For Arimidex (Anastrozole) users, new, past, and ongoing
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I just recently got a Fitbit and find it a motivaror to keep moving, get my water in (blah), and get some cardio in throughout the week. I have been on my anastrozle for 3 1/2 months with subtle SE, I too will take it as long as my MO prescribers it and my body tolerates it! It's been good to hear from all who have been on it for the 5 years to know it's do able! Thanks for the encouragement it's really helpful! How often have you had your hormone levels checked?
DX IDC left 8/14/18, <1cm, stage 1A, grade 3, 0/2 nodes, surgery- lumpectomy with reconstruction/IORT, right with reduction
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Everyone is different. I took it for six months and couldn't use my thumbs and my hands were very stiff as well as my joints. I moved like an old woman. My doctor and I discussed the pros and cons and decided my limited risk wasn't worth the quality of life issues. I stopped taking it. Good luck.
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ive been on it 7 years. My hands are stiff and my joints ache. But i also have arthritis, so who knows if it would go away if I stop. My onco is ok with it if i want to continue with it. As long as i can, i will. My cancer was found in 2011, and the tumor processed as Triple +. This was befire the BCI was developed, so I really dont know if it would help. But, My Mom, and 4 of her sisters, as well as her Mom passed from BC. So I want to take it as long as I can.
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So sorry for your cancer history - my Mom died of BC and my sister and I were dx one yer apart. I am taking anastrazole (1 & 1/2 years) and dealing with it - exercise really helps and I can ignore the aches and pains so they must not be too severe.
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I have 7 more months to go on Arimidex. I now have osteoporosis and take Prolia every 6 months. My next Dexascan is next Friday. We will see if it has made a difference. The first few months on Arimidex my bones ached terribly but I toughed it out for a few months and then they disappeared. I am hoping some of my hair follicles grow back.
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finally got my dexaresults. Not much change after 2 years off Arimidex 1 year off tamoxifen. Spine improved a little hips a little worse. Was told to continue 1200 calcium and 5000 D3 daily.
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Laguna, I have until mid-October to complete my 5 years on anastrozole. I take Fosamax. I have had very few SEs. I have lost some hair but so did my grandmother thus I can't definitively say it was the anastrozole. My MO wants to me to quit at 5 years saying my DX and Oncotype plus having mild osteopenia all indicate 5 years is enough. If he said 10, I'd do that. But I trust him completely. My next Dexascan is Monday.
Spookie, interesting that your spine improved and your hips declined. Guess I'd have expected both to be in sync. How are you feeling?
HUGS!
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Wierd I know. Except for the ca scare I’m in right now, feeling pretty good. You?
Have a suspicious lump on the non ca side. PET/ct confirmed last week, MO wants a biopsy. Will see my BS, then set surgery date. I stay busy, and out of dark places. Not happy, nothing I can do but get it checked out.
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Spookie, Yikes! Hopefully, it will be nothing but best to find out for sure. Please let me know when you know something! Holding you tightly.
I'm doing very well. Having a cancerous-pre-cancerous spot taken off my lip Tuesday. Had one in nearly the same place last year only my then-PCP's PA said it was a cold sore. At 72 I'm getting my first cold sore and it doesn't even look like one? Right. After getting my diagnosis, I called and complained. This year, I've gotten a new PCP who is a NP and I love her. I did like my old PCP but he just didn't seem attentive enough. New gal is terrific. And since I won't have my MO for much longer, I need someone good!
HUGS!
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Oh Spookie my prayers!! Hopefully its a benign bugger!
But its scary ..
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Hi All, thanks for the replies, so hard to decide but interesting to hear what you are all up to. No they don't do the BCI test here, at least they didn't 5 years ago when I had my op.
If I stop taking it and I stop getting hot flushes, I will know there are hormones in my bloodstream again and that will freak me out but the hot flushes are wearing me out....
I also have a chek2 gene mutation so not sure if I should be taking that into account too.
Its scary !
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GerryM--The BCI test is relatively new but regardless they don't do it until you hit your 5 year mark anyway. It's done on the tumor removed during your surgery which hospitals keep. It's a great test to do to at least give you more information to work with when making treatment decisions. Two oncologists have told me that it's very accurate, like to within about .005%!!
