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FEMARA

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  • Harley44
    Harley44 Member Posts: 2,126
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    YIKES!  I already have memory problems...  I hate to think what will happen once I start the Femara...  

  • eph3_12
    eph3_12 Member Posts: 2,704
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    Harley & all, Knock on wood, I'm not having any SE on Femara (started 11-16), except for an occasional hotflash.  I already had joint pain & it hasn't increased.  My hair is coming back in from chemo OK, not noticing any thinning and hell, I'm 55, my dad has Alzheimers-my memory weaves in and out, always has, but I'm not noticing any difference so far!

  • gauleyeagle
    gauleyeagle Member Posts: 24
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    Aug242007   I had a god bit of hair thinning and my hair also stopped growing.  Started taking Biotin 5000 mcg and thinning stopped and hair started growing again.

    blondiex46   I had the recurrence of breast cancer--tumor under arm on same side as the breast cancer.  Here I thought, after 14 1/2 years that cancer was just a bad memory!! ha  Mine was diagnosed in March 09 and had surgery first of April.  Unfortunately, the surgeon couldn't get it all because it had attached to an artery.  Guess I will be on the femara for a little over 4 years!!  I am scheduled for a PET/CT scan this week (thursday).  Hope and pray the rest of the cancer is gone; I do have a lot of faith in God, so I know this will help.

  • blondiex46
    blondiex46 Member Posts: 2,726
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    thanks so much for your response and I know what you mean.  My ono said that if they went into get the tumor they couldn't get the whole thing anyway and that concerned him so Femara is the way to go.  I went today and told him that I was getting a 2nd opinon and he was fine with that, I was more concerned then he was and he said (which I didn't know) that he is hoping the Femara will shrink the tumor and that the point of treatment this time is to give me something that will work with the lessest side effects which makes sense.  I am still in the 14 year ago mode a) cause I have cancer growing in me and they can't get it out and b) that it is 14 years later and there are new things out there that maybe can help. Been on F for 3 weeks no side effects cept for being tired the memory loss is always there.

     My thoughts and prayers are with you. Let usknow the results.

  • dsgirl
    dsgirl Member Posts: 193
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    Hello, I have a question for WELGA and GAYNOR because you mentioned you were in Canada.

    Do you take the generic Femara or the Brand ???

    The cost for me here in the US is so high, (I have a medicare plan for drugs) I will be paying over $300. per month by April or May due to arriving into the so-called doughnut hole; I have several other prescriptions to fill every 3 months and 2 of these are Brand drugs that are not available as a generic.

    I wanted to buy the generic Femara from Canada, planned to buy 100 tablets at a time, at a great price, and my doctor would not give me a prescriction if I planned to do that. I told him Canada is not a Third World Country, but he still nixed the idea. I am not sure if the Pharmacy I would chose in Canada would contact the doctor or not but I am thinking of just getting the regular 90 days prescription from him and send it off anyway and see what happens if I decide to start taking this drug, I am still undecided, am just barely 7 weeks post rads, and want to feel better before and/or if I start taking Femara. I have been reading the posts in this thread, and it does sound like lots and lots of side effects are being experienced by most.  I salute the ones taking Femara even though they experience all these ugly side effects.Grrrrrr. I hate cancer. 

    dsgirl

  • Jane_M
    Jane_M Member Posts: 932
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    I went to the Femara web site and I see that they have a coupon you can take to your pharmacy and only pay $10 per month.  I printed it out for the next time I have to renew my Rx.

  • Harley44
    Harley44 Member Posts: 2,126
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    ,,,my onc gave me a card that I could use, so my Rx for Femara will only cost $10.  However, with my insurance, I only pay $9. 

    If I wasn't so worried about this health care reform plan changing my insurance benefits, I would give my Rx card to someone else. 

    I'll be starting the femara....  tomorrow...   I am so scared about these AIs!!  

    Harley 

  • crazy4carrots
    crazy4carrots Member Posts: 624
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    dsgirl:  I'm Canadian and just wanted to let you know that there is not a generic version of Femara (letrozole) available here, only the brand Femara made by Novartis in Canada. I just picked up my refill today and the cost for 100 tabs was $618.31 (which my supplemental insurance pays for).
  • Harley44
    Harley44 Member Posts: 2,126
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    Hi Linda...  I didn't think there was a generic, or my dr. would have written the Rx for generic... and generic costs less...

