want you to go off the bone building drugs. Still something to bring up though about the brittle bone issue.
0 -
Wondering as I am, have been, osteopenic for many years. Last dexa scan prior to beginning anastrozole had my spine at 84%. Now on als for 6 months, concerned if the als coupled with osteopenic condition may be causing my back pain? What is prolia shot for and how frequently does one get it? I will be discussing all this with onc when I see him on 4/18.
0 -
My onc told me that since I have went from osteopenic to osteoporosis I have more choices with the prolia shot once every 6 months or IV once a year which I picked the shot and will continue that as long as my Insurance approves. It is very expensive. My insurance has to approve it for this month or I will go on the pill you take once a week.
Nancy
0 -
Sherryh my bone loss was the greatest after chemo/chemopause. I'm not losing that much on Anastrozole but I do exercise, D, Calcium etc. my spine is currently 76% but waws 84% before chemo/chemopause/Anastrozole. The thing is last year my spine was 76% as well. So I didn't lose anything on my 2nd year on Anastrozole. I'm still osteopenic and as long as I am I'm going to do everything I can to avoid those drugs. Strength training… and I'm not talking about lifting major weight either. I'm only using 7 & 10lb weights. Started with 2, then 3, then 5. And of course power walking (and sometimes elliptical)
0 -
I don't think they give the IV bone strengthening drug here that fast. Someone just told me she gets it because her osteoporosis is so bad that regular medication is insufficient. She gets an IV once a month as far as I know. I didn't ask the name of the drug. Nobody here offered anything else to me other than Alendronate (or Fossomax at 4x the price).
I had also heard that weight training is very good for bone building. Now I have Lymphedema in my right hand and can't lift very much because I must be careful with it. For those of you who didn't get LE after surgery or radiation, be aware that you must be careful with any physical exercise - and not overtax your arm/hand/trunk. Build up slowly and read the Lymphedema forum, so that you don't get any (very) unpleasant surprises. Exercise is important but it has to be done with foresight for anyone at risk for lymphedema. Please don't think you won't get it if you are long after surgery or treatment. Mine developed 21 years later! A doctor had my wrist bandaged because of tendinitis. LE developed within 24 hours, and stupid me who knew about no IVs or BP hadn't realized that the hand is just as much at risk as the arm. And most doctors know almost zero about LE & don't recognize it if it stares them in the face, so do not trust them! In fact, I recommend that all of you read some of the LE forum to get an idea how to be careful. There is also a special site: www.stepup-speakout.org that gives a wealth of information.
I know I sound "fanatic" on the subject but if this information can spare anyone the condition, I've done my job. For those who don't know, LE is often painful, very unpleasant and usually a lifelong condition that must be treated 24/7.
So yes, go for that exercise but be aware!
0 -
dassi52 I do have LE in my left arm (10 nodes). Officially diagnosed after tx4 but I had my suspicions earlier in chemo treatment. You are correct about working up slowly and if you feel any heaviness you should stop. I'm up to using 7 & 10 lb weights but my left is weaker than my right… but I'm a righty so that might have something to do with it too.
I wear a sleeve every day. I don't have much discomfort although early on it was a bit annoying. Not everyone gets bad pain once under control. Exercise is actually good for LE because it gets your circulation moving… but has to be done correctly.
My concern is my right arm that had only 4 nodes. My LE MD says that the risk really goes up if you've had more than 5 nodes. The jury is still out on if I should wear a sleeve on that arm when flying or exercising. I actually do. I haven't had any sticks yet in that arm but now with my port gone (this past November) I know that I will eventually need a blood draw. No one will do it from my foot. On occasion I also get BP on that arm when the reading on my ankle is much to high. So far no problems.
0 -
Just saw this post and it has some great info. My mom was initially put on Anastrozole in 3/2011 and stayed on it until 8/2011. The Anastrozole caused severe diarreha, so she switched to Letrozole in 8/2011. She was only only Letrozole for 2-3 months because she developed an issue with severe pain in her pinky finger and thumb (same hand). Came off Letrozole and onto Exemestane in 11/2011, but developed diarreha, hand pain, and depression. So in 2/2012 she made the decision to go off all hormone therapy. It's interesting that many of you report the joint, hand, feet pain with these meds. That's certainly what my mom experienced.
