FEMARA
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Hi Everyone,
Just thought I'd share with you thay my chemo/herceptin nurse told me not to take Melatonin for sleeping, they do not recommend it's use at all because of liver damage amongst other things. She said she'd rather me take a regular low dose sleeping pill Zoplcopine (or something like that).
The last few days I have ached like made and cannot get warm but that happens every 3 weeks when I go for my herceptin, it wears off after few days.
This weekend a group of us ladies have come shopping to BIrch Run in Michigan, an annual event. So looking forward to treating myself to a few nice goodies. I took a sleeping pill last night to make sure I have lots of energy to shop till I drop!!!!! Hurry up and open those stores, there's nothing like a little retail therapy to pick up ones spirits, yippeeeeee.
Have a great weekend everyone
Gaynor
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Gaynor...I will see what the LE are doing when I go back in June. I absolutely love the mall in Birch Run. Have done lots of shopping there when visiting Frankenmuth.That's one of the best Outlet malls I've seen.
Artsee
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Artsee,
Birch Run was fabulous! Always is, never disappointed. Think I over did things a little as I ache like mad, still cannot get warm and feel so tired - not that it makes me sleep any better, hope I'm not coming down with something. Have you tried Grove City in Pennsylvania, that's amazing too. Next year I think we are going to try the one in New York State, somewhere near Rochester I believe?
My husband and I are looking to go away on a vacation, I'm so excited!!! A little nervous about the bathing suit thing though but I'm sure I'll get over that when I see a gorgeous white sandy beach etc. Someone told me to get one of those scrunchy shower scrub things and put that in my top as they don't flatten out and stuff, we'll see, obviously no topless sunbathing for me this year? Oh well, probably too old for all that now anyway.
Got my heart scan next Monday, hopefully the results will be good.
Must get on with some work. Hopefully the typing will get my fingers moving.
Love G
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MMM5: I hope you don't mind me asking a question. I'm an old BC.org member having been diagnosed with DCIS 5 years ago. I'm recently back on this site after my 82 mom was diagnosed with ILC in January. I see that you are in the bisphos trial. I'm assuming that is the biophosphonates trial? My mom was recommended for Phase III of the Biophosphonates trial as well as Femara (she thinks it was Femara, she said it was something that started with an "F"). She sent me the literature she received from her medical oncologist about the bisphos trial. I'm a little concerned about her becoming part of this trial due to her age. I've contacted the nurse coordinator for her doctor and waiting for her to get back to me. I would really appreciate your thoughts on this trial and whether you had any side effects. The ones listed in the literature from mom really concern me. Your thoughts (as well as anyone else's) are appreciated. Thanks. - Janet
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HAVE BEEN ON FEMARA FOR 5 MONTHS AND THE S.E. ARE JUST FEW ACHES IN MY BACK AND ARMS REALLY HOPE THAT IS ALL I GET. MY HOT FLASHES HAS NOT BEEN BAD LATELY.
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Hi every one,, did anyone get bad side effects like major panic attacks on Femara...it started after 6 mos??
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NY Janet
I have not had many SE"S from the Bisphos trial, and feel very good about it however many SE's from Femara. (sleeplessness, wt gain, etc)
I think the trial is great as it is showing protection against reocurrance and helping the bones. We will know more after my dexa scan but am feeling good!
Please PM me with any specific questions
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Gaynor..why are you having a heart scan? Artsee
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Hey Jeril12...I have had major panic attacks and went to the er at the hospital three times feeling like I could not breath and I was going to pass out and I wake at night having them. I switched to aromasin last night so I will see if it is any better...jude14
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Just cruising through and noticed a few of you are Birch Run, MI junkies! I used to live about 20 minutes from there, but now it's about an hour or so. And my Sister lives in Frankenmuth. I don't come on the boards often, but let me know when you trek to MI again.
Femara...............I have been OFF of it for almost a week. And I am so glad.........even though I feel like my 'safety net' has been taken away. I haven't noticed a difference in the way I feel yet, and the 20 pounds haven't magically disappeared either..........but I'm still hoping!
Denise
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Hi Everyone
Artsee - I have a heart scan every 3 months because of the chemo I had and also because I am still getting Herceptin which is known to cause problems with heart function. Initially the epirubicin chemo caused a fall in my heart function but since then it got a little better, hopefully this trend will continue.
Denise, I live in Ontario and don't get to go to Birch Run too often but I love it when we do go. The stores are amazing and so many bargians. Pity I didn't know for sure that my husband and I would be going to Cuba on vacation later this month when I was at BIrch Run last weekend, I would have bought so much more.
