FEMARA
Comments
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Hi Rozem and gentle hugs!!!
First, lots of people do well on Femara. I will tell you my experience, in case it helps. At first, I had terrible insomnia. I was taking the AI at night and when I switched to morning, it was better. About 3 months in, I started noticing that I was really stiff when I got up from a chair, bed, the car, etc. Nothing really painful, but very embarrassingly old-lady like! I then had a bout with joint pain in my left hip all the way to my knee. It wasn't constant, but really scary. I read on this thread to separate my statin from the Femara and when I did, miraculously, the hip and knee pain went away. Woohoo. I feel pretty good now, but I HAVE to exercise every day. When I don't, I have muscle and joint discomfort. As far as hair loss, I started taking Femara right after chemo and my hair is actually thickening up and I have not noticed shedding. I do have bad hand and foot cramps occasionally, but I attribute that to the lasting side effects of chemo. I take D3, calcium, complex B12 and tumeric supplements daily. I don't know if they help, but??? Good luck, you may need to change things around before you find what works for you.
MsP
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I appreciate all of the advice since I started letrozole about 6 weeks ago.
I was not in menopause prior to cancer, but now after chemo, it seems I am. My estrogen level is lower than a mans.
When I sit down for a bit, it hurts to get up and I end up hobbling around. I can barely get out of bed in the morning. Whether that's from lack of sleep (insomnia and hot flashes) or joint pain.... or both, who knows? I just turned 50 and still have 3 boys in the house. My youngest is 12. I sure hope it improves... or people may think I'm my son's grandma! LOL
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Poppy, I really get angry when I hear about young women like you who are having to deal with this disease and the side effects of the treatment. I am 65 and while I don't like hobbling around like an old woman, it doesn't see like such an assault to me like it would be if I was 50. Even at 65, I feel young, but at 50....I was unstoppable! I'm sure you are too and you have a lot of living to do. I hope you are able to find the balance in your life, get good sleep, feel good, get rid of the hot flashes and joint pain. Don't give up!
Love, MsP
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Poppy, what company makes the Femara you are taking? Mine is from Apotex Corp. and I have had no problems with it and I am a little older than you (54). I take mine I the morning with my other meds.
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Walked average 7 miles a day on vacation this past ten days and noticed joint pain only when first getting up. So the walking is good for it, might be hard to fit that all in though with being back at work.... but I am determined to walk daily at least three miles. I did not lose weight doing all that walking and recording everything I ate on weight watchers,,,, eh, I am eating healthy and exercising and I refuse to let this get to me, digging deeper to see if more vegetables smaller amounts of carbs also might help.
Vaginal bleeding should always be reported to your doc.
I agree with the other poster who said the side effects are so variable with all of us, keep pressing on everyone! PS I get Dexa scan every year.
edited since I repeated myself hahahah being up too early doesn't mean my brain works any better...
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I know what you all mean about hobbling and being stiff when getting up from bed or a chair. I think the reason it doesn't bother me that much is that I have had this problem in some form or another since I was a teen. I have a bad back, sciatica and I also had very bad runner's knee (I never run, but that is what it is called) from about age 19 till my early 30s. I can see how if it is a new thing all of a sudden, it must be really difficult.
Once again, though, I must harp on the importance of exercise. Since I started working out regularly (right after finishing cancer treatment), I have actually reduced my overall pain load, even compared to my pre-femara days. When my feet and hips hurt, from the femara, I start walking. After about 20 minutes of walking it usually starts easing up.
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Does anyone else have neurological symptoms from Femara? I can handle pain (have had pain issues for years) but the dizziness and buzzing is hard to handle. My hands and arms and face burn too. I have an autoimmune disorder and some preexisting neuro issues so wonder if it is related to those. I am going to try taking 1/4 dose: the company info says that 1/5 is effective. Apparently 30+ % of women quite these drugs, but our Oncotype score depends on them- something seems wrong to me.
