FEMARA
Comments
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My hot flashes and night sweats vary day to day. Some days I am miserable other days I only have 4-5. My MO mentioned low dose ditropan for hot flashes if they get worse. I just hate taking another pill. I already have had to add a statin and blood pressure pill due to letrozole. But I can't complain as others suffer much more than I do.
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my insurance approved Xygeva because they don’t want patients in the infusion center / hospital any longer than necessary ONE benefit of Covid
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Any other post-menopausal ladies taking Letrozole and feeling like the vaginal dryness gets worse rather than stabilizes? I’ve been taking letrozole since early December 2020. I’m using Luvena every other day and Clobetasol every night and still feeling uncomfortable. I’m taking sitz baths twice a day, which provides temporary relief.
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It took approximately one month for the side effects.
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it looks like I may have to switch to Femara from Arimidex. My employer sponsored insurance does not cover the brand. Any tip re copays assistance is appreciated. I live in FL.
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Hello everybody ~ I have been on letrozole for two years now and have been so lucky to not have had side effects.
Recently though, I've noticed both of my ankles are swollen (edema). I've been chalking that up to sitting too much here at my home office working. Going to walk more, ice, compression sock, etc.
But now, I'm kind of worried about my left knee - it's painful. Spot above the corner of the knee cap is sore. I would describe it as achey right at the joint where the cap meets the femur.
My mind is going to recurrence of course, but could these symptoms be related to the letrozole? It says joint and bone pain on the list of side effects and joint swelling.
Are these common symptoms of Femara? I'll make a doctors appointment tomorrow, but could use some reassurance.
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LillianGish, yes, can be signs of Femara. 6 months after starting letrozole I had right knee pain and swell. MRI showed Baker's cyst. I was told that cancer doesn't go to the knees and down so rest assure, most likely it may be a ruptured ligament or so. Still, I am no substitute for a doctor
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LillianGish - I've taken letrozole now for over 18 months and I get knee pain like you have described. I also get ankle swelling that I notice when I sit at the computer a lot, drive awhile, etc. I too try to walk more, use compression socks, etc. for that. My layperson opinion would be that the knee problem is a side effect of letrozole, or an extension of the swelling from sitting, etc. I notice that my swelling is worse in the summer months.
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Oh Three Tree, thank you so much! What a relief to know it is not unreasonable to suspect side effects to the Femara. Sounds like you are I are experiencing the same symptoms, but I'm sorry you are in this boat too. And I didn't even think of the summer aspect. Feels like summer all the time here in San Diego, but it has been very warm this year. Really grateful for the sounding board advice.
LillyisHere thank you too! Ouch on the cyst though!
I will still make a doctor's appointment to check the knee out, but for now, I'm going to keep calm and carry on without so much stress. Thank you!!
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LillianGish - Glad to be of some help. Just to clarify, I've actually had the ankle swelling with sitting, driving, and heat now for a few years; started before letrozole, but I don't think letrozole helps any, and I do think letrozole is the cause of the knee pain. Re it always seeming like summer in San Diego, I spent a summer there (El Cajon) back in the late 1960's, and it certainly was warm compared to the Puget Sound area where I'm from and live. I went back around spring (April) of 1972 with a friend (this was to visit an aunt and uncle of mine who lived there) during a college spring break, and my friend and I spent almost all of our time in our bathing suits hanging around the pool at my aunt's condo, because it was sunny and in the mid 70's. No one else was hanging out at the pool and we thought it was just great that the two of us could lounge around in that way on our vacation. Well then, an older resident of the condo complex came out one day and asked, "Are you girls from Alaska or something?" and she said that it was so odd to see anyone out at the pool in April, when it wasn't summer. We laughed and said, "Almost!" about Alaska, and that we were visiting from the Puget Sound area and that for us April in San Diego seemed like summer, indeed!
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Three Tree, your story about San Diego made me smile. I grew up here, but spent MANY years in Oregon. I really miss the Pacific NW, and will be retiring there. And after I do, maybe I'll come for a visit to San Diego someday - rent a place with a swimming pool - in April before it gets too hot.
Really did appreciate your thoughts. They made me less panicked, and reminded me to be logical. Thank you for that.
Lillian
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LillianGish - You know what I'm talking about - enjoy your future in the PNW!