We've just booked to go to Cayo Santa Maria in a couple of weeks time. I'm so excited. We come back on the day of my cancerversary, then the next day we go see Elton John & Billy Joel in concert in Toronto. Can't wait, we really need a vacation & it'll be our first vacation alone since our son was born 19 years ago. A little unsure about wearing a bathing suit with my one boob missing but someone told me to put one of those shower scrunchies in my bikini top and that should do the trick. I've just bought some so I'll let you all know if it works! I don't want everyone asking questions if I can help it.
Denise, what made you decide to come off the Femara? I keep thinking about it but my husband and best friend say NO! I have been suffering some major stomach problems since I had my ovaries removed and started Femara - really sharp nasty pains regardless of whether I have eaten or not and mainly when I'm sat up as though something's being squashed. I'm a little worried that it might be something more sinister although I haven't told anyone else. I see my onc next week before we go away so I'll ask her. I'll also remind her about my mammogram as it's just over a year now.
The aches and pains etc are continuing to accumulate but they are not too bad so far. Worse when I have been sat for a while and more at night than during the day.
Ok girls, got to go and continue enjoying Mother's Day. HAPPY MOTHER'S DAY TO YOU ALL
Love Gaynor
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Gaynor,
Please, Please,
Do not go off of Femara, It is like playing a bad game of Russian Roulette. Yes Femara will give you some joint & muscle aches (maybe) Yes Femara will make your hair thin (maybe) Yes Femara will kick cancer's a**. "It's a no brainer" Gaynor Your stage is very serious to be thinking about stopping Femara your Hubby & Bestfriend are right on the mark with this!
Hugs
Renee
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Anyone experiencing mid back aching from Femara?
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Hi Everyone
It's Monday and back to work.
Renee, I know what you are saying and there's very little chance I would stop taking the Femara, at this stage anyways. I see my husband suffer with arthritis though and know how bad it can get, if it gets to a point like him where it severley limits my ability to do the things I enjoy then and only then will I stop taking this med. I just hate taking it and all those other meds.
Artsee, what kind of mid back pain are you suffering from? My chemo nurse said about the Melatonin causing liver problems and you said you have raised LEs - could it be anything to do with that?
Heart scan this am, yipee! At least I get to lay down and take a rest for a couple of hours. Hope the hot flashes stay at bay during that, I cannot lie down without them rearing their ugly head and you have to keep so still during the scan, should be fun?!
Well the sun is shining bright here this morning although it's really quite cold, hurry up summer. I need to cut my grass but everywhere is still too wet in the garden. I love gardening, it's therapy for me and helps me remember that I'm fine and can do everything I want to do, hell I laid a gravel side yard with stepping stones one day after chemo - everyone thought I was super human.
Got to go as I have work to do before I leave for the hospital.
Love to all
Gaynor
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Hi ladies. I'm not a regular over here, but I see Neesie has posted.
I'll answer a question directed to her- she went off the Femara because she hit her 5 years!! YAY!!!
Today is my 2 year anniversary on Femara. The first year I had NO side effects. I was so excited about that. But right after year one It all started. Started with my feet. Then my fingers, then my knees. Between my feet and knees, I feel like a ninety year old. I HATE it! But, I will do my darndest to run the whole five years.
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WHYARE AL'S SO MUCH MORE EXPENSIVE THAN TAMOX
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Hi Ladies,
Happy Friday, and for those in Canada - Happy Victoria Day Long Weekend!
Question for those of us on Femara and Herceptin ... since my last few herceptins I have been feeling really cold (other than when going through the hot flashes), is anyone else experiencing the same thing?
I had my muga scan on Monday and I am now awaiting the results next Wednesday from the onc. I have a feeling from how the technician asked questions after the scan was done that the results showed a dip in heart function, I guess I'll find out next week for sure! It's crazy how you get to be able to read their minds without them telling you anything, eh!
Rockysmum, I too dislike Femara! I don't feel like I'm the same person but I have to keep taking it. Just lately I am so forgetful, so much so that we all make a joke of it at work. I have extremely understanding and supportive bosses so that's a help. I'm fine if I'm concentrating on a job but if I turn around for an instant I forget what I was doing or where I put something. We joked the other day that I'd better make myself a name tag with my address on it in case I forget where I am or who I am, hahaha. Don't like feeling like this as my brain was always so alert but what can you do?
My husband and bosses keep suggesting I go for colonic irrigation to clear out all the nasty toxins in my body that the chemo and other drugs may have left behind, anyone esle here tried that? Not too keen on the physical idea of it but I'm beginning to seriously consider it if the benefits are worth it.
