FEMARA
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Im a huge advocate of acupuncture.. no major side effects from Femara EXCEPT - . my cholesterol has elevated. Blood pressure and EKG fine. Determined by annual physical and routine blood work.. Onc doesn't know about this yet.
Has anyone had the same?
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dventi, cholesterol rising has been one of the SE's that I have and it got to a level that I needed to go onto a low dose statin to stabilize it. Since doing that it has been just fine.
I did try to control it through diet and lifestyle but wasn't successful.
Hopefully you can get yours under control soon.
Love n hugs. Chrissy
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My total cholesterol level is on the high side BUT thats because my HDL is very high as opposed to my LDL which is quite low. Has not gone up in all the years I can remember it being tests - been on Femara/letrozole for only almost 4 yrs.
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Peacestrength, no muscle twitching here...
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thanks chrissyb and kicks... trying the diet exercise and natural supplements first... hope it will lower.
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dventi - Not sure when you say your cholosterol has increased - do you mean the total cholosterol (HDL and LDL) or just the LDL (the 'bad' cholosterol)?
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@ kicks - the total cholesterol and LDL increased. HDL and triglycerides are fine.
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Hi. My cholesterol, normal before Femara a year ago, has climbed 85 points. Theres a how to fight cholesterol thread on bc.org. Search it, Has some helpful tips. I just started on a statin this week. Really didn't want to, but at 285, with LDL of 185, I was told by a cardiologist and my onc, that there wasn't much chance for me to get it down low enough w just diet and exercise (I already have a very healthy diet and exercise an hour a day.) Also, there was new research that came out in Nov 2013 that implicated high cholesterol as a risk factor for recurrence (though it is very early research.) In the balance decided not to take chances, for now. Funny, I've gotten around to thinking that it may not be the femara causing this but rather the absence of estrogen. I think in some of us (for unknown metabolic reasons) the body tries to compensate for low estrogen in interesting ways. (Kind of what this new research points to.)
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Hi again,
Thanks for the lively discussion about Femara. I've been on it about six weeks now and I feel that over time I will learn to manage it. I'm 42 and was plunged into menopause very quickly, so my oncologist said it may take a bit for my body to adjust to the "low-estrogen environment." Here's what I'm trying:
-walking/running as much as possible
-acupuncture -- had my first one last week and I think it's going to help! I fell into a comatose-type sleep for three hours afterward; I guess I needed it. (Good thing mother-in-law was visited because I was a zero on the parenting front!)
-eating lots of salmon -- or at least I will once I get back home to Alaska (my onc recommended eating a lot of omega 3s)
-L glutamine -- my oncologist didn't think it would help but I had some left from taxol so I'm trying it
-better self-care all around: more sleep, deep breathing, clean eating....
I wish you all the best and am really grateful for the positive attitude so many of you bring as we're all slogging through this uninvited experience! Strangely cancer really is an opportunity to take head-on the challenge of owning our emotional and spiritual well-being.
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I have been on femara for 7 months. Only se had been hair thinning. But I can deal with that. I have showed improvement in the last 7 mo. Remember everyone reacts differently to the same meds. Wishing you best of luck
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Ok, so I go online looking at side effects of FEMERA and the website says DO NOT TAKE IF YOU HAVEN'T GONE THROUGH MENOPAUSE. I'm 43, I've not gone through menopause. I called the cancer center and got the rude nurse as usual. I asked if she knew why I've been taking femera when I've not been through menopause and the website says not to.
She said "You won't. You won't take femera until we give you the ovarian shots."
I said " UM, yes, I'm on my second bottle. Someone there called in the RX and the pharmacy called me to pick them up. I just had someone pick up my second bottle yesterday!"
She says "Oh, well, Don't take anymore." DUH.
OMG I'm putting my life in these peoples' hands and do they know what the hell they're doing???
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Tessa...OMG!!! That is so terrible. Reminds me of the PCP I went to who told me that I was getting double the normal dose of BP medication and when I gave him a startled look since he prescribed it....he said. "No problem, we can leave your prescription the way it is." YIKES! I ran out of that office as fast as I could. Then I complained loudly. Make sure you complain, even if you decide to change doctors...could save someone's life.
