FEMARA
Comments
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Jean, sorry to hear about your progression. I guess Femara, like all other AIs don't work for everyone but hopefully you will have success with the Megace - that's not a drug I have heard of before. Please let us all know how it goes? Gaynor
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Jean, that is very unfortunate. I hope that the Megace will be effective.
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Jean, so sorry about the added stress you are experiencing. Nobody wants to hear that.
I was so hoping Femara was my little miracle pill and for everyone that takes it as well.
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Is there anyone besides me that gets constipation from femara and tamoxifen? I did 5 yrs of tamoxifen and 4 yrs so far on femara. I stopped taking it a few yrs ago and my bowels worked good after 5 weeks then I went back on it. I use stool softeners and senna every day and have to use a suppository once a week. The doctors know about this but it doesn't bother them. I also had a bowel resection in 2009 when my colon collasped. For 3 mts my bowels moved good but they went back to the old way after that.I get naseau at times.I am so tired of hot flashes and everything I am thinking of quitting femara now.
I was 2 cm ductal and lobular, stage 2 ,1 node micro,grade 1,4 chemo, mastectomy and a preventive mastectomy a couple of years later. 2002 cancer and 2005 preventive. I don't know if i need the 1 year of femara left? What do you all think? Thank you so very much, jinky
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Jinky, can't answer your Femara quandary, but as to the problems down below... Femara did seem to constipate me at first, but I've had no trouble whatsoever since I started taking curcumin at my naturopath's suggestion (6000 mg per day). Seems like the curcumin helps keep things moving along beautifully (in addition to all the other supergroovy stuff it does).
~lulubee
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Padiddle..................Not great news..............so sorry to hear that...............the real kick in the ass is..............we take this crap, deal with all the SE's for those who get them whether minimal, or nasty, and then we find out after all that , we get a recurrence........................I realize everyone is not getting out of this cancer crap completely, but when you hear of someone who has done it all right (like the friggin MO's, RO's, BS's, have asked you to do, including the lousy SE's, and then this happens..........................I am so angry right now I could "spit"...............it just is not fair........................good luck Pididdle........I will be praying for you.................yea I'm taking the "devil pill" too.....................
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Hi Jinky,
I suffered from major constipation going through chemo then on to Femara. Last year I had emergency surgery for a twisted bowel and after that for a while went the other way but now have bouts going either way, differs day to day. At least this means if I can't go for a couple of days I know it won't last too long, LOL. For me the lack of energy and "chemo brain" are worst - I used to have such a good memory but now I am often lost searching for words etc. I also find that I do not handle stress/pressure nearly as well as I used to, not sure how others find this? I prided myself on my ability to multi task, now if I don't write things down I am not guaranteed to remember even important things, and pressure at work makes me feel like crashing on occasion. Good job life at home doesn't have nearly as many pressures, thank God. For now I will continue to take the little orange pill, I have a young friend who was recently diagnosed with mets and this made me rethink whether or not to stop taking Femara.
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Hi Monty
I am so happy you let me know I am not alone with this. Yes my constipation started with chemo, then tamoxifen and now femara. The onco told me you can't get constipation from femara. Sorry you got constipation but glad to hear it isn't just me. Wish you all the best.
I also find that I do not handle stress/pressure nearly as well as I used to, not sure how others find this? Me to and I have always done well with stress. Also when I went of femara for 5 weeks my hot flashes and tiredness was not so much. I soooooo felt much better.
I have 11 months and 25 days to go on Femara. I will continue on. Tried 3 tab milk of magnesia morning and night yesterday and guess what. It happened. What a relief.Thanks again bc hugs Jinky
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artsee -- I had the same elevated liver reaction to a prescription medication - Doxycycline for a stupid tick bite. Doubled my liver enzymes and caused anemia too in addition to Diverticulitis event. Drs put me through alot of stress saying it was due to the medication. They are now back in normal range again. One agreed it was the medication reaction. Totally agree it is very difficult to be stress free now.......
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Low back pain has set in now. Hurts to get out of bed. It gotta be the Letrozole. Been on it for 4 weeks now and never had that from Femara.
