Doing Well on Aromatase Inhibitors (AIs)
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Checking in. I passed the one-year mark on Arimidex (Anastrozole) last month. As many others around here, I also had my ovaries removed, so I am post-menopausal. My side effects are some pain in my hands and knees, mild and for which I don't take anything. I have hot flashes, which are also mild and predictable, over-dressing and over-stressing being clear contributing factors. I exercise very often (mostly swimming) and I joined a meditation group at my cancer center to deal with stress. I used to take low-dose Effexor for the hot flashes and moods, but I weaned off it a couple of months ago, and I haven't noticed any difference, I am still doing well.
Vaginal dryness is my most annoying side effect and I deal with it via creams and oils and what not. Skin is dry throughout too.
All in all, I am much happier than when I had my periods, honestly. I don't miss anything and feeling great.
I would be cautious about blaming aromatase inhibitors for any aches and pains one has, I had a few months of creaking pain in my elbows and shoulders when getting up in the morning, which I attributed 100% to the AI, and that turned out to be caused by sleeping on my belly with my arms tucked under my pillow. Changed the sleeping posture (which I had adopted shortly after getting my breast implants) and those pains completely disappeared. I would be careful also blaming the AIs for emotional issues, depression, etc., I wonder how people know that the AIs are the cause. Being a cancer patient/survivor (and getting older) is not easy mentally for anybody, with or without AIs, so it is important for all of us to be proactive checking and managing our mental health.
Wishing best to everybody!
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I really appreciate everyone jumping in when someone has a problem. It helps to try what others have tried and had success with. Everything has side effects - this board just shows us that they are not as bad as we might have thought. I have learned so much on this board. Please keep asking questions.
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it has been 45 days shy of 2 yrs since I started Arimidex. In the beginning I hated it for few SEs. I drink lots of water no special diet. Drink two bottles of beer every week. Full time job. Exercise whenever as much as I can. Other than Eagle pharmacy jacking up the price to $2 from $1 per pill I have no issue and plan to continue as long as I could.
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laughinggul - so glad to read your post. You are 100% right that no all that we experience post cancer is due to our treatments. Glad to read you are doing well. I too plan to continue my AI as long as I can.
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Thanks to those who've posted positive updates; it's great to hear that a lot of us are doing well. Even if it takes a bit of effort to get there.....
I was on Arimidex for just over a year and SEs were manageable. I began having increased issues with achilles tendonitis and plantar fasciitis, so tried Aromasin for a month, but hot flashes increased and so did my weight.
I've been on Femara for a week, and it's too soon to tell but so far so good. Had to stop using Clonidine patches to help hot flashes because they were causing skin burns. So my MO just increased my Effexor from 37.5 mg to 75 mg. I'm hopeful that the third time will be the charm! If not, I'll go back to Arimidex and see if the foot problems can be staved off for another year or so. Take a short break if need be, and start up again. I fully intend to continue AIs for as long as recommend.
I walk at least a mile and a half and do PT exercises daily. Drink plenty of water and eat unprocessed foods. Still drink coffee, red wine and the occasional cocktail. I feel pretty good!
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I was *this* close to asking my MO to take me off Arimidex and change me to a different AI because of the elbow and shoulder aches. They were making my life miserable. Well, my pains had nothing to do with Arimidex. I am a tummy sleeper, and since they finished my reconstruction and I got my implants, sleeping on the implants was uncomfortable, so I started to sleep with my arms tucked under my pillow, to prop me up. That meant long hours, every night, with all my weight on my elbow and shoulders. No wonder they hurt. Stopped doing that and the pain was gone in like, one day.
My sleep is not what it was prior to oophorectomy + arimidex, but it's gotten much, much better, just by going to bed earlier, and by adopting the habit of not turning lights on, and not grab my phone or my kindle, if I wake up in the middle of the night. No caffeine after 3pm, no heavy meals before bed, no internet before bed. Problem solved.
Hof flashes much improved by adopting a calmer, more contemplative attitude towards everything.
i hope I don't sound like I am minimizing or discounting other peoples SEs. I know people can suffer on this meds, but for me the SEs are really minimal. I dont mind being on this pill for the next 20 years.
