FEMARA
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I have vertical ridges on 9 nails and horizontal on the L thumb; I didn't notice them until after chemo and probably a year or so into Letrozole. I'm heading into the last 4 months of 5 years and I don't plan at this point to continue. I'm struggling every day with chronic fatigue from 5 years of poor sleep, loss of cognition that makes work more stressful - I get headaches trying to concentrate at work when I'm having particularly bad brain fog days. And I have more days now when I just feel low, probably depressed, because even though I was Stage 1A with negative nodes, I had a high Oncotype score so I feel doomed a lot of the time. It has really changed my life in a bad way; I don't think these doctors appreciate what it's like to have to deal with this hanging over our heads the rest of our lives, as well as dealing with the multiple effects on the entire body from estrogen deprivation. Every time I have a new problem I google it along with 'aromatase inhibitors' and sure enough, I find links that my doctors don't seem to be aware of. The latest is extremely dry eyes, particularly when I put contact lenses in early morning. I mentioned it to my opthalmologist and he was clueless, yet there are NIH papers on AI's and dry eye syndrome. I hope future generations don't have to put up with this b.s.
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it is safe to take up to 10mg of Biotin and that's what I take. My nails are in good shape and my thinning hair slowed down and is getting thicker. I've been on femara since 1/16 along with Ibrance. Hope the Biotin helps others as it has me
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For nails try nailtiques. Works really well and has different formulas . Don't buy nail techs which doesn't work as well. My dermatologist recommended 5000mcg of biotin hair and nails. I have genentically thin hair so it helps. I also use Shea Moisture products
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How can we tell what our ER% is? I know from my Oncotype that I am 7.4 on the scale (up to 12), where <6.4 is considered ER negative. I am PR negative....
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My MO summary for my consult visit said ER+ 90%; PR+ 90% and HER2- negative1+
My Oncotype had ER 9.9 positive; PR 8.1 positive; HER2 10.1 negative; Overall recurrence score 11
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Do we have a chemist here?
Ethylene glycol is used in anti-freeze.
Polyethylene Glycol is used in laxatives.... and letrozole - inactive ingredient. My Breck letrozole has Polyethylene Glycol 8000, Accord letrozole has Polyethylene Glycol 400.
Roxane had none (not made anymore) Teva has none. Could this be the reason for more joint pain? Anyone? Antidoe to Ethylene glycol is Vodka, btw. Just tripped over this info today....
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So I need input, I'm not happy with Breck letrozole, which should I go with? Teva or Accord? Please.
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If you can get Teva, that's what I would go for. My pharmacy will order it for me but not all of them will. I have never tried Accord but started on Teva at first because that's what I was given before I knew anything about these drugs. Most here seem to prefer Teva. My biggest reason for not trying Accord is because it has more lactose in it and I'm lactose intolerant. Hope this helps, I'm sure others may weigh in
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Thank you Faith, yes I hope others weigh in. According to my Safeway Pharmacy I can get whatever I want as long as my MO indicates it on the prescription. Then they have to order it. Roxane was so good, I don't understand why they won't make it at West Ward
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I take Teva and get it at my Walmart pharmacy. Anastrozole was killing my joints after 7 mos. to where I was walking with a cane. MO switched me to Letrozole and I just happened to get the Teva brand before I read about the differences in fillers, etc. From what I've read from others, Teva seems to be best after Roxane. I'm tolerating it pretty well and have been on it for 9 mos. now. Achy joints were much better within a week and no more cane.
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All I can get now is Accord, but inexplicably my co-pay went down from $9 to $4.50. Not lactose-intolerant, but I do have triggering of my R index finger as well as intensification of L metatarsal pain (before letrozole, I had completely recovered from a “march fracture"), intermittent meralgia paresthetica (L quad burning) after long periods sitting in a theater or stadium seat; and intermittent pain in both knees. As there is no cartilage in either knee—just titanium & teflon—I know it's not arthritis, and therefore not joint damage. It'll probably resolve once I go off the drug (hopefully, not before I'm supposed to). But all my nails have vertical ridges now, and one tends to split from the tip down along a ridge (alas, it's my “picking" nail for guitar). My L hand nails had been thin ever since an incompetent non-English-speaking tech in a mall nail mill didn't listen to me when I told her I wanted only polish, not acrylics, on my L hand nails—she started roughing them up with a Dremel tool to prepare them for acrylics; I've had to have enhancements (gel now) on that hand ever since because they're thin, ridged and white-streaked.. But around the time I was diagnosed, that's when the ridges began to show up on my R hand as well. My current nail tech (to whom I've gone for the last 8 years, and who doesn't do acrylics or use power tools) says that she often sees nails weaken in her clients who have cancer—sometimes before diagnosis. (BTW, she knows about lymphedema and doesn’t cut my cuticles or even push the R hand ones back—on my R arm, she massages from the elbow down to the hand).
