Doing Well on Aromatase Inhibitors (AIs)
Comments
-
Floral, welcome to this thread! I was very fearful of taking an AI. It has its ups and downs, but better to keep "the beast" at bay. SEs for me have been fairly easy to deal with. Please come back & let us know how your surgery goes. Gentle hugs. You can do this!
0 -
Floral - I was diagnosed at 70. 74 is coming fast. I currently play 18-27 holes of golf a week, bridge at least once a week, belong to a pretty serious book club and am President of the Board of our local food bank. I do have to pace myself more than I did and a summer knee replacement slowed me down a little. Bought a cane with a seat to go to the local Woman's March and a trip to Egypt, mainly because standing for long periods of time is hard. Don't get ahead of yourself on the SE's. And don't sell your gardening tools yet.
Taco
0 -
Welcome, Floral! We're glad you joined us here and are finding these forums to be helpful. We know how hard it is not to focus on the negative, but as you can see here and elsewhere in this community, everyone's experience really is so different. There is absolutely hope!
The Mods
0 -
floral, you need to find out your personal risk benefit from the oncologist. You may be fine or unable to take it. But you will get through each step, one thing at a time. This year I’ve travelled extensively to Asia, Europe and North America. Hoping all goes well for you too.
0 -
Just want you to know that I have been on Letrozole for about 60 days and I am doing well. Have a bit of stiffness in one hand and am stiff when I get up in the morning, but once I start moving I am fine. I walk about a mile and a half eveyday, do yoga twice a week and I dance around the house to rock and roll music. I am staying positive and feeling good. I, too, was scared but I am taking the bull by the horns. I am 74 and am looking forward to a long life. I only did radiation and that went very well. No burning, just a small rash that cleared up. Good luck, you are in my prayers and think positive.
0 -
Of my close friends who are on an AI, none have had significant life impacts. I'm 62, been on an AI for a little over a year, and really only notice I'm a bit more tired and a little stiff when I get out of bed or have been sitting a long time. I go to the gym six days a week, have kept up my vacation/visiting kids schedule, am still working full-time, . . . . Keep in mind that most people doing fine on anti-hormonals don't post.
0 -
I have been on anastrozole for six years with no significant side effects. Dry skin is probably my main complaint at this point.
0 -
Floral, not everyone experiences bad side effects. Approach the AIs with an open attitude, and you may be someone who has minimal or no side effects. Work with your oncologist, and if you have problems you can switch to another AI or even a different manufacturer (there are big differences in how women tolerate the various generics/name brand medications). I was terrified to take them too, but it's fine. I'm on Femara now and doing well. I do feel good, with only minor issues now and then. Best of luck to you for a comfortable recovery.
0 -
Floral - we live by the "everyone is different" credo. Do I have some issues, yes. Some other women are better than me, some worse. It's all doable until it isn't, then you can switch meds.
A gf was put on Anastrozole, same as me. She asked what my SE were. I told her I didn't want to tell her, to plant anything in her head, just because I have it doesn't mean she will. Also, I believe some of the SE are from loss of estrogen as a whole.
I'll be on the med 2 years on 3/1, with 3 more years to go! Wish I wasn't on it but what's the saying - if wishes were horses, beggars would ride. Best wishes to you.
0 -
I'm glad to see this post. I have to decide soon whether or not to start Al tx. All the negatives were freaking me out! Now I feel I will at least try them. See OC this coming week. Also, start rads on wed.
0 -
Hi- I have been on femara for 2 years this month and other than a little am knee stiffness am fine-thank goodness as with my risk for recurrence expect to be on it beyond 5 years-the first year I had a trigger finger that resolved and mild hair shedding that has stopped--these meds are our best defense against a recurrence-a 40-50 percent drop in that risk--a recurrence will be far scarier than some mild annoying side effects--really-hope you give it a go--hug from Vermont-Kaylie
0 -
KIDI - You mentioned starting rads on Weds. Do you know if your medical team will allow you to get through rads first before starting AIs? That's what I did - wanted to make sure I was on the mend from rads before throwing an AI into the mix. I was also fearful of the AIs, but SEs (almost 3 of 5 yrs down) have been minor and can be managed.
0 -
I do agree that for many people side effects can be managed and are worth the extra protection. I feel lucky there is something I can do. My Mom died of bc when this option wasn't yet available. Very important to exercise - this was not a problem for me as I enjoy it. If you do not, do your best t find something you like to do that makes you move, well worth it.
