For Arimidex (Anastrozole) users, new, past, and ongoing
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Here is my experience with Anastrozole. Maybe it will help some:
I have been taking it for 18 months. The side effects I've experienced have been: some dry skin, some lower leg cramps, constipation and dehydration. My oncologist told me all of these were cause by Anastrozole drying me out. Apparently it dries some people out more than others.
In my case, the problems were resolved by increasing my water intake. Yes it actually was as simple as that. Let me elaborate on that or a second - I was never a water-drinker. Sure, if I work in my yard and get hot and sweaty I would drink a bottle of water. But I have never been a person who drinks water all throughout the day. I just hated the taste. Pre-anastrozole days I was drinking maybe 1/2 to 1 bottle of water a day (some days, no water). But post-anastrozole after all of these drying-out symptoms appeared, my oncologist had me increase my water intake to 4 bottles a day. For me that was a challenge due to the taste, and I had to build up to it slowly, but I finally got there. I live in Georgia where it's extremely humid in the summer. But I love working outside in my yard. Because anastrozole dries me out, working in the yard in the heat/humidity on top of anastrozole drying me out is what set off the dehydration (per the Dr). For that, my oncologist had me start using something called "Drip Drop Hydration". So in the summer I was using it twice a day. It's a flavored powder that you pour in a bottle of water and shake it up then drink. (If you are experiencing any dehydration while on anastrozole, you may want to check this product out. My family doctor likes this product also and told me she has recommended it to many of her patients who have outside occupations (like roofers, landscapers, etc) because of its rehydration abilities.)
My oncologist gives me a "vacation" from anastrozole every 3 months. I get 2 weeks off of the meds. He believes the body needs a break to "restart".
The way he started me on the drug from the beginning - and I have to do it each time I come back off my "vacation" as well - is this: I take a pill on the start day, then 3 days later take the next, then 2 days later the next, then 1 day later the next, and then continue on with the daily regime. He is a big believer in building the body up slowly to the drug.
He gives me a Prolia shot every 6 months and I take 500mg calcium 2x/day and 2000 i.u. of D3 2x/day. I have been on this regime since day 1 of using anastrozole. He says this is to protect my bones from the damage anastrozole can sometimes cause. I had to get a bone density scan for a baseline before I started anastrozole and then 2 yrs later a follow-up will be done to see how things are going.
As for generics, my pharmacy rotates constantly back and forth between the Accord manufacturer and the Teva manufacturer. I see no difference between the two with respect to side effects.
I had some weight gain from the steroids during chemo. Anastrozole seemed (in my view anyway) to have been hampering my ability to get rid of that weight. So I went to see a nutritionist. She put me on a high protein, low carb diet and I was able to whittle away that excess weight (it took about 5 months). I have stayed on that diet plan to help me at least maintain my weight and to be frank I have felt better physically than I have in years, since getting on this diet.
My oncologist said he wants me to stay on Anastrozole for 10years. I have read so many articles that say after 5 yrs there really is no benefit to stay on it. At this point in time, I am shooting for a 5yr plan (in my mind), yet I am honestly terrified to stop taking it and sometimes I think I want to be on it for the rest of my life, even if that is 50yrs! Then other times I want to jump off the anastrozole ship and go back to my "normal" life. But the cancer fear keeps me marching forward and staying the course on this 'new normal'.
Just wanted to share what my experience has been, in hopes the info may help you in your walk with Anastrozole.
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marleigh I have the same experience with hydrating. Drinking 2-3 quarts of water a day makes me feel better, and any day I don't drink enough, I have more joint aching, constipation, and generally just don't feel quite right. I drink regular water, all day long. As you describe, for me, too, Anastrozole has made it harder for me to lose the (also because of steroids!) weight I'd gained (terrible chemo lung inflammation reaction!) I lost 12 pounds by carefully eating high protein low carb (and almost no simple carbs), and I have to stick to this way of eating to maintain weight.
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ML, I am in Nashville area also. Before I got BC, I lost about 40 pounds on the LT360 program. It was not a cheap program, but it keeps my blood sugar and lipids in a good range even two years into Anastrozole. I’m insulin resistant and diabetes runs in the family. I took metformin and cholesterol meds before I started LT360.
It’s about health, not weight loss. It stresses hydration, moderate exercise, higher protein and low added sugar, losing body fat and building muscle. It is not Keto or super low carb, so I found it easy to sustain. I’ve stayed true to the eating program. I need to get back to regular exercise to stop my weight from creeping up.
