FEMARA
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I was reading al your posts and appreciate all your sharing. My only major SE from Femara is that I can't lose any of these extra 10 pounds that I carelessly put on since Christmas. My MO said I could try Arimidex but only the real one - not generic - because that one could have less SE regarding weight issues. It's more expensive and I am wondering if any of you have heard anything like this or found one AI to be better for less weight gain. I hate to needlessly give more money to drug companies. Thanks
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dveti,
I do have irritation/burning in that area, plus I have constant UTIs. I have discussed this with my gynae and he suggested Vagifem to help with the lack of oestrogen (British spelling) that he says is causing the symptoms. I did try it for 2 weeks but my symptoms did not improve and I stopped it mainly because at 100% er I did not feel comfortable putting oestrogen back into my body. He said that this would greatly improve my symptoms He added the amount of hormone I would be exposed to was minimal and that he had spoken with the breast team and they confirmed that. I am nearly 3 years on Letrozole. I would say my symptoms have got much worse in the last year or so.
However, I saw a urologist last week and he thinks it is the tape I had, to stop stress incontinence that is the problem. I am waiting for urodynamics to do a #where-does-my-urine go/not go ?? with contrast test, as I feel I am not emptying my bladder properly.
In short, I have conflicting opinions about this issue. My own thoughts are it is actually a combination of these two things.
I am also noticing my head hair is so much thinner and my erm, lady garden is actually non-existent!. I think this is a se of the Letrozole.
.
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Hello to you all talking about vaginal dryness and the whole last garden(lol) area. My gynecologist gave me a perxription for Replens as it is no estrogen and rather hyleronic and you use it once a day for two weeks then once a week to maintain the moisture. I haven't got it yet but I'm making it a priority this month because it is so dry in the nitherland That it hurts when I walk. I wouldn't add any hormone products whatsoever. I found another tiny lump in my right breast now so waiting for biopsy and then the wait for the results.
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dventi- The burning/urgency you're feeling is a symptom of menopause due to the change in tissues from dryness and lack of hormones in our female areas (inside and out). The name escapes me, but for lack of a better way to say it, your urethra isn't being supported well and drops just enough to become a little exposed down there, causing you to feel a burning sensation that to me, feels EXACTLY like a UTI (Yet ANOTHER super fun surprise issue for us). It's not due to the Femara specifically; it's due to menopause. I started having symptoms after I had my oophorectomy and was still 2 mos away from starting Femara. The cure? Estrogen. Of course. Women who can have hormones use a little estrogen and feel just great in a week. For us? Non-hormonal products and physical therapy. I second the recommendation above for Vmagic, as well as using a Hyaluronic gel product (see below), and try to find a Pelvic Floor Physical Therapist. I'm not back to normal but things have improved quite a bit!
Snowgirl- My doctor recommended something similar called Hyalofemme. Actually, she recommended the US version, but ordering this one from a British Pharmacy online is almost ½ price (order a few at a time- their free shipping is great but can take a couple of weeks). FYI, in my opinion the oophorectomy has been the easiest part of this journey by far. Once I got my side effects under control (hot flashes are pretty mild now... I take 150mg Wellbutrin, so maybe that helps? They started fairly intense during chemo and have actually slowly gotten better since I started taking the Femara. I assume my body finally adjusted but think I had a head start with my oophorectomy first.
Also, see joint pain info below) I have hope for you on the nerve pain: I also had a level 3 ALND. I finished rads 4/1/15 and only in the past couple of weeks have I been out of extreme nerve and muscle pain. EXTREME. I was pretty good through radiation, then a few weeks later my pain level shot from a 2 or 3 to a consistent 7 or 8. The pain was excruciating, and I have to admit after getting through radiation fairly ok I was shocked at the late onset of my symptoms! An orthopedic surgeon told me my nerves and muscles were simply "furious" for all they'd been through (I know how they feel). They were in such spasm we could often see them under the skin. Bizarre. Two courses of steroids and a lot of painful physical therapy exercises, and things finally began to rapidly improve about 2 weeks ago (seriously, just when I thought I couldn't take anymore).ml143333, Jean, gavinsgrandma - I had terrible bone pain after my oophorectomy, before I took Femara. Come to find out, it's a very common menopause side effect, with or without Femara. I'd get tears in my eyes when I had to move after being still for a long time (getting up in the morning was brutal). I started taking a glucosamine, cond, msm supplement, and I swear to you I could feel pain relief in a few hours the very first time I took it. I know that sounds ridiculous; I've never had a supplement have such immediate effect on me. Since then, if I forget to take it for a day, I wake up sore the next morning. True story. Here's what I take: http://www.nowfoods.com/Glucosamine-and-Chondroiti....