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Its been awhile since I've posted. Hope you are all doing well. I started Letrozole in June 2020. Only side effects were hot flashes. Then my blood pressure and cholesterol started inching up so I am now on a statin and blood pressure pill. Very low dose but it is working. Over the past few months I have experienced hand and foot pain. Now my legs ache all the time. I feel like I have a low grade fever that causes aches and pains but I don't. Did any of you experience this change after being on Letrozole for over a year? Some days I am pretty miserable and have trouble getting to sleep because of this. Motrin helps but I have to take it all the time. I see my MO in a few months but I may try to see her sooner, Thanks for your advise in advanced.
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i was taking calcium and vitamin D . Still I got diagnosed with osteoporosis. I had already joint bone pain but I thought it is Letrozole without thinking important bone loss.My doc prescribed a med to prevent further loss but I am worried about things I read. Hopefully some of you had overcome osteoporosis. . Any advise how to improve things besides meds?
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quinnie, what did your doctor say?
I haven't taken calcium and vitamin D before my diagnosis and my bones have been healthy. 6 months after letrozole, my MO strongly recommended Zometa and I get it as infusions. I have no idea how my bones are at this point.
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Is there anyone on this forum who, after ALL these horrid SE, just decided to forgo these toxic AI drugs? Obviously this is a shared forum but one of every breast cancer survivor/patient sharing a scroll of nothing but bad side effects. And then having their MO chase the side effects with yet another medication pill or treatment or (god forbid) surgery to address what these drugs are doing to women's bodies. I also see so many early stage profiles being given these toxic AI drugs without hesitation.
When I read online there is a very high percentage of women who walk from aromatase inhibitors. I even know two who just refuse to tell their MO and take the crapshoot risk. There is no guarantee. There is another forum concurrently with this one discussing just that. Which also has entries about QOL vs. feeling miserable for years.
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Lillyishere: thanks for responding. My MO took me off letrozole for 3 weeks and will start another AL. My symptoms are much better and no hot flashes!!! I am concerned that the new AL will do the same thing but I am willing to give it a try. I start in a week. I don't get my dexascan until June. I take calcium and vitamin D. If I get osteoporosis I am not sure what I will do.
Merry Christmas to all!!
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Due to the letrozole I am diagnosed with osteoporosis despite my vitamin D and calcium supplements. My doc prescribed me pills now to fight it. Plus I have occasional blood pressure drops which never had before BC. Of course I do not know if these drops are due to chimiothérapie and herceptin or due to letrozole. Any one experience blood pressure drops due to letrozole?
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Margun - I get some low blood pressure readings and some lightheadedness along with it at times. I don't know what exactly is causing it, but I absolutely suspect the Letrozole. Never had this problem before the Letrozole; except during chemo (weak, lightheaded, don't know about the blood pressure with chemo, never paid much attention to it then.)
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Hi, All.
Do you usually take Letrozole before or after a meal, or with food? I searched online that Letrozole is enteric coated, which means it's better without food?
Any differences on side effects of Femara vs. generic Letrozole?
How much calcium and Vitamin D do you usually take as supplements?
Thanks!
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Hi Ivla,
I take Letrozole about an hour after my night meal.
I take half a 1000 if of calcium and 1000 is of Vit D
Be careful with the calcium, it can cause constipation.
Hoping all goes well for you :
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Ivla, I used to take letrozole at bedtime but I had problems with sleeping and waking up with stiff and joint pains. After 2 years of this routine, I moved letrozole in the morning, and the stiffness and sleep has improved. Unfortunatelly, I take it with coffee only because I am not hungry in the morning.
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I eat a bowl of yogurt with fruit and nuts and flax seed around 4 or 5 pm every afternoon and that is my last meal of the day (I do intermittent fasting and don't eat again until about 9 am the next morning). I take the letrozole with the bowl of yogurt. I do wake up very stiff and I wake up at night (the things Lilly mentioned), but Letrozole makes me stiff most of the time anyway, and I wake up because I have to use the bathroom, so I haven't switched the timing. Once, I did take it in the morning before I ate, because I woke up and saw that it was still on my table and I had apparently gotten it out to take, but never actually did (brain fog forgetfulness). I had a terrible day the rest of that day. Horrible gas/stomach pains and general overall "malaise". I decided I'd keep taking it in the late afternoon with food. I know it is different for everyone though.
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Just an side note---be careful with calcium supplements. They are known for causing calcium buildup in your arteries. My docs don't recommend taking them unless labs show they are needed. As to Vitamin D, my BS is totally convinced that low vitamin D levels are a big contributor to a BC diagnosis. He bet me the first day that my levels would come back low. I took that bet because I work outside most every day. Low and behold, he was right! My levels were in the 20s! He said it's because most people (like myself) take great pains to use sunscreen and find shade when possible. I immediately started on 5000IU a day and by the next set of labs about 6 months later, I was in the 50s. It's now been 9 years since diagnosis and I still take 5000IU a day. My latest labs showed me holding steady in the mid 80s. All of my docs are delighted.
