Doing Well on Aromatase Inhibitors (AIs)
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hiking lady, I take claritin along with my arimidex. It helped with joint pain from neulasta with chemo so I just continued. I never take ibuprofen so maybe throwing that in later in the day will help. That's when I have most of my joint pain because my day is winding down and I'm less active.
I was going to start a new topic but this is probably the right thread to ask anyway. I'd like to hear from any of you runners that have been on an AI for awhile. Has anyone done any 5ks 10ks or half marathons since you have been on an AI for awhile? I know I have a 10k in me and will sign up for April. However, I'm wondering how I will feel after given how I feel now once I slow down. I'd love to hear from you. I guess i could be like Forrest Gump sign up for the 5k then just run home!! lol . I'd love to hear any experiences, thank you deb
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I took a 2-1/2 month break from anastrazole this Fall. My prescription just renewed, and I'll restart next week. I was interested to see if the aches (hips, knees, wrist/thumbs) I've been having the past year would subside, but they didn't, so I can't attribute them to the AI. I guess I'm just getting old.
And time to follow up with another doctor to find out why I'm hurting. I know some of it is osteoarthritis, but I suspect my back is really causing the hip pain and a partially torn meniscus is part of the right knee problem. OTC pain relievers helped for a while but they don't do much now. My left hip is especially painful at night—can't turn over in bed without sitting up.
My back trouble showed up a long time ago when I had my first PET/CT scan. Some compressed vertebrae were noted then, so I think they are the culprits causing my hip pain. I have associated that pain with my hips but it's not the bones (xrays last winter showed no problem), so I'm leaning towards nerve impingement or something like that. None of my doctors (PCP or MO) have had anything to say about my complaints so I think it's time to find the right specialist.
Anyway, what this all comes down to is we'd like to blame medications for what we assume are side effects, but it could be other things causing pain or stiffness.
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DebAl - regarding your running question. Go for it. I started AI in April 2017; switched to aromasin in June 2017. Prior to breast cancer, I was a pretty steady 55 min-ish 10K and 2-2:05 half marathoner. The regular restarts from cancer treatment combined with less desire to focus on speed have interrupted my racing goals. I ran/walk (I think I ran 10 min, walked 1 min) a half marathon in Oct 2017 with a 2:20 finish so slower but I knew that. At that time I was 13 months post mastectomy, 10 months post last chemo and 6+ months post last radiation. I had DIEP in December 2017 with a second, simpler surgery in July 2018 -> no racing last year in part because I didn't feel like it (there are other factors that I won't go into here). I am currently training for a half (end of March) with a 2:10-2:15 goal. I don't think AI has really impacted my running; it's been the stop and restarts plus personal things outside of cancer. Some women are driven to prove something through racing after a cancer diagnosis and treatment, I'm just not one of them. Put a race on your calendar and just see what happens.
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DebAl - I am 66 - broke my foot in 2016 and BC in 2017, starting AI's sept of 2017. I kept at it and won my division in a 5k in 2018 ! I find that the more I do the better I feel overall. Yes, there are aches and pains, but the movement really help. There's another thread about posts your daily exercise that's motivating as well. Also incorporate weights and strength training.
Good luck!
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I agree Deb - go for it! I've been on for about 9 months, as mentioned in an earlier post. I don't run races (although I did plod through a neighborhood fundraiser 5K in September) but I do run on the softball field. That includes regular practice and tournament play (I'm on a 60 and over travel team). At 62 I generally can't tell if my aches and pains are from aging or the meds, but I don't think they are any worse due to the meds. I also completed a hike to the bottom of the Grand Canyon and back carrying a 35 pound pack while on the AIs and there were no more problems than for anyone else in the group.
I'm curious about Claritin. I've heard it mentioned in other threads. It sounds like it can remediate some of the aches and pains. I wonder why that is? Has anyone asked their doc? That's so interesting.
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Debal, check out the exercise thread, there are a number of runners there that may be able to help u
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Deb, sign up and do it. You will be fine. As 2FUN suggests, come over to the exercise threads. I know there are some threads devoted to running. I hang out on the 'Lets Post Our Daily Exercise' thread, and there are lots of ladies doing every sort of exercise (including running). Many of them are, or have been, on AIs and have done fine (including me).