p.s. I've also got very little hair down there since about a month after starting Femara. Funny side effect, but it's actually kind of nice. lol With all we deal with, at least it's not another negative.
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Texas94,
Wow thank you for all the information. Much I hadn't heard about before and looking forward to not having Lupron injections after oophorectomy. But worried now about getting this other lump dealt with and maybe this time aroun I will get chemo even with low oconotype score as yours was as well Texas. I do kegal Exercises for my pelvic floor as many times as I can throughout the day but noticed my bladder is completely emptying and I get up and oops pee in my pants so I'm havering to retrain myself to sit longer and wait for that second stream to start. I feel so old when I try and get up from sitting or laying to long and yah excruciating nerve pain but gabapentin seems to help I just don't want to live my life out in a fog. I can't do anything after I take it like for sure no driving. I'm very grateful for the support we can get in this community! I'm going to look to order the hyalofemme Online. Glucosamine I haven't tried yet but I will.i just need to be working to afford all these supplements. My son has disabilities and lives with me and is turning 19 soon and eats like a horse so I gotta get working as soon as this next good round is done. One day we hope to go to Denver where his syndrome is studied and get him the help he needs as well. He slept last night with his apnea machine on and had an awesome day and no tiredness. His father said he didn't need it anymore (hahaha) doesn't like his son to breathe at night. What can I say. Things look so much brighter now ... Just damn finding another lump other side.
I will be going for BMX if it's positive and may have more questions for you Texas!
Thank you for all you suggestions
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Has anyone had blood pressure issues with Femara?
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Thanks for sanity check!!
wintersocks- thanks for info! When are you doing urodynamic test? - I'm supposed to have that test -but scared it may be painful - drs always minimize what really happens - but I know you will tell me " the real deal "!
Texas94 - thanks so much for info and the product suggestions!
Snowgiri63 - thanks for product info -will send positive thoughts. For good results on your biopsy!
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Dventi,
Oh you are to get it too? I am still waiting for the appointment for that. The NHS although free in Britain can be gridingly slow ,but i hope it will be soon. I got the report (a letter) from the urologist today. I am not home, to look at it , but will have a look at it again tomorrow, and let you know, if i think it might help.
I don't think test will hurt at all. I know its with contrast, but i am not sure if it is a drink thing or an iv ? Perhaps some one can enlighten me?
My feeling is you really should get it, if it has been suggested. We can go through it together! Of course, I will be completely honest wth you if i am first to have it. But we will be fine - promise!
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Jilly - I don't know if its from Femara, but my blood pressure has been elevated a bit at recent dr appointments. It is not so high as to cause alarm, but for someone who has had surprisingly low blood pressure all of my life regardless of physical condition, I will have to look into this further. I have an upcoming appointment. This will be added to the list of concerns.
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My blood pressure has also gone up after starting Femara. Not a lot but because my blood pressure has always been low it is noticeable.
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hi Snowgirl
While I was on chemo, I thought I had an ear infection. Went to primary care who said he saw some redness but no fluid and recommended a decongestant. A week later it became apparent that I had shingles in my ear. I had the shingles rash on the outside and inside of my ear. But fortunately no lasting side effects. How long have you had the earache?
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Today, my new oncologist told me to stop taking Femara/Letrozole. I have been taking it for more than seven years. I feel like kicking up my heels!
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Congratulations! I can't wait to hear those words!
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Congrats Beergirl. I start Letrozole in two weeks.... I've been told for for 5 years. What happens when you come off it, does your body just not produce estrogen anymore by then?