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artsee, I am so sorry. And I DO understand. I switched to letrozole for six weeks and it kicked my derriere.
I posted a few days ago in the Hormonal Treatment for Stage IV forum about switching back to brand Femara after having big problems with generic. (As in, I had to have an echocardiogram for tachycardia that set in within a week of switching to the generic, among other problems. Bad reaction.) I called the oncology patient navigator at my hospital and asked her to appeal my case to my insurance company for me -- I figured she knew what to do and I was sure I did NOT. She and my oncologist handled it -- and the insurance company granted the appeal.
All that to say, if you keep having new issues with the generic, you might ask your oncologist what kind of advocacy/support is available for helping you submit an appeal to your insurance. You just never know till you try!
~lulubee
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Hi all,
Artsee - I am finishing my 3rd week on and all weekend I have shooting pains down both legs and it hurts to stand on my feet.. The low back is also giving me trouble... I can't afford anything but generic - no insurance for me
- Maybe I will talk to the onc today about upping my Gabapentin??? This really sucks!!!! - sorry I had so much headache trouble with arimidex, I thought after a week with no SE's I would be able to do Letrozole....
Any ideas - I'm already walking - motion is the lotion and all that - ice/heat , vitamin D, Cant take the glucosomine (allergic) - any other ideas
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Ladies.........I have heard a lot of women are having problems with the generic Femara after going on it, and off of the brand...............I called Novartis and told them about this, and they confirmed all things are not equal with the gene4ric, and the Brand, but working for a Pharma company I already knew that..
Anyone who can't afford Femara, or doesn't have pharma coverage, call,the manufacturer, who is Novartis.........ask them about their "access to care" program which is a program that pays for the Brand name drugs of anyone who can't afford the payments...............plead your case, tell them you are getting severe SE's from the generic, and you may be able to get your Femara from they "free of charge"................It is worth a shot............goodluck.
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YES, ladies... what Ducky said! Make those phone calls and rattle some pans. Do whatever you can to take care of yourselves!
If we BC ladies don't stick together and register productive complaints about this sub-par generic that's been foisted on us, how will the powers-that-be ever learn that there is a big problem here?
Please talk to your pharmacists and your doctors if the generic is wrecking your QOL, and ask them if they have professional avenues to give feedback to the manufacturers or even the FDA. It needs to be known to people who can actually effect changes that this drug needs cleaning up, pronto.
When I tried to get my prescription filled for brand Femara last week, I was told that the Costco pharmacy wasn't even stocking it anymore and it had to be special ordered. So I talked to the pharmacist about the growing body of anecdotal evidence out here in BC land that the generic is not a clean enough version of the drug (and I told her they still need to stock at least one bottle of brand Femara every month for me!). It was the first she had heard of it and she was very interested to know about it.
~lulubee
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I've had constipation from chemo and then Femara. After nearly 2-1/2 years on Femara, it hasn't improved so I am taking a fiber supplement daily. I hate the side effects of this drug especially the pain. I used to love playing the piano but it's too painful now. Cancer just keeps on taking.
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I have been on the generic for three months now, and have stiff joints when I wake up or seditary for too long so I walk around to loosen them up. I can tell a difference from femara to generic but I can deal with it for a while longer and see what happens. See MO on friday, I'll see what he says, just bought three months more from Cigna through the mail. Got three months for $20.00 vs. $80.00.
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I paid $261.00 for a 3 months supply of Femara (from Aetna's warehouse).......it is. Originally they told me that the generic would be $60.00 a month, and the Brand Femara would be $90.00 a month..................for the extra money it was worth it to me to stay on Femara..................I didn't want to take the shit to begin with, so since the SE's are some but not horrible, I don't want to change.
I plan on finding out the phone number for Teva who makes the generic, and also for the FDA to tell them about all the complaints women are making about their product................if they are never told, how can we complain.
Just google the manufacturer, and yo will be able to get their number..............working for a Pharma company for 15 years opened my eyes to what patients can do to change things..............................do nothing, and nothing will change...............complaining to each other is a good thing, since it brings out the problem for all of us, and makes it known.............................not telling the authorities means all we have done is talked amongst ourselves...................get on the phone ladies....................there is power in numbers.