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Hi ladies. I originally thought I would be joining the Bottle o Tamoxifen group, but it appears my onc wants me to do Lupron + Femara. I totally didn't expect this. I am 35, so premenopausal. I am scared to death of this combination! I was a little nervous about Tamoxifen, but now I'm really nervous. I didn't need chemo based on low Oncotype. According to the SOFT trial the women in the non-chemo group did just as well on Tamoxifen vs. OS+AI. I am really torn on what to do. The oncologist said my recurrence score would be around 10% on Tamoxifen, but would drop to 6% on Femara and Lupron. My biggest concern is any kind of permanent, irreversible side effects this regimen may cause me. I am OK trying it as long as it all goes away if I stop it due to side effects. Three percentage points are not worth something that may harm me in the long run. The Osteoporosis scares the hell out of me at 35. What will my bones be like in 10 years if they start breaking down now? I am having a baseline DEXA done and then once a year.
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Shelly.....these decisions are so difficult. How about getting a second opinion, preferably at a comprehensive cancer clinic or NCI-designated institution?? You are young and have a lot of living to do and you are wise to question this recommendation. Have you thought about going on Tamoxifen while you do your research so that you are getting the benefits of hormonal therapy?
MsP
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Hi MsPharoah, I actually go to a NCI currently - Duke University Cancer Institute. My oncologist is Kimberly Blackwell, who helped develop and trial TDM-1. She is brilliant, so I feel like an idiot even questioning her judgement. Does that sound crazy? I am scheduled to receive my first Lupron injection on May 4th and begin Femara. These decisions suck! She said I could opt to do Tamoxifen only or nothing at all - but their recommendation was to at least try the OS+AI.
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If you have confidence in your medical team, that is all that matters! Move forward, don't look back and kill that cancer, hon.
MsP
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shelley - I'm surprised that your Dr would want you on Femara/letrozole as everything I have read/heard/seen it is only for post menopausal women either confirmed bybyy testing or just so many years. I was 19 yrs post natural menopause when I started on it. My Dr was very emphatic it was not for pre menopause. Perhaps there is new research to the contrary. When I started on Femara I was told I'd be on it for 5 years but then about 2 years later, Dr T. told me that new research indicated that for some that it was best to stay on it 'forever' and being IBC I was one who should stay on it. Did you ask your Dr why thought it is best for you? There could be other reasons perhaps.
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Hi Shelley, I was scheduled to start the Lupron-Femara protocol! But after chemo, my ovaries just gave up. So now I am on Femara only. Another option I was considering was to have my ovaries removed. I take calcium and Vitamin D to keep my bones strong. Usually the SE are less severe with Femara than Tamox (aside from bone concerns). BTW, Duke is a wonderful facility. It is wonderful you have access to such a wonderful, up to date facility.
Yes, this is a new protocol based on the most recent studies. The protocol kept the cancer at bay.... and is recommended for pre-menopausal women. It is also recommended that the hormone treatments be continued for 10 years (many reoccurances were found at about 8 years out).
Nomatter, My drugs come from the same manufacturer. I just received a shipment from the mail order pharmacy and the manufacturer is Roxane. So maybe the SE will change. I've also read that the SE can decrease with time. Let's hope so. I have a lot of stress in my life which isn't helping things. Surprising, my cancer isn't the most stressful thing going on in my life.
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shelley - to ask questions on why anything is suggested is not "questioning her judgement" but is to better understand and gain knowledge, thus allowing you to worry less.
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I'm just started femara two days ago. I'm on the Lupron - femara- zometa cycle. I used aromasin but my joints could not handle it.
Also with monthly blood work. I feel I'm in the doctors office constantly. I also went to Sloane Kettering for a second opinion.
I will always ask questions, I need to know why decisions are being made.
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kicks- the Lupron shots apparently trick my body into think it's post menopausal so that I can take Femara. Femara was shown to be superior to Tamox for premenopausal womens in the SOFT trial which is what she based her decision on. Because of my age they want to be a little more aggressive.
Poppy - good to hear from you. Are you tolerating the Femara well so far? I didn't do chemo so I haven't experienced chemopause.
SchoolCounselor let me know how it goes for you. Was this your first Lupron shot? Did it hurt? How are you feeling in Femara so far?
