Doing Well on Aromatase Inhibitors (AIs)
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Welcome, NHCamping! We're glad you've joined us here, and hope you continue to find support here.
The Mods
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Thank you again Kaylie and bennybear for weighing in on my high heartrate issues. I see my Integrative oncologist tomorrow and I am having a CT angiogram done on Thursday to check my heart. It's just a trying journey not knowing if a symptom is due to chemo, rads, Anastrazole, sudden menopause (due to ooph), or a combo of all of the above or something totally unrelated. Hoping for answers and will report back if has anything to do with the Anastrazole.
I think you (we) are all courageous women, and manage our daily pills and their side effects with all the grace we can muster. I pray over and give thanks to my little pill each evening when I take it. Sending joy and love to all of you! 😃
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Hello fellow AI users! Regarding SEs, every night I wear a thumb splint on left hand (for trigger thumb) and wrist brace on right wrist (for carpal tunnel-like pain). I bought these at the local drug store. They took some getting used to, but it has really helped with that nighttime joint pain and I'm sleeping better. In morning, take off splint/brace, get my blood and joints moving, and all is well.
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just a note to encourage some, I’ve been taking Letrozole for 2.5 weeks with no noticeable side effects! I was so nervous about taking them and very excited so far to feel ok.
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You go girl!-keep that positive attitude -hugs,Kaylie{Candace}
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Hi Calee65, we started Letrozole at almost the same time (3 weeks yesterday for me) and I too am having no problems - touch wood! I am post menopausal (13 years now); wonder if that makes for an easier adjustment to the low estrogen levels? Fingers are crossed that the lack of side effects will continue...
akmom
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Calee65 and akmom - I've been on letrozole just a little longer than you two, going on 4 months now. No problems at all. I had some localized hip pain which was persistent, reported it to my MO and he eased my mind. It was arthritis - go figure...I'm ONLY 67 🤣. One thing my MO said (when I asked how to tell if pain is just arthritis, muscle pull, the usual daily stuff or letrozole side effect) was that the pain I had been having was very localized. The AI side effect pain tends to be more diffuse, wider spread
He said I'm tolerating the AI well and he also was confident this would continue. Fingers crossed for all of us. Like you, akmom, I'm guessing that being long out of menopause (17+ years for me) probably makes it easier on us.
Onward!
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kaylie, akmom, PatsyKB....I’m going to be 66 this at Christmas, and post menopausal too...but i will say I have hot flashes again with Letrozole...didn’t miss those, but if that’s all the SEs I get I’m ok with that! Hahahaha
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PatsyKB, thanks for sharing what your doctor told you about distinguishing possible side effects from our 'ordinary' joint and muscle pain, good to know.
I'm with you, Calee65 - I have been experiencing hot flashes off and on for the last 13 years so pretty confident I can handle a few more... (Never had the night sweats though, grateful for that.)
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You ladies on Letrozole, are you taking the name brand or a generic? If generic, what manufacturer? I might want to switch down the road.
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LMurphy, mine is “ACH-Letrozole” and the box says it's from Accord Healthcare Inc. in Quebec (I am in British Columbia; the drug is provided to me at no charge bythe BC Cancer Agency).
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Hello again ladies! Just had dexascan and bummed to learn I have osteopenia at 48. Been on anastrazole for 8 months now, and now discussing how we will prevent future bone loss. My MO passed this on to my GP to assist me with. GP said he prefers Prolia for osteo prevention, but when I asked about all I have read about bisphosphonates being beneficial to reducing bone mets he was unaware— understandably since he isn’t not an MO.....and said he would read up on it before we move forward which pleased me. So I thought I would of check I in with you ladies and your choices regarding such. I appreciate you sharing—thanks
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Imurphy
Femara is brand name, Letrozole is the generic..mine is made by Teva Pharmaceuticals and I get my prescription at Walmart. For every step of this horrible ordeal I’ve been told...”everyone’s body is different” so one manufacturer may work for me and not for you! Hope the first one works for everyone!!!
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Coach Vicky - I’m interested in your comments on Arimidex and nausea. I’ve been taking anastrozole since a year ago July with an assortment of pesky SEs. The past two weeks I’ve had an underlying nausea every day. Would it pop up now as an SE? Do these SEs come and go as we take the AI?