So I looked up “vertical ridges in nails," because the shape & appearance of your nails can be a sign of systemic disease. Know what every site I checked said? The most common cause is “aging." And what happens when women age? All together now: estrogen decreases. Sigh. Yes. It's the letrozole. If you already had ridges before, the letrozole only made them more pronounced. Can they be reversed? Nope. Estrogen deprivation alters the way your nails grow from the invisible “beds" between the cuticle and distal knuckle. Over the years, the beds have less moisture in the “template” (analogous to the dies of an extruder pasta machine) so that it actually permanently changes shape, and that manifests as ridges or grooves as the nails become visible. All you can do is camouflage—with either a ridge-filling base coat and opaque polish, gels, or “no-chip manicures" (which, as a less viscous form of gel, are the consistency of regular polish). Or go bare and call them “racing stripes."
Before I went back actively into playing guitar (I was playing mostly bass at the time) I didn't need to reinforce my R hand nails. But they were soft and tended to tear horizontally. So on the advice of an old-school hair salon manicurist, I began using Nailtiques (formula 2-1/2, for extra-weak and soft nails). Worked like a charm…until I began playing guitar again. I detest fingerpicks, because they are too loud, get lost, and I can't sufficiently feel the strings to avoid making mistakes. I did one gig with just Nailtiques and hardener, and after one 45-minute set I had already worn a notch in the nail. That's when I began getting acrylics. I got fed up with them after the Dremel-tool incident, and switched to what I'd thought were “gels" (but turned out to just be acrylics with a special coating that dried clear under UV light). One day down in FL my nails were shredded to bits, and as I left the office of the lawyer for my mom's estate, I asked if he knew any nail salons nearby that did gel nail fills. He called his wife and gave me an address. Imagine my surprise when the manicurist soaked off the remaining faux-gel instead of doing “fills" on the new growth, and painted on first clear and then pink & white gels from little pots—no tools, no fumes, no powder-and-solvent stuff. When I got back to Chicago, I sought out a similar salon, and here I am 8 yrs. later. If I ever retire from playing guitar (or use only a flatpick), I will go back to either Nailtiques and regular polish or no-chip manicures.
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Thanks Bjsmiller Chisandy didn't you take Teva when you couldn't get Roxane in the beginning?
I have the verticle nail ridges. I've noticed them more recently after I had to switch from Roxane. They aren't bad yet, but decreased estrogen speeds up aging for sure.
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I am not sure if you can get the teva version of femera any more. I used to get it at Sam's Club, and the last two refills they gave me accord. The only possible side effect I have had from the accord is dry eyes. I have had dry eyes for a long time, but in the last month they have gotten worse, and I finally broke down and bought a bottle of systane ultra, and when I use it my eyes feel better. My eyes also feel better when I don't spend a lot of time online. I am overdue to go to the cornea specialist, and so I might ask him if he knows anything about femera causing dry eyes. It seems like my eyes are getting really gritty too. I hope that does not mean that my Fuch's corneal dystrophy has gotten worse. I also have some joint pain, but I had joint pain before I went on the femera. It is not bad enough to consider quitting the femera.
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Hi Peaches, No I do not want dry eyes. thank you. So Safeway sends an order out for stock and they take what they get. Right now they get Breck (so I tried it) and Teva. Since I don't want the Breck this next time I need to ask my MO for a new prescription indicating Teva only. Or I might get Breck again. Then Safeway will order it specifically. The reason they give you whatever they get is due to pricing contracts which change often. It's a very complicated process. But they assured me they can get Teva for me, or Accord. I didn't ask about the others, there are about twelve I think. Going back to opthamalogist in two weeks for DFE Dilated Fundus exam with the drops that I can't see for several hours afterwards..
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I'm in year 5 of using Letrozole (was on Anastrazole for about 14 months 2015-16) and this year have developed 'morning dry eye' - about 40 minutes after inserting contact lenses in the morning both eyes start to feel very gritty to the point I usually have to remove the lenses and put in Refresh drops or sometimes leave them out for a while. I asked my opthalmalogist about it last month but he was unaware so I googled 'dry eyes and aromatase inhibitors' and came up with several research papers on 'dry eye syndrome in aromatase inhibitor users'. Most of the research focused on anastrazole but in general the finger is pointed at all of them. I've developed a couple of eye issues in the last year and a half, episcleritis last year and vitreous hemorrhage with a large floater this year. Additional googling found a number of research articles linking AI use to increased floaters/vitreous hemorrhages. I switched to using Refresh eye drops instead of saline in the morning when inserting the contacts. It's likely due to taking Letrozole at night, but I had to switch to nights because of severe nausea and dizziness during the day when I took it in the morning. Anastrazole was too severe for me no matter what time I took it - much worse joint pain, insomnia w/hot flashes and arthritis in fingers and toes. I couldn't have made it 5 years with that drug. Hoping I can hang on through the end of the year with Letrozole. Best to all.
