Doing Well on Aromatase Inhibitors (AIs)
Comments
-
ingerp, maybe taking the AI in the morning is a good start for you when the time comes since you are concerned about your sleep pattern. I'm sure there is not a single person on the forum that wouldn't agree exercise is key. Plus that will help you sleep better too. Not just exercise for the day but in addition to that I feel being in almost constant motion helps. I'm thankful for a job that keeps me on my feet. I am only 3 months in and so far so good. However, should it affect my QOL decisions would need to be made. It seems the non tolerance to AIs is different for everyone. Sometimes within a few weeks or even months or years. Take it day by day and if an intolerable pattern develops it's time to try another approach.
0 -
Thanks, Deb. I have been getting back into a gym routine but other than that am way too sedentary. Once I’m a little further down the path I might go back to a standing desk or reactivate my “Move” app, which gives you a little something to do for a few minutes every hour. I have read the research that it’s not sweating for an hour every day that’s going to extend your life—it’s moving regularly through the day.
Can’t say I’m looking forward to starting the AI. . .
0 -
ingerp..think about starting out with this mindset " I will do fine on the AI until my body tells me otherwise". You may do just fine!. It's hard but please don't let your mind get to you before you start. We are all at different levels of energy and endurance. Everyday ask your self is there truly a reason why you can't walk a bit further? If not further maybe another short walk later in the day. No matter how minute the extra few minutes of ANY exercise may seem it does make a difference. We all have our medical issues to work around ( neuropathy, arthritis , surgery restrictions etc) Sometimes we need ideas to help for a work around. For instance, I use resistance bands every day. They go in my suitcase when i travel. Stick them in the door and you have instant resistance training. Do a set or 2 and you are done in a matter of minutes. I chose to be aware of the major side effects of AIs to look out for and that's it. Anything else I will deal with when or if it comes!
0 -
Thanks for that, Deb. I *did* tolerate chemo well, including getting kind of used to the premeds--didn't have many SEs from the steroids after the first few infusions. I'd like to think I'll be here on this thread saying it isn't too bad. I'm just a little down these days with how long this journey has been, and then I think about another 5-10 years before it's really really over. <sigh>
0 -
I plan to see you on this thread too! And we all can help with suggestions and alternatives to keep all of us moving forward.
0 -
Hello: I am 3 months now on anastrozole and feel pretty good. I wanted to report -my BS said to give it a few months if I were to experience any side effects and I was having joint pain but it has subsided ALOT. Could be the supplements, could be she was right!!! Exercise surely played a role as well!
I have noticed hair thinning and I will live with it-hair everywhere. Will it slow down now that my body is getting used to this drug?
Coach Vicky-Yes please tell us how you're doing with the Prolia. I had a DEXA scan pre diagnosis and I have osteoporosis in my femoral neck/hip and osteopenia everyplace else. My MO sees me again in Feb. 19 and I might be started then but I am not sure what and if my insurance will be covering it. I'll worry about all that later.....
0 -
Thank you all for your kind comments.
Prolia has worked well for me. It can bring a 2% reduction in recurrence.
I think the "secret" to any AI is a positive mindset, exercise (lots), and the will to conquer.
I take Arimidex in the morning. Times my hot flash for wake up.
Coach Vicky
0 -
Ingerp- I'm 6 months on Anestrozole. I had some sleep issues early on, but they're over with. I'm 59 and get a good 7 to 8 hours of sleep nightly. You've made it so far, gone through so much, you got this too. HUGS to you.
0 -
Hello All,
To answer the questions ...
I have handled the Prolia injections very well. The worse part is removing the tough band-aid my center uses. I plan to take my own band-aid in October for the third injection. My dentist supports that the Prolia injection works for me.
As to why I started Arimidex so early ... I had already had a bone density test before diagnosis in June 2016 with projection of osteoporosis in my future. I was fat (175 and now 123 - 125), traveling for work constantly, and not exercising as I knew that I should. My first Oncologist said he hit me with everything he could and probably over medicated me. Please understand that I had multiple cancers in both breast that came quickly and aggressively by my percentage numbers. I fully supported my Oncologist treatment. I know he save my life.
