FEMARA
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Hi...Big D and dventi,
I had the vertigo (room spinning on moving head in certain ways/times). I called my oncologist and told him all the symptoms, achy flu like, muscle and joint pain, spacey, ringing in ears, (like very distant crickets) and the dangerous vertigo. This was after just 8 days on it. He told me to stop for a month "to see if these symptoms are from the Letrozole" Ha ha ha, I was fine before, and 24 hours on, it has all ebbed away. I went to my Primary Physician the same day and she noticed congestion in one ear. I think I shall conclude, from this and other posts, that Letrozole puts some people at risk of inner ear infections (or inner ear problem of some kind).
Next stop, Tamoxifen. I guess I'll be changing threads! I just want to say that reading and being able to vent here really helped me. I appreciate the wisdom of all who have posted here.
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I just want to chime in on how good Chrissy's "book" is. Looking forward to many more! Wishing you a speedy recovery.
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Honeybair, have you seen a PT about the shoulder pain?
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Chrissyb......you have been an inspiration to all of us and continue to be.....keep the "books" coming....lol
Glad you are healing well from knee surgery....next thing you know, you will be running marathons girl...😎
For the newbies.....I'm almost 67 and have been on L for two years and three months now. In that time I have had many S/E .....all doable, meaning I have not had to take a break or change meds. As some of you have said this powerful little pill has to be our best friend so that is the reason I keep ploughing on with it. My S/E have included....hair loss, nausea, back pain, joint and muscle pain. Glad to say my hair loss has slowed down now, nausea gone, back pain gone. What has become increasing worse for me is the stiffness in the joints, which when I exercise more, subsides. On the subject of tinnitus....(ringing in the ears) Inhave suffered from this for more than twenty years but since starting L it has become increasingly worse. I am used to hearing "crickets" so I live with it quite well......lol
Last note.....these side effects do come and go.....for example, after a few months of back massages, I no longer have this problem. Of course, none of this has anything to do with the fact that I will be 67 soon.....lol
I encourage everyone to talk to your MO if things are just not doable....exhaust all avenues before making the final decision to stop taking these powerful little pills.
Have a great weekend everyone....
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I did have PT for range of arm movement which really helped. I just chalk up all the discomfort to the modified radical mastectomy plus the extensive surgery in my armpit to remove the large tumor there. Lying down in bed is comfortable for several hours, then I just have to sleep the remainder of each night in my recliner. I know that the proper daily exercises would probably help with my pain and discomfort. It is hard to forget about having had breast cancer when you have physical and visual reminders each day.
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I'm 37 got the the full spay in April, I have been on letrozole since May. I have terrible pain in my hips, my ribs, it hurts to breathe, sometimes I have numbness in my arms, and now the sheets on my bed hurt me. I get up 28-30 times a night so freaking hot, nauseous, dizzy, and now nightmares. I'm taking 10,000 IUs of D. I talk to my doctor and they think its because I'm going through menopause. I honestly can't understand the benefit of this pill any longer. I mean we take it for 5 years and our adrenal glands will still produce estrogen. Yes I'm overweight thanks to chemo, I'm tempted the next time I see my Oncologist to say if I drop weight I'm going off this darn pill. I'm scared to switch pills because I have had so many neurological side effects from other cancer treatments that I don't think my body can handle it anymore. Does this ever end?
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FairyDogMot......you are so young, I'm sorry you are dealing with all of this. I'm not the right person to give you advice really as I'm 67 and was diagnosed at 64 but I can relate to your nausea...I had it for the first year on L....I had to take a gravol suppository in order to be able to eat. After one year, it just left me. If you read back you will see that we all have various s/e that come and go. I hope someone closer in age will respond and give you some support. However, I do think you should run all this by your MO....that's always the best place to start. Please keep checking here as I'm sure others will come along with their experiences.
