Nervous about switching from Letrazole to Exemestane
Hi - I have been on Letrazole for 2 years (invasive ductal carcinoma, node positive, did chemo and radiation, double mastectomy and oophorectomy...was diagnosed right after my 46th bday). Recently I've had neuropathy for the first time (it moves around/switches which limbs it affects...strangest thing). Ruled out metastasis with spine and brain MRI plus chest CT and bone scan (insurance wouldn't cover PET). Anyway, my oncologist said to try a "drug holiday" to see if the letrazole could be causing it. The numbness is noticeably better after a week off the letrazole (but not gone). He suggested I could switch to Exemestane to see if it solves the problem but I am nervous to make the change -- sort of feels like the devil you know is better than the devil you don't? My question is -- has anyone had a bad experience with Exemestane (beyond the obvious hot flashes/joint pain as I'm used to those?). I'm specifically nervous about the "mild androgenic effects" that it can have. I have lost my breasts and just finally grew my hair back out -- I don't want anything to make me feel any less feminine than I already do at times. Thanks for anything you can share!
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@mistymar Very interesting study you mention out of Sweden. Have used Claritin to help with bone pain after Neulasta injections to boost white blood counts and also used it to help with Zometa infusions. But this is the first time I've seen mention of it to help with cancer reoccurrence. Thanks for the heads-up on this as something to follow.
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1 Reaction@roberta75 Hi, I have a question for you. You said that you took Letrozole for over 5 years. When did you stop taking letrozole and how many years after you stopped were you diagnosed with a new Triple Negative BC ? I found out that among the 3 AIs, Letrozole is most potent drug that reduces the Estrogen up to 96%. I read it could prevent a recurrence for up to ten years. Is that not the case? Hope you are doing better every day.
Hi, I had my first estrogen positive progesterone positive cancer in 2017. I had a single mastectomy on my left breast with reconstruction Oct. 2017. I started Letrozole in Dec. 2017. I stopped the Letrozole in April 2023. I was diagnosed with triple negative breast cancer in my right breast May of 2025. I had a mastectomy on my right breast with reconstruction June 2025. No nodes in neither of my cancers were positive. I had 4 rounds of chemo from the end of July 2025 to the end of September 2025. So far I am doing fine. My hair has been growing back. I did continue exercising , walking and lifting weights through out these years. I have a wonderful trainer who has worked with me virtually. Thanks for your thoughts. It has been quite a journey. But, I feel very fortunate to have a caring medical team and I caught the cancers early.
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4 ReactionsNo I stopped Letrozole due to projectile vomiting so intense that it damages my ribs and caused blood to form in my face up to above my eyebrows and down to my neck. I was choking during this episode of 3 explosions in a row and coughed up this stuff for over 3 days from my lungs! So that was after 4 months with most of the symptoms but not much nausea!
So I see my oncologist in 2 weeks to see what else I maybe given. I am 75 years old and am level 1 ILC with no cancer in my lymph nodes and estrogen positive. i am not willing to take a medication that causes me more terrible symptoms that make what time I have in this world too miserable to enjoy!
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2 Reactions@angela2932, look into oral minoxidil—made a huge difference in my hair thickness.
@roberta75 Hi, Thank you for your quick response. It was a surprise to me that Letrozole only protected you for 2 years and you had suffered the side effects for 5 years. I am leaning on letrozole to protect me. But the side effects was very unpleasant. So I was asking my Oncologist if she can agree with me to take once every other day since Letrozole has 48 hours half life. It is not a legal practice but the evidence approved. She said No. Some doctors allow patients to do it basic on a small group research she said. Now I am worried because my was E+P+ Her2 _ No node involved. Onco 22 and diagnosed at age 68 in 2024. I had left mastectomy too without reconstruction. I guess you are much younger than me. I have requested to have bilateral mastectomy at beginning but was denied. Now every year I have to do mammogram that worried me very much. Anyway, I have to face what is coming. You are so brave. I thank you so much for sharing your experience.Please keep in touch and take care!
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1 ReactionHi, Letrozole only protects fron E+P+ cancer. My second cancer was E-P- and Her2-. Triple Negative Breast Cancer is more aggressive and is treated with chemo. There was no medication to follow. I was 70 with my first cancer and 77 when I was diagnosed with the TNBC. It was a complete surprise. The screening mammogram mentioned “focal asymmetry” possible ultra sound, come back in a year. I called for more information. Then I got a letter on My Chart saying your mammogram is normal come back in a year. I called my oncologist office and they order further testing. Then I got a letter on My Chart that said my mammogram was abnormal and I needed further testing. I had a more targeted mammogram and an ultra sound. Then I was told I needed a biopsy. TNBC 10-11 mm. My cancer journey wasn’t over.
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5 Reactions@roberta75 Hi, Thank you for sharing your detailed experience with me. This year in March. I had routine mammogram on my right side of breast. It showed that I had a 3x5mm cyst? looked like benign. The radiologist didn't let me go home. He ordered the Ultrasound immediately, showed the same 3x5mm it looked like benign cyst. The radiologist ordered to follow up in 6months. But my surgeon didn't take it seriously. I was really surprised why I am on letrozole I still got a benign cyst? Now I understood that new Ca can be different type. I will pursue it like you did to ask for MRI and biopsy next time. I feel bad for you too. Because our retirement should filled with joy and all kind of vacations. But our one is just going to see doctors, Do the surgeries, and chemo etc. Your journey wasn't over? What other treatment you need to have to do? I have no idea. I really admire your sprit and you are a very strong person. Hope you are going to finish the treatment soon and do NOT suffer too much. Take care, you will have a good life ahead of you.
@roberta75
Hey! I did not go on Letrozole too many complaints on this web site for me try that, so I went on Exemestane. I do it with a Propel water supplement with electrolytes. Works really well, try your medicine with Propel, it might work the same.