FEMARA
Comments
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Jost saw my onc yesterday. She agreed to a meds vacation to see if the horrendous headaches that I've been having since late December are an se of the Femara. Does anyone know how long it take to work out of the system?
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Thank you Tender, I have been off a few days. I had my second tumor markers ran monday, They have doubled. My question is If Femara is kickin some Hiney. Can you get tumor flares??? Oh Yes the pain seems to be getting better. Thanks again Heather
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Hi all and Heather...
Sorry, Heather, to hear about your TM's. I hope it is nothing but tumor DEATH!!!
I was on Femara for three years and honestly, I never had any side effects of any kind. Every time the onc would ask me a host of questions about this pain and that and fatigue, etc... but I always answered no. i wish it was still working for me but three years was pretty good.
now I am on Tamoxifen which is also working for me but I am experiencing slight weight gain (which just does not want to come off and "warm" flashes, which I thought I was done with). But, it's worth it to me to continue doing well with Stage IV.
I wish all of you who posted on this thread to have the same experience with Femara that I did!!!!
Robin
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Hi Artsee,
Sorry to hear you have stomach pain, so far for me so good. Is it every day? Maybe it's more bladder pressure like some of the other girls have mentioned, which I have found too. Yesterday I saw my gyn for a follow up after having my ovaries removed, good news no cancer showed in the path results! To be honest I hadn't thought about them checking them so I hadn't even thought about whether or not it had spread there. Today my hands feel a little achy but it's foggy outside so maybe the moisture in the air is playing its part. Aromasin sounds to cause far more se, so probably I'm lucky that my onc recommended Femara instead, although she's open to changing it if necessary. I'm still not sure about taking meds as it'snot something I'm used to but then again what's the alternative? My gut instinct keeps telling me this thing is going to come back but maybe that's just me being paranoid. You start to imagine ever pain, lump etc is the C coming back. I haven't really discussed this feeling with anyone else as I don't want them to freak out, it's just something deep inside that I feel and to be honest no-one has asked me if I feel this way so I don't share the thought. I know it's early days still, not even a year yet since I was diagnosed. Don't get me wrong I am not depressed or anything and I certainly don't spend ever waking moment thinking about it. I guess this feeling will go further away the longer all the results come back positive. It's strange though, before my diagnosis I had kinda joked with my husband that he would out live me, he has chronic arthritis, at 46, and has constant aches and till now I didn't have even 1 day off work through illness not even a cold, I said to him "creaking doors go on forever (that's him) whereas the BIG C would get me and I'd be gone - guess what a few weeks later the lumps appeared and so the story goes. Anyway, less rambling from me, maybe it's how everyone feels deep inside with this thing and we just don't discuss it. SORRRRY for off loading on you.
Take care, God bless
Gaynor
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Hi Artsee,
Sorry to hear about your stomach pains, so far so good for me on that score. The onco told me Femara can cause constipation, which has been my main bug bear throughout this process, so maybe it's the start of that. I take a stool softner everyday with the Femara and so far no problems, thank goodness. I am like you and cannot eat breakfast but I'm trying to at least eat a banana by 9am.
Do you have any breast pain? The side I had the mastectomy on never bothered me after surgery etc till I started with the Femara and now it's tender to touch but then the boob that's left is also a little tender. When I had periods, pre chemo & oopherectomy, my boobs were always real tender & lumpy, that's why I took a little while to go to the docs in the 1st place, so maybe it's just my body getting back to normal. What's normal??? I'll ask the radiation guy next week when I go back for my check up. It's like going through a mine field taking these meds, you don't know what's a normal se and what's not anymore. Oh well
Got to go as I'm at work and got to be getting on.
Take care, God bless
Gaynor
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Hi Heatherpalmerton
can you please tell me what tumor markers are? Or where I could find out more please?
I am guessing it can be checked on a blood test. I did not have chemo so did not have any white blood cell counts, so I am just wondering if that is coming up for me. My onc wants me to do a blood test after 6 of Femara.
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Hi,
Does anyone have lingering nueropathy of the feet from chemo? Does Femara affect this condition?
Do you do anything for the neuropathy?
Thanks,
Jo Anne
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I have permanent neuropathy in my feet from Taxol and take Femara. IMO Femara generated body and joint aches and pain but the neuropathy has always consistently been there even with daily walks. Vitamin B complex doesn't seem to resolve the problem either.
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I am about to embark on the journey as well. I have to get started in the next few weeks. You guys are scaring me. I don't want to do any of this. If they got all of the cancer how high is the risk ? I had a great life!! Do you know anyone who did not do the treatments?