Her bone density test and bone scan in 10/2011 showed slight osteopenia, so she has been taking a Calcium with Vitamin D supplement since then. She was taking it daily, but due to high Vitamin D in 2/2013, she is now taking this every other day.
PET scan in 8/2011 and bone scan in 10/2011 showed NED, and her tumor markers remain okay, so for now it's no meds except the Calcium with Vitamin D supplement.
0 -
OK, Iago, I really think it is great that you can do all that weight lifting with the arm and all. By me it's my right hand only, not the arm although I wore a sleeve for flying. However, it's my right hand and I am a righty so that makes the lifting a lot harder, and I am scared that it will creep up in my arm. And yes, I had sentinel nodes removed on the left side and a BMX, so I know what you mean about being scared that the other side might get affected. I also have other issues with the right hand that still needs fixing with an OT. That hand can't do a lot of things and it has been frustrating to say the least. I think that is why I felt that the latest carpal tunnel SEs just were too much already. I am blaming AL of course, but maybe the medication is not what caused it??? (I think it did but I would only know for sure if I stop the meds and see what happens.) Bottomline, as I wrote in an earlier post, I will wait and talk to the onc. Sorry for griping...
0 -
dassi my onc basically diagnosed my LE and said to work out… that's it. I trust my onc but for cancer treatment not for LE. When it started to get a little worse I contacted my PS. He said me to an LE MD because he doesn't deal with it either. Initially I did PT. Had to do it again after exchange. PT gave me some exercises to do on my own. Granted I don't do those any more. I'm way beyond that. It took time for me to get to 7 & 10lbs weights. I started with cans of beans… they are only 1lbs and worked my way up.
0 -
Just started back on this drug this morning. This will be my 4th try with an AI. Have discovered that some of the pain I thought was the AI may be a flare of my fibro. that just won't quit. Too much emotional turmoil and stress. Hoping I can take it, at least for a while. pp729 - my experience has been a lot like your Mom's but with mostly pain, fatique and depression issues. If I get really, really down again, I'll have to stop taking it. Again - hard to tell what is the AI and what is due to other factors.
0 -
What study have you signed up for? I am in a clinical trial testing fish oil vs placebo. I believe I am on the placebo as I don't have any relief from the pain and stiffness. Have the same problem with my hands, knees, some hip pain and feet pain (thankfully no loss of hair). Lots of fatigue and stiffness. Walking and strength workouts seem to keep me going. Since I'm in this trial I don't take anything for pain.
0 -
Thanks to all for your comments and info. I can't stress enough how much I treasure this site and the information we all share. You have all been a great help to me and I can't express my sincere thanks. The experiences and knowledge we share here is invaluable. THANK YOU ALL!
0 -
Sherry I love this site too and know that I can always get a ton of good information here. All experiences are different, and of course we need to follow the advice of our doctors. Still we can get so much advice here and shared experiences which helps so much.
I am having a steroid epidural injection Thursday for this relentless neck pain. I had disc fusion surgery last fall, and although my range of motion increased as a result, the pain is getting increasingly worse. It is so bad now I am just deeply frustrated as it totally affects mt quality of life. If the injection does not give me any relief, it is off with the Arimidex for awhile. I have to know if that is the culprit. If it is I will have to discuss my options with my MO. I want to complete the five years but it has only been 17 months so I have a way to go.
mybee I sure can relate. If I take a break and my pain subsides, then I will have to make some difficult choices. Quality of life matters. I have never let anything slow me down but this joint pain is terrible. I do walk, move around, try to stay busy. My neck is so bad doing normal activities is difficult. Just trying to chop up veggies is a chore and one time the pain was so bad I burst into tears! I am pretty tough but enough is enough sometimes. I do know that if taking a break eases this pain that I cannot do this for another almost 4 years. Sometimes we all have to make choices that are tough. Hang in there!
