FEMARA
Comments
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That is really good to hear. I started taking Femara this week. With the exception of a dull headache, I feel pretty good.
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Ok ladies, Not sure what my next step is yet but checking other forums out just in case... the MO just had me get off Arimidex a week to see if the constant headache for 8 days went away... it did go away...now he wants me to get back on it to see if the headache comes back...if it does, he wants me to get off it and call him... it only took 3 days for the headache to show up the first time.... I really don't want to play the drug roulette
... so for the ladies that started with Arimidex - if Femara any better??? or will headache come back?0 -
Esther, I started with the Arimidex and had all sorts of problems with it but have had almost nothing with the Femara. The only way to tell is to try.
Love n hugs. Chrissy
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Thanks Chrissy that is nice to know...
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My headaches stopped. I am on Femara for about a week and a half. No other side effects to report. I hope this trend continues.
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Hi again. Well I had my aclasta (zoledronic acid) infusion on Monday & have only just resurfaced from my bed...Thanks for your tips, nanna, I'm sure it would have been worse without them.
I managed to drink lots beforehand, & on the day of the infusion, but woke to nausea & vomiting, a splitting headache, abdo pain and achey hips/femurs. So much for keeping up fluids, I could only have sips of water & couldn't take pain relief. As I was home alone (hubby at work) I couldn't find the energy to organise help & just lasted thru the day.
Luckily I got DH to go to the medical centre the next day & get anti-nausea meds & easy to swallow pain-relief. That really helped, so good not to feel nauseous & to have that headache gone! It was like going thru chemo again. Finally I could drink again & flush that stuff out!
My GP ordered a blood test, she thinks it may have been a virus- but I think not!
So ladies, anyone going onto zometa/reclast/aclasta I recommend having anti-nausea meds & easy to swallow pain meds handy...
lesson learned! 0 -
I was feeling so yuck I haven't taken my femara for 2 days, naughty!
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My joint pain is definately getting worse , as is the swelling around my ankles , my hair is visably thinner , however , my inner self , feels better on Femara , so going back to playing generic roulette is not an option.
I do worry that starting on Arimidex which seems to be what I will have to do as cost wise the "original " Arimidex is considerably less than the "original " Femara , I just hope that it's not opening another Pandora's Box , because Ladies , I can tell you , I am heartily sick of it .
For those who take any of the AI's with little or no side effects , I really do envy you , I , on the other hand , like many others seem to be looking at another 5 years .....3 left !! ... of misery .
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Having my zometa infusion in about 2 weeks.Shew i will be glad get this over with
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Hi, I have changed my user name from KT66 to kt1966 as I thought KT66 sounded like I was a shouty 66 yr old, but I'm not! I'm 45!
nanna, have you found the zometa gets easier (ie fewer or less severe SE's) each time. I'm sure hoping that's the case after my aclasta infusion. In the midst of it I vowed not to have it again, but I hear it gets easier after each one.
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Hello ladies,
My name is Jane and I have been on Femara for about 10 months not escaping all side effects but not having severe physical problems. Lately my issues are emotional and I suspect depression. Has anyone else experienced this? I am 71 with a husband who has early stage Alzheimers which also are factors.We are used to having active lives -- golfing,fishing,RVing which we have given up. I am trying to develop a positive attitude for our remaining years but sometimes it is difficult. Please tell me that it gets better.
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Jane, how nice that you aren't having too many problems physically. When I switched the pill to night-time, I noticed an immense lessening of problems-mainly fatigue. Now that Femara is generic, I'm noticing an increase in some SE, but it's still do-able.
I'm 57 & don't have a husband who is worth calling that name & he hasn't been in my life for almost a full 8 yrs-Thank the Lord. My father has Alzeheimers however & has been dealing with it for over 10 years. He was started on Aerocept (sp?) pretty much out of the gate & that has helped with the mental/memory troubles up until about 2 years ago. His physical problems are what slowed him down-he was a fanatical golfer until spinal arthritis stopped him in his tracks. I hope you are able to find peace in your situation and that life will still offer lots of good memories for you.
