FEMARA
Comments
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Kristy Ann - I take about 3000 IUs daily of Vitamin D - what is D3? and 50,000 once weekly? I will ask my onc about this next time I see him.
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mama1050 - wishing you all the best. prayer coming at you from New York!
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Thanks Welga! All of you ladies are very helpful and supportive. I am taking Calcium and D3 every day to protect the bones per onco and gyno but nothing other than that but it if I do get hit with SE's I will check out all of the supplement threads. I think someone asked about Effexor XR for hot flashes and I take a low dose every day and it has been wonderful. No real hot flashes (and I had them like crazy during chemo and a few years back when I was on a fertility drug) to speak of only a little bit of heat and then it goes away. I recommend it but I know like all drugs it is probably not for everyone. My BFF took it for a different reason and it gave her flu like symptoms if she was even an hour late taking it. I haven't experienced anything like that. It does not have a generic either and can be pricey if you don't have insurance or if they don't want to cover it. Mine tried to have my primary care recommend something else that had a generic but I appealed and won. At the time I was about to start Tamox and they were not recommending any other antidepressant with Tamox. Couldn't take Tamox but still liked Effexor enough to stay on. It has helped me get through this crazy journey. Best wishes to all.
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HI Ladies,
Sorry I haven't posted for a while but I've been so busy with medical appointments during the day and by the end of the day my hands hurt so much I don't feel like typing. I dislike Femara with a passion and I am going to talk to my onc next month and see what difference it will make to my overall outcome if I stop taking AIs. I am 45 and feel like I'm 90 by the end of the day. My hands are probably the worst although I ache every where, like real deep in the bones. I have also found that I just don't feel like myself, tired, fed up and hard to motivate - I hate feeling like this. I am/was stage IIIB, diagnosed May 2008 and had surgery etc throughout 2009. I, like many others it seems, fell chemo was so much easier. I just had my last herceptin treatment and wonder if not taking this anymore may help with the aches, maybe? I cannot remember what percentage difference my onc said the Femara would make to my recurrence rate. I know that when she recommended Femara she said it was the easier of the AIs to tolerate so I am kind of unsure about trying anything else. I had hoped that once chemo etc was over things would get easier not harder, I don't know that I want to feel like this for another 4+ years! Oh well that's my moaning done with, back to work now,
Thanks ladies for listening to me, it sometimes helps to talk to someone else who knows what its like.
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I am with you!!!! My onc said after one year I could try a month without it and then start again. He told me that this has worked for some of his patients in diminishing the se side effects. I am wondering if anyone has felt like they are truly losing thier minds? Just feeling spacy and forgetting things and feeling so unproductive? I can't use my brain sometimes and feel like something is really wrong inside! I seem to attribute everything to this little yellow pill but maybe it isn't always the AI's fault. Any thoughts?
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Eugienie & Gaynorl - I was told by my oncologist that my chances of recurrence would go up 30% if I came off the Al's. Anyway you cut it - you are depriving your body of the estrogen it is supposed to be making - side effects are going to happen. The Al's are actually more of a deterrant to recurrence than chemo is. Arimidex is harder on your bones/joints than Femara. Feeling spacey was a side effect of chemo - but I agree - it's still there even after 10 months of being off of it. I came off of Arimidex for 3/4 weeks before I went on Femara. I felt SO much better during that time. Five years is going to seem like forever. There is talk now to change that to 10 years! I'm tossing and turning with my decision to stay on Femara. Is there anyone out there that can honestly say they started to feel better the longer they took the Femara?
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Gosh Wblibrary, I hope you get a yes to your question, it would give a little hope. I'm starting to get severe headaches. Recently, the joints in my hands are stiff and achey. hugs Angel
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mary 5454,
I take 2000 IU od D3 daily- its a small tablet that the pharmacy at the cancer center keeps in stock so we buy it form them- I have also seen it at a local pharmacy. The once a week prescription is 50,000 IU of Vitamin D- that is how it is labelled and I think it is D2.
Kristy
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Thanks Kristy. I had a Vit D level taken today - should know in a week. Then plan on calling my onc re; a prescrition for the 50,000 once weekly. Thanks for the advice.
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Thanks Kristy. I had a Vit D level taken today - should know in a week. Then plan on calling my onc re; a prescrition for the 50,000 once weekly. Thanks for the advice.
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ANY ONE STAYED OFF LONGER THAN 30 DAYS? HOW OFTEN CAN THIS BE DONE MY ONC SAID NO TO A BREAK FROM THIS
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Nana, My onc. said NO as well. I am in my last year of Femara- counting down to August of 2010. Took an accidental break with changing of insurance and home delivery meds. Could tell a difference even during this short period. But I am a 3 time survivor and am sticking with Femara as long as recommended.
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Mary5454 - did you get the results of your Vitamin D check?