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LaughingGull-- I also had sleeping position problems after my mastectomy. At first I needed to be sure I didn't roll over while going through the expander phase since I'm a side sleeper so I went out and bought 2 travel pillows from Bed Bath and Beyond. I'd put one in front and one in back of me to keep me sleeping on my back and then once it was ok to sleep on my side, they kept me from rolling onto my stomach. Then, while on Tamoxifen, I would get muscle aches in my thighs and laying on my stomach was the only thing that eased them so I'd take the 2 pillows and put one under each armpit so prop me up a bit off the implant so I could stomach sleep. Now it's been 6 years and I actually can't sleep at all without my 2 pillows! I still use them to "prop" me up when sleeping on my stomach so it doesn't feel like I'm completely squashing my implant. I buy new ones every couple of years. Probably one of the best things I bought myself (other than the ABC mastectomy 110 bras that I sleep in!) after my diagnosis.
And I too find that if I stay off my phone for the hour or 2 before bed I sleep much much better.
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lala1, I am so happy to hear that I am not alone! I am going to try the travel pillows, I actually just bought one for traveling. I am checking the ABC mastectomy 110 bras right now.
The cancer side is my radiation side, so the implant was more uncomfortable on that side, and I made an extra effort to prop myself up on that side...at some point my ring and pinky fingers on the cancer were getting numb from putting weight on my elbow which compressed a nerve....CRAZY! Who would have thought of this?
I am going to report it to the plastic surgeon when I go next month to get my tattoo
Good night and sweet dreams on your travel pillows
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I have been on Letrozole/Femara for 2 yrs with side effects that are largely manageable: some hot flashes, so I wear layers and v-necks a lot; some night sweats, so I run the fan and give my hubby an extra blanket; trigger fingers last winter and I had cortisone shots for those, no problems since. I just had a bone density scan and osteopenia is worse--no doubt from Femara. My MO wants me to start Reclast...my insurance won't cover Prolia. Prolia scared me because of dental problems. I haven't seen any dental SE with Reclast. What do you all think?
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Re: Protecting bone density while on an AI
Reclast and Zometa are two different brands of zoledronic acid. I have Zometa infusions every 6 months, and I've had two so far. My MO has said that it's protective against bone mets because it forms a 'matrix,' grabbing Calcium to do that, and it also strengthens bones to protect against fractures.
Turns out, these very properties also (kind of counterintuitively) make bone healing SLOWER. All bisphosphonates are in this category. I mention this, because a month after I started Zometa, I had a small surgery to remove a screw from my foot (it was backing out after a fusion surgery 10 months before, so I officially Had A Screw Loose, ha ha), and the recovery (healing a very small hole in the bone) took a HECK OF A LONG TIME, much longer than it probably would have if I hadn't been on Zometa.
Before each Zometa infusion, I have blood work to check kidney function. Kidneys that are compromised don't manage Zometa well. The infusion takes less than an hour, and it doesn't make me feel weird or sick or anything on the day I get it. So, on infusion day, I have a blood draw in the lab, then I see the MO, then I have the infusion in the chemo infusion area of my oncology clinic. All of this takes maybe 3 hours, every 6 months.
The day after each infusion, I feel like crap. Kind of like the flu. Not nauseated, but slow and tired, and I need to nap and lie around in a heap. I'm instructed to drink A LOT of water for a day or two. The day after that Feeling Like Crap Day, I feel absolutely fine. Therefore, I carefully plan my life so that I can do absolutely nothing except lie around and rest on the day after my infusion dates.
A large percentage of women have a significant reduction in bone density when they're on an AI. I was seen to have osteopenia even before starting my AI (on a baseline DexaSCAN), so I need this medication. I think I'll have my bone density checked every year or two. I will see my MO next in two months, and will ask him exactly how often that will happen.
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HikingLady, thanks for the EXCELLENT Zometa/Reclast info! I was diagnosed with osteopenia last summer. It’s mild, so I’m treating it with weight-bearing exercise and increased calcium intake. I’m due for another DEXA scan in the summer of 2020, and am hoping to stave off bone building meds for as long as possible.
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re AIs and bone density
My experience with Zometa matches yours, HikingLady, although I don’t experience the crappy day afterwards. Besides helping stave off bone loss, my MO says that research indicates that Zometa also helps guards against recurrence.
Lanne
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Mine said the same, regarding recurrence, Lanne. It’s also slowed progression of my already existing osteopenia. I know some women do feel crummy the day after an infusion but I’ve been lucky and that’s not been my experience. My MO said to hydrate very well the days before and after and to take Tylenol or NSAID before the infusion. Fortunately, that’s worked for me, as my primary wants me to do 5 years rather than three.