  • Welga
    Welga Member Posts: 88
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    dsgirl

    Hello, well some have actually answered your question, I was going to tell you the same,no generic,

    have you found something generic at an online pharmacy. If so maybe it's not the real Femara, here in Quebec we don't use much online pharmacy, there has been a lot of bad publicity about some of them selling false meds. Hope you can find a way to solve this problem, 

    Welga

  • sunnyfornow
    sunnyfornow Member Posts: 12
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    Harley44,  I will be starting Femara next week after my first visit with the dr after finishing my rads.  I went to their sight and got the med card that says you can it filled for $10 at a time.  I am hoping it is still good in 2010.  I guess we will be be seeing any se together with this stuff.  I expect to get more hot flashes than I already get, but I sure hope not.  Mine are now just starting to go down in in strength.  I guess I will soon find out.  Keep me posted on how you are doing.
  • reeltchr
    reeltchr Member Posts: 139
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    sunnyfornow and Harley44, I also will be starting Femara (tomorrow) and am a little anxious about it. I would be interested in hearing how we all fare and giving/getting support will help us get through it. We can do it!
  • kdeit
    kdeit Member Posts: 20
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    dsgirl,  I have been getting most of my meds from www.alldaychemist.com.  They are an Indian pharmaceutical and their meds are generic versions of our US brands.  They are not bound by US patent laws and can manufacture a generic after one year.  The manufacturing plants are all FDA inspected and approved, because many of our US generics are also manufactured there.  I've used them for the last couple of years and have not had any problems.  They do state that you must have a script, but have not asked for mine.

    They charge a flat $25 shipping fee, no matter how many meds you order - I have been ordering 6 months worth of 5 different meds at a time.  Their version of Femara costs $7.00 for 20 pills.  So I can get a two months supply for $21.00.  

    You might want to check them out. I also get meds for my COPD and gastro problems, and they seem to be just as effective as the brand names.

    I hope this helps.

    Hugs,

  • Harley44
    Harley44 Member Posts: 2,126
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    sunnyfornow and reeltchr

    I guess we are starting at the same time...  

    Chris,

    I'm starting Femara tomorrow, too...    well, you are right... at least we can post here, and pm each other to see how we are doing...   it seems this is another chapter in my treatment... 

    Happy & Healthy New Year to us all!!!

    Harley

  • Caya
    Caya Member Posts: 46
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    I'm starting Femara in a day or two as well.  My onc. wanted me to switch from Tamoxifen in October, but I was really dreading it, so I had my gyn. run the blood tests to see how my hormone levels were - 2 tests a few months apart, def. post-men. now.  I'm 51, 2 1/2 years on Tamoxifen - I guess I will have to do it.  I am not looking forward to this switch.  I was diagnosed with fibromyalgia this past spring, I am very worried about the Femara s/es. 

    So I'll be joining the 2010 Femara crew. 

    Caya 

  • dsgirl
    dsgirl Member Posts: 193
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    Hello, and thank you all for the replies re canadian mail order/prices.

    I found a website (for Canadian and other countries), it is called: pharmacychecker.com. I shows both Femara and the generic version at many of the canadian pharmacies, and I guess I just assumed it was available and made in Canada. Maybe that is why my Onc. said he did not trust the generic from a Canadian Pharmacy, but I wish he had been more specific.

    Kdeit: Thanks I will check the one you posted, if and when I start taking Femara.  I also have the coupon for $10. for 30 pills from the Femara website, however since I am on a medicare drug plan, it's not acceptable for this coupon. My pharmacist said I could buy the drug outside my medicare drug plan, but the $800. maximum allowed with the coupon would be used up in 2 months, because the regular price for 30 tablets is $436. but at least that makes 1 month where I would only pay $10. for 30 pills, and the second month would be around $62.00 and still a bargain?

    Paying a premium price for a drug that is probably going to make me feel like hell, that comes with no guarantees that is will keep the breast cancer away, is a real crappy way of trying to stay away from recurrence. Most of the cancer treatment choices are like that.

    Thanks all

    dsgirl

  • dkerler
    dkerler Member Posts: 41
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    Hi ladies,

    I started Femara on June 22nd so it has been 6 months for me. I have aches and pains but with using Tylenol for arthritis has been pretty much under control. I have noticed some short term memory loss but I don't know if it is from the chemo or from the Femara or both. I joined a gym but it is still too soon to tell if it is helping with the stiffness and aches. I'm still not past the muscle pain I have after working out. I have not lost any weight but that too is still too soon especially with the holidays.

    I am eating prunes but so far there has been no difference but I will continue.

    I do plan to take Femara for 4 1/2 more years even with the aches. It's much better than a recurrence if it works.

    Happy New Year to all you beautiful ladies.