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Dear Jane - I have been on Femara for 11 months and have had the usual side effects of weight gain, joint pain and stiffness, and increase in my migraines and terrible hot flashes, along with more than usual emotions like being a rollercoaster and quite a bit of depression. As an RN I know this is all to Femara and partially to having had a DMX with reconstruction in March and thinking I was all finished and to now requiring one or two more surgeries......and no sex life since I was diagnosed. Even though I'm 58 and my husband is 77, until BC came into my life sex was an active part of our life. I think more than anything t he Femara taking all my female hormones out is the villain.
I've now lost weight, exercise daily and try to not hide in bed with the covers over my head too often.
As to you, your husband having Alzheimer's is enough to make even the strongest woman be depressed, and as the doctors told you, it doesn't get better. I think maybe your worst fear is he will wander from your home and not be able to find his way back or that even in your home he will hurt himself. You need to get help in monitoring him so you can get out and walk or even go into a room, shut the door and read a book or meet with friends. If you don't have family who can spell you on a frequent basis, then ask friends. If not an option, look for a home health carer for him. I'm only talking about 2 or 3 hours a couple of times a week. Here in Australia, we have centers where people with Alzheimer's can go for a few hours or the day and be with others like themselves in a sheltered safe environment.
Please look into getting respite as you need to take care of yourself so you can take care of your husband. I'm sure the Femara sure isn't helping with your depression but we all need it to starve any breast cancer cells that might be lurking in our bodies.
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To all of us who are experiencing the dreadful side effects of Femara and other aromatase inhibitors: Be aware of the risks and make sure the benefits from the drug are worth it.
I was diagnosed with ER+ b.c. in 2004. Had a lumpectomy, chemo, radiation, and then took tamoxifen for five years. The side effects were unpleasant (joint pain, hot flashes, weight gain, etc.), but mostly they were tolerable. When I completed my five years on tamoxifen, my oncologist announced that she wanted to put me on Femara for five years. !!! Okay, okay. None of us wants a recurrence of our cancer, so we do what the docs recommend.
I took Femara for one year (just stopped three months ago). During that time, I became a cripple. The joint pain was (and remains) unbearable. I can't stand up after sitting for any length of time. My knees are so painful, and the cartilage in one of them is completely gone. I walk with enormous pain, and stairs are a nightmare. Both of my shoulders are killing me, as are my elbows. Then, I developed trigger fingers. First just two of them. Now I have four of them, despite having stopped the drug months ago. The pain and stiffness in my hands and fingers keeps me from being able to pick things up, type, write, cook--essentially I can't do anything that requires the use of my hands. I live on Percocet, which helps minimally, but it's the only thing that gives me any relief at all. My hair started thinning immediately upon starting Femara. I have vaginal atrophy. My cholesterol, which has always been below 170, went up 50+ points in the one year I was on the drug. I'm 59 and feel like I'm 95. I can honestly say this drug has ruined my life.
I thought about stopping Femara, but I was afraid, like everyone, that I was risking a recurrence of the breast cancer. Then I started doing some research on my own. Most of us are aware that studies supposedly show that the drug reduces your risk of a recurrence by 60%. That sounds huge, doesn't it? But there's a tiny asterisk after that 60%, and when you look at what it says in the explanation, it says that the actual reduction in risk of a recurrence is 2.9%. Yes, you read that right. Less than 3%. How is that explained? Let's let Dr. Susan Love, renowned breast-cancer researcher, explain it:
"Now let's take a look at the numbers. The study found that, overall, 2% (31) of the 1579 woman taking letrozole had a recurrence compared with 4.9% (39) of the 804 women who chose not to take the drug. This is the 60% reduction noted in the media stories. (A reduction of 4.9% to 2% is a reduction of 60%.)"
