FEMARA
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Looking for thoughts from people on this thread. What kind of calcium supplements do you take? I have been taking calcium (, nothing fancy just citracal from my local Walgreens) , vitamin d, and vitamin K2. All this to help maintain my bone density. But I had heard some thoughts that plant-based calcium like from algea is better than regular type calcium supplements. I know there's some pretty knowledgeable people here, your thoughts?
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For those experiencing the mouth sores, try a 50/50 mix of regular liquid Benadryl and Mylanta. You can apply it with a clean q-tip to each individual site or swish with it. Just don’t rinse after.
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my doctor recommended me what to take
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Help please! I've been on Letrozole for 5 years now. I was going to take it 7 years but now I'm having problems with the insurance. We switched to MCR and Humana PART D on Jan 1st. They're refusing to pay for Osphena which takes care of many SEs from the letrozole for me. The price per month without insurance is $270 per month They say they will pay for Premarin which is not the same thing at all or I need a different diagnosis code from the doctor. Now the fun part begins. My MO left the practice in Nov rather suddenly. The nurse practitioner is OK I guess but she has not responded to calls in over a week now. I don't think they've replaced the MO yet. Does anyone know what diagnosis code would work so I can give her a heads up? I took my last pill last night and can't tolerate the letrozole without the Osphena. TIA
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What is MCR? When I had Medicare advantage I fought the code battle with the insurance for a bone scan and diagnostic mammogram. My doctors office stood on their head but Aetna kept saying wrong code. I gave up. Long story short-one year later I was metastatic. I went back to traditional Medicare with AARP supplements and have breezed through since. I hate to say that I've heard people have had to be careful with Humana supplement. Try not to stress about missing a few pills until you get it resolved. Please post your progress. It's an important issue. Hugs and peace. J
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GraceB1 - as a temp fix, check the price for Osphena at GoodRx.com. Anyone can use it and pharmacies have to honor it. Osphena is $227 at Costco where I live. If you get in a pinch, you can ask your Dr to send your Rx to whatever store is cheapest near you - you can also ask for less than a 30 day supply. Play around with the dosage and pill amount on the GoodRx site. Sometimes twice the number of pills at half the dose is cheaper. You can ask your Dr to write the Rx so you get the better price.
Lanne
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GraceB1,
I'm amazed that anyone would suggest Premarin. Don't they know that the whole point of Femara is to reduce estrogen? Yikes!
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I have recently begun using premarin - small dab once or twice a week - and find it is extremely helpful for local symptoms. Although the pharmacist questioned it given diagnosis and hormone meds both my MO and a JHU expert second opinion doc say it is OK to use, amount very small, not systemic, and will not counteract the letrozole/ibrance combination I am on for MBC. I was diagnosed with MBC in September 2018 after going to ER to rule out pulmonary emboli because of chest and rib pain and shortness of breath. Finishing my 4th round of letrozole and ibrance now, and have had my tumor markers go down dramatically every month (at 636 now) and big decrease in pain symptoms and shortness of breath, so meds seem to be working.
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Has anyone noticed teeth pain on femara? It starts a couple hours after i take it and is gone in the morning. Im taking it before bed. Its been pretty consistent for 4 or 5 days. And i started taking femara on January 8th. I haven't added calcium yet but im starting this week. I'm hoping it doesn't mean my bones are getting zapped. Other than that, mild dizziness and headache and a little nausea...all tolerable so not too bad so far!
Thank you for any replies!
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Cjzach...I do not take anti hormones but there are others on this forum who have had dental issues on it. Hopefully one of them will come along and let you know. Good luck and keep us posted.
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Cjzach, I can only speak from my experiences but I’ve on it since last June, so 6 months thus far. I mentally “scan” myself for “what’s new/out of the ordinary/problematic” regularly to see if any of the possible SEs are emerging. Nope. No side effects whatsoever including any dental issues. Just had my dental hygiene appointment and all’s well.
I hope you get the the bottom of your problem and that it proves to be unrelated to the meds. Keep us posted.
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Ladies
Question , in the last year my White blood cell has went down from normal to low.,
I think I have the normal side effects of Letrozole knee, wrist and hip pain , other then that I feel fine
but low white blood count is one I had not read before .
Has anyone elece experienced low WBC while on Letrozole and if so what was the outcome .
Thanks
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Years ago mine was on the low end of normal but resolved on itsown.
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Anyone noticed hurting teeth and insomnia? And also im finding more and more hair on my arms and hands when i shower.
Thanks all!
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I never slept and my onc prescribed tamazapam. Doesn't cause you to fall asleep but helps you remain asleep . My hair thinned horribly
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I had pretty bad insomnia for the first few months. I was taking my letrozole in the early evening, after work. I've switched to taking it around noon and am having fewer sleep problems. I also take 3 mg melatonin about an hour before bed and I swear by it. I took melatonin off and on for years even before bc and it always helped.
I have definitely noticed more hair shedding. Even my hair dresser noticed that my naturally thick hair feels a lot lighter. It's not too bad yet though, in the big scheme of things.