As for sleep... My Mother had 4 children. Two slept all the time and two did not sleep much at all. I have never slept a lot. I am, however, finding that when I sleep it is restful sleep. I am a year and a little under a month out of chemo. It takes time for our bodies to recover.
Be kind to yourself and your body. I did not understand what it meant when those before me (like SpecialK) would say that it takes time.
Vicky
0 -
Thanks so much, Cindy. I love my BCO cheerleaders!!
0 -
Hello Ladies,
I know this likely has already been asked but how often is your MO recommending a Bone Density Scan. I started AI's in March 2018 and had a baseline done last December. I have Osteoporosis in my lumbar spine and osteopenia in my hips. I was told by my MO to have a scan every two years. I feel testing to see what the AI's are doing after 1 year would be a better idea. I am taking weekly Alendronate 70mg and daily calcium & vit D. I have not been advised to switch to Prolia. I am planning on meeting with my GYN later this month and will seek her opinion also. Thanks
0 -
Doofuscat- I think my insurance company pays for it every two years. But I don't have any osteoporosis issues. That being said if I did have issues, I too would probably want it done yearly to be on top of any further bone loss. Best of luck to you.
0 -
Doofuscat - My MO says every two years also. I started letrozole in Feb. right after a bone density scan that showed normal density. I think 2 years is standard for all women and wondered why we AI patients aren't offered one yearly. Perhaps as CindyNY says, its based on insurance. What a terrible reason if that is true. Polly
0 -
Most insurances pay for every 2 years. My Primary Care said that an annual bone density test does not (usually) show statistically significant differences and it is the two year timeline that does.
Coach Vicky
0 -
Thank you ladies for all your insight and support! I started Anastrazole in Feb 2018 and have been doing well on it. I take before bed, sleep well, but wake up with major cricks in my hips/legs upon standing and taking my first steps each day. This also occurs after sitting for a long time. I exercise daily and achieve my 10-15K steps, which certainly helps. If I have a busy day with a lot going on, I am more tired than I used to be, and I can really feel my body calling me to rest. At 48, I feel older. This may be a result of the depletion of estrogen not just a SE of the AI. Anyone else feel after a more active day that their body feels really tired?
I have my first dexascan on the 18th, and my doctor assured me that bisphosphonates are in my future and that it is more of a matter of when. May I ask why some are taking Prolia and others Zometa? Are they the same?
Lastly, I haven't had but a sip or two of wine since my diagnosis last spring, and this past evening I had a glass and 1/2 of red wine, and now my sleep has been interrupted with a major hot flash. I haven't had anything like this since I started my AI, and I wonder if it is due to the wine, or simly a coincidence....Have any of you experienced any such wine-induced flash?
Thank you again ladies for all your kind sharing on this board! ☺️
0 -
Mamafelice,
Wine (all sugars) usually triggers a hotflash for me. Just something I accept with my glass of wine. While never a heavy drinker, I drink less since diagnosis.
0 -
MamaF, you are describing me to a T. A more active day makes me extra tired and I pretty much fall into bed. I find that when my body says I'm done, I'm done!
My initial dexascan was normal..even a young normal comment that made me chuckle. I take vit D, ca. I've always done a quick resistance training routine daily along with walking/ jogging a fair distance. I'm on the every 2 year plan for dexascans too.
I hope everyone is feeling well. Enjoy your Sunday!
0 -
I have been on Femara for abour a year and a half and have NO side effects. Hang in there...it's not all bad...😊
0 -
Hello from Ireland.
I am on some other threads on BC.org and I just did a search for DEXA and found a few of you on here had mentioned it.
I did Tamoxifen for 2.5 years then got switched to AI's. I have been on Aromasin (exemestane) for 3.5. years. Moderate SE's, and I definitely prefer the exemestane to he tamoxifen as that stuff gave me the worst muscle knots in the neck and back and exemestane does not - happy days.
