FEMARA
Comments
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Yup I agree with Granma as well. They are trying the longer time with an AI as well as doing a combination Tamoxifen/AI to see what is going to give the optimum benefit to us but the final word on that is still in the wind and lord knows which way that is blowing.
Love n hugs. Chrissy
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That's correct as far as I know...5 years is still the standard. However, my onc told me that it is not unlikely that they would start recommending longer (possibly lifelong) treatment in the future. AIs haven't been around long enough for them to really know yet if 5 years is enough.
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I have been on letrozole for one year now. Thankfully have not had any SEs, but for the past few weeks hot flashes have gotten a lot worse and now I am finding myself very irritable with a short fuse and wanting to bite someones head off. Is that a SE? I hope it doesn't last.
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HLB, Yes, unfortunately, hot flashes and mood swings are SEs of Letrozole.
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has anyone experienced edema with letrozole? I've never been troubled with it before, but now my feet and ankles swell basically daily. That's been going on now for about 2-3 weeks. It happened on tamoxifen - but that turned out to be blood clots. I've no pain, so am quite positive that I've not got a blood clot going again - just swelling.
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Good morning. My name is Susan. I live in NM-land of aliens but am from Iowa and southern California and Texas. I am most active on the July 2012 chemo thread. I was diagnosed in June '12, had AC, Taxol until toxic, R mastectomy in December. Then had 1 dose of Taxotere and was really sick. 30 of radiation. 17 of the 52 doses of Herceptin. My ejection fraction has gone from 66% to 50% so I have been taken off of Herceptin although I think the decrease has been caused by adriamycin as it did not start until I was finished with all of the nasty chemo's. Now Femara. Left mastectomy next week. Reconstruction in maybe a year-hopefully.
I am a nurse--but psychiatric, women's and pediatric. Never adult medicine. Am now administrative in a university. My knowledge of oncology was related to children only--and after my first dose of of AC-which I gave to children years ago-realized everything I told children and their parents was BS.
I am glad to find this thread as I have questions about Femara and my MO is not being receptive to questions right now. I started Effexor XR in January to help with the hot flashes and did not have any until a couple weeks ago. What I experience is not really a hot flash as it only is my head and neck and only at night. Is this common? I have gained weight-with no changes in eating habits, have severe joint pain. I have had severe head and back pain for a long period of time but the joint pain started after this drug. Strange nausea-as example-cut open a watermelon and the intense sweet smell caused nausea and vomiting. Edema of lower legs at night-but this is probably due to my lowered EF.
Would appreciate your help.
Thanks so much
Susan
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I have experienced weight gain - not drastic, but any is too much, as I was/am overweight to begin with. I have joint/muscle pain - HOWEVER - if I stay completely away from wheat (to which I have an allergy) and take my supplements, the pain is MUCH less. Without those adjustments, I almost cannot move and cry from the pain.
I take:
1000mg curcumin phytosome
1500 mg glucosomine sulfate
600 mg chondroitin
200 mg ginger
100 mg cinnamon
3000 mcg biotin (I've adjust this one a bunch of ways - this is my current dosage)
500 mg boswellia
200 mg CoQ10
200 mg quercitin
(the above is from memory, and I could be wrong on a couple of measurements)
I have edema in my lower legs, which began about two weeks ago now (I've been on letrozole for 1 3/4 years). I try to put my legs up in the evening, which helps somewhat.
I have lost about 30% of my hair.
I have hot flashes, but cannot provide specifics, as hot flashes have never really bothered me. I always prefer to be warm than cold, and so don't really care if I have a hot flash.
Sorry you had to join this not very exclusive club, but welcome to the thread.
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Hi Susan and welsome to the thread. What you have describes sounds pretty much on par for SEs from the Femara. The hot flush you described could have been mine....lol....i do get the occassional full body one but mainly head and neck.......I make sure i carry a small old fashioned folding fan with me everywhere as it seems to be the most effective relief and I sleep with a small electric fan at the side of the bed blowing directly on my face.
As GardenGumby wrote above, there are a whole heap of suppliments that can help with most of the symptoms.
Love n hugs. Chrissy
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I have been taking effexor as well for 8 years now and it does help A LOT but did not eliminate the hot flashes. They finally seemed to be subsiding after about 6 years but I stayed on it. Now the letrozole is making them bad again and they seem different than before. I don't know how to really describe the difference but my face gets so sweaty, I hate it. Sweat just drips off of me. Ugh. Well I wasn't irritable today so hopefully that won't happen a lot. Its like opposite of my normal personality.
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HLB, I tried Effexor for mine but it turns out that I am allergic to one of the ingredients so was very quickly taken off it. Yes the sweat used to just run out of my hair and off my face but that over time has settled to the point that I no long gush, just glow.......lol. Hope yours settles soon.
Love n hugs. Chrissy
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WElcome Susan
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There was something else that I was going to add, but cannot recall what it was.....
Oh yeah..
and I used to really rely on my memory, but now it sucks... 
