For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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I am so sorry, that is rotten!!!
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Yes lago, you have a lot on your plate. {{{HUGS}}} floating all around you. When you need one just reach out, a little higher and to the left, and grab one from the air!
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lago, it is just not right that you have to deal with those things at this time. All I can do is send you a wave from Texas...one with hugs!!!
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With all the horrible side effects kicking my butt, Onc took me off Anastrozole (Arimidex) for 3 weeks. Many of my symptoms subsided. About the third week, I started to feel better, my bones ache less, the cold symptom lessons, still had swollen glands but was feeling way better. I even got my Mojo back--couldn't believe it when I started getting a libido again .Hadn't felt much down there in ages. Went out shopping and back to church while I was feeling good. It was a difference between night and day. Well now that I am being treated for osteoarthritis-started with prednisone then-had steroid shots in my knees; the Onc has put me back on the Arimidex. Started back on the 20th of March-- today almost two weeks later-- I am noticing the same old symptoms--leg bones and joints hurting, exhaustion, depression, small swollen glands--hard to swallow (seems like my throat narrows--can't get my large pills down without a lot of water). I first started last year in April--just hope I can make if for 4 more years. These SEs are kicking my butt. It was three weeks of reprieve while off. Now back on--let me tell anyone that Arimidex is a serious med with serious SEs for some of us. I'm staying on it because I just don't want to go through the trial of trying others--not knowing what those SEs would be. Don't let anyone tell you it is just in your mind!
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Thought you all might enjoy a laugh. My vision just didn't seem as good today. Just found things burry all day and wondered if I was now entering the side effect zone. Upon going to bed I discovered I'd been wearing an old pair with similar frames all day.
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Ha! Nice to have something with a simple (and easily remedied) explanation!!
dwill, have you tried one of the other Als? If not, insist to your doctor that you switch! Some people who have tons of trouble on one, do much better on another. If you have tried them all with no improvement, then maybe tamoxifin would be a better option for you. You should not have to be so miserable!!
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Dwill I agree with ruthbru. A friend of mine went through 3 different AIs before she found one she could tolerate. On Femera she was going up stairs but sitting on them and sliding up backwards... that's how stiff. But she did finally find one that was OK.
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I also agree. I had a horrible year on Arimidex, could not get up from a chair without help, felt like an 80-year-old, had claw hands, etc. I thought I was destined to live that half-life for 4 more years, but my MO said I should not have to suffer like that. I went off Arimidex for 6 weeks as a test and did feel better. Then the MO switched me to Aromasin. I was a little scared: Would I change one set of bad SE for another set?? Happily, Aromasin has been MUCH gentler on my body and all those bad SE went away. I feel almost normal for the first time in 3 years. Different women react differently to each AI. Don't hesitate to switch!!
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Has anyone had mouth issues while on arimidex? I've always had a perfect check up with my dentist but yesterday got freaked out when they found this stuff called lichen plenus (even the name is creepy); basically a rash in my mouth. I found that others on these boards had problems with this stuff after going on arimidex. The stuff isn't supposed to be cancerous but then I read another link where it said it can indicate higher incidence for oral cancer in the future. Since my late husband died of oral cancer in 1996 I'm considerably concerned. They want me to go to an oral surgeon to get it checked out.
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Anybody heard of taking only half a pill daily? On another thread regarding Tamoxifen, someone is doing that without SE. I asked my MO about that and of course, there is no data. Looking for your thoughts!
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Claire, I have had "black tongue" lately, which is also creepy. I read its a reaction to meds. I am taking a anti-depressant so could be that. Taking more time to brush my tongue, yuk! I do not think its a big deal, just gross.
Lost boob, I think 1/2 is better than nothing, depending on your risk of recurrence. I would never consider it, as my risk is high.
Dwill, I would try another AI, I agree with this advice. Is there any data out there that says one is any better than another?
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Holeinone I would really ask a professional about a 1/2 dose. It could be ineffective at that dose. In theory sure it sounds like you would get 1/2 the protection but I don't think drugs work that way. As you know if you don't take all your antibiotic or too low a dose you can actually make it harder to get rid of the infection.
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Lago, I agree...I was surprised Lost, MO did not say NO....I should not of even suggested that, bad advice.
If the benefit is only 1 or 2%, it would be very difficult to stay on a med that made you hurt for 5 years. I want to stay on Arimidex for 10 years, hopefully my situation stays NED, but I am very aware of my odds.
