Doing Well on Aromatase Inhibitors (AIs)
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I suffer from insomnia myself and I have been hesitant to take melatonin - another hormone. Not sure how safe it is to remove some hormones using AI and add another one. What a mess of hormones I am
). also, I take letrozole late at night. 0 -
After I started taking letrozole, I found that I had most of the common symptoms others describe here - the achy joints and muscles, stiffness, fatigue, etc., but the one thing I realized I have never had a problem with is insomnia. So many have that problem and I have wondered why I have most all of the other problems with the AI that others complain about, but not the insomnia.
Not too long ago it occurred to me that it might be my "happy light". I say this, because it might be something that could help others, especially if they don't want to add yet another drug or supplement of some kind to their regimen. The light (also called a SAD light) helps regulate melatonin, and maybe that is why I have never experienced the insomnia. I actually sleep very well, except for having to get up to use the bathroom at night (something that started with chemo and has never gone way). I usually go to sleep right after hitting the pillow and even when I have to get up to use the bathroom, I go right back to sleep again with no problem.
While I originally got the light to help me through those dark months (I live in a cloudy, overcast area) in the winter, I eventually started to use it year 'round, because I just feel better in general when I use it. I cut the time that I sit in front of it dramatically over the summer months (to almost nothing, really, but just a few minutes). I just adjust the time I have it on, as the seasons change and as the days get shorter or longer, but I always use it. Some might really want to try this to see if it works for them. There is a lot of benefit beyond the "winter blues" situation, and I think it might have to do with the circadian rhythm/melatonin thing. There are a lot of them on Amazon - various sizes, styles, costs, etc.
Just a thought that might be helpful to some others.
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good morning- I so understand about the sleep disturbances- is my most annoying side effect of letrozole followed by knee stiffness. I I can usually fall asleep ,but wake up in 2 hours and then every 1-2 hours thru the rest of the nite--exhausting--recently did a self inventory of changes I could try to improve my sleep-is not anyone change, but several together---: stay up a little later-tend to go to bed early to read in bed--minimal or no wine with dinner; limit liquids after 6p; dont sleep with my 3 dogs on the bed--that was tuff to change-they are still complaining-lol--and I put a sleep sounds app on my phone -I like the light rain one-helps me relax and slows my mind down- I also shut the window so the 4am birds singing dont disturb me--I
I do have ambien and occasionally take a half one- but even with that reduced dose- I feel loggy.? spelling? much of the next day- so try not to go that route-
I tried melatonin -but it brought on diarrhea-a known side effect for some- so wasnt willing to have that tradeoff--
I have been on letrozole- 2.5 years and just had my 2 year dexascan -minimal change from baseline osteopenia-I do take calcium, vit D. am not in a formal exercise group but am quite active maintaining a 2.5 acre semirural property in Vermont and find my self running up and down the steep stairs in my old house probably 40/50 times a day- must be working!
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this study on melatonin is interesting, I take 20 mg and seems to help most nights with insomina.
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Kimmh012
I was taking melatonin a while back and I’m not sure why I stopped. Thanks for that link. Memorial Sloan Kettering’s integrative medicine website points out this as well as melatonin may help with side effects of ALS. It doesn’t indicated that melatonin is an issue for ER + markers but there are certain meds it can interact with.
If you don’t mind me asking why did you switch from Arimidex to Aromisin? And are you doing better on the latter?
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I am on anastrozole not letrozole, but I had bad insomnia at the beginning. Regular exercise + not eating past 6pm or 7pm help me with insomnia. Also meditation. Generally, good sleep hygiene and dealing with the sources of anxiety in my life. It also took time. The first months were bad and things gradually fell into place -or I adapted to the new normal?
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Kimmh012--that is a really interesting study. I stumbled across a bottle of Melatonin and have been taking it a little bit the last week or so but it makes me think I should start taking it regularly.