  • Harley44
    Harley44 Member Posts: 2,126
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    caya,

    well, there are a few of us who are starting Femara around the same time, so we can keep each other updated.

    ok... What exactly is the benefit we are supposed to get from prunes?  I HATE prunes...

    dkerler,

    Glad to hear that you aren't having too much trouble with Femara.  Today is day #3 for me...

    I switched after taking Tamoxifen for two years.  Just taking it one day at a time, and we'll see how it goes...   I guess it's good to know that if I have too much trouble with femara or the other AIs, I could always go back to Tamoxifen to finish the 5 years.   I also feel that it's important for me to finish the 5 years of treatment.

    Let's keep each other posted on how this phase of treatment is going... 

    Harley

  • Monty
    Monty Member Posts: 146
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    Hi Ladies

    Sorry I haven't replied earlier but I was on vacation for the Holidays.  Before CHristmas I decided to switch back to Femara from Arimidex as I coudln't stand the constipation, I couldn't go (if you get what I mean) for a week at a time even trying laxatives & stool softners so I decided I would rather go with the aches & pains than the uncontrollable constipation.  The aches & pains continue in my pelvic area and stomach as well as the usual hands, feet etc.  I am thinking about going to see my doctor and get this checked out as I started with horrific pain in my hip/lower back & pelvic area.  I went to see a chiroprator as I couldn't get an appointment with my doctor and the chiroprator thought I had displaced my right hip but I'm not so sure as this pain has continued for 3 weeks now, but it's now more in my pelvic area - kind of like menstrual pain except I don't have my ovaries so it can't be that.  I hate going to the doctors as I feel like I might be wating their time because most symptons can also be put down to the SEs of Femara.

     In answer to somone elses question regarding the cost of Femara - I am lucky that my husband's benefit plan at work pays the majority of the cost, leaving me $15 to pay and they give me 3 months supply at a time.  The arimidex was around the same cost (I see the full cost on my receipt and it's scary).  I have considered stopping AIs altogether but my onc said I would be playing with fire as that moved would increase the chance of recurrence by 50%.

     My hair has never returned to the way it was before chemo, the texture is finer and the overall the  amount of hair is less but I was lucky that I had very hick hair before this all began so it isn't noticeable to most people.

    Another thing I have noticed is that I get sores around my toes, which I thought was athletes foot but when I switched to Arimidex it disappeared but within days of going back to Femara it came back and no amount of ointment seems to get rid of it totally.

    I would love to have my pre cancer life back where I had loads of energy and zest for life but I know that's not going to happen.  For anyone new to all this just persevere, there are worse things that can happen.  Hopefully, like me, your life will begin to get some normality back, you will not think about cancer every day although you will not ever not think about it - I believe that's just not possible.  I have started thinking more for the day than planning too far ahead, I worry every time we organize a vacation that's months ahead but I know that's insane.  It does bug me when I see so many commercials on TV talking about life insurance & planning for retirement as I know they won't want to insure me etc but that's life for you I guess.

    Keep your chins up girls, there are worse situations in life, and we are the lucky ones that survived to tell the tale!

    HAPPY NEW YEAR, HEALTH, WEALTH & HAPPINESS TO ALL

    GAynor

  • debisongbird
    debisongbird Member Posts: 26
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    I'm actually on Aromasin and have the usual aches and pains (but nothing unmanageable.) But, what I was wondering is what do you ladies do for the fatigue we experience on these A.I.s? Does anyone have any suggestions? Also, I'm wondering howmuch Vit D I should be taking. I take 600 of D3 with my calcium, but I don't know how much is recommended. Any info there? My onc won't get my D levels tested (I asked,but I'll ask again.) Thanks, Debs

  • Harley44
    Harley44 Member Posts: 2,126
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    debisongbird

    You need to get that vitamin D test done first, to see where your levels are right now. 

    Some drs. Rx 50,000 IUs if your D levels are very low.  But mine were in the low normal range.  My drs. didn't prescribe any d...  so I have been taking 6000 IUs a day for the past few days.  Just getting started so I guess I'll see whether it helps or not.

    Harley

  • Monty
    Monty Member Posts: 146
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    Hi Ladies

     I wasn't given a Vitamin D test, wasn't told there was one come to think of it.  My onc told 1000 iu per day with around 2000 iu Calcium Caltrate as apparently that absorbs better.

    Fatigue - I'm not sure about that one.  I haven't really suffered from that one because the Femara does not let me sleep, I have been taking a nightly sleep aid for as long as I've been getting treatment as I cannot sleep day or night without it.  I do know I am beat by the time I get home from work though.  If I'm tired at when I'm not at work during the day I try to have a nap but as soon as I lay down I'm wide awake again, which is a pain.  I believe that by getting a full nights sleep with the med I take it helps combat any fatigue during the day.