In other words, if you take nothing, your risk of a recurrence is fairly low--just 4.9%. If you take an aromatase inhibitor, your risk goes down to 2%. And many of us on AIs have already taken tamoxifen for some number of years, which has reduced our risk of recurrence below 4.9% to begin with, so the actual additional reduction in risk after tamoxifen is less than 1%. So how much added benefit is the aromatase inhibitor giving us, whether we've taken tamoxifen first or not? It's negligible.
We are getting very little benefit for the crippling side effects these drugs are causing us. For some, it may be worth it, but for me, a reduction in risk of a recurrence of 1% or 2% is definitely not worth the pain and seriously diminished quality of life I now live with as a result of taking this drug.
P.S. To read Dr. Love's entire article (Femara: A Closer Look at the New JCO Study), go to: http://www.dslrf.org/breastcancer/content.asp?CATID=0&L2=3&L3=5&L4=0&PID=&sid=130&cid=1393. Since I can't seem to make this into a link, just search on Susan Love and the name of the article in parentheses above and you should find it.
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Thank you Eph3,justagir land Krw for your responses, each of which has given me new insight. I was guilty of having a pity party which may not be completely over but, at least, I can remind myself of all the blessings I have and more positive way of facing the future.
Eph3: Having my husband of 49 years,even with his diminishing memory, is a positive when compared to your worthless one. Congratulations in your independence !
justagirl: Hope your rollercoaster slows down, best wishes for you in your upcoming procedures and thanks for the reinforcement of my feeling that Femara is part of this depression. I know that I will have support with my DH when the time comes.
Krw: You did your time with Tamoxifen and made a courageous decision about Femara which has caused you so many problems. Hopefully the SE will diminish with more time.
I am not blessed with "the gift of gab" but I will try to develop a friendship with you who totally get it. Thanks again !!!
Jane
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Hi, I started Femara 2 days ago. I was on Tamox for 3 years.I don't understand why my Dr had to switch me to Femara. I am afraid to ask. Since I took this new med I am having flu like symptoms. Have anyone experienced this?. Will this go away?. This whole thing is scary. It is not that I was fine with Tamox. I am dry like a cardboard anyway and have joint pains too. Joint pain have become unbearable with Femara and also noticed that my vision is a little blurry. Thanks.
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Hi MBoss, the flue like symptoms after taking the Femara is a comon SE. A good way to help ease these is to take an anti-histermine such as Claritine or Zyrtec when taking the Femara. The blurry vision like wise but if it goes on for too long please mention it to your doc. I also had the blurry vision to the point I went to the optomitrist to get my eyes checked but they were fine and the blurry vision disappeared a couple of weeks later. There are suppliments that can help ease the joint pain if you don't already take them. I can let you know what works for me if you like, just let me know.
Good luck and give it a little time a lot of the stuff that comes with a change of med can disappear after a few weeks.
Love n hugs. Chrissy
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xgolfer - A pity party sounds pretty good to me - I'll come and pity with you! You have so much going on in your life with BC, femara and your husband's illness along with having to change your lifestyle to accomadte your husband. Just know you are entitled to all you feel!
krw: you have made me think and I'm going to do more research!
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xgolfer, I recommend you see a therapist or counsellor about your depression. It may be due to your overall situation, which is natural after BC, not just the Femara. I have been seeing a therapist since diagnosis and it has helped me tremendously. I also take anti anxiety medication and feel normal most of the time. It is highly likely that these things could help you too.
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I have taken Femara for 2-1/2 yrs. and have the joint, hands and foot pain s.e. Today, I asked my physical therapist, Mary, for help with the foot pain/immobility I have each morning when I step out of bed. She told me to do this before I get up: extend each foot fully to stretch. Flair my toes out and separate them as much as I can, holding position for a few seconds. Then, I curl my toes in tight to my feet and hold a few seconds. After doing each foot and with leg relaxed, I am to write the alphabet in air with my toes and using my ankle. It felt so good in the session. Just wanted to pass this along and hope it is useful.