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Beergirl, Congratulations! Woohoo!
I curious; my MO told me that my goal is letrozole for 10 years. Why did your MO say why you could stop? I'm hoping I can stop early, too.
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Interesting - My MO said that there is no indication, at this point, that there is a benefit to staying on letrozole for more than 5 years. She added that this might change by the time my 5 years is up (June 2017). She also added that research shows that there might be a benefit to completing 5 years of tamoxifen followed by 5 years of femara.
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I'vve been told to take my Letrozole at the same time each day, so I am trying to decide whether to take it first thing in the morning or before I go to bed. Has anyone found any difference in when they take it
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BosumBlues - you can forget about a sex drive while you are on an AI, I'm pretty sure. From what I've read, and experienced the last 2.5 years it's not possible to have a sex drive without estrogen. Very depressing.
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dventi, I started on Femara/Letrozole and did not know until months later that the nausea I had a couple hours after taking it every morning was related to it. Also had dizziness that escalated to day long vertigo episodes, so I went off Femara for about a month, all symptoms went away, but I had to take the drug so I took it at night before bed. Still had mild nausea in the mornings and some dizziness so after a few more months I switched to Arimidex/Anastrazole which I've been on since then. No nausea or dizziness with Arimidex so I'll stick with it for the time being.
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Hmm, I did some research. Currently, 10 yrs Tamox or 5 yrs Tamox plus 5 yrs on an AI is the gold standard. There isn't data available yet (it's still too early) regarding 10 yrs on AI, such as Femara. The thought is that since 10 yrs on Tamox is beneficial, the same will hold for Femara. By the time I'm 5 yrs out (2020) there should be data available.
Sex drive??? What the heck is that?
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catsrus. I was told to take at the same time everyday as well. I decided to take at night as I had read that it could make you feel tired and it would be better since you were going to bed. I now have s problem with that because sometimes I fall asleep watching tv and have to take when I wake which could be an hour or two after my scheduled time. I now wish I took first thing in the am.
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Good morning SWBeason,
I have had the earache for over three months now, but the gabapentin has worked on that and I only take 100mg at night and the effects last all day.the Dr can't see anything in my ear. But I will mention shingles to see if that is possible behind my eardrum. It is on the same side as my surgery, so seems reasonable it is nerve pain from the radiation. I sure can't tolerate any loud noise anymore. And end up using aurlgan ear drops and stuffing it with cotton to drowned out noise.
For anyone asking about when they take the femera...I took mine in the morning to begin with but it affects my sight so much with blurriness to the point where I know it would be unsafe for me to drive...so I started almost right away switching to night time and while I'm reading to fall asleep I can gradually see the effects on my vision and know it's time for lights out when I can no longer see the words on the page . Then I switch to listening to music. My blood pressure has not increased but I have only been taking it for 5 months. And all my bloodwork is good except on the borderline for low WBC. Anyone have suggestion for what they do to increase immune system?
I'm still waiting for an ultrasound and mammogram on the right side for the tiny lumps I can feel...seems they are not in a rush even though the dr said on the req. that it was urgent...we all know how we have to wait & how agonizing that is.
I'm up early this morning so I will take my cleansing glass of warm lemon water and so yoga with Adrianne on YouTube. she's awesome for beginners like me.
Wishing you all a good day💞👩❤️💋👩💞👩❤️💋👩💞T
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Does anyone know the window for effectiveness for Femara and other AI's? I have a friend who is having a huge anxiety issue over meds. She had a single mastectomy and radiation, 3 nodes positive. ER+, Oncotype 11. I have been working with her by phone every morning to help her get on letrozole. Due to her anxiety (not rational, this is a mental health issue at the moment and she is heading for hospital) she calls me when she takes letrozole and I stay on the phone with her. She has moved from 1/4 to 1/2 to 3/4.
Yesterday, her primary care doctor told her to stop taking it. I guess this was a response to her anxiety and my friend may not have explained what we have been doing. She is on Remeron (antidepressant) and just went on Zyprexa (antipsychotic) and neither of these interact with letrozole.