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yes fairydogmother, i hear you!just like scottiee1 said, please do go back and read though, and you will see how temporarily awful and changeable this WONDERFULLY life saving this drug can be to us. i was starting to wonder the other day, if how young or what, you are, may affect how femara affects us, like if is worse for younger women who potentially have more circulating estrogen than other women who are a bit older than me , i am 54, so right in the middle of both of you. not a very clearly constructed sentence, was that! keep coming back here for encouragement and commiseration with all of us. And love your new avatar, and i always loved your name when i first saw it, months ago! it reminds me of this old joke, i think it is my favorite one: did you hear about the dyslexic agnostic with insomnia? he could'nt get to sleep at night, wondering if there really WAS a dog.....
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Fairydogmother, (love it!). You are more than likely experiencing over load with the SE because you have been thrown into menopause because if your 'spaying' (damn I love your sense of humour!)
Normally as we age the estrogen production slows until it stops but in your case your estrogen organs have been removed and your body is screaming as it adjusts, add to that the normal SE of Femara/Letrozole and it is no wonder you are is such agony. I feel for you. I would ask you onc if there is anything that may help the SE or go an see a naturopath and see if there is something that they can do for you to help ease things along.
Hoping you can some help.
Love n hugs. Chrissy
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When I hit perimenopause at age 47, I thought I was going crazy. I completely lost my short-term memory - to the point where I couldn't finish a sentence.
I was having hot flashes every 20 minutes, and night sweats every 45 minutes. I was totally sleep-deprived.
The only thing that helped me was the fact that so many of my friends were going through the same thing at the same time!
One thing I did - that now I regret - was that I went on oral Hormone Replacement Therapy right away. It restored all the estrogen in my body, and my menopausal symptoms disappeared. The following year I had a total hysterectomy, but it didn't have much effect, since I was already on the meds. I stayed on it for almost ten years.
Unfortunately, a little over ten years later, I was dx'd with 100% ER+, IDC. Did the HRT play a part in this? I'll never know. At the time, though, it was worth it.
But I do feel for all the young women who are thrown so quickly into menopause. You'll need to do your research, and be sure to tell your MO. I was dx'd at the age of 60, and somehow that made it easier.
Hang in there, ladies!
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Honeybair, doing the daily stretches/exercises will definitely help. The exercises seem like nothing, but they do the job.
Fairy, I am older than you, but I was also "spayed" as part of my treatment. It is a serious roller-coaster. Even if the sudden menopause accounts for most of your trouble, your docs have to help you.
For both of you, I am convinced that what has saved my sanity these past few years is lots of exercise. It helps against all the SEs.
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I was spayed also at the beginning of all this! With so many surgeries and treatment to follow the next 3 years seem a blur, and I didn't seem to focus much on the s/e's. Three trigger fingers is what made me switch to half a pill of Femara. The trigger fingers went away almost immediately. While I have hot flashes, joint pain, elevated cholesterol,weight gain, and crazy fatigue while on this drug, my greatest concern is bone density loss. I had a baseline dexa scan ( which was normal) when I started and a followup at 2 years. If I remember correctly there was close to a 15% decrease in bone density. Somehow, I was still in the lowest range of normal so I'm not taking anything. I am supposed to be done in Jan 2015, and hope I'm not asked to stay on another 5 years. I anticipate not good news on the next dexa. It amazes me how all this has occurred with only half doses of this drug! And I am 5'11 and over 200 lbs! As they say, the greatest side effect...is life:)
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Thank you all. I read this whole post before I took L and was afraid to take it. It seems like the major SEs are getting worst the longer I"m on the pill. I do run/aqua areobics/walk daily. I'm making my list of why should I take this pill for 5 years.
Scottiee1-I still take Zofran to keep from praying to the porcelain god.
kathec Thank you. Right now I feel like I have fleas, because I'm itchy all over. Darn nerves. Love the joke
chrissyb I hate needles but I'm going to try acupuncture. The doctors can't give me a lot of other pills since I'm allergic to most meds.
Blessings20…I'm staying away from anything with Estrogen including soy products. Fat cells produce estrogen so I have to lose this weight.
Momine Thank you for sharing your story. It is hard to tell what is from "full-spay" SEs from Chemo/rads/or the pill at this point. 6 months out from chemo losing my nails even after I did the ice treatment.
jacee I might do the half-pill. Reading your post have made that a question for my MO.