MsP
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Tessa, that sucks. I have been getting zoladex shots since starting and will have my ovaries out next month..
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Alaskamama - love the proactive regimen you are on! I am a huge advocate of acupuncuture.... thanks for the reminder about omega 3's!!
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Tessa, that really sucks. I've been trying to read up on everything, double-check everything and get second opinions on everything as I have learned not to trust the medical system -- even when the individual docs/nurses/pharmacists are smart and caring, things slip through the cracks. Sometimes it feels like that "telephone" game where information just morphs as it gets passed (or not passed) from place to place.
Good luck!
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Dear TessaW, Wow, that's so basic. Do you have an option to be cared for elsewhere? Even if this was a one time mistake its also not good that they're nasty (especially when they should be kind of groveling....) You don't need this kind of stress, if anything you need them to be nice and supportive. If you do need to stay there, this is the kind of thing I think I'd be pretty upset about so that they're more careful when they see your name in the future. Makes me mad!
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OK, here is a slightly delicate question, ahem. Does anyone know if femara can stop working, as in your system gets resistant and starts churning out estrogen in spite of the drug? The delicate part is that I ask because the sorry state of the nether regions seems to have improved a fair bit, and although that ought to be a good thing, it made me wonder if maybe it wasn't such a good thing.
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Momine, no probs, same thing happened to me. I asked my doc and he said that it is highly unlikely that it is no longer working........if that were so, the cancer would have moved. It is the cancer that mutates to get around the blocking action of the Femara not the failure of the Femara doing its job. I have taken him at his word as it's been almost a year and I recently had scan with no change so for me all is good.
Love n hugs. Chrissy
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OMG, my onc office accidentally called in my RX for Femera BEFORE giving me the ovarian shots. I had someone pick up my second bottle of femera for me and noticed I had gained 3 lbs in one week. I went to the drug's website and in all caps it said DO NOT TAKE IF YOU HAVE NOT YET GONE THROUGH MENOPAUSE. So I called the onc nurse and asked her why I was taking femera BEFORE being forced into menopause when the drug's website clearly says NOT TO. She said "You won't. You won't take it until AFTER we give you the ovarian shots." I said " UM, NOOOO. Someone from your office called in the RX and the pharmacy called and asked me to come pick it up with insurance information since it was over a thousand dollars. I'm on my SECOND bottle." She says "OH, well, don't take anymore"
NICE.
Have you ladies accidentally taken Femera too early? What were your SE's? I'm exhausted. I nap 4 hrs a day. It's crazy.
Did any of you have the ovarian shots? Big needles up my hoo ha all the way to my ovaries freaks the crap right out of me. I'd rather go through childbirth again!
HOW BAD WAS IT ????
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Chrissy, thanks so much. In that case I will just enjoy the new and improved conditions
Tessa, I am pretty sure the shots are in your behind, not directly to the ovaries. You really need to demand better info from your doc.
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Momine, how long have you been on Femara? My understanding is sometimes they put people on one drug for a few years and then another for a few years as they can lose efficacy. BUT I think that may be AIs vs. tamoxifen, and I think the time is multiple years. Seems like a question for the oncologist -- let me know what you learn!
Tessa: I've been on Femara about seven weeks (and expect to be for ten years...). I was taken aback by how hard it is. We get all geared up for chemo and surgery and radiation and then this little pill I thought nothing of knocked me for a loop and I'm thinking, "TEN YEARS?!" I can do anything for six weeks or six months, but the next decade of my life?!
BUT.... I'm trying various coping skills and seeing some improvement. If you can find the time and will to do 30 minutes of brisk walking or equivalent daily, I think it'll help. It's also confounded for me with radiation (I'm exactly halfway through). I'm going to give it six months before judging.
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Alaska, I have been on the stuff almost 2 years. I am not sure I am up for discussing vaginal lubrication with my onc.