Hard for me to believe, but today marks one year on letrozole. I was very skeptical when my MO told me that some of the SEs lessen or go away over time, but I'm finding it's true. I was miserable at first. The one thing I still struggle to manage is the joint pain, but I do the things that seem to help me: Arnica gel, CBD oil, glucosamine, omega-3, minimal sugar and refined carbs in my diet, gentle yoga, etc. I know we're all different but this works for me.
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21 months on AI's. Switched from arimidex to letrozole in Oct. because of headaches. MO gave me something for the hot flashes. Hair is definitely thinning and texture is changing but now that I have the hot flashes under control I'm happy in my growing hat collection. Joint pain manageable with OTC drugs and exercise. I'm 72 and still have all my original knees, hips etc. which is more than many of my friends can say!
Sleep is generally good but when I don't fall asleep fairly qucikly, I get up and read for awhile. I do take my pill in the morning - it works better with my day and my other medication.
MO's goal was for me to keep my weight stable (although I am on the chunky side) and I have without a lot of diet changes.
If femora isn't working for you, speak up. We each react differently to the different drugs and even the different manufacturers.
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Hello ladies, I have been on letrozole + lupron shot for 2 months. Also I'm recovering from BMX+ Diep surgery that was performed 2 weeks ago. Since last couple of days l am having back pain. It starts towards late afternoon. I have appointments with PS and MO this week when I will consult with them. But want to know approximately when the SEs start for letrozole? I didn't have any issues till now. Not sure if it is because of just sitting and lying around that I have been doing since surgery ( I am walking around and doing daily activities too, but not yet as active as I was before surgery) or if letrozole SEs are hitting now after 2 months. Anyone faced such issue and what was done to remediate it? Thanks!
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Beingpositive - My experience from a year of letrozole is that some side effects start early and disappear, some are not present at first but crop later on and some are ongoing from beginning to now. I have not had back pain. But at first I had sore hands and painful joints and general stiffness which I noticed when I stood up. Those issues except for general stiffness went away after a few months. Recently my hair has been thinning a lot and as I understand it this hair loss is permanent which is beyond distressing. Who knows about bones deterioration as we can't see or feel that? I hope you get some relief and whatever is causing it, is temporary. Polly
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Polly, I have not heard that the hair thinning is permanent.
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BeingPositive, I've had quite a bit of back pain, but it was a problem for me since before BC and letrozole.
I started Lupron with letrozole in April of 2018, had oophorectomy in August, and now continue with letrozole only. I'm going to say that the worst of my SE didn't start until I had oophorectomy. Not sure if it was the surgery itself, or just the amount of time I was taking letrozole, but September and October of last year were the worst for me. Since then, a lot of SE have improved (I used to be lightheaded all the time, and now I only get it when I'm really tired). I do continue to experience joint and muscle pain though. Mine moves around, but I'm quite frustrated with some body part hurting almost every day. If it's not a stiff neck, then it's sore back, and if it's not those two, then my feet hurt when walking.
I find that the best thing to do for all the aches is to exercise. The more I move the better I feel.
Also, you just had a huge surgery 2 weeks ago. I remember that first month after mastectomy and TE placement was pretty challenging, and that was without letrozole. It also looks that you, like me, had chemo first. I know how hard it is to recover from surgery when your body has been battered with several months of chemo. Give yourself time and be gentle with yourself.
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Can anyone confirm the hair loss is permanent?
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Wintersocks,
Re permanent hair loss, there are a number of types of alopecia and some are temporary and some, permanent. I have the permanent type, i.e., scarring alopecia, but it is not a result of Femara, which I have taken for four years with no noticeable side effects.
Please have a dermatologist specializing in hair loss examine you. In my case it is a syndrome (Graham-Little Piccardi-Lasseure syndrome) resulting from an autoimmune disease and is listed by NIH within its "Orphan Diseases." It is classed as rare but it's my thought that the incidence is simply under reported.
I was initially devastated as I had hair I could sit on before BC and I collided. I felt sorry for myself and thought that nothing in my life has come out as I'd planned. However, something always works out no matter what I have done. And so I wish you the best and hope you soon have the information you need to move forward.
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Polly and Faraway, thank you very much for your input. I met with PS today and back pain could be because I am still recovering from surgery. After having back pain for 2 consecutive days, yesterday I just rested and the pain reduced. Will check with MO too and will keep monitoring it. Thanks again!
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I just started taking Letrozole 10 days ago. Headache, nausea and decreased appetite. One night with some joint and muscle pain. Was previously on Tamoxifen for 5 years for 1st primary on right. Finished at 5 years as MO did not think 10 would be beneficial. 15 month later diagnosed with 2nd primary on left.
Supposed to do 10 years of Letrozole. Not really sure about taking it. 90% ER+, so I get the theory.
Maybe it's because I wonder if it's really working. Some question as to menopausal status. A year ago my GYN did not think I was at my yearly check up just before 2nd diagnosis. My MO thinks I must be because of age (just turned 54) and did DD AC-T chemo. I had an endometrial ablation as I had severe bleeding 6 months after starting Tamoxifen, but I still have 1 ovary (other removed due to 6 cm+ complex cyst - Tamoxifen again).