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Thank you all so so much for your advice and encouragement. I will definitely pop in over on the exercise threads. Bear with me for one more post.
I've done 2 marathons in under 5 hrs, halfs are 2:05-2:20..too pretty in San Fran not to stop and take a few pics lol. I've never been one to care about time, just finish. Mostly 5-10ks for my resume. Fastest ever for any race was 5 mile in 40 min flat. Those days are over.
I will take everyone's advice and go for it! I know I can get through it. I've come to the conclusion it's the fear factor. Fear of pounding the pavement on a med that's known for crumbling your bones. Fear of the recovery. I kid you not. I'm 55. I feel 40 all day but 70 in the evenings lately. Been on the AI 7 months. I'm switching manufacturers this month. Its time to try. Maybe it's the inactive ingredients. Keeping moving is not a problem. On days I work plus exercise I'm 17-20,000 steps a day. I also need to account for normal aches and pains I would have had anyway.
I'm just chicken to go outside I guess. I did 5 miles on treadmill running 2 today but it's just different and easier on the joints. Guess it's time to step back out of my comfort zone.
Thank you all again for reading. If any of you switched manufacturers and noticed a difference let me know. I'm definitely not bad enough to switch meds or quit. Just wondering if there is room for improvement. As for the claritin..its the anti histamine that helps with the bone pain. I understood the mechanism while on neulasta shots but it's one of those things that I kept doing because I didn't want to stop and find out otherwise.
Thank you all for your responses. Sincerely, the chicken lol
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Thanks to all for sharing thoughts on exercise and fitness, and for discussing how AI's affect these goals.
I have no bone pain on Anastrozole, so I never thought of trying Claritin (which did help with the Neulasta pain during chemo). I do have joint stiffness, especially if I'm in one position for a long time. NSAIDs help. Since I have arthritis anyway, I take Meloxicam (24 hr duration) when it's bad, and Ibuprofen or Naproxen/Aleve when it's less bad. I've been off NSAIDS right now for 2 weeks because I just had my implant-exchange surgery 4 days ago. Although I have stiffness, I have no pain, and inflammation doesn't seem horrible, so I'm fine right now taking nothing for it. My hands randomly fall asleep a lot when they are immobile, which is mildly annoying, and this is certainly an AI side-effect, but I can live with it. I also feel that AI's age me horribly, but once I'm moving around and the stiffness goes away, I feel 61 again and not 91, so I'm adjusting and dealing okay with these issues.
As for bone fragility, I had a DEXA scan before starting AI, and because I was seen to already have osteopenia, I am getting the Zometa infusions every so many months (every six months, I think...). I am 61. I am hopeful that this counteracts the loss in bone density that's associated with AI's; we'll know in a year or two when I get another bone density scan, of course. Meanwhile, weight-bearing exercise is also a good way to lay on bone, so I wish you good success, DebAL, on continuing to do the fitness activities you enjoy. Running is the total best for that, of course! EEEK, you're right, a fracture sounds terrifying, so I empathize with this fear!
I can't run (bad knees), but I pursue fitness all other possible ways, including mat-work or Pilates exercises, biking, skiing, swimming, walking, and 45-60 min 3-5x/week of "deep water" exercise. This is basically all types of calisthenics and muscle-group work, with foam resistance ankle-cuffs and foam barbells, all done vertically, head-out-of water in deep end, in my city pool. Good for core work, and I can isolate different muscle groups, and it's somewhat aerobic.
During recovery from this recent implant surgery, I'm not allowed to raise my heart rate for 2 weeks, and I can do no strenuous exercise for about 6 weeks, and no sit-ups for 6-8 weeks, and no going in the pool until the incisions heal. Unfortunately, I had (hardware removal, follow-up from a foot surgery last February) a small foot surgery three weeks ago, and I can't really walk well either, for a few more weeks while it heals. I haven't found a time machine for sale on Amazon. GRRR.
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My pharmacist looked it up...antihistamine (Claritin) fights inflammation; inflammation aggravates joint pain.