Kristy
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I was wondering when you ladies take your Femara pill, morning or night. I'm trying to find a way to minimize the se's.
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I decided to take mine with supper, as that seems to be the only time that I'm guaranteed to remember to take my meds. Morning & bedtime ones I sometimes forget. I've only been on it for about 2 weeks, so I can't comment on SE's yet. I've got this forum marked as a favorite, so I can keep up with everyone's suggestions.
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I take mine first thing in the morning- didnt notice any difference in side effects with changing the time and thats my best time to deal with it. I am in the neratinib trial now and I like to separate the femara from the neratinib so I stuck with early morning and the other one is mid morning with food.
Kristy
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Kristy....What is neratinib trial?
dkerler....I always take it in the morning with my coffee. The only medicine have been told to take it at bedtime is Zocor. You might never get SE from Femara. I had the minimal, some hot flashes at the beginning and very difficult to loose weight. (still)
Good Luck.
Sheila
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I take mine in the morning but I am having lots of aches and pains especially after I sit for awhile.
I started Femara June 22nd and it seems the aches are getting worse especially on rainy days.
Does anyone take supplements? I take glucosamine, omega 3 fish oil, Vit 3, magnesium citrate, B complex and of course a daily vitamin, baby aspirin and calcium.
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Just thought I would add my experience. I started femara last Christmas after being dx May 08, followed by surgery, chemo & rads. I had no side effects at all until very recently when I started with the joint pain in my hands (especially my thumbs). I am taking glucosamine daily and I'm sure this helps.
Having said that, my memory is awful and although my energy levels are a lot better I do feel soooooo tired every couple of weeks.
I can live with it as long as it keeps the beast at bay.
Keep well.
Malx
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Started my Femara on Oct. 1. Side effects minimal so far, some hot flashes and minor joint pain, especially in my shoulders and elbows. I take my pill first thing in the morning and that seems to be when my SE's are the worst. They fade during the day with movement and exercise.
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what is SE's?
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SE = Side Effect
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I take my Femara in the morning - I've tried both morning and night and it doesn't seem to matter what time of the day you take it - it's in your blood stream to stay for longer than 24 hours anyway. You will have the side effects no matter what time you take it. I still haven't received any replies to my question about the side effects lessening the longer you have been on the pill. Love to hear from people who have been on it for over a year - did your side effects lessen?
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wblibrary... I have been on it since March of 2006. Like I said in my previous post I had hot flushes at least a year then they disappeared.
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I've been on Femara since 9/05. I still have hot flashes, but no where near as bad as when I started the pill. If I watch what I eat (spicy foods and alcohol), the tropical vacations are relatively mild. I do have aches and pains in hands and legs, but keeping active helps a lot. These are worse if I sit a long while- long trips in a car are the worst. Memory is fuzzy, but is this the pill or menopause ????? And I take my pill before I go to bed. Never saw any difference one way or the other with me.
Rita
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Seyla, The neratinib trial is a trial of a new drug for us HER2+ ladies- it is an oral medication and works similar to Herceptin but it also blocks other HER receptors and not just the HER2 receptor.
dkerler, I take Vitamin D3 daily and Vitamin D2 (prescription) once a week- if you are having joint pain and bone aches, please ask your doc to chek your Vitamin D levels- mine have almost completely gone away since getting my Vitamin D at the right level
Kristy
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Seyla and Aspen - thank you for your replies. Did the tiredness get any better with time?
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I don't recall any tiredness. I was still on Herceptin when I started Femara.
I really believe some of it is emotional tiredness, after all the tests, port in, chemo, Neulasta, radiation it drains you. I don't feel tired, <meant from Femara> until I started reading the posts few months ago, didn't even realize the hot and cold flashes were related to the med.
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When I first started Femara I would poop out by Thurs or Friday of the work week. But gradually that went away and if I take my vitamins and stay active, it is really not a problem now. For me, all the SEs gradually diminished or became tolerable to the level of not really paying any attention to them anymore. Perhaps when I am able to finally stop the pill, I will then see how many SE there really were. As for now, things ain't so bad. Just keep hanging one day at a time.
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I have been taking femara for nine months now. I take it in the morning as that is the best time for me to consistently remember to take it.
dkeler: besides calcium,. I take glucosamine and chrondriton , Vit D - 3000 day, omega 3 and a multivitamin.
I think my ,muscle/bone pain is a bit better than in the beginning. I am still tired (fall asleep riding in a car); hot flashes seem a bit less than in the beginning - now about 1-2 a day.
I would like to have the pain in my legs gone - i work out 5-6 days a week- I think that helps.
Kristy- I got my Vit D levels back - 68. My internist said that's fine - I belive it is in the optimal ranger - my onc hasn't seen it (I see him early december)- I want to ask him about the weekly 50,000 IUs- but fearful he will think it will put me in the toxic range. I want to try everything to feel "normal".
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