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Hi dlb823, I started taking D-ribose on the recommendation of my heart doctor. I had a low ejection fraction rate and irregular heartbeat, so it theoretically might help my heart muscle. My ejection fraction rate has improve and I have less irregular heart beats. When I noticed that my hip and joint pain had also eased up, I assumed it was good for that too. I'm glad to hear your thoughts. Since D-Ribose is a form of natural sugar and an essential energy source for living cells I probably should run it past my oncologist to see what he thinks. I'd hate to have to give it up since it has eased some of the discomfort, BUT I don't want to have a reoccurrence.
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Hi Lydia, I had stage 1, Grade 3, E/P + and HER - . I had a lumpectomy with clear margins, 3nodes clear, and my oncologist recommended 4 chemo treatments followed by 6 weeks radiation. I was freaked out by the whole thing, but particularly afraid of chemo. I had the option to skip chemo but my oncologist highly recommended it. I was afraid of side affects and loss of hair. However, I found it was not as bad as I expected. They have pills now to avoid nausea, diahrea, and any other side affects a particular chemo mixture might cause. There are different chemo regimens. I had taxotere and cytoxan. I had more good days than bad during my weeks of treatment. I was able to go out to eat with friends, spend a weekend out of town with a group, I went to church on the weeks close to my next treatment, went to a charity ball, etc. etc. You feel more tired and worn out the week following a treatment, then you start feeling your old self again. Plus I kept up a routine of walking on my treadmill 3 or 4 times a week. Exercising actually improved my energy. I decided early on that I was going to do EVERYTHING the oncologist wanted me to do because if I didn't, I'd live the next five years wondering if it might come back. If it comes back, I still know I did all I could the first time around. There's more peace of mind if you don't skip anything recommended by your oncologist.
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About a week ago I developed a pain in my inner wrist. Don't know if it is a new SE from Femara or if I have tendonitis. Will ask onco at my visit this week.
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Hi MsKarin,
I saw my oncologist last week with the only complaint being thumb/wrist/arm pain that funny enought, didn't start until I was on Femara for about 3 weeks. She told me it was, indeed, tendonitis and I'm being referred to a hand doctor. Because, I don't have enough specialists in my life right now. I've noticed it hurts really bad every-other day, so my evaluation is I over-use it on the days it feels not-so-bad and then pay for it the next day with tons of pain. Ibuprofen does help and I've been told a brace or cortisone shots in my hand (NOT!) will be the first line of treatment. I'll opt for the brace. Hope yours improves.
Kathy
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Hi Everyone,
Happy Friday, yeh, it's the weekend!!
I'm looking for advice Ladies. I thought my onc had said I needed to take up to 6 tabs of Calcium Carbonate per day (containing 500mg of actual calcium) each, an intake of 3000 - 3600mg of actual calciumper day. She had said that this might prove difficult as it tends to cause constipation (my main bug bear throught out this process) but to give it a try, if not 4 or 5 tabs would be OK. However I was reading a Femara booklet yesterday and that said to have an intake of between 1200 - 1500 mg per day with 1000 of Vitamin D, which mean taking only 3 tabs per day. So now I'm confused?!! What amount should I be taking, I don't see my onc for another month or so and I'd prefer not to have to call the clinic if I don't have to? I guess I could check with my chemo nurse at my next Herceptin appointment.
Your advice will be greatly appreciated.
Gaynor
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Gaynor....We need 1500 mg of calcium a day. I usually take 2 in the morning and 1 with the evening meal. I take 2-3,000 mg of vitamin D3 a day. Three vitamins of it. They say you can take a lot more of the D, especially in the winter
Buzzby...From your post I see we have everything exactly alike from DX, chemo type, rads to how much we walk on the treadmill... so far the Femara is being pretty good to me so I'm holding my fingers crossed.
Artsee
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Yes, I've been recommended 1,500 mg calcium, with magnesium and Vit. D. And remember that if you consume dairy as well as many veggies, you'll also take in calcium.
Good news on the femara front: I've been on it since August and it mainly affected my hands. Over the last few weeks, the aches have subsided -- hooray! Still stiff in the morning, but a hot shower fixes that problem.
Wishing everyone well,
Linda
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Time to jump into this thread! I've just started Femara and nice to see familiar names here -
Lydia - I agree with Buzzby and artsee - we need to follow the regimen that gives us the best chance of no recurrence. You can click on our names and read our posts that chronicle our experiences; you will see that all of the treatments are manageable. If you have a good support system, then you will do even better!