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DebAL
Glad you are going to go for it!! You asked about brands. Probably like everything we put into our bodies, we all react differently. However I can share my experience. I started on TEVA brand April, 2018 and had no issues. My CVS pharmacy changed brands to Zydus a few months ago and I noticed an almost immediate change. It wasn't in the form of bone pain -- just tons of hot flashes. I find that to be an odd side effect since all of them should be inhibiting estrogen, but that's what I experienced (but no bone pain). I talked with the pharmacist and she said TEVA was ending their manufacture of this med and the CVS corporate selection was Zydus. She said it's probably cheapest but we agreed I might be able to work with an independent pharamacy that can order whatever it wants.
I worked with one and she researched all the inactive ingredients in all of those manufacturers of arimidex. She select the closest she could find to TEVA, and after switching to the new brand (Accord), the hot flashes were gone. It's been very noticeable.
I hope you find one that works for you and start building those bones with your running! Like HikingLady, I have bad knees (5 surgeries but no replacement!) so my running is limited to the field, as I mentioned. But I do tons of exercise daily and have had no issues.
Also FYI, my sister-in-law has been on Arimidex for over 2 years now and her dexa scans show no bone loss. So I guess it depends on how we each respond. Good to know it's possible!
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MDRR, thanks for your reply. Great news your sister in law is doing well. I spent yesterday calling all over town for the TEVA brand. I remember reading on the boards awhile back about that manufacturer. It seemed many on here preferred it if I remember correctly. Only 1 pharmacy had it so I transferred my Rx and started it tonight. I'll give it a try for a month and see if there is a difference. I'm not holding my breath by any means! You are so right, we all respond differently. Thank you again. I hope you are doing well also.
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hiking lady, lol on the time machine! I think I could pop a few motrin from time to time and maybe that will help. It just baffles me how good i feel throughout the day No struggles at all. By evening I cant sit in one place without intense aching in my legs. I very active all day long. Walked 5 miles at my job alone. I dont think my body likes the go go go... then stop. I'll give this new manufacturer a try, maybe switch to taking in the morning and go from there. Thanks for listening and I appreciate your advice. I hope you heal quickly!
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Hi Ladies,
I'm glad to have found this board. I've been on Letrozole/Femara for a little over a year and have the same stiffness and aches many of you do. Most of my very VERY uncomfortable bone pain disappeared after DIEP surgery - not sure why but I'll take it. I've been taking Tumeric and glucosamine/chondroitine supplements and they help A LOT with pain and stiffness. I can tell in half a day if I miss taking those pills.
Had to change pharmacies so my Letrozole mfr’r changed from TEVA to Breckenridge. Haven’t noticed a huge difference, maybe a bit of bone pain but less hot flashes.
Lanne
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Giving this thread a bump, since it seems like there's a lot of people starting AIs who are fearful about it.
Plenty of us are doing just fine!
I myself am 9 months in. Some stiffness/achiness, especially first thing in the morning, and hot flashes that are somewhat worse than before Arimidex. I consider these minimal, manageable SEs.
Exercise helps with the former and also keeps the weight I lost during chemo off. I also take Naproxen. My MO prescribed 37.5 mg Effexor for the hot flashes, but we think it may be causing some GI issues. So I started Cloniden last week and am tapering off the Effexor. We'll see how it goes but if this isn't the right fix I will keep trying until I find one.
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6 months of hot flashes--my Onco doc today suggested a med to counteract flashes, but I declined--don't need one more med. Will reconsider further down the road. Am taking apple cider vinegar tablet s but don't really think they help. Hot flashes are awkward to explain at age 75. Joint pain has diminished. Lymphedema diagnosis last December but by the time I got to see therapist in Feb., swelling had gone down and she cancelled twice weekly therapy. Started Livestrong at the "Y" two weeks ago & am jazzed (wearing a sleeve). Looking forward to good things.
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Magari and trdage.