M
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Hi TapperMom38,
The information below is from chemocare.com with my comments in ( ). I am beginning to think no one really knows if Arimidex causes any side effects! I think so much has changed with my physical body and my emotional well-being since diagnosis, that whatever side effect I am experiencing could be attributed to tons of stuff. I work to be aware of what I am experiencing and then try to find the silver lining. For example, my hands and feet are stiff. The silver lining is that causes me to stretch every monring.
Important things to remember about the side effects of anastrozole:
- Most people do not experience all of the anastrozole side effects listed. (REALLY?)
- Anastrozole side effects are often predictable in terms of their onset, duration, and severity.
- Anastrozole side effects will improve after therapy is complete.
- Anastrozole side effects may be quite manageable: There are many options to help minimize or prevent the side effects of anastrozole.
The following side effects are common (occurring in greater than 30%) for patients taking Anastrozole:
- Hot Flashes
- Muscle/Joint pain
- Stomach upset (Greater than 30% experiencing upset stomach)
The following side effects are less common (occurring in 10-29%) for patients taking anastrozole:
- Decreased energy
- Mood disturbances
- Sore throat
- High blood pressure
- Depression
- Nausea (10% - 29% experiencing nausea. Looking at the extremes only, that could indicate 59% of Arimidex patients has stomach issues.)
- Vomiting (Now add another up to 29% of patients that vomit. I figure at the worse an affected patient would have an upset stomach that leads to nausea that leads to vomiting.)
- Rash
- Osteoporosis (Weak bones)
- Fractures
- Back pain
- Insomnia (Trouble sleeping)
- Headache
- Peripheral edema and lymphedema (fluid build-up)
- Dyspnea (difficulty breathing)
- Increased cough
My nausea started during chemo. I never vomited AND I took a boatload of Zofran. I have thrown up all my life with projectile vomiting. (BTW, my Momma thought I was allergic to my milk but that was way before anyone took that seriously.) So, I was committed to not throwing up. My Primary Care said he had never written a Rx for so much Zofran. My response was that I am handling the nausea. I take the generic mint flavored Zofran. It comes in a disgusting grape flavor of which I returned to my retail pharmacy insisting they take it back which they did. Who asks for something grape-flavored when they have nausea?. I am down to no more than 2 tablets a day and some days I can skip the pills.
I hope this helps.
Vicky
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I haven’t been on breast cancer.org lately, but thought I would share something I discovered about my anastrozole experience. I tend to have a dry cough fairly often usually when there’s lots of pollen in the air, but I’ve been able to live with it. I thought the AI was causing the pain in the back of my left knee, which hurt pretty badly when I’d get up anytime I had been sitting any more than 10 or 15 minutes. I started having a popping occasionally, so I went to my orthopedist, and it’s just arthritis, and no cartilage in that knee. Had a cortisone shot Wednesday, and while I wouldn’t say the pain is 100% gone, it’s at least 90%. Interesting what the doctor said about localized pain not being the AI. If I’d known that, I’d have had the shot 6 months ago. I do seem to be one of the 15% of people who have facial flushing after the injection, but my knee is so much better I can live with that. It’s already going away.
Good luck with your AI!
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Just got back from the Oncologist.
I have some questions.
Has anyone switched from Arimidex to Aromasin? Would you share what happened?
Any comments on Aromasin?
Thanks, Coach Vicky
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CoachV, I switched from anastrozole to exemestane in July. I had only been on anastrozole for 7 months but I complained so much to my MO that she had me take a month off last summer (she was sure I'd realize that my complaints were unrelated to the AI). She offered to switch me to exemestane in the event I didn't want to go back on anastrozole. (She didn't believe that Arimidex would be any easier to take than the generics.)
Within days, all my SEs lessened or vanished. My most significant issues (but not my only ones) had been unremitting muscle pain (particularly in my thighs) & fatigue. Both totally disappeared during my "vacation" & have not returned. On exemestane, my only SEs have been hot flashes/sweating. It's more intense than the hot flashes I had on anastrozole & the sweating (at least during the summer) was pretty extreme. (One of the listed possible SEs was unusual or increased sweating, so I guess I'm not alone.) I'd MUCH rather have that than the pain & fatigue I had on anastrozole! I have scheduled some sessions next month with an acupuncturist & hope that she may be able to provide some relief from the hot flashes & sweating but the sudden cooler weather seems to be helping too.
If my SEs don't change, I feel I could stay on this AI as long as necessary. I began a paleo diet after starting exemestane & I've even been able to lose some weight. Overall I feel great.