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I don’t have words for how grateful I am for your post!!! I will start meds In few weeks. I have been terrified after reading other reports of SEs. I am very active and am so encouraged by your experience. Thanks so very much for sharing.
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Has anyone had effects from Zometa last up to a week?
I started Arimidex on September 20 and had only a few mild tingles in my fingers. No bone aches, no increased hot flashes, no headaches. A month later my oncologist said that I shouldn't really expect side effects if none had shown up yet, other than weight loss would be harder and my hair could still thin out. (Joy). But he wanted me to do Zometa infusions every six months because one section of my hip scored a toe over the line into osteopenia.
I was fine last Tuesday after the infusion, drank 160 ounces of water in 24 hours, took Claritin before and after along with Tylenol. On Wednesday, I was flat on my back with "the flu." Felt punky on Thursday, too and then it seemed to clear up. But Friday, Saturday and now Sunday and I'm still trying to regulate my body temperature between chilling with a blanket and having a t-shirt soaked in sweat. I still ache. Is this Zometa ... or Arimidex kicking in?
All I know is, I'm falling farther and farther behind at work and need to find a way to stop the free fall.JAS62
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JAS62
I’m guessing it’s the Zometa, and you’ll be okay soon. It has affected me slightly past day 2 each time, but not as much as you’re describing. I’ve never felt sick or chills, etc. because of my AI. Maybe you’re randomly Just Sick! Hope you’re better soon
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Thanks for the well wishes, Hiking Lady! This morning I woke up with the joints in my fingers too sore and red to move them. I had an appointment with my GP for something totally different this morning, and she said something was definitely not going according to plan. I'm calling my oncologist in the morning.
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managing side effects from Aromasin,
Hi ladies...I am 10 months away from finishing my 5 years on Aromasin, after trying all AIs and Tamox with debilitating side effets from them. Here are some tips to manage side effects. I have done every single one of them
Joint pain: hot yoga, gentle yoga, walking, hiking. Hot yoga has helped me a lot. I have not experienced joint pain until now-10 months away from finishing my treatment. I started having pain in my hands and feet about a month ago. I started on tart cherry pills, recommended by my oncologist.
Bone loss: backpacking + prolia shot. But at the last check up, I did not need prolia
Insomnia: this one is tricky. A cocktail of effexor+ a good quality melatonin. you will have to see which dose works for you. For me, it is between 5 and 10 mgrs. Life extension Melatonin IR/XR, I take 2. Second cocktail after effexor did not work anymore for me, Gabapentin (300 or 600mgr )+ Life extension Melatonin IR/XR. Once in a while benadryl or for a good night sleep Temazepam
Weight gain: exercice + control portion by eating frozen dinner + adding veggies and fruits. Also, I have accepted my new me and my new weight. I did not quit the medicine bc of weight gain. It is very frustrating but it is a reality. I have gained 15 pounds. I was a size 6 and now more or less a size 8 or 10. However, weight does not define me as a human being
I also drink cocktails 3 times/week bc life is too short to be miserable! My husband makes killer cocktails and pies that are hard to resist!Hot flashes: effexor 37.5 mgr or gabapentin 300 mgrs. Right now I am taking gabapentin 300 mgrs after quitting effexor. I have taken 2 tablets /day of new chapter over 40+ multi vitamins for the last 4 years. I have noticed that when I am out, I start to notice that my hot flashes are more pronounced. Really recommend!!! I also take 1 fish oil Vectomega Omega-3 Acid Complex from salmon every day
anxiety and irritability: effexor for 4 years and now gabapentin. Also slowing down and taking time for myself instead.
vaginal dryness: Intrarosa vaginal inserts. This saved my sex life!! And yes, you can take it. My oncologist is very knowledgeable and he said it was fine bc of the very small amount of fake estrogen released. It is a must!!!!
This is doable and you can do it! Find the AI that your body will tolerate better, and take care of the side effects. I have been enjoying life and backpacking. I am 50 year old.
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florence123...Love this post!...can you tell me exactly what you do for "backpacking"?? Is it hiking with extra weight? My son in law is army and he does this, with unimaginable weights for training!! Haha...I will be 60 and retiring...looking forward to taking care of ME...and not a classroom full of 6 year olds...and their families!!! 🤩🤷🏻♀️
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yesterday was mine!!!! So far so good! Praise God!
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Claire
Your post has given me so much hope. I started my AI yesterday. I let putting it off because I was terrified. All of these posts have helped greatly!!