Reading the threads can be scary; we are sharing our fears and concerns with others that understand and provide guidance. I've discovered that knowing what others experience made me more knowledgeable in discussing side effects (SEs) with the doctors. You probably will not get all the SEs that are discussed; each of us are different.
When you do get a SE then this is a great place for solutions and sharing!
Mary L
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Hi Artsee
Nice to ear from you, didn't see your name for a few days and wondered where you were. I will cut back on the calcium following your advice. Someone told me to take most calcium at night as it is supposed to help you sleep, what a nice thought. Since starting Femara I find a full night of slepp is virtually impossible, the night sweats wake me up, don't seem to have many at any other time though so that's a bonus. You mentioned the other week about stmoach pains, how's that going - I had terrible pains yesterday but today it's ok. No major aches or pains so that's good. I also notice recently I am getting more headaches but that might be the sleep problem too and not necessarily a SE of the Femara. I have my next Herceptin Tuesday so I know to expect to feel cold for a few days afterwards,other than that Herceptn doesn't cause me any problems, already halfy way through that treatment, can't believe how quickly the time goes by.
Mary, I agreed this website is a Godsend. It's nice to be able to ask advice from pepole going through exactly the same thing, be able to share experiences and concerns without having to wait to see your onc.
Well time to go as the weather here in Ontario is nice for a change so I want to get some tidying done around the garden, gardening has been my saviour over the last 10 or 11 months.
See you
Gaynor
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Gaynor...I am so jealous that you are 'tidying' in the garden already. Here they are predicting snow tonight and tomorrow..again. It's never ending. all I want is to get some natural vitamin D.
I haven't been on here in a little while because we buried my father-in-law this week. We've been busy. My DH found him in his bathroom. We sure will miss him. He was 88 and still working part time at our local hardware store where he knew where every nut and bolt was.
The reason I take my third calcium at night is because of the fact that it is supposed to help in sleep. I also take Melatonin 3mg.
My stomach pain has disappeared as soon as I didn't take Femara on an empty stomach.DUH!
Well, the instructions said empty or with food.
Time to hit the hay, talk more tomorrow, Artsee
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Wow, artsee, we have walked the exact same path at the same time! I was diagnosed on Jan. 15 2008, which was the day of my biopsy. The technician told me she could tell it probably would be cancer, and it was confirmed on the 17th by the actual evaluation of the tissue. Our only difference is that I'm on arimidex. I do have joint pain, mainly in my hips and lower back. My oncologist said that was a typical side affect. But the D-ribose makes it more tolerable.
I think you are right about calcium helping with sleep. I only take one tablet of calcium a day and was taking it in the morning. This week I started taking it at night and I have noticed I go to sleep much quicker and stay asleep. I also take melatonin - 1 mg.
Sorry to hear about your father-in-law. A horrible experience for your husband to stumble upon and the grief of you all having lost a loved one.
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Artsee - What a loss to your family and community. Thank you for letting us know.... your love and respect for him is evident from just the short bit you wrote; he must have been a gem.
Is anyone else having difficulty describing this phase of our treatment? If you say hormone inhibitor, everyone assumes it is not big deal. I'm thinking about describing it as chemo lite because so many of the side effects remind me of chemo!
I'm on day 4 and am also taking calcium. For those of you taking 3 calcium pills (1500 mg or so) do you also eat dairy/other calcium rich foods? I take one calcium pill (600 mg or so), but try to get most of what I need through my diet.
Mary L
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Hi Artsee,
So sorry to hear about your father-in-law, it must be a tremendous loss to all of you, please accept my condolences.
I spoke too soon about tidying in the garden as we got dumped on with snow yesterday and it's in the forecast for the next few days too!! Roll on summer.
Buzzby, I was surprised to read you only take 1 calcium pill per day but I guess our oncs recommend different for everyone.
Artsee, I'm glad to hear your stomach problem has cleared up.
Mary L, I kind of know what you mean although for me some of it is in reverse. Our family are all back in the UK and sometimes I feel they over dramatize all of this. I want to feel as normal as possible and therefore I play down the all thing, plus I don't them to worry too much. Most of the time I feel great and people who don't know would never realize, which works for me. I prefer to keep any worries about the future to myself. I know that's not always a good thing but really this whole experience has made me realize no-one is invincible, if it comes back then I'll deal with it at that time, luckily for me I had very few side effects through chemo, rads etc and continued to live my life the way I always had. Really if it wasn't for losing my hair people around me would not have known I was going through any kind of treatment. I have been extremely fortunate with a very strong network of true friends and family. Some of things I talk about with you guys I haven't shared with others as I don't think they understand, they hear the word CANCER and freak out. Life will continue with or without cancer, as Robert Buchman's book says cancer is a word not a sentence.