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I've taken anastrozole for 3 months now and haven't had any noticeable insomnia but I went through menopause about 10 years ago and had terrible insomnia then. I tried melatonin but although it helped me sleep I felt the sleep was not good - more of a shallow sleep with disturbing dreams I couldn't really remember. Anyway for 2 years I felt like I couldn't sleep well and what helped me most was getting used to it - the worst part of insomnia is tossing and turning and watching the clock knowing you're not going to fall asleep again for hours. So decluttering the bedroom and using an app to play meditation so I could relax even if I couldn't sleep. Even if I didn't get a lot of sleep just being relaxed and not stressed out about not sleeping helped. Now I generally wake up to pee about 2 am but get back to sleep because the learning to relax helps. Also not drinking wine in the evening helps - I would go to sleep easily but wake up and not sleep later.
My sister said getting restless sleep with melatonin means the dose was too low but by the time she mentioned that I didn't feel like I needed it. She uses CBD for insomnia - she likes to buy bud that is high CBD low THC which is legal in her state. Personally I don't like to smoke but edibles would be an option.
I already had stiffness and aches in the morning (need to exercise and stretch more) which haven't gotten worse the only side effect is mild hot flashes which are getting more infrequent. My original bone density was very good for my age and the MO says to repeat it in 2 years.
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ingerp, I was on a generic Anastrozole, I had debilitating bone and joint pain in my forearms, hands, thighs and feet, hot flashes 2x hour along with Migraines, then ONC switched me to generic Exemestane and things got worse, I could not move in the mornings it hurt so bad... Anywho, I have been off Exemestane for 14 days, things are a little better but Today I am supposed to start the name brand Arimidex, I might wait a little longer..
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I was on generic anastrozole (Teva) for 3 years and had many aches and pains and when I woke up in the morning my legs felt like they were made out of cement. The pains got progressively worse, especially the tops of my feet. It got so bad at the beginning of this year that I was having trouble walking. I switched to the brand name Arimidex in February and it was life changing!! I still have a bit of stiffness and my feet have a slight ache, but nothing like it was on the generic. I do try to get 30-minutes of exercise a day and I take a multi-vitamin, vitamin d, krill oil, and magnesium. Exercise definitely helps - which is the last thing you want to do when you are feeling so terrible - go figure.
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I take a benedryl at bedtime when I take my anastrozole to help me sleep. Staying asleep seems to be my issue. I am finding my TE to be uncomfortable. God only knows when reconstruction can take place with COVID
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I’m curious, has anyone fared well being on Anastrozole, and I’ve done every version including Arimidex, to Femora. I’m not buying it’s going to help me.
I think this all about a drop in estrogen for a “younger BC Er+” patient.
But I’m certainly all ears.
Thank you ladies for all your insight.
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One thing I was told about melatonin by my naturalist doctor....too high of a dose can also disrupt sleep. I actually took a 0.3mg which is the lowest dose they make and very hard to find. I found within a week of taking that dose I slept very well. I continued on it for a couple of months till my sleep was regulated then weaned off. If I develop insomnia, I just restart it for a couple of weeks. A few times I took higher doses and it gave me really vivid dreams and left me exhausted when I woke up. So for some, less is more!
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I've had insomnia for years and take Lunesta. It works really good, it's extended release, and doesn't make you groggy in the morning. It really helped me after dx, and I slept for 10 hours a night during chemo and radiation, getting up to pee once. I've been on lupron for almost 4 weeks and Aromosin almost 2 weeks. I'm completely miserable, am very restless and agitated, like restless leg syndrome, can't sleep properly even with the sleeping pill, have a headache and of course every inch of my body is in pain, already had that before and it just got much worse. I'm getting ovaries out in August and don't think I'll make it another week on Aromosin. Debating on Armidex vs. Femera. My main issue is sleep and resting or relaxing without shaking, but looks like there are sleep issues with all three. Memyself17, interesting that the switch to name brand made such a big difference. I'm so confused. I've also tried night vs. day. Not sure what is worse. When I took it in the morning i fell asleep, while working from home, lol.