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Good Morning I’m looking for some help. I started Anastrosole Sunday AM. Took it on an empty stomach and felt fine all day. Since Sunday night I have been very nauseous and have a bad headache. I can’t tell if it’s the meds or a virus. There’s a lot going around in my house. Does anyone have any input on this. Thanks so much.
Mary
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Many of us take it with food. Also, many of us started out at half dose (or full dose every other day), which seemed to help with SEs. I was a little more headache-y the first few weeks but that went away.
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Thanks so much for your reply. I’ll try the every other day for a bit. I’m so glad to hear it passes!
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2teach My MO didn't want me to take it every other day, for a couple of reasons. One was efficacy of treatment as per researched effectiveness and protection, and another reason was that the side effects and adjustment would just take longer, not be avoidable, and I found my 'adjustment' period of feeling a bit weird was just a couple of weeks.
Every single side effect, or effect of lowered estrogen has gotten better as my body adjusted. Kind of creaky joints and stiffness, all that stuff, some joint soreness that arose the first few weeks, etc. was completely better after 1-3 months, as I added more (daily 1 hour) of exercise and got stronger. I started on Anastrozole right after finishing chemo and while finishing final reconstruction surgery, so as I recovered strength and got back into daily exercise, all of my AI side effects receded to be very slight.
I drank A TON of water and was sleepy for the first week, and stomach felt weird, but it definitely did pass, and I felt just fine, stomach-wise, after a week or two. I take mine right after breakfast every day. I've continued to drink A LOT of water every day. When I forget to, I feel weird (tired, strange, headachey) so that seems to be really helpful for me.
Doctors have slightly different recommendations from each other, and we are all different on how we adjust to this med, I've seen, by reading this thread. My MO predicted that I'd feel better after a few months, as he'd seen was almost always the case after 25+ years in practice. He was right! I think it really helped me, too, that he put a positive spin on the whole thing. Not unrealistic, just positive-supportive. As in, he clarified the huge reduction in recurrence likelihood "benefit" statistics to give me a clear context of the importance of being on the AI, and he also was very clear about expecting to help me manage ANY challenges that came up due to the AI. He said, "be in touch, speak up about difficulties, and we'll solve one thing at a time." He said that meant either treating a difficult side effect, or changing which AI that I'm taking, or taking a "1-2-week re-set break," among other possibilities.
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HikingLady thank you so very much for your help!!! It is greatly appreciated. I already feel better today and am keeping On taking the meds as directed. I figured if it is the intro stage may as well get it over with. Happy Healthy New Year!!
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2teach, it sounds like you had a touch of the stomach flu that has been running rampant. I would take the pill as directed. You can play around with the timing etc. but if you are taking it, you want it to work!!
One of my friends who started AI about 6 months before me gave me the advice to 'keep moving, keep moving, keep moving', and that is what helped me the most. I never felt horrible, but it took my body about 6 months to adjust to its new normal. Plus I learned to adapt; I had some hot flashes, so I bought a bunch of fans and learned to dress in layers. I felt creaky if I sat for a long period of time; so I knew I had to get up and move, I got one of those cushions for when I went to ballgames, took more breaks when driving etc. After 6 months, I didn't even think about the fact I was on Arimidex anymore, I was just living my life.
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I am on Letrozole. My SE's have come and one, and come again. They are manageable. I wear a thumb splint on my left thumb and hand splints on both hands at night. This has helped with trigger thumb and hand pain. A warm shower also helps. I do think it is making my neuropathy worse. I would like to go off and see if it gets better. But what if it did? I still need to take this medicine. My MO says it is as important as chemo. Most days I think I can do this. About once every few weeks, I want to quit. But it's really not too bad and I want to give it time.
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Thank you very much for positive response and the encouragement. I am feeling better I do think it was a virus. Moving is no prob for me I work out 5 days a week anyway. And am a 2nd grade teacher. Thanks again and Happy Healthy New Year
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I want to add to the thanks posted by other members for this thread. I am about to have surgery and the thing that has REALLY been bothering me is this hormone medication. Surgery I can recover from. Chemo, if I need it, will end. But the thought of all the horror stories about these AIs was making everything seem hopeless. Surgery is in a week and a half and I feel physically great and I'm thinking I'll never feel good again. I'm 62 and I'm going to turn into an old woman by the time I hit 63. No more travel. No more gardening. It's either that or I don't take it and the cancer comes back. This thread has made me realize that some people do fine, side effects can be managed, and there is hope. Thank you.
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