FEMARA
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If you go to cancermath.net you need to check the treatment outcome link, fill out everything correctly; if you don't know the lingo for your chemo, find it out. This calculator is really good, and it should help you. I use it to argue with my onc and my nurse.
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kira1234....it is normal testing now for ob/gyn to test vit D levels.......these posts are really stressing me out because it is a standard practice now....i don't understand!!!!!
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My oncologist tests it, my primary Dr. now tests it, and my Gyn. also tests my Vitamin D level. It was never tested before my cancer DX.
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I really can't say why my Onc. isn't testing my vitamin D levels I only know they aren't. When I asked back in Jan. I was told we don't test for it just up you D vitamins to 2 times a day. I go to an Onc. connected with Moffit in Tampa Fl.
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I just asked my Onc to add Vit D testing to my 3 month lab tests and he did. So far insurance has paid it. None of my Dr's ever recommended it. You don't want to stay on 5000 iu indefinitely, only till your Vit D level reaches optimal levels. So I would think monitoring is a must.
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All I can say is that you gals are lucky to have people willing to test your blood levels of various things. My oncologist refuses to check Vitamin D (says it's a fad) and doesn't even believe in checking cholesterol levels (which I insisted on after a year on Femara). He wouldn't test estrogen levels before/after I started Femara either. Doesn't believe diet or exercise influence outcome.
If I sound frustrated, it's because I am. But I'm not sure my insurance company would cover "between" visits to oncologists just to interview them to see if I like them better.
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Texas357, I understand how you feel. Do you have a GP? In my case my GP has been willing to run the tests my Onc. seems to feel I don't need. He is running an estrogen test and a vitamin D level for me.
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I have been taking Femara now for four months and have gotten continuously stiffer and stiffer especially over the past couple months. Unfortuantely, our house is on 4 levels so plenty of stairs to navigate. I thought that these side effects would gradually lessen over time, but it seems to be getting worse. Is it time to ask my ONC about switching to Arimidex to see if I tolerate that better? Am I getting too impatient.
My ONC has no problem testing my Vit D level. I had to ask the first time, but he actually thanked me for the request. Then when my level dropped from 28 down to 14, he immediately put me on prescription level, 50,000/week for 8 weeks which brought it up to 53. Now will get it checked every 3 months and hope to keep it up there.
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My vitamin d level is at 32, lowest should be 30. I am upping my d to 5,000 iu's now.
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Had to stop the fermara, blood pressure just too high. Will have to talk to Oncologist about where to go from here. Anyone out there had a spike in blood pressure with femara? Had ovaries out in Feb, just starting to get horrible migraine like headaches. Has anyone experienced this? Thought headaches were related to blood pressure but the blood pressure is down now that I stopped the femara, and headaches are still horrible. Had a catscan, nothing showed. I am walking around in a migraine fog, help!
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texas, my onc doesn't believe in the testing of vit D or estrogen either, but as Kira said, my GP was much more willing to do it when I asked. I don't know why the differences of opinions....... If you can't get any of your docs to order the tests, maybe you might want to go to an outside lab. I don't think the bloodwork is too expensive.
One more side note-- my first onc (she just retired in Dec) said the problem with vitamin D is that it might be more of the chicken and egg theory. That's why I asked my GP to test it. I just told her that my onc told me to ask her for all the general tests.
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I don't have a GP (never needed one). I'm a firm believer in integrative medicine, but finding a GP around here who agrees with that philosophy has been impossible. So far, I can only find chiropractors and I don't need/want that.
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I get migraines from Lupron. I have heard that a beta blocker helps migraines, I am trying that next. How about weight gain???I am starting to get bigger on this crap.
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Here's what has really turned things around for me since starting Femara in November: in addition to my multi-vitamin and my liquid calcium/magnesium, I take 5000 IUs of D3, 5000 mg of curcumin, and a positively lovely herbal supplement called Inflamma-less by Irwin Naturals. If I skip *any* of these for even a couple of days, I start locking up and feeling OLD and tired and depressed. When I take them all, I have energy and feel pretty awesome!
My oncologist and my naturopath are both completely behind me taking the 5000 IUs of D3 per day. A little over a year ago, my D levels tested at 8. They are now at 56. My ND wants them at 70.