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Thanks for your advice. My MO said there was no study on it. I just say on the Tamoxifen forum someone was taking a 1/2 and wondered about Arimidex.
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I have a question for you gals on arimidex.. I have my appt. with dr to have mammo and follow up April 21st. I saw MO of course a year ago after surgery and again last August, but now on my appt. schedule I do not see her again. I was afraid that was an oversite so I called and she was gone for a week but her nurse looked in my chart and said there was no need for me to see her. I am doing ok on the med but just assumed that I would see her until my 5 years are up. This is at Mayo Clinic so I assume they know what they are doing but just found it a bit odd.. not that I want to see another dr but want to make sure. Nurse said if I needed to see her fine, but that the breast dr. would refill prescriptions, etc. just passed a year on dx and April 16th a year after surgery, well thanks in advance for any input you wise gals may have.
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I saw my oncologist every three months for the first year, and twice a year for the next four years (along with having an annual physical with my GP). I still the see my oncologist once a year, and don't know if I ever DON'T see him... after 10 years? I think if that is how Mayo does it, it is very odd indeed.
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Same here. MO every 3 months for first 2 years and then every 6 months up until now, my fifth year. He gave me the scripts for the Arimidex and mammos. I saw my BS only once after surgery and then she turned me over to MO. I called her a couple of weeks ago to find out if I should come in for a check since I'm probably finishing up with AI next week and the nurse said 'why, are you having a problem. If not you don't need to see her'. I expect my MO next week will tell me we are going to only an annual from now on.
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Ndgirl, I have the same follow up schedule as ruthbru and I expect to have an oncology follow up annually for the rest of my life. I will see my BS and RO after every mammo for a minimum of 2 years. Seems weird that you will be followed by a "breast doctor". I'm not sure I know what that specialty is...maybe they are qualified?
MsP
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I assumed I'd see the MO for the next 10 years, now my PCP says he can handle the port flush, blood draws, etc. will save me some $$.
The BS had said he'd follow me for 5. I don't know why, and don't really want to go.
Feel like I'm adrift at sea.
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I never saw the surgeon after the follow up visit. I saw the radiologist when I saw the oncologist every 3 months for the first two years. There sure doesn't seem to be a 'standard of after-care', does there!
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I get Cure magazine, it's all about cancer related news. The most recent issue says that by 2015, all cancer hospitals, centers who want to remain certified MUST have standards of care for patients and survivors.
Can't come soon enough!
Oh, the mag. Is free
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Lago and ruthbru, I'm afraid to change Al--just don't want to go through unknown SEs. If they get really bad again on Anastrozole, I'll look into a change.
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ndgirl, went to have my routine cleaning and my dentist noticed a papilloma in the bottom of my mouth last week. I have an appointment to go have it checked out on April 8th. Wonder what's that is all about. I got enough stuff going on with the hot flashes, vaginal dryness, night sweats, osteoarthritis, swollen throat and glands, cold like symptoms every day, aching bones and joints--so much to deal with!!!. Maybe I should consider changing AL's.
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If you have given it a year and still feel rotten, then I think it would be worth considering anyway. Let us know what you find out about the mouth!
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ndgirl 1st year I saw my onc every 3 months. Then I saw someone (my onc and BS switch off) every 6 months. I mostly see my onc's NP but she does come in. Most people don't continue to see the BS and see the onc every 6 months. After 5 years I will see someone every year (either onc or BS) till I get to 10 years but I'm thinking of telling my onc I dont' want to see the BS anymore and just follow up more often with her. My BS is retiring so I don't see why I should be seeing a BS I never saw before.
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I read an article tonight I already knew and also heard after my diagnosis in 2010. The article listed well-known practices to help reduce risk of recurrence in breast cancer. I never drank alcohol or smoked, so okay there. However, I have gained 15-20 pounds on both Femara and then Arimidex (stable weight over 4 years, but have to diet now to keep it there). I have one year left to take it. I WAS an ideal body weight my whole life without dieting -- until I took the AIs.
I'm very sedentary because I suffer from a near 15-year history of severely chronic migraines. Luckily, I see an esteemed migraine specialist, but there has been no improvement after trying *everything* you can imagine. The migraines are a physical stressor as well, I'm sure.
This article also reminded me about a healthy, well-balanced diet. I do eat ONLY organic foods and low-fat food, but because of my migraines I don't eat the traditional fruits and vegetables as much as recommended. I can do that, but will have to make more of an attempt to add more into my diet.