Maybe I'm afraid of SEs again??
If my GYN says she thinks I'm not menopausal, I will probably just ditch them after I see her on Wednesday. My understanding is I'm probably not getting much benefit at the moment if I'm premeno anyway.
Feeling ambivalent and confused. Sorry I realize no real questions here, but thanks for letting me vent.
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Most of what I "know" about cancer treatment hair loss is from reading personal accounts on this forum and from my own experience. Hair loss from chemo varies. Some women's hair comes back the same, some is thicker (maybe also temporarily curlier), some like me get very slow return with much diminished volume, and some (perhaps from Taxotere (sp) but not Taxol) experience very little return especially on the crown and around the face. As I understand it there are or were lawsuits about the Taxotere because of this permanent hair loss. (If I have misstated this, please post).
Hair loss from hormone therapy (AIs) also varies. Some seem to see no change, some see overall thinning, and some like me lose large amounts and have bald spots. In my own experience, my hair was stable until after one year on letrozole. I have had my thyroid checked, have taken b-12, folic acid, and Biotin the whole time, and Vitamin D as well. I used Nioxin for about a year ( but not the highest level one with a medicine in it like Rograine). I consulted a dermatologist who advised me to go to CVS and buy Rograine. There are no dermatologists in the area who "specialize" in hair loss. I don't think there are miracle cures out there despite some posters' hope. If there were they would be reported on the front page of every news paper because of all the men and women suffering from this and the $$$ value of solving hair loss. Just my thought on that. I have read on here of at least one poster whose her hair thinned on letrozole, came back thick 4 months later, and then thinned again 18 months after than and did not return. I would love to hear someone say that after regrowing hair lost on an AI, they experienced regrowth that lasted for more than a year or two. As of now, alas, I believe that hair lost on an AI is permanent even though hair lost on chemo is usually temporary.
I met with my Mo yesterday to discuss this. I am going to go on a 4-6 week "vacation" from letrozole and see if my hair stabilizes. If it does, that will be some indication that the letrozole is to blame. I will then switch to Arimidex even though my MO does not believe there is any difference to hair as to which one I take. Actually that makes sense because all AIs wipe out estrogen and that is what causes the hair loss. Nevertheless some posters report a difference after switching. Anyway, I will report back on this thread (unless my chemo brain forgets!) and let you know what I experience after stopping letrozole for 4-6 weeks. Good luck to all of us -- we do love our hair. Polly
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Good Afternoon,
I'm on letrozole it will be 3 yearss soon, really debating about going off hate the SE's. How's besides hair for you anything else?
Thanks
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I have pretty much reconciled myself that my AI hair loss will continue (it came back thick and curly after Taxol). Now that I have the hot flashes under control, I've decided to be "the lady with the hat". Have a few wigs that I like but the hats are easier for most occasions.
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i have been on letrozole for 3 years now. The worst side effects that occurred in the first 3 months were urinary frequency / incontinence. Hair thinning. No joint issues, but i think this is because i have RA abd am on medication for that. Good news Is that the urinary tract issues diasappeared after 6 months and hair thinning after about 2 years (I stopped coloring my hair, and I believe this helped with the hair loss). ongoing issue is hot flashes, trigger finger. just saying, hang in there
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being positive, I was on Lupron and letrozole for about a year-and-a-half. Side effects from my letrozole kicked in at about 2 months. Started with my hips and then moved into my back. I had a conversation with my Mo and she gave me a long break from the Letrozole but my back pain did not improve. I had it in my head that it was the Lupron shots. Since I am 53 I pretty much begged to trial off the Lupron. That required me to go off BOTH meds for three months, have blood tests, stay off for three more months and have repeat blood tests to confirm that I'm actually in menopause to be able to go off the Lupron. I just had the 6-month blood test today and it does show that I'm in menopause. So at this point she's talking to me about going back on letrozole only. My back pain only just improved this month so it has taken a good six months for something to get out of my system here. Not crazy about going back on right away but I guess we'll have to see. Plan on talking to my husband about it today. As far as what I tried for the back pain I tried 800 mg of Motrin, when that didn't work I tried Naprosyn 500 mg, I don't have stomach problems so my doctor said it would be okay to just try plain aspirin which I took 3 regular aspirin (975mg), honestly, nothing really helped for me that's what made me decide to trial off the Lupron because I was desperate. Hopefully it won't be that way for you. I heard for a lot of women side effects start at about 2 months and level off after about six months or so. Unfortunately that just didn't happen for me. I did find that taking very hot baths helped. I would sit and soak in a really hot bath tub for a long time and that helped both my hips and my back somewhat temporarily. She mentioned that they could try Celexa but I never did try that. I'm not real crazy about the idea of going on meds that might affect my emotions and brain, but I guess it's better than going off for cancer meds. I wish you the best of luck and keep us informed.
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