I felt a lot better after just one day of trying Inflamma-less. Now, after three months, I can't imagine going without it. I buy it through Amazon but I have seen it at Natural Grocers and Whole Foods. Curcumin alleviates inflammation, arthritis, and achy joints and is also a cancer fighter. I figure that one's a win-win.
Femara is not fun, but I am definitely sticking with it after seeing my PET scans from last week! They showed significant reduction in all my mets over the past four months, with some of my tumor sites now completely clear!
I'll put up with all the side effects as long as one of them is LIFE!
~Lulubee
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Great post Lulubee!! That will encourage many of us.
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Hi Jacee!
I'm taking many natural supplements but have decided that maybe, I'll give Femara a chance. I was on Tamoxifen for 2 months when I got a blood clot and the Dr suggested I stop taking it for a couple of months. When he found out I never started taking it again, he prescribed Femara. I haven't filled the script yet. Maybe like Lulubee, if I take other supplements, I won't have to suffer with terrible SE's. I'm hoping anyway. I feel for all you ladies with SE's and I guess I'll be back to tell you about mine soon.
Terri
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Terri,
Oh great to hear from you again!! Sorry about the blood clot. There is a coupon on the Femara website to get the prescription for $10 a month. Don't know if it's good in Canada or not. I've used it for a year or so. Otherwise would cost me $70 with insurance, or $525 without!!!
Don't know how much of the thread you've read, but I had to cut back to 1/2 a tablet about 8 months ago, due to s/e's. It helped greatly, and now all the joint pain is gone. ( I attribute that to upping my Vit D to 5000iu's).
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oops, hit enter by mistake.
Anyway, I'm thinking of trying a whole pill again soon and see what happens. Hope all is well with you.
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HI,
I have had so terrible SEs that I used - for the last 10 days - to take Femara every other day (without asking my ONC) it's much better, so I'll be back on every day.
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Hi Joni,
I've been reading this thread on and off for a while...lurking I guess as they call it. Every time I read about SE's I get scared off. I'm sorry to hear that your SE's were so bad you had to cut back but if it's OK with your ONC then maybe 1/2 is all we need to get by. I don't subscribe to a one size fits all regime. I didn't think that taking 20mg of Tamoxifen whether you're 100 lbs or 220 lbs or the fact that they give the same dose whether you have tons of estrogen or not makes any sense, but that's just me. I don't want to sound or come off like I know more than any of you on here. I've gone the natural route for many months now and I guess I'm starting to feel a bit unsure if I'm doing the right thing. I will fill my script for Femara and take it from there - wish me luck!
Terri
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Terri - I was so scared of Femara, but it has been pretty good (for me). I have been on it for a little over three months, and the few side effects I had are going away.
Take care!
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Just thought i would ask which of the med femara or arimidex .Is the best to take help keep from recurrance
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My feet are nearly impossible to walk on first thing in the am, and my hips feel like they are coming out of their sockets. Oh well....SE'S suck. What other options do we have?
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CrazyKitties.... ditto here. Four and half months for me and I have such stiff joints, especially hips and knees. I just ordered some Inflamma-less that lulubee suggested. Hope it helps.0
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HI, cdean1971
II wish you to stay withouth SE's! Some does!
It's my eleventh mounts, I started Femara in April 2010. The first two months I felt nothing special, later I got terrible knee, join, finger pain, But I'm coping with, taking this as a part of healing process-
Best wishes!
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nana, Arimidex and Femara work the same way they are just put together differently. I started off on Arimidex but found the side effects too much to take and I had a small progression so I was changed to Femara and have found I have almost no side effects at all. Please don't be put off by my small progression as I am stage IV not stage I. Either should do just fine for you.
Love n hugs. Chrissyb
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Texas357...where are you? I have a great Internist in Houston as my primary. Now that I am going on 7 years my onc requires that I get most things through my primary now. I can go to any doctor without referrrals.
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lulubee....sounds great. Is your onc onboard with the other things as well? I have heard various opinions about the curcumin. Have never heard of the other. It my onc says ok I will definitely try it for the energy part. Thanks
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I have to say the more I move the less I hurt. Exercise is a must. My feet also feel like eggs that will crack if I walk but this subsides as soon as I walk around. It also comes for a little while and then when I first walk it is gone for a time. Never know what to expect. But, I have been on Femara for going on 7 years and will stick with it until my onc says no more. I just believe it is why I am still as healthy as I am.
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Why do some have take femara longer than 5 yrs. I thought 5yrs was the magic number
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