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I had the BCI test right after my surgery. I wonder if they will do it again at 5 years?
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Snickers, I also had the test right after diagnosis. I do not see the point of having it again since it is done on the original tumor. I believe my oncologist didn’t know that much about the test when he ordered it so soon. I had mentioned it after reading about it here and he just went ahead and ordered it without me knowing. It caused me a lot of anxiety as I had a low Oncotype, but a high risk of recurrence on the BCI. I think it is best given after 5 years, although it did influence my adherence to taking the pill every day and not giving up despite the foot and leg pain at the beginning. Btw, the score also states the benefit of continuing the AI, and mine said high benefit. If it didn’t, I would definitely stop after 5 years.0
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I have a very low risk of recurrence (under 5%) but he said they will look at it again at the end of 5 years. I know (unless things change) he's going to tell me to stop the AI at 5 years but I honestly think I might want to continue it. My SE haven't been all that bad so I'd rather just take it for as long as I can.
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My wife has just started Anastrozole. How long do side effects last? All 5 years? Does it take food taste different?
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Lovegolf: For me, side effects have been stable for 3 months: some joint stiffness and my fingers fall asleep sometimes. Food tastes normal. Side effects in many cases get better after a few weeks or months. The side effects are mostly a function of less estrogen in the body. However, in some cases, they're a reaction to something extra (fillers, etc.) compounded in the medication. If you read this forum, there are discussions of different brands being slightly different on how people respond, and everyone's different on how AI's affect them. Look at the Doing Well on Aromatase Inhibitors for some positive perspective.
AI for 5 years (possibly longer depending on research that's ongoing) lowers my recurrence risk by 50%, and my Grade 3 tumor needs aggressive treatment, so I'm committed to this medication.
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I have 6 more months to go on Arimidex. August 7 is my last pill. My doc is very comfortable with this. 5 years ago I had those aches and pains and hot flashes. They are gone but my hair really thinned. Hopefully it will grow again. I feel really good and hopeful.
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Thanks for information.
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Hi all! I'm just updating on my thumb killing me. On 3/1 I'll be on Anestrozole for a year, and feared a possible bone issue.
Saw the orthopaedic surgeon who specializes in hands. He only had to put pressure & feel my thumb wrist area to know what it was. He said its a tendon injury from lifting 15-18# and using the thumb to help lift it. Bell went off in my head - I injured it when I was working out! Squats, grab 20# dumbell, rise up as I lift it over my head. I had no pain when I did it, woke next day and it was killing me.
Got a cortisone shot, and a brace to wear at night when I sleep and when I work out. If I'm in pain again he says he does surgery, and said its a surgery that works to eliminate the problem. Not wanting that but glad he knew it has nothing to do with Anestrozole use.
Have a great week ladies!
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Hi There. Well, this is a new forum for me. I thought I would be in radiation forum until yesterday, but my Dr's told me they don't think I need radiation which was the original plan, because after meeting with them, they thought my tumor too small, (7mm) and clear nodes, and the plan is to just go on Arimidex after I have my bone scan tomorrow. My question is, have any of you thought you were going to have radiation, and then the Dr's changed their mind. I'm not upset about not having to go thru radiation mind you, actually relieved. But wondering if this has ever happened to anyone. They say I need to be on it for 10 years. Thanks in advance.
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Hi suzy, Have you thought about getting a second opinion? I had a small low grade low oncotype IDC tumor and was told the standard of care was radiation for lumpectomy plus AI.
I also wanted to ask if anyone could advise me regarding anastrozole: I had pretty mild SEs during radiation which I completed dec 31. I’m 3 weeks into my anastrozole prescription and have terrible fatigue and low mood. I was fine until 2 days ago. Also weird things going on with bowels ( sorry about the tmi) Does this sound typical? Thanks
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Suzie, that seems very unusual to me having you skip radiation. In fact, I don't recall anyone with an Lx not having radiation. My IDC was less than 9mm and I had radiation. I definitely think you should consider a second opinion. Five to 10 years seems to be the norm. My MO says 5 is more than enough for me and I'm done this October.