Let me know if I can answer anymore questions. And good luck to you!
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I just switched over to Aromasin a month ago. I don’t recognize any side effects yet. I was previously on tamoxifen. I tolerated that very well also. Well, at least I thought I did but my uterine thickening says otherwise. I didn’t have any symptoms of that either.
I’m concerned with bone loss on Aromasin but my MO said it had “slightly” lower bone loss issues. I have not researched that yet though. My first DEXA scan already shows osteopenia and one spot of osteoporosis so it is a major concern for me. I just saw the results online. Have not discussed my options for that yet
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My MO switched me from anastrazole to letrozole, which I haven't started yet (have been on a break from anastrazole for a while, then had my reconstruction revision surgery/fat grafting last week. JKL, your experience with aromasin makes me wonder if that will be the one that works for me.
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I just switched to aromasin after a year on anastrozole. My joint/muscle pain was getting worse, so MO suggested a switch. Its been 30 days, think its some better but still have joint/muscle pain. I am going to try a couple more months, see if improves any.
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BJI - Drink lots of water and try to up your exercise a little too - walk, swim, whatever. Water aerobics are big here. I absolutely know it makes a difference in my joint pain when I don't get moving.
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vicki, I took arimidex for 3-4 months struggling with fatigue from the beginning. Fatigue disappeared when i stopped for 2 weeks and didn’t return when i began aromasin. I’ve been on aromasin for 14 months or so. As I have said before once I started taking it in the morning insomnia disappeared. I’ve had hot flashes since i was diagnosed and had to stop HRT. I’ve seen a drop in frequency (6+ a day) and intensity (shirt change drenching) by reducing my white carb intake. Not willing to give up wine but do limit it and other sugars
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Ladies,
I am so very grateful for your sharing about Arimidex and Aromasin. I will ask my Oncologist for Aromasin on Monday. He recommended it on Friday when we met. I wanted to hear from others before saying yes. I figured if I wanted to know the real deal, I would find it from you ladies.
I do well on Arimidex. However, if there is an alternative that will be better I want it.
One more question ... are there generic vs brand name issues with Aromasin?
Hope all have had a good weekend.
Again, thank you.
Vicky
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Quick question Vicky to assist as I navigate my own AI trial and error issues..... can you please share which forms of Arimidex you tried and what SEs were different..... generic Anastrazole Accord or Teva and Arimidex itself? Did you try letrazole? Thanks bunches!
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MamaFelice
No to the Letrazole.
I first started Arimidex as Anastrozole by GSMS manufacture
on 4 April 2017. I switched to
Anastrozole by TEVA manufacture and in late June to the brand name due to the unmanageable
side effects. The biggest problem was weight gain and swelling. With that said, my thyroid dose was off and may have contributed to my state.I have managed Arimidex and I think another drug may be better. I can do this even if I stay on Arimidex and I would like it a little easier. I have 3 plus years to go and I will finish!
Coach Vicky
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Hi ladies,
Just checking in. So I have been in Arimidex (Anastrozole) for two solid months now. My main side effect is mild joint pain here and there -especially in my hands. I already had a bit of hand pain before and now it's a bit worse, but very manageable and I am not taking any medication for that. Also, it gets much better with swimming, which I try to do three times a week. No insomnia. No gain weight. No swelling. No depression. Hot flashes are minimal, but I am in a very low dose of Venlafaxine (Effexor, extended release version), which my psychiatrist credits for the minimal hot flashes and no depression -we will see when I wean off the Venlafaxine in a few months.
Not bad all in all. I expected worse. I will check my brand of Arimidex tonight and report.
Happy Monday to all,
LaughingGull
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I was 100%ER so I knew I could not avoid AI. I hate joint pain, weight gain, vertigo hot flashes, trigger finger and many more. I also know I have to take AI for 10 yrs.
knock on wood it has been 11 and a half months. Nov 5 of last year I started and have not skipped a single pill since then. 10% done. I am going to say prayers for me and all my sisters on this forum.
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Coach Vicky - Glad you had a lovely getaway. Please go easy on yourself. This AI journey is an arduous one.
Not looking forward to Med Onc visit on 10/26. Will see how it goes. He recommended acupuncture at last visit for joint relief. However, acupuncturist is a 45 min drive away & not covered by insurance. Still trying to get around to this. May try switching to the brand name. Recollect it is through Eagle Pharmacy for $1 per day.
How does one go about switching scrip to Eagle?
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