And another interesting thing I discovered in my BC journey....I took all the usual supplements that were suggested for me on my Tamoxifen journey such as turmeric (game changer for me in the joint/muscle pain department), ginger, fish oil, magnesium, etc. I developed daily nausea and dizziness, with copious belching being the worst, and spent the next few years blaming Tamoxifen and trying to find solutions such as tons of water (and I mean tons which did help a lot!), probiotics, deep breathing, etc. Then one day I decided to quit all my supplements and add them back slowly one at a time. I was quite surprised to find that fish oil and ginger turned out to be the culprits. Keep in mind ginger is supposed to calm the stomach and I knew for sure that my fish oil was a good one with NO fishy burps. A few months later I mentioned to my PCP my discovery and he just smiled and said "This is why you need to tell me everything. If you had, I could have told you that fish oil and ginger are both considered to be mild muscle relaxers and combined they tend to cause the opening at the bottom of your stomach to hang open which leads to lots and lots of burping and lots of burping leads to nausea and dizziness." Who woulda' thunk?! I spent years trying to figure this problem out and that was all it took. Moral of my story is to talk to your doctors and try the whole process of elimination. For me I found that with effort and the advice of many here, I was able to get through my BC journey without too much distress. Fingers crossed!!
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Interesting comments, Lala1. I used to always think of ginger as a stomach calmer, and sometimes it does act that way, but over the last few years, I too learned that it can have just the opposite effect too. I also have some "no burp" fish oil capsules and they don't cause burping, but they do noticeably upset my stomach, so I haven't been taking them. I've just upped my fish intake instead. Yes, turmeric does really, really help in the joint and muscle ache department! (I take Letrozole). I did stop it at one point because I thought it was interacting with some over the counter thing a doctor suggested I take, and before long I started to ache like crazy all over. I stopped whatever the OTC thing was and got back to the turmeric right away. I"ve also read a lot of negative about the calcium supplements, so I don't take them, even though the doctor told me to. Again, I've just upped my fish intake to several days a week (mostly canned sardines and salmon with skin and bones). I also do daily dairy (yogurt). That's good for both the calcium and vitamin D, although I do take 2000 IU's a day of D3.
It sounds like you have some really good doctors who will listen and work with you on this stuff, e.g. supplements. It also sounds like they know something about them. Just about all of the doctors I ever encounter either don't know anything about supplements (and don't feel they need to) or just don't want to talk about them because they are not FDA approved, "standard of care", etc. I think you are lucky to have the doctors you do.
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in July 2019 i had my last chemo. I am on Letrozole. My white and red cells were always low rang of normal. Today they come up lower than normal. White one 4 and red ones 3.88. I have some occasional lightheaded or dizzy situations so I do not know if it is the reason. Do you have any explanation why my white and red cells are low than the normal considering that chimio was over 2 years ago.
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Margun, I have been in letrozole a bit over 2 years. I didn't have chemo and my white and red cells have gone down as well. From 5 months ago, WBC 3.87 (below normal) and RBC 3.99 (normal 3.9-5). I have no idea why.
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Lilly thank you for your response. Did your doc said anything about this. My appointment is in 8 days so I need to be patient.
I was diagnosed January 2019 with triple positive ductal grade 3 1.5 Cm tumor no positive nodes. Chimio ac &taxol then goldilocks mastectomy. Since October 2019 on Letrozole. After bc my wbc and rbc was always borderline low but the latest was even lower than the normal range 4 wbc and 3.88rbc. Someone told me that letrozole can reduce wbc. I prefer that from recurrence but it is not still a good sign I think. My doc appointment is in 8 days. I hope by then I hear your opinions and if you had a such hopefully temporary drop. Thank
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Margun, I'll have my yearly check-up with my PCP next week and I will ask her. I always tended to be on the low side of WBC but RBC has been going down after my periods stopped, which doesn't make any sense. Let me know what your doctor says.
Anyone else with similar case?
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threeTree. You said that you have lightheadness like I do. Do you know your recent wbc and rbc coounts? My last blood test showed that they are lower that normal range ( 3.9wbc and 3.88rbc) and probably that was casing all. I am note sure if letrozole is responsible for my low wbc and rbc but I think they were the reason of my occasional dizzyness. I am seeing my mo next week but I am worried about this low wbc and rbc.
Only one person on this thread mentioned having the same problem with low wbc and rbc so i am not sure that Femara is responsable for thèse readings.
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