FEMARA

grandma3X

Jerseygirl - AIs inhibit the enzyme Aromatase from producing estrogen, but have no effect on estrogen production by ovaries. You should be post-menopausal or on ovary suppression to take AIs. I'm not sure if AIs have any effect on ovarian cysts.

Novmoon

I have been on letrozole (Accord) for 14 months. Worse problems are aching hands, especially in the evening, and lumbar stenosis pain which has gradually been getting worse. Scheduled for MRI in another week for rule out bone cancer before proceeding with physical therapy. Sometimes I may have a couple hot flashes an hour and then go for days and not have any at all. Just this fall I noticed significant hair thinning too. After playing around with various times to take the letrozole, I found that it is best for me to take in the evening after supper. Since having surgery I had a terrible time going to sleep and staying asleep until my doc ordered Lunesta and now I sleep all night.

I asked my oncologist this week about letrozole protecting me from other cancers and he said it only works on the breast area. He also told me that my hair thinning had nothing to do with letrozole, but I continual read otherwise.

marijen

Novmoon, I think your doctor meant it only works on breast cancer which can be anywhere else in your body. Because a lot of stage IV are taking Letrozole. And did you ask him for an MRI or did he offer it on his own? That's foresight, finding out if you have bone cancer before sending you to PT.

dtad

Novmoon....Hair thinning is a very common side effect of anti hormones, It’s hard to believe your doc denied it. Also I think you misunderstood what the doc was saying about it not protecting you from metastasis to other body parts. It won’t protect you from other types of cancer but it will help to protect you from the breast cancer spreading to other parts of the body. Good luck to all

NotBrokenJustBent

Novmoon, your dr denying hair thinning as a side effect is outrageous.

Indigo29

novmoon, I hope everything comes back clear with the mri.

I’ve only been on letrezole for 7 weeks and the only side effect so far has been an increase in hot flashes. My oncologist did say that hair thinning was a possible side effect of anti hormone drugs. A friend suggested that I massage Amla oil into my scalp as it’s meant to stimulate hair growth and delay hair from going grey. Can’t say if it works or not as I have only been doing it for a little while but I’m sure that just by massaging the scalp, it stimulates the follicles and gets the blood flowing.

wintersocks

hair thinning is absolutely a side effect of Letrozole . For me it's been the hardest one.

Bliss58

Oh yes, Letrozole causes hair thinning. After all my bc treatments, it wasn't until 6 mos. on Letrozole that I noticed hair thinning in front near the hairline above my forehead. I agree, tell the MO hair thinning is absolutely a SE of this med!

2FUN

Remember letrozole decreases estrogen. All the normal things a woman experiences with aging /decreased estrogen will possibly happen with letrozole

Novmoon

Thank you all for your responses. It is so frustrating when you report SE and are told that the letrozole has nothing to do with them. I go to a hairdresser every month (been gray since my 30s) and always have her check for further thinning. She just says it is a good thing I had thick hair to begin with, that it is still okay, but I worry about the next few years.

Marijen, my orthopedic doctor gets the credit for ordering the MRI. She had seen me in the past for lower back pain before my BC dx, so I went back to her after it started getting worse, She felt I needed an MRI before proceeding with treatment, so MRI is Monday and I see her again on Wednesday.

I am up for new script soon. I am using the Accord brand but my new pharmacy says it can get Teva. Any thoughts on switching?

Thanks again!

Novmoon

HapB,

Sweet.

marijen

HapB, I did that. I brought two studies to the MO. One on AIs and joint pain, including trigger finger. The other on eyesight problems initiated by AIs which was authored by a doctor from their facility! She wrote in her notes that I had brought two pieces of paper from the Internet and never spoke of them again. Her friendliness has withered towards me since then.

marijen

I like my MO but she seems spread too thin and rushed. I think she has all kinds of cancer patients. I wish she could stick to breast cancer. Wouldn't it be nice if they kept up on the latest studies like we do. We seem to know more than them on the details opposed to Standard of Care. I also made the mistake of commenting on her fluttery hands-on exam last time. I asked her how she could find a lump that's deep and she said "it's hard" but don't hurt yourself trying?? I'm really sick to death of them touching me anyways.

marijen

No, I live in a metropolitan area and go to the best teaching hospital in the state. There you go.

Luckynumber47

Novmoon, I've taken Teva brand from the beginning and done very well with it. Supposedly it has fewer fillers than Accord

marijen

I took Teva brand and it wasn't as good as Roxane Labs which was bought out by Westward. Then I took Breckinridge and that was worse.

2FUN

I cannot believe you guys have such BAD health care practicioners!! All of my drs have not only been very informative about SE's, but they have been giving me ideas of things to try to keep them at bay!

Novmoon

I have had a couple episodes of a sore mouth recently, thinking it was related to something I was eating or drinking until I saw this article. Recently had thorough dental exam before this started and everything okay. Has anyone else had this?