Well another day, another dollar - I've loads to get done as we have Monday off work, Tuesday Herceptin, Wednesday onc, Thursday at work and Friday my husband, Tony, & I leave for our vacation - I'm so excited!!!!!
Love to all, take care
Gaynor
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Femara divas: How are your lips? Mine are chapped and it seems in the morning, the inside of my top lip is a little swollen. Boy, can I tell when I eat spicy food!!!! Linda
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Gaynor,
I am on Femara and also did Herceptin for a year- my last Herceptin was the end of April. I have been cold for the last year and previously I was VERY hot natured- I dont really know if it was the chemo, femara, rads or what that has caused the cold sensitivity but it is VERY noticeable and the achies are a lot worse when i get cold. I bought UnderArmor and wore it during cold months and that really helped- it has helped that it is getting warmer in Texas right now but even last night I got cold sleeping. I used to sleep out of the covers and be just fine with a little cool- nolw I need to sleep warm- does that make sense?
My doc thinks the hot flashes will be worse in the summer- I havent had too much trouble with them so far- had a hysterecotmy in January while I was still in chemo menopause- but who knows- I havent noticed a difference yet.
Kristy
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Hi Kristy,
Nice to hear from soemone having gone through the same treatment. I had my 1st 3 month check up with the onc on Wednesday and I asked her about feeling cold all thie time - she said it's a combination of everything - chemo, herceptin, femara and menopause coming along so suddenly. As in Texas the weather here in Ontario has finally started to warm up so hopefully I won't notice it as much. But you are right the aches are worse when its cold. So far, touch wood, the hot flashes while I am awake are not too bad, but the night sweats are horrific and the insomnia - I have to take a sleeping pill every night otherwie I simply don't sleep. My onc thinks this is probably compounding the forgetfullness too. Are you having any problems with short term memory? At least I'm not weepy or bad tempered - yet! My onc says she finds things tend to settle by 6 months but checkign this website I'm not convinced of that, I guess I'll wait & see.
My heart scan results came back OK which was a relief! I also checked with the onc about my stomach pains and she believes it's scar tissue resulting form having my ovaries taken out - hopefully that will settle down otherwise she says I might have to have surgery to take care of it.
I'm all excited today as we go on vacation tomorrow, I'm like a kid on Christmas Eve!!!! You'd think I'd never had a vacation before.
Well lots to do here at work before I leave tonight so I'll speak to you all when I get back.
Love Gaynor
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I just started on Femara. I took it with my first bc, after mastectomy, chemo, and five years tamoxifen. After a year, I stopped the Femara and I cannot remember why. Then I read these posts and saw the mention of hair loss or thinning. I think that is why I stopped. I didn't want to lose my hair again! Does Femara cause hair loss? How bad is it?
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mmilv, I do not think you are silly at all for not wanting to go out running with peach fuzz. I wore those nice caps you can get until my hair was an inch long!
Maybe get one of those caps or wrap a bandana around your head? I could never get the knack of tying scarves and bandanas myself. Hence the ready made chemo caps were my staple!
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Ok, I don't want to do it. I took Arimidex and felt HORRIBLE after just one month. Now my doc gave me Femara to try. I already have terrible joint and knee pain before even starting the Femara, along with horrific hot flashes. It only decreases your chance of a recurrence by 5-8% I have been told. The selenium I take every day drops your chances or a recurrence from 80% in the other breast to 10%.
Cathie
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Hi Everyone! I didn't have chemo. Having 33 Rads with 5 boosters. My med onc put me on Femera before I started my rad treatments. I have been taking them for about two weeks. No SE's yet. Check on this website that list chemo drugs. The link is to Femara which list SE's, etc.
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Arbojenn - thanks for the understanding! My hair is now about 3/4 inch long..... I am not noticing a difference in the thickness of the hair that is coming in from what I had before.
4thefather - I can't remember (and am not where I can find the info I was given) what the percentage decrease of cancer reoccurrence with Femara, but it was significant for my situation. So I plan on taking it for 5 years (only 1768 more days to go!)
I've been on Femara for about 2 months and though my ankles are achy I am doing OK. I am looking forward to visiting back home to Michigan this summer so I can run on the sand roads and hiking trails; that should be good for fitness and to strengthen the ankles and hopefully get my feet back to feeling normal. (Chemo effects are still lingering)
But, all in all, I am feeling better - recovering from chemo and radiation!
Mary L.
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HI Girls,
Back from a fabulous vacation in Cuba!
I didn't realize how thin my hair is at the front till I took a look at our photos - oh well at least I have hair now, right? I guess it's the Femara that's slowing the growth - the SEs say it can cause hair loss so I'm pinning the problem on the Femara.