I’m not trying to sell you the program, but provide an idea of eating plans that might help your glucose levels
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Just chiming in to say thanks to all of you for posting what has (and hasn't) worked for you. I'm a little over a year into an AI and my biggest complaint is the fatigue. That said, I know I'm a little dried out, but I feel like I drink coffee/tea throughout the day and water at the gym and yes, I'm another one who's not crazy about the taste of water. It would take a real effort to add water during the day, but it is a new year! I'll just add that I have arthritis in both knees and hips but my joints are really doing pretty well. I attribute that mostly to going to the gym regularly. Re: weight, I've been intermittent fasting for about 3-1/2 years and have cut out most simple carbohydrates. I know I gained weight through chemo but was surprised to hear from my MO's nurse in November that I'd lost 11 pounds since January. I guess something's working!
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Another suggestion for hydration is flavored seltzers. I drink a lot of water but use them for a "change up." Gatoraide now has low calorie drinks in different flavors which I take when I play golf. Caffinated beverages usually add to dehydration, not help.
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Pepsi has one I like, called bubbly. I like the lemon flavor. Don’t think it has artificial sweetener or other junky stuff.
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I gave up diet sodas about 6 years ago. I'm hooked on flavored seltzer, no calories and no artificial sweeteners. Polar Seltzer, Cranberry Lime is my favorite, but Blueberry or a lemonade mixed one is just as good. Easier to by in upstate NY, but here in FL I've found them at Winn Dixie. Keep hydrating!
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This may seem odd, but I just discovered that I was weakly ER+. I had been a Tamoxifen for six months and now Arimidex for 18months. I was having a 3 month follow-up and asked the question what % ER+ I was. Anyone here taking anti-hormones who are also weakly ER+? Thanks for chiming in
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well I’m a little upset today. I have been noticing that my hair, very front, is thin. My hair was growing really slow but now with thinning it’s very upsetting. I’m the first to admit I am vane and just can’t deal with this - just the next step in this cancer crap show. Is there anything other have heard we can do, rogaine for women?
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Humblepeace YES, I'm weakly ER+ something like 12% (% ER + receptors on tumor, as seen on path. report), and YET, it is a huge thing in my best statistical outcome to be on my AI... Alas....As in, with Grade 3, I need all the weaponry possible, more or less is how my MO candidly described my TX for best possible outcome...
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My dermatologist said rogaine May help, but I would have to use it forever. I wasn’t willing to commit to that. Another dermatologist showed me his bald spot. I thought if he didn’t think it would work, I’m not going to try it. Some say biotene helps. I don’t know. Never tried it. I just wear this hat.
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blue girl
Im confused. Where is the recent tumor? You said they did scans. 2019. Then lymph pt said it wouldn't help till tumor was removed. Is it in your arm? Or lymphoma?
Im curious as Ive been having trouble with my right ear lately and off and on the past year theres fluid but no infection but my glands swollen
Normally it comes and goes but this time its been almost a month and antibiotics arent working and im nervous
I had 3 positive nodes Out of 29 removed on my right side in 2017 .. Im going to an EMT in 2 weeks
Also on the record take the real arimidex. Major aches in every joint. But movement and exercise helps
Still Petrified to take meds for osteopenia
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Hello to all - I have been following and have relied on this site since my DX 2/12/15 but have never commented. I decided to get "active" after my last appt with MO. I am desperate for any ideas and information any of you may have.....
Quick summary: DX, surgery, rad, Tamoxifen (almost 4 years) until complete hysterectomy 2/19 (uterine thickness, uterine biopsies, cysts, etc) then switched to Anastrozole. Took it for 6 months and the joint pain started, as well as weight issues and the sudden urges to cry. I am not typically one to just start crying but wow....it happened. The joint pain sent me for a loop so I told MO and was switched to Exemestane. I have never in my life experienced anything like this....I am to the point of needing a cane! Every joint in my body (except my elbows) throb in pain and I have developed two trigger fingers in my left hand. My husband says that I moan at night in pain and sometimes the pain wakes me up. Neuro has ordered a nerve conduction in my left arm bc my hand/fingers are numb/tingle all during the day/night. I do take Neurontin for what was thought to be neuropathy in my left leg but after all of this, I am wondering if it's just the AI.
MO switched me back to Tamoxifen 12/23 bc he saw the shape I was in. Since I was DX at 41, I am supposed to take meds for 10 years. I will be a hopeless mess by then if not sooner!
Thanks for all of the posts for the last 5 years.....I look forward to actually "joining" now!