0 -
Justmejanis, I do hope you get some relief from the epidural steroid. I, too, had disc removal/fusion surgery (C4-C5) several years ago, after horrendous pain and numbness in my fingers. My side-to-side mobility is still somewhat limited but, thank goodness, no pain in the neck, which is a relief since every other bone in my body hurts from the Arimidex.
I had epidural steroids 3 times a year for herniated L5, and it was the only thing that gave me relief. The procedure was no fun, but that was before I had BC. In retrospect, it was a walk in the park.
Still no word from Vanderbilt. Every day I hope for a phone call. In fact, I even dreamed that they called. I answered the phone and said, "Thank goodness!"
Take care.
0 -
Wave thanks so much for your reply! I am so hoping this injection helps. The nurse from the surgical center called yesterday to collect some basic information and instructions. She said that one injection may not give me the relief I hope for, but I can come back and get another one. She said sometimes it takes up to three to get some relief. At this point I would be happy with one pain free day! This is just no way to live. I can't say this is from the Arimidex just yet. However I will take a break from it if the joint pain continues.
I too hope that I get a call for the study. I am really happy that someone is actually doing a study on this subject. This joint pain is real, and I had none before Arimidex. Well, my neck, but was so hoping the surgery woud correct that. The joint pain remains my major problem right now.
Hugs sista!
0 -
Janis, when do you go in for your epidural steroid? Let us know how you feel afterwards. I made an appointment with my MO for later this month -- earliest I could get in -- to talk about my overall joint pain, specifically the shoulder. It's so bad now that I have trouble holding the arm up on the steering wheel and have trouble hanging clothes up. I want to know if it's just from the "A" or whether something is torn.
0 -
Just finished my last chemo two weeks ago so started the Anastrozole last night. I take Prozac for hot flashes and insomnia. Had a hysterectomy in October of 2011 but my estrogen level was still at 98%! I decided to take it at night along with calcium and Vitamin D.
Need to catch up on everyone's posts (53 pages!) Will be interested to see what happens to me if anything!
0 -
Anyone think there is any difference between using Arimidex or the generic Anastrozole????? I have read some things that generics are not always as effective. Guess I will ask my onc. next week. Now 3 weeks on Arimidex. The sweating only lasted the first week....nothing else yet. Trouble sleeping but not sure that is a SE of this.
0 -
schoolmom both the hot sweats and sleep issues can be SE from Anastrozole/Arimidex. My NP told me to take the pill in the morning so I don't have sleep issues. As far as it not working. Well, if you have SE then it sounds like it's sucking your estrogen and doing what is supposed to do. As far as preventing recurrence, that was never 100%.
There are 2 companies that make the generic. One is from India and the other is Teva from Israel (Teva makes a lot of generics). I know that Costco, where I get my Anastrozole stocks the one from India in the store. I prefer Teva from Israel. Just trust Israel a bit better in terms of not having issues with bootleg fake drugs. So I have Costco order it specifically from Teva. Takes 24 hours. I believe Walgreens also sells the Teva brand.
0 -
Wave, I had the steroid injection yesterday. The procedure went well, the hardest part was the nurse could not get the IV in the back of my hand and oh that hurt! She brought a different nurse to do it, she put it in the inside elbow with no problem. I have a big bruise on my hand. My neck feels so much better this morning it is amazing. This is the first day in months I have not had to take a pain pill. Happy dance! I have no idea how long it will last. They said it could be a matter of days to months. I vote months! I do have a bit of a headache but they told me to expect that. It is far from severe so I can handle it.
Welcome Steveda, happy you found your way here. You will learn a lot.
Lago my Anastrazole comes from Accord Health. I am not sure where it is located.
0 -
justmejanis, just call and ask
0 -
lago I tried to Google, and did come up with addresses here in the U.S. I guess in the long run I am not too worried about it. Until I read it here I wasn't aware there were multiple manufacturers. Interesting for sure though.
0