    Any of you other girls having problems with the constipation thing?  Hip/pelvic problems? The pain is in my lower back around my right hip, and the front of my hip bone hurts - more when I sit down than if I stand or walk?  I continue to have theusual aches & pains all over but I guess I'm just getting used to that being there.

    Well it's another full day at work.  TGIF tomorrow.

    Love & Best Wishes

    Gaynor

  • artsee
    artsee Member Posts: 701
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    Hi Gaynor....It's nice to read your posts again. It's been a long time since I've spent any time on these boards. Been very busy and traveled in Europe most of Oct. and the holidays seemed to never end. I haven't had any problem in the garbage elimination area. I've had the problem long ago but I forced myself to eat Total w/pomegranate and yogurt and no problaymo. Try it. Say Gaynor, can you explain the "mets" that you have indicated in your Diagnosis line/ I don't remember that. Maybe it's the memory loss.....hey I think I may have found a Femara s/e. Or it's from chemo. Simply fried my brains I think. It's good to hear your doing well. I'm going to Arizona in Feb. to visit friends and the day after I get back I have my check up and Mamo. Then I'll get nervous again. i'm OK for the three month and then I get rattled the day I get the big squeeze. I think that will continue forever.

    Take care all and may you get  rid of the nasty s/es.

    hugs,Artsee

  • gauleyeagle
    gauleyeagle Member Posts: 24
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    Nancynowak  Congrats on completing the 5 years on femara.  I have a question about weight gain--I have gained weight but only in my stomach!!   Did your stomach get bigger; and if it did, has it gone away any?  Have been on femara since July 2009 and I look about 6 or 7 month's pregnant.  My clothes size has already gone up one full size.  I can't afford to get much bigger in the stomach because I am only 4' 11 1/2" .  Any bigger and I will have to do major alterations on the slacks!  I don't sleep at all at night and my legs bother me but it just feels more like nerves because they don't hurt.

    Anyone who has had stomach weight "growth" please let me know how bad yours is. 

  • Harley44
    Harley44 Member Posts: 2,126
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    NancyNowak,

    Hey Congratulations on finishing Femara!  I can't wait til I'm done with these hormonal drugs!!
    I took Tamoxifen for 2 years, and have just started Femara about a week ago...

    Yikes, on the leg pain... don't know what that could be...  maybe this will get better the longer you are off the Femara...


    Hugs to all

    Harley

  • momand2kids
    momand2kids Member Posts: 118
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    Hi,

    while I am able to manage most of the femara se's (still working on the vaginal dryness!) I do find that emotionally I am just very "neutral".... I don't get too worked up about anything--- this is not necessarily a bad thing, but it is very strange-it definitely works for me at work, lol--- but I also seem to have a sort of "fuzziness" that only I seem to notice--others in my life don't see it--but I don't feel as "sharp" as I have felt in the past... does this sound familiar to anyone?  

  • Jane_M
    Jane_M Member Posts: 932
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    I have the belly fat, too.  I've never been skinny, but my weight was always in the hip and butt area.  Having belly fat makes going foobless a problem because I look too fat without something to offset it.  I have gained 20 lbs since I started chemo, 10 of which were after I started the Femara.  I think the first 10 were from the steroids.  I want to eat all the time - even when I know I don't physically need to eat.  I hate it!

  • Harley44
    Harley44 Member Posts: 2,126
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    ...I have noticed that I seem to be very hungry, too, since starting Femara...   this is NOT a good thing...    I have tried to increase my exercise, but it is so cold outside, it is very hard to stay motivated...

    Harley

  • nanna
    nanna Member Posts: 138
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    I also have the belly fat. I am over weight a was just wondering if anyone lost weight while on femara. I try to diet and just cant loose the weight.

  • caroleb
    caroleb Member Posts: 14
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    Took a "vacation" from Femara and 4 days later my depression symtoms got much less. Started to feel much more energetic - a bit like my old self. The pains and aches I could handle - the anxiety, extreme fatigue, sleeplessness finally got to me. Had no interest in the things I liked doing.  What a way to live!   I did decide to take the 150 mg actonel for osteoporosis.  Took it last Friday; Saturday had IBS symptoms and hip pain.  During the night I got achy shoulders and arms and thumb.  Don't feel a whole lot better today.  I'd like to hear your experience with Actonel. This is my second experience with BC.  Stage I ER neg in 2008; Stage I, ER Pos April 2009.  No lymph involvement.   

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