0 -
CeliaC -- I think I can wait. I see OC on Wed later in the day after rads. I want to go over the reoccurance rate with him again and how much Al will decrease my chances of getting cancer somewhere else. At 100% ER+ and 90% PR+ I probably should at least give them a try.
0 -
I don't post super often anymore but I wanted to come back to this thread and say I am 3+ years on AI's and bounced around on drugs and generics and ended up switching to the brand name of Femara. It was challenging to source (had to go to a local pharmacy, no chains, need to fill in 30 day increments, they won't ship 90, etc) but I've now been on it about six months and my side effects are SO much better. I am not sure these days what ache or pain is from the Femara and what is just normal aging (and sudden menopause) but I am finding this to be totally tolerable, which is good because I am on it for the 10-year stint. But I wanted to share that if anyone is suffering or thinking of giving up, give the brand name a try and give it some time to do its thing.
0 -
KIDI919 - I too, had high +ER/PR, so decided I'd better at least try. Recommend (may need to ask your Dr to do this) a Dexascan to check your bone density, ideally before starting on AIs, as they can cause bone density issues for some. I had a Dexa around the same time as the mammo that first started my cancer journey. Please feel free to PM me if you have any questions. I have a good college pal who lives in Buffalo. When the weather breaks (i.e., no risk of snow) may make a trip north. (Grew up in far NE Ohio, so have had enough snow.)
0 -
I'm 2.5 months in on letrozole/femara. Had been quite terrified about side effects but so far they are not bad. Some fatigue, some hot flashes, sore knees, acid reflux, otherwise ok. I walk on the treadmill every day for 45 minutes and go to the gym to do weight bearing exercise every day for about 35-40 minutes. I'm concerned about weight gain and what I'm trying is to put off the first meal of the day until 8 or 9 and stop eating by 5 pm (that also helps with the acid reflux). I take the pill at 8:30 pm.
0 -
I had posted on another site and then I found this one. I know the side effects are different in everyone but wanted to hear some positive. I am only on day 4 of arimidex but am keeping positive. Has anyone use medical marijuana/. CBD product
0 -
Lgbert--it'll be interesting to see how others respond. In the meantime, just from reading a lot of other people's posts, what seems to benefit many are exercise, water, and sometimes Claritin. I'm about 15 months in and SEs are not bad at all. I think a little stiffer when I first get out of bed or get up from sitting for a long time, a little fatigue, but really that's it.
0 -
What SE does Claritin help with?
0 -
Hello, ladies
I have a question: do you start to take Als after you are done with radiation? Or at the same time? And is there a some specific time frame after a surgery (if you don't have chemo) that you must start Als ...if you decide to take them?
thank you!
0 -
I started Armidex one week after my radiation was completed. My RO wanted to make sure if I had any SEs from the radiation that it wasn't due to the Arimidex. My MO deferred to the RO.
0 -
I started right after radiation too.
0 -
Re: Claritin—some women swear it helps with bone/joint pain.
Re: AI timing—I finished rads early October. I started Anastrozole every other day in mid-November, and went to full dose December 1st. My MO didn’t seem to be in any rush. For a medication you’re going to be on at least five years, I’m sure a few weeks don’t matter.
0 -
I finished radiation in mid July 2018, got oophorectomy two weeks later, started AI two weeks after that. My MO wasnt in a rush either, and he really wanted me to be done with radiation first.
0 -
I finished rads 3/21/17 & started AI 4/5/17. Wanted to make sure SEs from radiation (fatigue is common towards the end & a couple weeks after) were "clear" before starting AI. For first week, took 1/2 pill (pills are tiny, so a little hard to split). MO was onboard with not rushing. If yours is not, remember, it is your body & ultimately your decision.
0 -
Lgbert - Re: Medical marijuana/CBD - On another topic, there is someone who uses these. Please let me know if you would like more info. I can reach out to her via PM & believe she will be happy to share.
0 -
Here's a 'Cannabis Basics' thread that might help.
https://community.breastcancer.org/forum/79/topics/874792?page=1
0 -
I am just finishing rads in the middle of next week and my MO wants me to wait four weeks before starting anastrozole so side effects of rads are over. My RO said there are a lot of different philosophies about when to start and deferred to her
0 -
I think I finished rads 1/18 and didn't start AI until 3/1. MO wanted me fully healed after rads. And she started me with taking it every other day for 6 weeks.
0