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CBK- I'm 27 months on Anastrozole. The beginning was horrible: sleep, word loss, anger, and dreams/nightmares, and more. I'd fall asleep fine, just wake up 4-5 hours later and get up for a few more hours until I'd be exhausted and go back to sleep. Within 4 -6 months it mostly dissipated. I'm ok now, random sleep insomnia. And I was retired when I started this, so I was able to just go back to bed.
I'll be glad when I no longer take the drug. I think for me its a 2% or 3% benefit. I've read about people taking a break from it, or a vacation. I fear if I ever did that, I would never go back on this medication. 33 more months to go, it's doable. HUGS
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Hi CindyNY
I’ve been on Anastrozole just a little bit longer than you. You are lucky to have beat those s/e so quickly.
I’m currently on my second vacation from the pill and contemplating my next move.
I was wondering if anyone had success going from Anastrozole to Femora?
I think my other post wasn’t quite so clear. I’ve tried accord and teva manufacturers of anastrozole. Plus the brand version of Arimidex. In the end side effects for me have been the same. Virtually the fillers are identical so I don’t see how others get relief on one version to another. But I know people have reported feeling better.
Lala1 good information on melatonin. Funny I was speaking with a friend of mine who is a nurse and she said that in fact if you are prone to anxiety for some melatonin can have reverse effect so start slow. She rec .2mg and up from there.
Wishing all of you to best in your quest.0 -
Annie60 - getting a good night's sleep is so wonderful. I do not think any supplement can replicate that, but some might be better at promoting it than others. What works for one person, doesn't work for someone else. My problem is waking up 2ish AM, sometimes very wired. I tried a CBD product with/without THC that a friend recommended and really liked for sleep, but it did not help at all. I really try to limit sugar in the evening/PM, and I think that helps. I heard that valarian acts like a stimulant for many people. Recently I heard that hops helps, so looked for a tea with that. My acupuncturist also recommended peppermint, chamomile. I've heard that being outside in natural light without shades for 10-15 minutes (including darkening glasses) is helpful.
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My MO recently recommended 5-10 mg of melatonin before bed. With that, I’m having outrageous dreams ... not bad dreams but CRAZY dreams. Then I lie awake trying to analyze. 😳🤣🧐Lots of old lovers, bizarre situations, alive parents, etc
I’ve tried valerian root tea (sleepy time EXTRA in the blue box), Xanax, klonopin, smoking pot, lavender aroma therapy, Dream Water (got the idea from Post Malone). Must have a dark and cold room for sure. And I love my Saatva bed.
Everything works to a certain extent ... I guess it’s just a matter of finding the right combo... we are all so individual.0 -
Seawell - tell me more about that Saavta bed. Sounds spendy. But I am in the market for a matress to replace the 25 year old one I have. Maybe it will help with better sleep. A little concerned that memory foam might restrict getting comfortable. ALso take melatonin on advice from ND. She was recommending it for BC rather than sleep when I told her I tried it years ago for sleep with no satisfaction. So now I usually take 20mg a couple of hours before bedtime. I usually get to sleep just fine, but often wake up 2ish, wired. ALso try getting sunlight without shades or darkening Rx glasses for at lwast 15 minutes/day.
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bluegirl,,,,,
Saatva is an amazing bed you purchase on line so it’s really affordable! Great customer service as well. It’s not memory foam (yuk!) Check out their website. I have a Luxury Firm (the middle one) Many of my friends have purchased one and love it too. Anyone who sleeps in my bed never wants to leave😍
I think they’re having $200 off sale right now too..... treat yourself 💜
I truly believe we ALL deserve a great bed after all that we’ve been through. I love darkness and a chilly room. And luxury bedding, sheets, pillows too. It won’t eliminate insomnia completely but it certainly helps.
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Ladies, has any of you any experience with edema on the opposite side of BC? I am having in my right neck, right breast and I'm feeling pressure on my right ear. Arms, legs, are fine.