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from what I've read it's possible you can go blind overnight. I would get off it now not wait until your five year date. There are a couple of topics on vision problems and blurry vision. We discussed these eye problems recently. You can do a search. I have PVD Posterior Vitreous Detachment in both eyes and vitreaous hazing. The detachment was a clean break. I will be discussing it with my MO in a week. Good luck. I have one good article on Is and eyes. It's posted somewhere...
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Soothe XP by Bausch and Lomb works great on dry eyes. Has mineral oil in it.
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Published in Oncology
Journal Scan / Research · July 20, 2017
Risk of Fatty Liver and Lipid Changes With Tamoxifen vs Aromatase Inhibitors in Postmenopausal Women With Early Breast Cancer
- European Journal of Cancer
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http://www.practiceupdate.com/C/55845/56?elsca1=em...
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I am getting checked regularly by an opthalmalogist specifically monitoring the recent hemorrhage site for signs of retinal detachment. According to him, I'm progressing well and there is no sign of pending detachment. Thanks for the article link and also thanks GrandmaV for the eye drop recommendation - I'll look for that on my Target run this weekend or get it on Amazon if Target doesn't have it. All things considered, since I am this close to the goal line, I may just stop before my October finish date. The toll of this drug has been significant with some now permanent damage like the arthritis, I have memory problems now which I think are not so much age related but due to not getting good sleep for the last 5 years. The joint pain, chronic fatigue, urogenital atrophy with no libido, recurrent bacterial vaginosis, eye hemorrhages & floaters - and that's just the SE's I can think of at the moment. In some ways I think at least for myself this drug has been worse than chemo - at least that was over after 3 months and most of the SE's were gone in a few months. 5 years on this drug has felt like a prison sentence.
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Marjen what I found interesting is that they both can cause those issues. I knew that but good to have confirmation
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Since being on Letrozole, I've experienced my right eyelid sticking to my eyeball a couple times when I first open my eye in the morning which really hurts! I'm assuming it's from dry eyes, so, now I always massage my eyelid before opening my eye. I need to have my eyes examined soon anyway, so I'll ask the dr. about it. In the meantime, I should probably get some drops. My eyes do water and I've heard that can be dry eyes even though it seems counterintuitive.
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bjsmiller, have you seen an opthamologist? I would think deeper to what's happening inside your eyes. Could the dryness be causing shrinkage that will cause your eyeball to detach from your retina? Or other things I don't know exactly how the dryness can affect your eye health, just suggesting you get an exam..
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Complications
By Mayo Clinic StaffPeople who have dry eyes may experience these complications:
- Eye infections. Your tears protect the surface of your eyes from infection. Without adequate tears, you may have an increased risk of eye infection.
- Damage to the surface of your eyes. If left untreated, severe dry eyes may lead to eye inflammation, abrasion of the corneal surface, corneal ulcer and vision problems.
- Decreased quality of life. Dry eyes can make it difficult to perform everyday activities, such as reading.
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Bjsmiller, I've had the sticky eyelid as well on Letrozole, it started around year 3 and I'm in year 5 now. It doesn't happen as much but it still does occur. I've also developed morning dry eye and other eye issues so I'm seeing an Ophthalmologist regularly, in addition to using dry eye drops. I wear contacts and have always had rather dry eyes so Letrozole has made that worse.
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What Causes Dry Eyes
Dry eyes are caused by a lack of adequate tears. Your tears are a complex mixture of water, fatty oils, and mucus. This mixture helps make the surface of your eyes smooth and clear, and it helps protect your eyes from infection.
For some people, the cause of dry eyes is an imbalance in the composition of their tears. Other people don't produce enough tears to keep their eyes comfortably lubricated. Eyelid problems, medications and other causes, such as environmental factors, also can lead to dry eyes. Poor tear quality
The tear film has three basic layers: oil, water, and mucus. Problems with any of these layers can cause dry eyes symptoms.
- Oil
The outer layer of the tear film, produced by small glands on the edge of your eyelids, contains fatty oils called lipids. These smooth the tear surface and slow evaporation of the middle watery layer. If your oil glands don't produce enough oil, the watery layer evaporates too quickly, causing dry eyes. Dry eyes are common in people whose glands are clogged. This dysfunction is more common in people with inflammation along the edge of their eyelids, rosacea, and other skin disorders. - Water
The middle layer is mostly water with a little bit of salt. This layer, produced by the tear glands, cleanses your eyes and washes away foreign particles or irritants. If your eye produces inadequate amounts of water, the oil and mucous layers can touch and cause a stringy discharge. - Mucus
The inner layer of mucus helps spread tears evenly over the surface of your eyes. If you don't have enough mucus to cover your eyes, dry spots can form on the front surface of the eye.