Sherry, I suspect that you are finally having a reaction to all you have been through. Of course, anastrozole can cause lots of SEs but often when the "worst" is over, we relax and realize how much has happened and changed for us since our diagnosis. Nothing is the same. Never will we take for granted our lives. I have had virtually no SEs from anastrozole. See how things progress. And give yourself some slack - the diagnosis itself causes stress let alone surgery and radiation. You will eventually find your new normal which is likely not the same as before all this occurred.
HUGS!
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Thank you Cherry and Peggy. I definitely will get second opinion. I appreciate your comments
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Hey Cherry,
Have only taken 6 arimidex but they most definitely bring on the fatigue as well as a headache and a sense of being heavy. The doctors promise that side effects will get better after several weeks. That seems like a long time from now but I will carry on.
Good luck with the bowel stuff, maybe run that by your regular doctor? If it's constipation my doc said it's ok to take a colase every day for an indefinite period of time. It's basically oil and shouldn't interfere with your AI.
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When I was first diagnosed and did not have genetic results yet, my original game plan was lumpectomy. I was offered a clinical trial which was no radiation and enhanced screening. Once genetic results were back, that option was off the table andI had bilateral mastectomy. The RO said the clinical trial was for stage 1, ER+, HER2-, no lymph node involvement as I recall.
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Cherry- when I first started anastrozole right after radiation, I had those symptoms plus brain fog. Over time they disappeared - I did start taking COQ10 which may or may not have helped, but all those SE went away except hair thinning, which stabilized and in part could be from getting older. Have occasional joint or bone pain which clears with exercise which I now do 6 time a week (see exercise thread). I did have more emotional reactions to BC in year 2 after all was over, though I see that as separate from SE. Best of luck!
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Cherry, I started anastrozole right after radiation too, and I was flat out exhausted. I was also fine during radiation, exhaustion kicked in afterward. I think it may have been from radiation more than anastrozole. I'm 8 weeks post radiation and starting to have more energy during the day, although still feel more tired in the evenings and hard to get out of bed most mornings. I read somewhere that every month you're in cancer treatment, it takes a month to get back to your prior energy levels! That was an eye opener for me, even if it's not quite right I'm doing my best to adjust expectations. I was in treatment 11 months, so that means by November 2019 I should be feeling like I have energy and vitality again. I have found it very hard to have patience with how long all this takes and how long we don't feel well, but I do think anastrozle might be the least of it.
As for moods, some of that could also be completing "active treatment" -- I had a long talk with my therapist yesterday about how for many of us, this is one of the hardest times for anxiety (my problem) and probably depression too. I did have pretty wild mood swings (anger, crying, etc.) when I first started Lupron but Anastrozole (which I added in 2 months later) didn't seem to kick that back into gear at all.
One other thought, maybe experiment with time of day you take the pill? I take it in the morning because I heard some folks on the boards say it disturbed their sleep to take it at night.
In any case, hope you turn a corner soon.
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Cherry, I started anastrozole right after radiation as well but I had done so well during radiation, that I didn't consider that my later fatigue and aches and pains might be a delayed response to radiation. Then I started having all the symptoms you've mentioned and I discussed them with my very empathetic nurse practitioner. She prescribed a 2-week "vacation" from it, so we could sort out what SEs were related to which treatment. While I was off, I started to feel better and recognized that some of my pain and muscle aches were because I'd begun ramping up my exercise (weights, swimming, yoga). Since I've been back on anastrozole, I have not had the same symptoms or fatigue. I am back to 6-7 days of workouts per week and only feel some early morning aches in my hands and feet. Another close BC friend has had the same experience after a medical "vacation." Her MO told her sometimes the body just needs to hit the "reset" button.
You have options you can discuss with your MO, like taking a break or trying a different AI (or a different manufacturer of anastrozole). The statistics for my tumor (ILC) are vastly improved by the AI, so I'm going to persist in taking it. And I'll do just a short commercial here for exercise, ANY exercise you can do. In my experience, it's been the antidote to just about everything I've experienced with this stoopid disease.
Like most things BC, improvements can take time. I wish you loads of patience.
Mindy
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Cherry - I too had SE such as being argumentative over nothing, kind of knowing it, but unable to control it. Mood swings, brain fog, and a few others. They dissipated over time. So my input is just to give it time, if 4-6 months out its still like that, you could ask to switch AI drugs.
PS- I think my BMs were off too. It also cleared up on its own.
Best of luck!
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