1. < Breast Cancer

Side effects of Letrozole after taking 2yrs

Posted by bizziemom @bizziemom, Mar 11 8:37pm

I have been on Letazole now for 2yrs following mastectomy. A few months after starting L, I developed atrial flutter. My cardiologist doesnt seem to think its related to any side effects of the L, but, I swear since taking it, my health has diminished over the 2yrs. Has anyone else felt thier health has diminished as well? To include dehydration and just overall feeling 'off' ? My blood presaure has increased some recently and I have not changed my eating habbits either.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 16 9:28am
In reply to @maxine50 "I have been taking Letrozole for 50 years. I'm still here." + (show)
@maxine50

I have been taking Letrozole for 50 years. I'm still here.

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@maxine50, I'm glad you're still here to tell your story. Letrozole was approved for use in breast cancer in 1996. Did you mean to say that you've been taking it for 5 years? Or was the 50 years referring to something else?

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Mentor
Chris, Volunteer Mentor | @auntieoakley | Mar 16 9:42am
In reply to @semurrey "I've also been on Letrozole 2 yrs and I would say the last month my fatigue..." + (show)
@semurrey

I've also been on Letrozole 2 yrs and I would say the last month my fatigue as all time high - I am 59 years old, had lumpectomy for ILC in Nov 2022, Radiation completed Feb 2023 at Dana Farber, Boston and started Letrozole. Joint pain I have managed via lot of walking but deep in osteoporosis now and on Zometa infusions to help improve bone density. Along with extremely dry red eye and all the crappy menopause results that are more pronounced on Letrozole I try not to complain as I'm glad there is something I can take but the fatigue has really zapped me - some days just hard to get out of bed - reduced work etc. I see NP oncology for follow up on April 1 and I'm thinking she will suggest switching to one of the other 2 aromatase inhibitors but that could bring host of new symptoms. I do yoga etc but maybe this in new norm - I have 8 more years on Letrozole - any advice out there...oxoxoxo

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Yes, please talk your doctor. Like @frenchtoasted429 said they usually have some insight and options. Fatigue is the hardest part for me in this BC journey. I was always an energizer bunny and I detest not having the energy to do all the things in a day I want to do. Just pushing through is no longer an option.
I have only one variation from the above advice. For me, the tea is caffeinated black tea, I could never make it through the day without a little chemistry. 😂.
It sounds like you do a lot in a day, any chance you can just let yourself rest up a bit until you can talk to your doctor?

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salamander | @salamander | Mar 16 12:02pm
In reply to @frenchtoasted429 "I took letrozole for over 15 years, was in recovery from breast cancer (lumpectomy) in 2005..." + (show)
@frenchtoasted429

I took letrozole for over 15 years, was in recovery from breast cancer (lumpectomy) in 2005 ....had a great run until 2024, when I was diagnosed again with breast cancer, same breast. I had a double masectomy at that point. no chemo, no radiation - and I'm taking letrozole again. Ask your doctor about adding some vitamins, especially B6 and B12 (also D3) It really helps with fatigue. Don't overtake either one, look up your age and take that amount, unless your doctor says differently. I really believe letrozole staved off getting cancer again, and that I should have never stopped taking it. The side affects definitely outweigh getting breast cancer again. Non-caffeine herbal teas also are helpful, especially in the mid-afternoon. Good luck and hang in there....

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Can I ask how old you are and were when you were diagnosed?
I am 54 and not take meds.

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frenchtoasted429 | @frenchtoasted429 | Mar 16 1:09pm

the first time I was diagnosed I had just turned 50. this last time I had almost 19 years inbetween being diagnosed again. I take letrozole 2.5 - it's a low dose, still does what it has to, and has less (for me) side effects. When the drs. told me I didn't have to take it anymore (after about 12 yrs) I felt I should keep taking it, but didn't. I am kind of positive that stopping the drug caused the cancer to come back. But that's just my opinion/gut feeling. Good luck, ask lots of questions, you can never learn too much and always be your own advocate.

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kpederso | @kpederso | Mar 17 8:08am

Yes, my health has deteriorated; sore knees, confusion at times, weakness, general aches & pains. I stopped taking AI’s 6 mos. , ago

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jenyu | @jenyu | Mar 17 10:50am

I took Letrozole from 6 months ago and ribociclib from 5 months ago. From the 4th month of taking letrozole and 3rd month of ribociclib, I found my heartbeats quickly and irregularly, which may be atrial flutter. My oncologist does not think it relates with the two medications. She suggests me drink a lot of water and do some exercise. I did and it helps, But my heartbeat is still around 10 pulse more per minute than before. My EKG report of last month showed irregular heartbeats. My cardiologist confirmed that both letrozole and ribociclib may have side effects on heartbeat. So he will do more tests on me and see how my condition goes. If my condition gets worse, I may stop either medication for a while and use alternative ones.
I suggest you find a good cardiologist to monitor your hear problem. On the Mayo clinic website, the letrozole side effects includes fast heartbeat and heart attack, though they are rare: https://www.mayoclinic.org/drugs-supplements/letrozole-oral-route/description/drg-20067579

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segm | @semurrey | Mar 18 4:33pm
In reply to @frenchtoasted429 "the first time I was diagnosed I had just turned 50. this last time I had..." + (show)
@frenchtoasted429

the first time I was diagnosed I had just turned 50. this last time I had almost 19 years inbetween being diagnosed again. I take letrozole 2.5 - it's a low dose, still does what it has to, and has less (for me) side effects. When the drs. told me I didn't have to take it anymore (after about 12 yrs) I felt I should keep taking it, but didn't. I am kind of positive that stopping the drug caused the cancer to come back. But that's just my opinion/gut feeling. Good luck, ask lots of questions, you can never learn too much and always be your own advocate.

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Thanks so much for sharing! You are an inspiration for me as I try to tell myself each day that the Letrozole is helping me but some days hard and only two years in at 59 yrs I guess I have a new norm. I had invasive lobular cancer and sounds like protocol now is 10 yrs as lobular unfortunately is easy to miss on any imaging (MRI or CT scan sounds like the best based on lobular experts) and often reoccurs much later than ductal. How would we know if we gain an intolerance to letrozole -early detection is all we have so may I ask how after almost 19 yrs your reoccurrence was found - mammogram? I had a lumpectomy and after learning more about lobular over the last 2.5 yrs I sometimes wish I had a mastectomy but I'm trying not to look back. I do take a good multivitamin, and 2000 IU Vit D. Since I have osteoporosis I am now on Zometa (have second infusion in April) which I feel might add to fatigue. Thanks again for all of you sharing. oxoxoxo

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