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arm1278--See if the Tamoxifen ends up being better for you. I had a total hysterectomy 2 years into my Tamoxifen and my BS and MO suggested I stay on it. They said the little bit of improvement in recurrence odds probably wasn't worth the increased SEs from an AI. I did ok on Tamoxifen thanks to turmeric, ginger, magnesium glycinate, lots of water and regular exercise. They both felt why rock the boat. Now that is for me. It may not apply to you but it's worth looking into. I did 5 years on Tamoxifen and the BCI test showed no benefit from continuing so now it's up to exercise and diet which so far seem to be working (knock on wood). I think you have to take the medicine that works best for you that you will actually continue to take.
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Spookiesmom - where did you get that hat? I want one in several colors. I have one that says "bad hair day" but yours is definitely cooler. My hair came back pretty well after chemo but has definitely thinned, particularly at the crown, on femora. I am building quite a hat collection and am comfortable with this. I have a good wig but wear it seldom. Like my hats better. I take biotin and use nioxin hair products but don't really think either has helped much.
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Hahahaha. I'd seen a similar hat on Cafe Press, but it had the barfing emoji on it. 🤮🤮. Didn't like that, so went to a local place here, told them what I wanted. Was only $10, thought that was fair price.
Put a screen shot on for you.
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I have been taking biotin for years and can't say that it has helped very much with hair loss. I had problems with hair loss long before my bc dx due to hypothyroidism and bad genes. I started taking collagen powder about 6 months ago because I was afraid the Arimidex would make the hair problem worse. I have less hair falling out now than I have in a long time, despite being thrown into menopause. Purely anecdotal, but it may be worth a shot. There was discussion on another a thread about whether or not collagen was safe to take, so it may be something to discuss with your MO. It seems to be working for me anyway. Time will tell.
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Same place did this one for me 7 years ago for my first time around with chemo. Yeah, I know, pink. Was my choice, would pick a different color now.
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Dear arm1278,
Welcome to the BCO community. It sounds like you have been around for awhile but just reaching out to post for the first time. We are glad that you did. We hope that you get the support and information that you need to make the decisions that are right for you. We look forward to seeing you get connected here. Let us know if there is anything we can do to help you navigate your way around the boards.
The Mods
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I have been on Tamoxifen for the past year plus while my MO assures I am post-menopausal. Her plan is to switch me to Anastrazole in the near future. What adjustment period should be expected before side effects emerge or dissipate? I want to be mentally prepared because I had many intolerable months when I start tamoxifen.
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Cali58 - I'm glad that the brand name is working better for you. I wish I could remember who/where I saw the post about buying it from the manufacturer rather than insurance. I would like to send that person a thousand hugs.
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Ingerep - tired of water? Things that might help, or at least they help me.
dice/grate some fresh ginger,simmer a couple of minutes , drink warm in winter. I'll have try cooling for the summer.
"Hint" (brand name) water. Unsweetened non-carbonated, very lightly flavored water
numerous non-caffeine teas. I prefer the less sweety/fruity ones but do like the Tulsi relax or sleep, as well as some of the turmeric ones.
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I have the same symptoms you describe from Anastrozole. I get very stiff after sitting and when I first get out of bed. I'm trying to figure out a solution and have spoken with a few nurses about it so far on the phone and they tried to help me but really could not. I had started taking the pill in the morning but it was making me dizzy until I ate something. Then I started taking it at night, right before bedtime. I have stiffness any time I sit for bit and then get up. And a lot of stiffness when I first get out of bed in the morning. Also pain and stiffness all over when I lay down at night to try and fall asleep. I've read a few of the posts here and people are saying exercise helps with the pain and stiffness. I have tried it and it did help by about 40% less pain and stiffness. I really don't like exercising so I have to push myself to do it. I have a job where I sit 60% out of an 8 hour day working on a computer all day, 40 hours a week. When I get home at night I don't sit around too much really. I do housekeeping, cooking, shopping, etc. and then I take walks here and there for exercise. My live in boyfriend does not understand and he is self-absorbed so he can't really help me. My oncologist team has not been helpful with managing side effects of the medication. I have been fired from 6 jobs in 2 1/2 years since my cancer treatments have begun. And my boyfriend, doctors or family don't care or understand.