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LillyWasHere you might check out the lymphedema and surgery threads with your question. I do know that lymphedema is a risk after any torso or axillary surgery, so your non-cancer side can develop it, for sure, if you had surgery on that side. I think your signature says bilateral mastectomy? Wishing you a good solution!
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LilywasHere - get the swelling checked, it may or may not be lymphedema, but it should be diagnosed. I hope it is something that will go away in its own.
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Thank you BlueGirl. So far, MO, PS and PCP can't find out what is going on. Do you have any suggestions? What should I look for? What is the worst case and why? Thank you so much.
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LilyWasHere - You are doing the right thing by seeing specialist to find out what is causing the swelling. Dx will determine treatment. I first went to urgent care who ruled out a blood clot (very serious and would need immediate treatment). Urgent referred me back to MO, swelling in opposite arm/side from surgery. MO mentioned several possibilities, including "benign" which I think means they do not know and it will go away on its own. Unfortunately after biopsy and scans, tumor found in R-axilla, even though I had had a bi-lateral 2 1/2 years prior. Cancer and sentinal nodes had been on left side. Is the swelling from surgery? In 2009 after a lumpectomy, I was not healing as fast as expected, and the radiologist on oncologist delayed radiation for at least 2 weeks. I think radiation and reconstruction can also cause swelling.
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Thanks for getting back to me BlueGirl. Swelling is not from surgery. BMX was done last September, breast reconstruction this Jan. and I was fine until last month when one side of neck got swollen and a thyroid nodule is shown in US. Tomorrow, I'll have a zoom visit with thyroid doctor. MO and PS have seen me in person and they can't find out what can this be. I am under antibiotics that have removed the redness of the swollen right breast. I didn't have radiation and PS said he never heard to have a swelling after 5 months of surgery. Do you mind if I ask you what type of scans did you have?
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Lilly, It sounds like it might be related to the implant. Maybe your body is reacting to it. It sounds like an infection of the implant if your breast is swollen and red and they gave you antibiotics. Drs. never want to admit something they did is causing issues. ("51 to 64% of silicone implant ruptures were caused by damage by surgical instruments during the initial implant surgery"). Sorry, I binge watched every episode of Botched while off of work and trying to decide implants or DIEP. After I lost my TEs to infection I read a lot of the forums regarding infections. I don't recall if there were any delayed infections though. It is more common to have an infection right away. Maybe ask for an MRI?
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LilywasHere - scans were not diagnostic for lymphedema. Initially at Urgent Care, ulrasound was used to determine if there was a clot. They saw lots of fluid, but no clot and referred me back to my DR. Did not see or talk to DR when I called, but got a referral for lymphatic therapist. She immediately contacted the MO, because the swelling was contralateral (opposite side). After that it was CT and biopsy which found the cancer. PET indicated no metastasis. CT does indicate nodules in thyroid which MO really wants to follow up on, but at this time I do not. Years ago my primary ordered Thyroid check, hormones were normal. She then ordered scan (CT I think), which found nodules. She then ordered biopsy. It was inconclusive. I guess because the biopsy was inconclusive as well as uncomfortable, and I'm so tired of all the poking and scanning, I just have not followed up on it, even though I probably should. Something to ask your DR - are scans diagnostic or do they just "find" something that a biopsy needs to examine. I think I should ask if the scans primary did years ago can be compared to recent CTto see if things have changed.
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Thank you, Ladies. The only scan I had last week was US that found a small thyroid nodule. I had a zoom visit with thyroid specialist and she recommended a biopsy, however, she doesn't think this small nodule is creating right side neck & breast to swell. PS doesn't think it is the implant that is causing the swell. I don't have any scans from previous years since I never needed any until now. Basically, no one can figure out. I will go for nodule biopsy, just because I am paranoid right now. Before I had a breast biopsy that found cancer last year, I was told I had 1% chance of finding cancer, and here I am so I may be part of 1% group.
I hear you BlueGirl. Getting tested and poked all over is painful and scary. Is thyroid biopsy painful? I will be scheduled in 4 weeks since I am still in the course of strong antibiotics.
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