I left a message with the PCP and oncologist on her behalf but have no legal right to talk to anyone, of course.
Is a delay in treatment with hormonals (after surgery and radiation) dangerous? What could her PCP be thinking? Every time I make progress with her getting onto letrozole, someone tells her to take the whole pill or none at all, which makes her freak, and now an MD is telling her not to take it!
(I am on Femara myself as of 4/15)
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Good morning all! My new onc at MD Anderson told me there were no studies indicating a benefit from taking femara more than 5 years. She said in pre-menopausal women there was a benefit in taking tamoxifen for 5 years, and then taking femara for 5 years. I was 65 when diagnosed and have never taken tamoxifen. My previous onc wanted to switch me to tamoxifen at one point but I said NO. A major side effect of tamoxifen is blood clots. My mother died from a massive stroke, possibly caused by blood clot, when she was 48.
Femara/Letrozole is really hard on the bones too. I already had osteoporosis before I was diagnosed with breast cancer.
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BosumBlues, I have a good friend who had the same experience as you did with tamoxifen.
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I hear you BosumBlues!
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Bosom Blues, my friend tried aromasin and wants to take the letrozole. She is afraid of all meds (yet goes to the natural food store and buys supplements like tyrosine!). She wants to get on the letrozole and tries hard to take it each morning. I helped her get onto it slowly, 1/4 at a time, and she was up to 3/4 with no negatives as yet.
So people are having some mental health issues on AI's? Since she is having mental health issues, perhaps that is why MD's are telling her not to take it. But they are not replacing it with anything either, so to me, she is at risk for her breast cancer spreading, especially with positive nodes.
With anxiety preexisting, and a couple of new meds on board for that, it would be hard to tell which effects, if there were any, would be from the letrozole.
If the PCP is thinking a delay will help with that issue, I just wonder if it's safe. I know the oncologist wanted her to take it.
Basically, after watching her make progress toward a whole dose of letrozole, it is pretty frustrating to hear of two professionals in one week who told her not to take it!
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Snowgirl- I'm so sorry, I didn't realize you have a new lump when I posted. When will you find out if it's a recurrence? I've had it twice now, the first time seven years ago with a BMX and Tamox, and this past year with lots of chemo, rads, surgeries and now 10 years Femara. I can't say it's been a great year (and not that I had a choice, but I don't know if I'll ever be the same after the ALND surgery... it's horrible), but I'm of course grateful my first tests and scans this past week were clear (3mos after rads). Also, my heart hurts thinking about how full your plate is also worrying and caring for your son. I know all the added costs of trying to improve our lives after breast cancer don't help... it's crazy how expensive it is to simply try to feel "ok." I think often how awful it is so many women go without the extra supplements and services some of us are able to afford.
BosomBlues- I had the same experience on Tamoxifen. I lost my mind on it. I managed to last 3 ½ years (even though I cried and begged my onc to take me off at every visit). The final straw was finding myself in a grocery store having no idea how I'd gotten there (scared me to death). I couldn't live that way anymore so stopped taking it. Come to find out, it wasn't doing much for me anyway except possibly holding the cancer at bay for awhile.
Catsrus- I'll put in another vote for taking Femara at night. I started taking it every night 2 months after my oophorectomy and haven't noticed too much of a difference. I believe part of this is due to taking it at night (which I did because so many other women on this site recommended it!).
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Thanks Texas.... I was leaning towards taking it at night, so I think I'll start with that. Sorry to hear your ALND was 'horrible', I had it in April, but only 9 further nodes taken for a total of 11 removed, and (touch wood) I have had no issues. Thankfully they were all clear, I had cancer in one of the two sentinel nodes taken when I had the MX.
Cyber hugs to all, especially those dealing with so much in your lives. Best wishes to all
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Catsrus- Great news your nodes were all clear, and thanks for the kind words. I unfortunately had to have the most extensive ALND, which usually means lots of issues, the worst being lymphedema. Of course, anyone can have problems, but the less extensive the ALND, the less likely, so hopefully you'll keep doing great!
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