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Oh GIG - you really have a full plate. Please keep coming here to get some support. I take my femora first thing in the morning with other pills but keep experimenting about time. Maybe with breakfast. Try to do a few stretches before you get out of bed. Being in one position for a long time is certainly bad for many of us. That's why mornings are hard. Can you stand or stretch or walk for a few minutes each hour while working? Walk during lunch hour. Many YWCA's have special programs for cancer patients. You would get some emotional support as well as motivation to exercise. Hydration is also very important.
I also need to focus on the fact that I'm not Wonder Woman. If your live-in isn't giving you the help you need, evaluate what absolutely needs to be done. No one is coming in to do a white glove house inspection. If he runs out of clean clothes, it's his problem, not yours. If there's nothing he likes in the refrigerator, he can shop. Try to take care of yourself first. I also suspect that you aren't getting enough rest which makes focusing at work harder.
Keep coming here. Women on his thread have been there too.
Taco
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GIG How long have you been taking your AI? If you feel comfortable sharing your DX, TX information, that would help us support you most accurately. Go to My Profile, and put your settings "public" so that your info shows up below your post.
I echo Taco's supportive words. This is hard stuff, and this place is a safe location to vent and to get support.
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GIG - find room for exercise/stretching, even if you need to break it up into several segments to fit it in. I know it makes me feel better even on days when I feel lousy, and I usually feel worse if I do not do something. Are you able to take short walks in/around the building every hour or two? You could set a timer on smarthone to chime when it is time to get of the chair and away from the computer. Are you able to do chair exercises? Find time for yourself , especially if your partner is unable to offer support. Leave him on the couch, find a quiet space, and do some simple stretching or take a walk. Check to see if there is a LIVESTRONG program near you, they will work with you to customize a program to your specific needs and goals. There might be community/adult ED classes if a gym is not an option. Start easy and then work up to more if you feel like it. I enjoy Qigong and Tai Chi classes when I can get to them. I also work out regularly or at least take Koda The Dog for a walk every day. Acupuncture might offer some relief from stiffness/pain/stress/anxiety. It helps me, but is not a substitute for exercise/stretching. I am also having trouble with motivation. Ibrance zaps my energy and Arimidex (brand name) is causing stiffness in one hand and a trigger finger in the same hand. At first the brand name seemed to be with minimal SEs compared to the generics. I think it still has fewer SEs, but the stiffness is discouraging. I think the turmeric (both as supplement and added to food) helps.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. Trigger finger seemed to be getting better, but now 4/2019 seems worse, is it the break from added turmeric to meals?
Swelling in R-arm, opposite side from where lymph nodes removed. Noticed 6/18/2019. Could have been swelling earlier but wearing long sleeves. Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. Started seeing lymphatic therapist 7/2/2019. Stopped seeing lymphatic therapist early October. She did not think it would help until tumor removed/chemo'd/radiated into oblivion.
8/2019 CT, Breast/chest , neck/thyroid ultra sound
9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for)
9/29/2019 PET scan, no indication of spread. Arimidex and Ibrance prescribed to shrink tumor prior to surgery.
10/2019 – Stopped Tamoxifen. Started Arimidex and Ibrance. Brand name Arimidex so far does not seem to have the SEs that generics did, but stiff/trigger finger on left middle finger returned.
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GIG, for your stiffness, try REGULAR (not "D") Claritin. It seems to help for some unknown reason. You won't be perfect but it could improve your mornings. I'm sorry that there are so many stressors in your life right now. They certainly don't help in your healing.
As others have requested, please make your diagnoses and treatments PUBLIC. That is so helpful when we try to help you. These will then appear at the bottom of every post you make.
HUGS!
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I just started Arimidex a week ago. So far, so good. (Altho, given that i am still recovering from radiation fatigue and i have a killerdiller cold, the SEs would have to beimpressive for me to be able to tell.). So, when do the side effects usually kick in? Is there a better time to take AIs? Thanks
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I had a lot of back and joint pain (especially in the hips). My MO decided to take me off the anastrozole for a while to see if my pain improved, and we were going to switch to something else. During my next appt I told him I was still hurting quite a bit so he ordered some mri's to rule out mets. Turns out my pain was not from the anastrozole (though it sure didn't help) but from mild stenosis, impingement in one hip, a torn hamstring in the other hip, torn labrums in both hips, among other things. I was referred to an orthopedic doctor.
I just wanted to share that because I wonder how many other sources of pain mentioned on this board are caused by something else but blamed on the anastrozole. My MO said that getting off the anastrozole *should* make the pain better, so if your pain is unmanageable with exercise (in my case exercise made it worse) it might be worth checking to see what else could be wrong. I am very thankful to have an MO who took my complaints seriously.
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