Decreased tear production
Dry eyes can occur when you're unable to produce enough tears. You may not produce enough tears if you:
- Are older than 50.
Tear production tends to diminish as you get older. Dry eyes are common in people older than 50. - Are a postmenopausal woman.
A lack of tears is more common among women, especially after menopause. This may be due in part to hormonal changes. - Have a medical condition that reduces your tear production.
Dry eyes are also associated with some medical conditions such as diabetes, rheumatoid arthritis, lupus, scleroderma, Sjogren's syndrome, thyroid disorders and vitamin A deficiency. - Have had laser eye surgery.
Refractive eye surgeries such LASIK surgery may cause decreased tear production and dry eyes. Symptoms of dry eyes related to these procedures are usually temporary. - Have tear gland damage.
Damage to the tear glands from inflammation or radiation can hamper tear production.
Eyelid problems
Blinking spreads a continuous thin film of tears across the surface of your eyes. If you have an eyelid problem that makes it difficult to blink, tears may not be spread across your eye adequately or your tears may evaporate too quickly, causing dry eyes. Eyelid problems can include an out-turning of the lids (ectropion) or an in-turning of the lids (entropion).
Medications that cause dry eyes
Medications that can cause dry eyes include:
- Some drugs used to treat high blood pressure
- Antihistamines and decongestants
- Hormone replacement therapy
- Certain antidepressants
- Isotretinoin-type drugs for treatment of acne
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Thanks for the info, Marijen. I haven't even been on Letrozole for a year yet; started last October. I'm planning to see my eye dr., but with all my other appts. last week, I forgot to call. That's my priority Monday, but I probably won't get in now until August.
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I am having hot flashes and e treme night sweats. Any suggestions? Makes me not want to take medicine
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what do uou mean go blind overnight? From the med?
I tore my retina and had surgery and Ive only been on the med 3 weeks. This happened 2 weeks after my radiation ended. I am terrified about my eyes. I dont want eye issues. Can you advise
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Shedda, Did they say how your retina tore? I am not an eye expert but what I posted is what I've read. Here's an example. If you want more information please do a search. And there is a study about AI medication and the eyes. My Vitreous has detached from my retina, now my vision is hazy - vitreous clouding. No tear though.
This is posted at Femara and vision problem
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC32058...More at:
https://nei.nih.gov/health/retinaldetach/retinalde...
Retinal Detachment Defined
What is retinal detachment?
The retina is the light-sensitive layer of tissue that lines the inside of the eye and sends visual messages through the optic nerve to the brain. When the retina detaches, it is lifted or pulled from its normal position. If not promptly treated, retinal detachment can cause permanent vision loss.
In some cases there may be small areas of the retina that are torn. These areas, called retinal tears or retinal breaks, can lead to retinal detachment.
Frequently Asked Questions about Retinal Detachment
What are the different types of retinal detachment?
There are three different types of retinal detachment:
Rhegmatogenous [reg-ma-TAH-jenous]—A tear or break in the retina allows fluid to get under the retina and separate it from the retinal pigment epithelium (RPE), the pigmented cell layer that nourishes the retina. These types of retinal detachments are the most common.
Tractional—In this type of detachment, scar tissue on the retina's surface contracts and causes the retina to separate from the RPE. This type of detachment is less common.
Exudative—Frequently caused by retinal diseases, including inflammatory disorders and injury/trauma to the eye. In this type, fluid leaks into the area underneath the retina, but there are no tears or breaks in the retina.
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I am just stopping by to share that at 2.5 years of Femara use my bilateral leg joint pain/stiffness has truly escalated and when I first get up from a chair or from bed I can barely walk, it improves as I move however. I was walking 4 miles a day until I blew my knee out doing P90X so I am sure some weight gain hasn't helped.... yikes this isn't for wimps.
The one thing I found to use where I do not get any more UTIs and there is no "have to get to the bathroom in a hurry" is Luvena, it is over the counter and I found out about it at a nurse practitioner conference. Not hawking a product from any perspective here other than my experience but have shared it with patients who say it is really helpful. Again, not getting "kickbacks" it is totally just telling anyone who has had this problem.
My onc says I can stop the Femara if I want but on it my chance of recurrence is 1% and off it is 13%. To me so far seems worth staying on it, he did say the most current literature supports using 5 years, my other onc had said 10 so that was interesting.
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