Recently had annual check up with Onc. Onc said that it was time to do a DEXA, due to risk of bone density dcrease from AI's. I had the DEXA scan last week. Have never had one before but radiographer told me scores are arrived at by comparing my results first to typical scores for women my age, then to typical scores for women in my demographic (presume other AI patients my age). As I am in Ireland it will possibly be a different medical system from US.
This afternoon I received a phone call to say my GP (that is MD)'s office wants me in tomorrow morning to discuss results of DEXA. This doesn't bode well as I had been told "no news is good news" at the DEXA appointment, so was expecting to hear nothing, being the optimistic sort.
I know this is speculative, as I do not know what the results are, but would love if someone could give me some info on the types of options if results are not great.
Does anyone know if coming off AI's is ever a possibility in the choices?
Many thanks.
0 -
I know they have already told me I will probably need bone drugs like fosamax or injections. These help build bone and some have the added bonus of preventing spread to the bones. So likely you will be put on one of these. It is quite treatable, I was on them for five years several years beforehand cancer as my bones are osteopenic and theyhelped.
0 -
I was switched from tamoxifen to exemestane last month due to side effects -- extreme fatigue, no energy, couldn't get out of my own way. Took a month off tamoxifen before starting the exemestane. I feel so much better on the AI-- no fatigue or energy loss so far and I am back to my usual happy self. I am hoping this continues. My onc did say that he will want me to have prolia injections since I have preexisting mild osteopenia, My dentist has advised against the prolia- -said you really do not want to be taking that because it can cause osteonecrosis of the jaw. So now I don't know what to do. I am almost considering going back on tamoxifen as it can (I believe) help build up the bones. But then I would have to suck up the side effects which were bad enough that I kept taking breaks from the tamoxifen. Not sure how this will end up but I see the onc next week so hopefully will figure it out then.
0 -
I think the oral biphospantes are less likely to cause necrosis. That’s what my dentist told me and what I have read. With the bonus they help prevent bone metastasis. It is hard to make these decisions.
0 -
Bennybear- are the oral biphospantes taken daily? I think the prolia shot is twice a year. I did not know there is an oral alternative, and will def check with my onc next week. Thanks for the info.
0 -
Cape cod girl, Fosamax can be weekly, some are daily. Best of luck, I will be starting in November
0 -
I am doing Zometa infusions every 3 month for the next 3 years to protect my bones. My dentist is also is goin to check my teeth and gums every 3 months while I am doing this for treatment. He also is giving me a fluoride rinse to protect my teeth and gums
0 -
Hello. I am looking for advice on sleep aids. Doing radiation along with an anastrozole is really knocking my sleep for a loop. I am exhausted and yet I am not sleeping at night. Any suggestions are welcome
0 -
Dexa scan was T-2.8 = osteoporosis
truly was not expecting this I am 51, but apparently being put into chemopause at 44 plus the AI's were 2 risk factors. GP (MD) was all ready to tell me about med options (
) but we never ended up discussing this as I asked about whether I could just come off AI's ? I have done 6 years between tamox and AI's. Turns out Onc has referred me to an Endicrinologist and the GP(MD) has written to both of them to enquire about chance of coming off AI's and nothing will happen until after Endicrinologist appt. 
BTW if there is a specific thread about bone health, osteoporosis etc that anyone knows of please do post a link, as I am aware this is not a the general topic on this thread. Many thanks XX
0 -
Has anyone on this board benefitted from changing from anastrozole to Arimidex brand for joint pain and dizziness.
I’m sure my side effects could just be part of my ooph and anastrozole is just being blamed for it. But curious if anyone had substantial relief??
Thanks ladies!!
0 -
CBK talk to your dr about switching AI. Going from arimidex to aromasin made a huge difference for me. Each person seems to find the fewest side effects on different AI.
Life1963 - experiment with when you take any Rx. I found that aromasin was the culprit to my insomnia so i take it in the morning. I have taken melatonin (5mg) for help but no longer need it.
0 -
thanks Run-
The question was shouting out to anyone that swtiched from generic anastrozole to BRAND Arimidex!! And had input.
0