So, I'm really MAD at MYSELF and Arimidex tonight because I've failed at 15-20 pounds over my ideal weight of what I assume is 125 (I'm 5'4-1/2" tall), although my MD and MO have never said anything. I take after my Mom and she also was always thin without dieting until she passed away. I know metabolism decreases with age, but also feel the extra 15-20 pounds wouldn't be an issue if I wasn't on Arimidex because of my genetic makeup and nervous energy.
I'm 4 years past diagnosis, but am so frustrated I didn't follow each one of those wise recommendations. Is Arimidex (which causes me to have depression, fatigue, weight gain and other problems) then somewhat counter-productive?
How bad is my weight gain and lack of exercise? The severe and chronic migraines (about 3 a week only partially resolved with migraine Rx) make it quite a challenge to exercise. The only "exercise" I get is light housework. I'm lucky, though, to have a full gym in the home. Would treadmill and swimming be enough?
I'm blessed to be able to take Arimidex, but saddened to hear in *some* women the body fights against it and does produce more estrogen ... and also sad I've let myself down on weight, exercise, fruits and veggies. How bad is this? For what it's worth, I had a complete hysterectomy several years before my BC dx, but don't I still produce some estrogen through my pituitary gland and extra 15-20 pounds? I wonder if many of the side effects have negated what's best for my health. My MO said I can stop Arimidex (she has many patients who do), but would prefer I stay on for my last year and I personally agree.
I apologize for the long message, but am so frustrated at myself and need encouragement.
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Thanks ladies, I am now wondering if because I did not have to have chemo or rads and having few if any side effects on the med if that is the reason I wont see MO, but you can be sure I will ask when I am there and get to the bottom of it just to ease my "inquiring" mind. Yes, the doctors I see are very qualified in breast cancer, that is all they see in that part of Mayo, so am comfortable there. I will post after my appointment and share the results. Thanks again.
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Exercise is the most important non-medical thing we can do for ourselves to reduce recurrence risk (much more important than your actual weight). Whatever exercise you will stitch to is good. Swimming is good, walking is better because you are pounding your bones, which is what you want to do to help keep them strong. Add some light weights and toning. Would it help to get an exercise buddy and schedule times to exercise together? Would going out and taking a fun class (like Zumba) class get you more motivated than doing things at home? I check in everyday here on the "Lets Post Our Daily Exercise' thread on the fitness forum. You are sure welcome to come over there. It's great accountability and really nice ladies. I also check in on the 'Wednesday Weigh In' thread (eating too much is my downfall, so I have lost the same 5 pounds over and over again....sigh!)
You have been through a rough time. Don't beat yourself up for what you did or didn't do so far. It isn't productive, nor does it change anything. What you can do, is start right now. Have smaller goals.....try to lose 5 pounds instead of 20. Set up an exercise routine that is doable for you, and then commit to it. (I keep a weekly exercise notebook, I break it up into 15 minute segments and check them off as I do them. I need cues and rewards!).
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ByFaith I too have put on the weight (about 10) but still not considered a problem by my MDs. I'm 5'6" .... OK really just shrunk due to the new diagnosis of osteoperosis so 5'5" but I still wear a size 8 so no doctor is going to complain. I do feel the Arimidex and chemopause have done this to me. It's been about 2.5 lbs a year. Can't get it off. A friend of mine told me when she got off it last year she lost 5 but she is pretty thin to begin with. You and I have 2 more years.
I agree with Ruth about exercise BUT if you are osteopenic check with a doctor before you do any high impact or weight training. I found out that all those crunches I've been doing probably have made small breaks in my spine and that's why I lost 1/2" in height. I was also doing a bit of jogging which is also a no no. Also my rheumatologist doesn't want me lifting over 5lbs over my head (was doing 7-10lbs in each hand).
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I agree with Ruth on her thoughts. So many things we can not control but some form of exercise, we can control that. I also find the gym (could never keep up with doing things on home machines but that is me..) is a great antidepressant! Keeps my spirits up. I get to talk with others as we all are trying to stay motivated.
Regarding the followups, my BS told me at the beginning when I complained about having to keep seeing her, she said she would be following me forever! Now though, I only see her after my mamo and if any problems, she reads the mamo and determines if biopsy or stuff needed. My onco, she just released me to once a year and she gave me the script for my mamo this time as I used to get them from the BS. My BS was recently made the head of one breast center at her hospital so not easy to get into her. My onco sees me herself so that makes me feel good.
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