Well there's my philosophical speech for the day.
Must go as I'm at work and have to leave soon for the hospital, herceptin day.
Love Gaynor
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Hi all,
Just started last night. I have really obsessed on this and went to the onc yesterday with a million questions. He spent a good deal of time with me. He said I can try it and if I can't tolerate it we'll try something else. A friend came with me. She is a nurse and has gone to most of my appointments with the surgeon. She has a great crap detector and says he is good and "sweet." I also took a digital tape recorder so that I can review what he said.
His office just called and asked for the bone density I had done last summer (before all this started). Before I even started to send it to them. It shows that I am osteopenic. Since my mom has osteorporosis I am concerned. I have been trying to remember to take 1800 of calcium a day, but it makes me so constipated.
I thought to ask for a copy of all the blood work that was done before the surgery when I checked in. (Duh. My surgeon would have given it, but I did not think to ask for it until I was on this thread recently.) There were some numbers that were off. My friend asked him about them and he ordered some more blood tests. I see my primary next week for a 6 mo check for my high blood pressure in so will have a lot of questions and ask for more tests that I want. I want more baselines to see what happens on the Femara.
I'm already on some of the meds you all talk about for se. I have been on massive doses of effexor and celexa for years for anxiety/depression and neurotin for sleep. My psychiatrist is great.
The onc office had the phamacist in the building fill it for me, but their pharmacist was not much help. She said that it would cause drowsiness so I started at night. She did not include the patient information sheet. I talked to the office about it when they called.
Thanks for all the help so far. Hope I won't need any in the future!
Mary Jo
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Thanks guys for all your kind words.
I do consume calcium in other foods (not milk) but I still take 1500 mg a day. I take a daily vitamin that has some in as well. I don't want to take any chances that i won't get enough. Gotta be as good as i can be to my bones.
I can not believe the difference in Aromasin and Femara. Aromasin was 'bruttal' and Femara is like I'm not taking any at all. Hope that doesn't mean it's not working.
Artsee
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Hi Artsee,
I am taking 1800mg of calcium per day now plus a little in a multi vitamin I take plus anything food and drink has to offer. I got bloodwork done yesterday and guess what my calcium levels were high, I can guess why as I had been double dosing up to you guys giving me advice and so cutting back.
I haven't tried anything else in the way of AIs so I can only comment on Femara and like you I don't really feel like I'm taking anything just the odd ache or headache but nothing out of the ordinary, and I feel kind of the same .. hope that doesn't mean it's not working.
I was talking with my best friend at work the other day and she said we'd have to celebrate my cancerversary as it's almost a year since I was diagnosed but I said I'm not sure which date to work with, the date I was diagnosed, the date of my surgery, the date chemo and rads ended ...just not sure, perhaps you can all help me with that one. I think it should be the date of my surgery, she thinks it the date the treatment ended but as I told her I'm still getting treatment and may be for some time, she said she meant when the real treatment ended (chemo & rads) - she hasn't had cancer and therefore I forgive her for not fully understanding the concept of the treatments we take.
It's still snowing here, at least only a little now and it's supposed to clear up after today ready for the Easter long weekend.
Happy Easter everyone
Gaynor
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About Femara not working if you're not having symptoms:
My onc says "Don't worry!" It's no different than people who age differently -- some develop arthritis in their hips, others in their knees and so on. And some don't develop it at all!
A lack of estrogen affects everyone individually. My hands ache, and my hair is thin, but I don't have any hot flashes (never did before bc either). But some days my hands don't ache at all, and that doesn't mean the Femara isn't working.
Artsee, so glad you're finding Femara so much easier than Aromasin. Guess we're lucky to have at least some choices in our hormone tx
Linda
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I hate femara!
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HensonChi,
Why do you hate femara? I just started taking it. Any information would be appreciated!
Linda
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HensonChi - and how long have you been on it! I too have just started it (now 8 days)
Mary
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Good morning everyone!
I just got out of the shower and I really noticed my hair coming out. I gathered this can be a s/e of Femara, but can anyone tell me how much can I loose? Am I going to be bald again? UGH!
Artsee
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