Oral Health-Related Complications of Breast Cancer Treatment: Assessing Dental Hygienists' Knowledge and Professional Practice

Many dental hygienists were unaware of the recommended clinical guidelines for treating breast cancer patients and lacked specific knowledge pertaining to the commonly prescribed anti-estrogen medications for pre-and postmenopausal breast cancer patients. Over 70% of the respondents indicated they were unfamiliar with the AI class of medications. Only 13% of dental hygienists correctly identified the mechanism of action of anti-estrogen therapy. Dental hygienists reported increased gingival inflammation, gingival bleeding, periodontal pocketing, xerostomia and burning tissues in patients receiving anti-estrogen therapies. Less than 10% believed that their knowledge of breast cancer treatments and the oral side effects is up to date.

Responses concerning oral conditions associated with anti-estrogen therapy (n=276)

Anti-estrogen treatment	Dental Hygienists indicating treating patients with oral side effects	Specific reported side effects*
N	Percentages
Aromatase Inhibitors	17	7%	Gingival inflammation Xerostomia Burning tissues/mouth Joint pain Pain in hands – difficulty brushing Increase in periodontal pocketing
Tamoxifen	39	14%	Gingivitis Burning tissues/mouth Bleeding on probing Xerostomia Increased caries Pain in jaws Increase in periodontal pocketing

Hygeia

I am using the Accord brand, too, and have experienced the "jump start" on aging, i.e., rapid loss of hair, diminished visual acuity, cognitive problems, thinning of skin. Letrozole and I have been partners since April 2015. My question is this: Once we part ways after five years will I partially recover from estrogen deprivation? My MO told me straight away that my hair would not grow back (I developed frontal fibrosing alopecia and my face looks more and more like an egg). I'm 68 and was always slender and fit but now I feel like a limp noodle. What to do?

Hygeia

I am using the Accord brand, too, and have experienced the "jump start" on aging, i.e., rapid loss of hair, diminished visual acuity, cognitive problems, thinning of skin. Letrozole and I have been partners since April 2015. My question is this: Once we part ways after five years will I partially recover from estrogen deprivation? My MO told me straight away that my hair would not grow back (I developed frontal fibrosing alopecia and my face looks more and more like an egg). I'm 68 and was always slender and fit but now I feel like a limp noodle. What to do?

NotBrokenJustBent

Hygenia, you sound exactly like me. And even if we did recover after our treatment, then we must assume that the estrogen is circulating again and that doesn't sound like a good thing either.

My elderly mom has a prolapsed uterus and I was just on the net to do some research. Estrogen deprivation is one of a few causes. Something else to look forward to?

Bright55

hi maryj

i have been on letzrole for 18mths founds excessive running and workouts not good for muscles this causes the side effect of muscle ache and fatigue

So slower pace of brisk walk morebeneficial as is yoga and genlteexercise not fast repetitive movement

All best bright

Mimidi

I have taken FEMARA for seven years and plan to tell my oncologist I am coming off.

wintersocks

Mimidi

Why have you decided to come off it? - just curious as I am into my 6th year on this drug.

Novmoon

Just got a renewal on letrozole and was able to get Teva versus the Accord that I have been taking for 16 months. Will start on Sunday, so let's see if I notice a change.

pennsygal

Novmoon - I also unexpectedly got the Teva brand in my last refill. I’ve had less joint pain, and much less swelling and stiffness in my hands on waking. I’m shocked at the difference

Indigo29

Hello everyone, quick question; is insomnia a SE of letrezole / femara? And if so do you have any suggestions on how to get a decent nights sleep - I’m waking up every 2 hours and it’s driving me nuts!!. The hot flashes at night aren’t helping either

Bliss58

Indigo29, insomnia can be a SE of Letrozole for some. I do breathing exercises that help calm my mind and help me sleep, but if that doesn't work, I take Benedryl. Another drug, but oh well, I get some good sleep. Maybe try taking it in the morning instead of at night.

After sudden and severe knee joint pain/malfunction, my onc has now taken me off Letrozole. I tolerated the joint pain for the last couple months, getting shots and orthotics and using a cane, thinking I had tweaked the (left) knee somehow or my arthritis was really kicking in. After telling my onc at my last appt. that nothing was working to help my knee, she told me it could be the Letrozole! And, it is. I've been off it now for 10 days and have significant improvement; no longer walking with the cane. After two weeks off it, I'm to start Aromasin. So, I'm off to that thread and hope it'll work better for me. Take care all.

Indigo29

BJsmiller, thank you for the benedryl suggestion- anything for a decent nights sleep!!.

Recently, I’ve also recently been getting sharp pains whenever I pick anything up with my right hand. The pain shoots up from my wrist all the way up to my elbow. I wonder if that’s due to the letrezole . My oncologist said that the SE start around the 2nd month ,( which is where I’m at now ), of taking the anti hormone meds and peak around the 6 month mark which is very daunting .

I hope that the Aromasin treats you better

Mimidi

I am coming off because of my age(71) I want quality of life instead of quanity.