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I am post menopausal for over 20 yrs and have been taking Femara since January. Other than some stiffness when I first start walking it hasn't been too bad. Love, Jean
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It was my third Lupron shot. It can hurt but it is what it is. Femara seems to be making me thirsty!! Is that a SE?
Still having significant joint pain post aromasin so myMO is sending me off to see a rheumatologist. I see him Monday.
I've been having a hard time with what I hope is not my new normal. I'm in significant pain and can barely walk. I'm so tired of this BC stuff!!!
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I'm with you there, SchoolCounselor!
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Hi ladies! So glad to join this thread. Had the ooph last week. So glad to be done with all the premenopausal stuff and the antics tamoxifen played on me. I decided not to check out SEs from Femara. Had to see my PCP today anyway so he set me up with a bone density scan and they squeezed me in today
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I hope you're recovering well, Lucy, and that Femara works out well for you. Please keep us posted.0
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Thanks Hopeful! You keep us posted too
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I tried anastrazole and the side effects were horrible. I blew up like a float in the Thanksgiving Day parade and the pain was intolerable. I then switched to generic Aromasin. The side effects were not great, but not nearly as bad as anastrazole. The pain and swelling was mostly in my hands, plus numbing. However, my insurance plan went to a high deductible vs. copay and it was going to cost me $1100 for 90 days. I called my onco and told him that I couldn't afford it any longer (I was on it about 6 months). He just wrote me a prescription for Femara. I've decided to give myself a little break and take a few weeks off before starting the new med.
I have started riding my stationary bike and lifting some free weights. It hasn't made that much of a difference, but I keep plugging along.
Thanks for all the info!
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I tried generic anastrazole and lestrozole and had horrible reactions (I consider it a reaction when it happens shortly after taking the med, as opposed to a side effect which happens later). I asked my oncologist if she would be willing to prescribe brand name Femara, and took it yesterday and today with no trouble. I am actually amazed.
Also, I read on the Femara drug info site that 20% of the usual dose (0.5mg) is effective. Does anyone take just 1/4 or 1/2 of the 2.5mg pill? I was wondering if, as a small person, I could take a lower dose, have the same protection, and suffer fewer side effects or toxicity than the full dose. I am working with a pharmacist on this but if anyone has done this, I would love to hear from you.
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windingshores....haven't been on the site in months, but just saw your post. I was on 1/2 pill for 4 1/2 of my 5 years. By my choice. I just couldn't tolerate the side effects of a whole pill. I am 5'11, but still had a terrible time with a whole pill. Like you, I read the Novartis website and saw the trials showed full estrogen suppression at .5 mg. though I believe time to progression, or overall survival or something was less with the .5 dose. I felt comfortable with my choice. My Onc said it would be better to take 1/2 pill every day than a whole pill every other day....to have a steady dose in my system each day. I hope it works for you. Joni
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Thanks Joni. I am going to recheck the study if I can find it. I took 1/2 yesterday and 1/4 today while I figure this out
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- Look at paragraph 12.2.
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Thank you so much for this link. I am not on Femara yet but expect to be by the end of May. I am wondering how my onc will react on my wanting to take a lower dose...would I expect to be monitored for estrogen levels to see how that approach works? And does anyone know of recurrence studies/clinical trials of a lower dose over a period of years?
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cbaird.....I believe the most favorable outcomes were with the 2.5 mg dosing. I don't think the difference was huge, from what I remember. My Onc wasn't exactly thrilled when I went to a half pill a day. But he knew I was suffering from side effects., and taking half was better than stopping! Which, by the way, many women do stop before their 5 years is up. I hope I don't regret it down the road, but the 5 years were tolerable for me because of this. Best wishes....we each have to do what we feel is best.
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windingshore - I''m on the 'smaller side' but don't really consider myself to be ''small' as I am 5'6" (too tall to be 'small' in my 'mind''), stay between 125 - 130 lbs, so definately not 'large' at that height. I've been on Femara/letrozole (was not available as letrozole when I started it but went to letrozole when the generic became available) for 5+ yrs with no SEs. On (and have been on) 2.5mg daily throughout that time. As far as I know today (no reason to think otherwise), it's been working as still NED 5 1/2+ yrs post IBC DX.0