Thanks for posting Susan Love's explanation re recurrence rates for Femara. I will look into this since the Femara cost me significant bone loss in the past year. It's why I am in physical therapy now.0 -
Thanks chrissyb for letting me know that the blurry vision goes away. I called my Dr and told him I stopped taking Femara after I experienced all those SE. He said that flu like symptoms could not have been because of the drug. I don't believe that. Right next day when I stopped taking the drug I was back to normal. He wanted me to take the drug in the night and see, so I will be taking it today. If I get the same SE I am going to ask him to switch me back to Tamox. All these switches are so confusing and makes me nervous, wonder how beneficial this drug is. I wish there is a correct answer, it all sounds so ambiguous
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Hi Femara ladies,
We have here extremely high temperatures now, so we spent a lot of time at swimming pools.
After swimming a much I was really tired, but next morning and all over the day no bone/joint pains. Couldn't believe, but it's true! Unfortunately so as I as you too, we cannot spent our days swimming!
Best wishes!
Usha
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Usha, that's good that you have discovered the secret. It is said by many that exercise is the best solution to the joint and muscle pain but you have to be able to break through the barrier for it to be effective.
Mboss, you will find with persaverance that some if not all SE diminish enough so you can cope with them. Please don't give up too soon.
Love n hugs. Chrissy
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I am still on 1/2 a femara tablet a day. Going on 19 months on femara. Mainly pain in just my feet. It is tolerable. I've been able to get my Vit D up from 32 to 60 by taking 5000iu's a day. Thrilled to find that out! Tumor markers were the lowest they've been since diagnosis. They were 13. Yippppee! I know it's not a guarantee everything is good, but I'll take what I can get. More than anything, I'm just tired all the time.
Just checking in,
Joni
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KRW : Have just read your post .Found it extremly interesting , and intend to read the rest of the report you quoted.
I don´t blame you at all for gioving up on the drug .At the end of the day as others have already stated , quality of life has also to be put into the equation . I am sat here having a hot flash , with the sweat dripping off my hands and face onto the keyboard , thinking to myself , "another three years of this ?! " Perhaps not , not for 2% .
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slousa, I too have a pool and have had similar results. Too bad I live in Chicago and my days in the pool are ending soon.
MBoss, when I was doing the A/C for chemo, my side effects were not uncommon on the boards but my Onc would say they were rare. I think the ladies on the board are more active when they have S/E. I would copy what was said here and bring it to him and say THERE. People ARE having these issues.....
I have been on Femera for almost three months. I am just going to deal with the joint pain, although it does seem to have lessened and I am thankful that although I do have some flushes, I wouldnt call them Hot flashes.
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Shout out Joni1-glad it's going good! Loved the wedding photos on FB even tho I didn't know who people were 0
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Thanks Joni, it was a great wedding. Malibu is simply beautiful. Hope all is well with you!
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Hey there all you lovely people. Been a while since I've been on here. Little update.
I finally got the generic form of Femara. Still cost $265.00, although that's better than $565.00
I've been on Femara since May of 2008. Just this past 6 month I feel the pain of it in my joints. Especially in the fingers and hands which are swelling. I walk everyday 3 miles and now I feel aching in the ankles. So for me it's the longer I'm, on the worse it gets. My Onco wants me to try Arimedex. He said it's also cheaper. What I've heard about that drug, I panic. I think I'll stay with what I've got and suffer through. Didn't realize it causes depression. I'm ok but there were times I just wasn't myself. Also 5 years is it for me because my Onco said there have been no studies after that to show them it does any good after 5 years. Right now I'm waiting impaitianly for my 5 years to be up, although I'll freak when it gets here.
Take care and I'll be waiting for any input. Artsee0 -
Re Femara vs generic: Last May, when my Rx was filled, I was given the generic letrozole made by TEVA. Within a week, the aches and pains that had disappeared after 2 1/2 years on Femara all returned. I finally checked with my pharmacist yesterday to see if my supplemental insurance would cover the name brand and the answer was "Yes". So I'll be going back to Femara on the weekend.Here in Canada, 100 tabs of Femara cost approx. $700 while the generic is just over $200. Glad I won't have to pay $500 for the original!Artsee, I sure hope you have the opposite experience with the generic.0