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Momine I've been on Femara for almost four years. The dry nether regions drove me to ask my gyno about some lubricant as I could not sit without pain........and totally forget about anything else. I was given an estrogen vaginal suppository to insert, very low dose and only twice a week. It worked well and at least got me comfortable that I could once again sit.
The estrogen vaginal suppository was quite safe according to both my gyno and PCP providing it is used sparingly. That was about three years ago. I used it as I was told and then noticed that I was using it less and less so decided to keep a check on lubrication and use. I went from using it twice a week and looking forward to it to not needing to use it all and still be comfortable. The time frame was about a year so that would put me at end year three beginning year four. Getting close to end of year four now and there are no lubricant issues and I'm still stable and as stage IV I'm really happy with both things.......lol.
Never be afraid or embarrassed about talking to your docs of any issues that these meds cause as they very often have an answer or can help with alleviating them..........after all, QOL is high on the list for them just as much as it is for us.
Love n hugs. Chrissy
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Chrissy, thanks very much. That is very useful. My docs are not open to talking about these kinds of things. THEY would get embarrassed. You should have seen the face of my surgeon when we were discussing whether or not to remove my uterus (the ovaries were already scheduled for demolition). At some point I said that surely we ought also to consider its role in sexual function. He looked at the ceiling and changed the subject. He is a lovely man and a truly great surgeon, but ...
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Momine, if your docs are embarrassed, get a referral to see a gyno as that is pretty much all they deal with........it's important for your health and well being that that area of your body is well taken care of as well.
Love n hugs. Chrissy
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Momine, I hear you re speaking to oncs about sex. Just can't imagine!!! For one thing, they have a waiting room full of people in all states of disease. I just don't feel right switching to a chat about my sex life with that (seemingly life and death) going on outside the door. So it's clearly me as much as them. I did bring it up with the onc gynecologist and she was very nice and recommended a safe lubricant.
Tessa, I want to fly there and knock some sense into these people. They should read labels and explain things better. The Lupron shots are given in the belly. Actually not a big deal.
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Tessa, I get the zoladex shots once a month. It is a preloaded injectable and I get it in my stomach fat. I put a blob of emla cream, which I buy in a small tube, on the area to be injected and cover it with a piece of saran wrap and hold it on with hospital tape. I do this about an hour before my injection and don't feel a thing. I am a super wus. I'm sure the weight gain would have happened with or without the injection. I think i started Femera the same day as getting my injection. I would call the doc and get the prescription for the injection and get them to give it to you right away. I go to the hospital and they give it to me when I get my pamidronate treatments, monthly.
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Chrissy, I have seen a gyno. It was a guy and there were all kinds of people in the room. I tried to bring it up, but how really. The guy said to use lube. Fine, but back then I thought "atrophy" meant that it was gone, kaput, collapsed, so this made no sense to me.
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Momine, all kind of people in the room? The usual practice is the doc, his nurse and you......for privacy there should not be anyone else unless you give permission and if you don't, then they leave.......no question.
Be the gyno male or female it should make no difference and you must remember that these docs deal with those sort of things and many more on a daily basis. You really need to go into a bit more detail...........he may have thought that 'lube' would do the job but did he know what meds you are on? or how bad the dryness was and is? Did you explain to him that you had tried the 'lube' and it made no difference? Did he actually examine you and see for himself. I know all of this is really uncomfortable to think, talk and do but it is just part of a functioning body and that is the way the doc looks at it and right now, it's not functioning properly.
Like all things as the saying goes, use it or lose it and it is definitely true in this case. You can get it back but it takes patience and determination on both your parts with a little help from the medical profession when needed.
Bringing up the question to the doc can be hard but just go in with a list and deal with the items one at a time and matter of factly, that way the embarrassment level is kept low.
Sorry for raving on about this but it is so important to be as functional as possible including in the sexual side of things and that seems to be area that is sadly neglected throughout this whole journey.
Love n hugs. Chrissy
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Chrissy, I know you are right, but I have had much better luck with all you nice ladies here than with the docs
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