Like i said Teva, makes the generic........................FDA should be easy to find................let's get this ball rolling.....
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I have been on Femara for 2 months then this month they put me on the generic, which honestly I feel a lot better, not as tired and less joint /muscle pain...
and today I got the cat scan results and My lymph nodes are shrinking!!! I shared my concerns again with the onc. and she told me that in her experience it is totally ok to take the generic and most have no worse SE and same benefits!
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I do not understand the difference in pricing between insurance companies. I have not paid more than $40.00 for 30 day supply on Femara and $10.00 for the generic. I am with Cigna.
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Depends on what plan you have......................some with higher premimus cost you less when you get services.................others the premimum is lower, but co-pays could be higher in your plan.......................It really takes a lot of thinking...................before cancer the one I am in was great..........................so much care, with cancer, it can get expensive with the co-pays, but when I was healthy it worked great for me.....................plus many Ins. co.'s are raising everything.................I got the 2012 booklet, and it is ridiculous.........oh well.
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Cigna does not write insurance in Pa.......................They only write in certain states..........don't know why, but that is it..............maybe if you pick and choose who you want to insurance in what state it changes the cost................who knows. Actually they only write in about 8 states
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Does anyone else taking Femara/or generic have problems with their thumbs feeling numb?
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The reason Insurance Companyied don't write policicies in certian states is because each state sets up their own rules that insurance companies who write in that state must follow. This is why it is important that we don't allow selling across state lines. The insurance companies would just all go to the states with the least regs. We would all end up without the protection of our states dept of insurance when it comes to fighting with our insurance. Much the same way all the credit card companies moved to North Dakota because they had the most favorable laws.
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Please see post" liver enzymes and thyroid"....I should have put it under femara..... bc hugs thanks jinky
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Here is my question with taking the generic.....anyone having symptoms similar to UTI's? Severe vaginal dryness? I thought I was getting a bladder infec/UTI but it turns out that the drugs have drained me dry dry dry. I didn't have this with the Femara but now with the generic I am having issues. I did get some estrogen cream to relieve the irritation but I have to be so careful as not to use it often. Is anyone else having this? I have heard that the generic drug can be different each month, in that in comes from different manufactures and the chemicals could vary with every prescription. Anyone heard this? I have been on Femara since Oct. of 2009 and experienced bone pain but no dryness.
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Dryness down there, tell me about it!!! I have found it worse since switching to the generic. I didn't realize that each batch of letrozole may vary, no wonder the SEs change constantly, although joint stiffness seems to be the common factor. I was told to stay away from anything containing estrogen . I did try some other "things" but that wasn't too successful, so I take the occasional break when the going gets tough. Two and half years down, two and half to go. For my the sleep disturbance are worse, coupled with the hot flashes and night sweats - YUK!
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Since switching to Letrozole I noticed slight headaches and my hair seems to be coming out more that Femara. Both are a s/e it seems. I'm not liking it. 1 1/2 years to go........
Monty...I was watching Dr. Oz and the Gyne on the show says to use Progesterone cream down SOUTH....she says it helps. Don't know if you can get that over the counter or not. Seems when you take drugs that happens and your Libido goes out the window.
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artsee: I was on letrozole for 3 months and I am having arthritic pain on my feet and hands which I didn't have while on femara. I called my onco and have the pharmacy switch me back to femara. After a week back on femara, the pain was gone.
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I haven't posted in a long while and have been trying to catch up a bit. I am glad to see that I am not the only one suffering worse SE's on the generic. Judyb... I have gotten very stiff and painful thumbs and general weakness in my hand strength since switching. I have to wait for my DH to open the simplest jars and packages. Not to mention that my whole body has gotten pretty stiff and my hair is definitely thinning. My last 90-day presription of letrozole was manufactured by Breckenridge. I am going to try calling MEDCO and see if they will switch me back to Femara since they are the ones that made the switch to generic. If that doesn't work, I will put in a call to my ONC.
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Monty, what would you possibly take that contains estrogren unless it's HRT medication? I am puzzled ...unless it would be an IVF drug?
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