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Thanks ladies for your help. And gardenbumby--it ALL sucks! Big time! Just did my pre-op interview for surgery next week AND my annual survey for the Nurses Health Study---with a lot of new information. I stand in admiration of the women who have lived with this nasty disease for so many years. The past year seems like forever ago. My "lump" grew from a fingertip (have always been lumpy bumpy-so was not worried) to 3x3 cm in about a week. Was 6x6 @ day 15 when had the mammogram. On that same day I signed a contract to be interim dean of health @ the university where I had taught nursing for 9 years, then appointed to nursing program director for 2 years. Later that evening I found my *%&$#^ of a husband (ex now) had an active match.com website and was dating! Had a date that night! He had a gastric bypass a few months prior and had gone from morbidly obese to almost normal which went with the penile implant he had 2 years prior. He walked out and moved in with someone else the day I had my port placed last July. At least that cancer was out of my life. Have not seen him since. I have worked almost every day. Tried to stay positive (with help of Effexor and lorazapam). And relied on the July chemo thread and my therapist for therapy. Am grateful to have found this group.
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Geezzzzz - what a horror. Cancer is bad enough without everything else you've gone through.
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Susan-sounds like that was one good thing during your cancer horror...you are rid of that dude!
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Susan there are no words to describe what your ex did.....good riddance to bad rubbish I say and you are far better off with out him.
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Susan, you sound like one hell of a strong lady....Kick some cancer ass to the curb, girlfriend.
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WOW! I went to get my bras and breast form. The girl said that next year they will not be taking my ins. Guess I will use reg bra and put socks in the missing breast to fill it out.
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Nordstroms is the one store that I've find that consistently takes insurance. All the rest of 'em seem to be kinda flakey in that regard.
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Thank you ladies for your support. He is an *%&^&^.
Breast forms. The one I have now weighs 2.5 pounds. It could break a toe if dropped. The plastic surgeon I consulted recently told me about breast forms with little suction cups on the back that can be used with regular (AKA pretty bra's--not the one's I got after surgery with super wide straps and clasp). I am going to try those after recovery from surgery next week. Will be using my knitted knockers until I can use the others after surgery.
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Hi! I am new to this discussion and hope that this wise group can help me....
I am currently in the process of changing from Tamoxifen to Femara. I've been pretty comfortable on Tamoxifen for the past 5 months but now that my Onc feels sure that I am post menopausal I am to change to Femara. I am travelling from Australia to Europe in a week's time and I will be in Europe for a month. Due to DVT risk and getting the Tamoxifen out of my system before starting Femara she has suggested I stop the Tamoxifen now, have a 5 week break and then start the Femara as soon as I return. Normal DVT risk, no side effects while I'm away - sounds great but I'm nervous, the hormones, despite the side effects, are my safety blanket....
Has anyone had this type of experience? Am I just being silly?
P.S. Susan, you are soo much better off now......
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Hi Tammy. I started tamoxifen Feb, 2011, was on it for 4 mos, then off it for two months for DIEP and also because I felt so horrible when I was on it that I stayed off a little longer than required. Then I went back on it for about 2 months, but got blood clots, so was back off it. Then my MO wanted me to stay off everything for 4 months, but that made me too nervous, so after almost 2 months I started letrozole. I've been on it for a little over 1.5 years. So, in answer to your question, I don't think a 5 week break is a problem.
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Tammy, have you talked to your onc about staying on it for another month or two? She might understand your fears and let you continue for a bit longer. I changed from Tamoxefin to Letrazole about three months ago. No problems at all. I didn't have any issues on T though.
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Thanks for the advice, glad that you both seem to be doing well on letrozole!
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Hi everyone
I've been lurking on this thread since I started femara 13 months ago. Initially I started with arimidex and endured so many se I gave up. The onc switched me to femara and though I have se they are tolerable. My largest complaints are am stiffness insomnia and severe night sweats. I take the med in the am to help with insomnia but night sweats are overwhelming. A friend who is a massage therapist recommended dragon time rubbed in a small area of your belly at night will cure the night sweats and insomnia. Has anyone ever heard of this essential oil? If yes have you tried it and does it work?
Thank you for your help.
Maureen0 -
Maureen, I take it at night to help my insomnia. I sleep soooo much better taking it at night. When I took it in the mornings, I was so fatigued I literally was falling asleep at work.
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Do you use that dragon time essential oil?
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No, I was referring to my dose of Femara, sorry. When I started it Nov '09 I took it in the mornings for about 6 weeks; literally as I said, falling asleep at my desk. Switched the Femara to just before bed. Helped my sleeping, helped my morning stiffness & stopped my daytime fatigue. I've never heard of the dragon time essential oil stuff.
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I have only been on Femara since March. But have tried mornings and nights-insomnia either way. Even with melatonin and benadryl.
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Hi ladies haven't been here in a while. Wasn't having any trouble with Femara until tonight.
So here's my stupid question. Can Femara cause your toe nails to become brittle and fall off? My big toe looks like its trying to come off, straight down the center of the nail is completely hollow. Is that normal? I've tried googling it but can't seem to find if its an SE of Femara. Just what I need nail less toe to go with the nipples less boobs I have. 😳😉0