This is encouraging to me I’ll be 85 in April, having a lumpectomy March 14, no rad, no chemo, but Arimidex for hopefully 5 years. I am beyond terrified, not only of cardiac, depression, mood swings, bone loss, but also of the narcissistic silly stuff of hair thinning, weight gain, skin changes . It all scares me. Not too worried about joint pain. I do exercise a lot. Hot flashes at 85. It’s all too much. But it sounds as if you are finding it doable enough and that is helpful to me. Thank you
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keywest--for what it's worth, I've had some stiff joints and general crankiness but I really have not noticed any hot flashes. My theory is I didn't have much estrogen in me when I started the AI (I'm 61) so maybe I didn't experience a big crash. I also (knock on wood!!) haven't noticed any hair impact. I've been on the full dose about three months. If it helps, lots of us on other threads took a gentler on-ramp to the AI. Some cut the pills in half; I took the full dose every other day for about three weeks. I asked my MO about it and got her blessing, but some aren't even asking. I haven't heard about *anyone* whose doctor didn't sign off on it. I think they're much more interested in you staying on it than when you start (lots of us delayed a few weeks) or the dosage when you start out. Keep up with the exercise. It'll really help.
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Ingerp,
Thank you so much. In general, I am pill phobic, and definitely about Arimidex. The gentler on- ramp approach would help me adjust. I meet MO for first time on March 24 and will put forth my plea for an every other day start or half dose start. I think I can cope well enough if it’s just stiff joints and crankiness. You mention other threads- do you mean the bad effects AI one or which? I’ve never taken an antidepressant, b it seems like many on the threads are and I am wondering though I would hate to add another med. Yet, much anxiety.
Thank you.
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Hi, keywest. I just want to add my words of encouragement. I had my lumpectomy nearly two years ago (3.31.17), followed by 33 radiation treatments. I started Arimidex (anastrozole) that July. My SEs have been minimal - some knee pain, dizziness, moodiness (I started taking magnesium, which helped), fuzzy brain. No hot flashes, no hair thinning. I'm due for another DexaScan and diagnostic mammogram before my next visit with my MO. Hope my bones are holding up OK - I go to fitness classes five days a week, which should help. BTW I just turned 72.
MJ
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keywest--the other threads are mostly the ones specific to when you started treatment (there are new groups every month for surgery/chemo/rads). I know a lot of women take Effexor to help with hot flashes but I'm with you in wanting to minimize the number of pills I take. I do take Biotin (which I started before dx) and D3, which my MO recommended for possible bone loss issues with the AI. She also recommended a Calcium supplement but I'm trying to increase Calcium through diet. I get you on the anxiety but I think you'll do fine.
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Arimidex attacks the bones. My MO prescribed it for me despite the fact I already had osteopenia. I took it for the first year and then she switched me to Tamoxifen but the damage at least for me was done. I now have osteoporosis which is painful at times. I take Boniva 1x a month and calcium and Vitamin D. Arimidex is typically for post-menopausal women which I am so I didn't question it at first. Other than that I did fine on Arimidex. No hair thinning, etc but I did have joint pain with Tamoxifen. My weight fluctuated.
I do agree taking more meds is not something any of us want to do unless absolutely necessary. I didn't take any depression or anxiety meds then but I do take a genetic Prozac now. It takes the edge off.
I was 7 years out last August. I had IDC, Stage 1b, Grade 1. I had a lumpectomy and 33 radiation treatments. So far, so good.
Diane
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keywestfan, it’s important to not assume you will experience side effects. Not everyone does. There are three main options for AI and if one doesn’t work for you talk to your oncologist about another. I started on arimidex and switched off pretty soon after due to fatigue. I’ve been on aromasin for 20 months with really no issues. I had some insomnia that I thought came from stress (death of a loved one) but determined aromasin was the cause when I restarted after surgery. I switched to taking it in the morning and haven’t had a problem since. I recommend keeping an open mind about AI and side effects. Exercise is a great antidote too
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Keywest - Please try to look at the glass as half full; I believe keeping a positive outlook and not looking for trouble before you find it makes a huge difference in how you'll get through this experience.
You made it to 85 before your diagnosis, and are able to treat with solely lumpectomy and AI! You may not feel fortunate, but look around and you'll come to realize that you are.