Had lots of aches while away but maybe it was the amount of swimming & stuff we did. Didn't realize how unfit I had become! Hopefully it will go off soon. I did notice that I had problems with my right arm and hand but I think it may be slight lymphodema - it's almost a year since my surgery and they said it could happen, not sure if it was brought on more by the flight or the exercise.
I had my first cancerversary on Friday, one year since I recieved my diagnosis - can't believe how fast that went by, I guess they keep us so busy with treatments. I have my first mammogram on Wednesay this week, not sure how I feel about that, already I am imagining phantoms lumps but I think that's probably normal, at least for us girls.
Well got to go, lots to catch up with and back to work tomorrow.
Love Gaynor
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Hi Femara Girls,
I'm not sure whether to feel grateful or not (just kidding!) but I have been approved for a double blind clinical trial with Femara as the control drug and Avastin as the randomized drug. I had ovary mets (ooophorectomy got rid of that) and bone mets (in the sacrum and thoracic areas). I had tried all three AIs following 3 years of tamox, but I didn't like the joint pain, which was severe, so I begged to go back to tamox. and did for 1 year. And now here I am, living the big Irony, wondering if the AIs would have kept away the mets. What I like about the trial going forward is that I will get scanned every 9 weeks, which will be reassuring.
Just thought I'd share...
Gaynor, how I would love to go to Cuba! It must have been so interesting.
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Hi Everyone,
Cathleen, Cuba was fantastic, I would highly recommend anyone to go to theplace we went to. It was a tiny island just off the north coast called Cayo Santa Maria. The beach was amazing and the weather so good. The people are beautiful, so friendly! It was great to get away and not be known as Gaynor the cancer patient for a change.
Unfortunately it seems the flight has helped me develop lymphedema. I spoke to my PCP and onc and they are arranging a referral to a lymphedema specialist. Having said that it seems to be subsiding but they recommend seeing someone now to help keep it under control.
I have my 1st mammogram this lunch time and I have to admit I am somewhat apprehensive. Last year the mammogram didn't really show anything, it was the ultrasound that did - and I don't believe they are going to do an ultrasound today. Already I feel they might miss something and it will be left to develop another year, hopefully feeling like this is normal - if anything is normal anymore.
I felt like cr*p yesterday with swollen arm, shoulder, neck etc and I recall feeling like this before I was diagnosed so it made me feel panicked that it's back in my lymph nodes but I'm trying to convince myself I am over reacting! When, if ever, does the paranoia subside? What's the difference between the symptons that can be attributed to SEs from the drugs and having mets? Maybe if they explained more about that we wouldn't have to be so paranoid! I just remember last year pre-diagnosis that I kept feeling like I was coming down with some virus and my throat, underarms etc would feel weird, like a burning sensation inside them but nothing would develop into a cold or whatever, then it would go away for a while - like my lymphatic system was on overload - did anyone else feel like this pre-diagnosis? I would be interested to hear back from you on this!
Well that's my moans out of the way, sorry ladies for off loading on you but I'm hoping you understand - maybe the weeping, feeling down SEs of Femara are getting to me now!!!
Love to all
Gaynor
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Hi Gaynor,
I hope you learned something positive today about the lymphedema. I have never experienced it but there's always a first time, I guess, with this disease. I agree with you that the SEs of the therapy at times seem worst than the disease symptoms. I haven't had any side effects of the bone mets, except for a few twinges; however, the SE of Femara! Well, you know them. What surprised me was that I started on the Femara only yesterday and within hours I was in pain, sweating like a pig, and unable to sleep (even with an Ambien). Sometimes I think the oncologists should sample all the wares they dispense (especially the males), just to have some connection to the pharmaceutical world they support.(I'm not blaming them for my cancer, just think we'd move much faster toward cures if docs had to go through our pain.)
Feel better,
Cathleen
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Heya gals, after getting yelled by my oncologist that I can not take 'femara vacations' every month I am joining the Femara regulars club.
My feet are achy in the morning and my fingers which already were prone to trigger finger syndrome are worse.. I am trying to combat these symptoms by taking:
Fish oil
Freshly ground flaxseed
Cosamine
Hoping it will work to keep me active and ned !
Oh and acupuncture does wonders for the sleep night flushes.. I did it for 2 months and I felt better, dropped it for 3 weeks they came back with a vengeance.. now I am back on it.. guess will have to stick to my acup for 5 years.. yikes.. even at the discount I am getting ( 20 usd) that means I will be paying her a total of 20,800 !!@#$!$!???
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