I am 55 and although my treatment plan was tough I am on the other side of the big stuff and doing well. I don't expect to ever feel exactly as I did before all of this, but I do expect to enjoy the rest of my life for many years to come.
There are lots of women here 20-30 years younger than I who are dealing with far more than either of us. They are doing so admirably, and have my respect and support.
Arimidex is really not that big of a deal. I do take calcium/magnesium, D3, krill oil, biotin and a couple of other supplements now; it's just my new normal.
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For everyone having or frightened about bone pain with AIs (I'm on Letrozole), I highly recommend trying a glucosamine supplement. It has helped me a lot - I can tell after a couple of hours if I've forgotten my pills. Also re antidepressants, I started on cymbalta - a low dose (40mg) as it curbs anxiety AND helps with neuropathy in my feet. I split the dose am/pm. Also 60 20mg pills are less expensive that 30 40mg pills! Have also found curcumin/Tumeric supplements to help with overall aches and pains.
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I'm soon to be 73 so I too wasn't prepared for the hot flashes. MO hanged me from arimidex to letrozole in Oct. '17 and added venlafaxine this fall and both hot flashes and mood swings (and as DH said, generalized bitchiness) are much better. First dex was very good. I've had arthritis for years but still have the original set of joints which is more than many of my friends can say. I think the joint pain is definitely arthritis rather than AI's. Hair is definitely thinning which I hate but am trying to acquire a fun hat collection and be known as "the lady with the hat." Have a few wigs and now that the hot flashes are gone, wear then occasionally too.
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Magari, Runrcrb, Ingerp and everyone who has been so helpful to me.
Thank you for the very good advice that I just might not have every SE ever listed and to look at the glass in a more hopeful way.
I am aware that(depending probably on final pathology) that due to my age (life expectancy) my treatment is lighter than so many. It is also phase of life appropriate. I do understand what younger women are going through when it is out of sync with their life phase. When I was 35, I had a cancer of the cervix that was misdiagnosed for 2 years and then wrapped around blood vessels. I had a radical hysterectomy, surgical menopause, and the most deep of depressions. I basically gave up. But there are second chances in life, and especially the last 25 years have been extremely happy.I've been grateful for every day. I think, this has thrown me, at, very soon to be 85, into a kind of PTSD and I'm reliving all the confusion and terror of 50 years ago. I will try not to stress so about Arimidex and to also be grateful that there might even be a third chance and grateful too to those who give such good advice.
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PTSD can be triggered by breast cancer. It was for me. I take Ritalin. And it works.
Best wishes,
CoachVicky
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All, just a comment on curcumin/turmeric, be careful because it can interact with other drugs you are taking and not make them as effective. I read an article about one of the trials on benefits of curcumin where the researcher mentioned in the notes that although they don't have positive evidence there could be an interaction that reduces the effect of AI. I will try to find the article again and post. Just wanted to share this info. In any case best to ask your OC about taking it.
Also, I take glucosamine and think it is helping me with bone pain. I talked with my OC and checked the drug interaction site before taking it.
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Hi, I have had mild SE like- hot flashes that last 15-20 seconds and hair thinng (use to have my stylist texture to thin it), initially I had muscle cramps my pharmacist recommended CoQu10 I take 100 mg 2x daily. Prior to my BC dx & AI I was diagnosed with osteoarthritis & rheumatoid arthritis, I've been getting steroid injections for years & MO is ok with them. I ride my aerodyn bike as there is less impact on my knees, it has helped with lessing the joint pain. I also dropped a few pounds. The hardest SEs are the anxiety, fatigue, mood swings & being a bitty - which I never had been, well maybe a little. I hate when that happens 😠 I had not heard about magnesium suppressing some of the emotional issues. I'll be checking into it! I agree I'm not in favor of taking more prescription meds I'd rather do supplements or healthy food choices. I'm so grateful to have our forums & support! Thanks
Dx 8/14/2018 IDC ER/PR+ HER2- left <1cm, surgery 10/3/2018 0/2 nodes, lumpectomy left reconstruction, IORT, right reduction, 10/8/2018 ariminx
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