Have a great Sunday.
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FairyDogMother - I hear ya. At first, I refused to take the Arimidex my MO ordered, saying that there was NO estrogen in my body, as it had disappeared years ago.
She very kindly reminded me that estrogen is still produced in the body, even in the absence of ovaries, and it is especially prevalent in belly fat. At that time, I was 5'5" and well over 200 pounds.
I joined a medically-supervised weight management program (liquid fast) and lost 60 pounds. I proudly went back to the MO, to tell her that I wouldn't need the drug. She was thrilled for me, and called in the prescription anyway. She said I reduced my risk of recurrence by 23% just by losing weight.
We do what we gotta do.
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FairyDogMother, I am so sorry that you are suffering so. I agree with others who believe that you have been thrown into menopause through your surgery. That plus the addition of this drug have just compounded your misery. Take comfort in knowing that we care about you.
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Been reading here for quite some time, and I'm glad I'm not the only one facing some difficulties with femara. Can sit, stand, walk, just have trouble getting from one to the other. I'm adopting ChrissyB's idea that this little pill is my best friend. Hopefully in time we'll be able to live together more harmoniously. I hate to even complain about it as I know lots of ladies here have been through so much more. I guess this pill is my love/hate relationship with modern medicine.
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Hi kkuziel.......yes there are many who have a very difficult time with this little pill but don't let that stop you from airing your hassles with it. Sharing how we feel is the way we get the support we need and as the old saying goes, 'a problem shared is a problem halved' and the applies to telling of your aches and pains......somehow we all feel better when we have spoken. I have a lot of arthritis so tend to blame my problems on that rather than the Femara as sometimes it hard to tell the difference.
Oh by the way girls, the knee is healing well and I have graduated to two sticks instead of a walking frame....woohoo!
Love n hugs. Chrissy
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Allright! that is good news, chrissyb! keep up the good work!
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Great news Chrissy!! You'll be good as new, soon:)
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Very happy to read that, Chrissy!
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Chrissyb - I just have to say thank you to you and others who are always there with a lot of understanding, help, kindness and just having an open ear to us all. Folks like you are so appreciated and I want you to know that. Glad you doing well with your knee!Cathy
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I second that ladies......❤️......Chrissyb....I told you, you will running marathons soon....
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FairyDogMother-oh how I LOVE your name! Jumping in without reading some of the inbetween posts as soon as I saw nightmares. That was almost the final straw for me. I have tried the passal of choices and am back on Femara for the 3rd attempt. 14 months now. The nightmares-for me-were horrid horrid horrid. Am now on Terazosin 2g @ bedtime. Tried something else prior-and didn't work. This is working. A med for hypertension-but found to work for PTSD and nightmares. Took about a week and slowly went from horrid to easier to basic dream state. But-if I forget I have a bad dream. I went out of town and missed 2 doses and had a horrid horrid. I saw my cardiologist today (herceptin almost killed my heart-for another story) he wanted me to stop it due to the other cardiac drugs. I soundly declined, explained, and he switched another. Ask your MO.
For the night sweats. Someone else has probably jumped in about Effexor ER. Works great. Most start out low and work up to what you need. I almost never even have a warm flush anymore. Has a nice side effect of helps with depression. Which many of us have because we have #*%&#%&% breast cancer.
I may borrow your name and put it over my office @ work. I took a new job the day i had my mammo. From that day I had a therapy dog in my building @ the university where I work-and now 2 years later-there are several therapy dogs. They go in classrooms and offices and hallways. Best decision ever! One of my friends had been wanting to bring his dog to work-I got cancer and he looked @ me and ! said yes. Administration refers to my building as "The Cowboys". We are actually the Division of Health. But I told someone recently I would not be surprised if I looked up and saw a cow wandering down my hallway. Am planning to put goats and chickens in a courtyard. Omlets for lunch....
I digress as usual...
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Oh, Chrissy - I forgot to tell you my Knee Replacement story...
My sweet Aunt had to have one, and did very well following her surgery. But one day I was over at her house and she was lamenting the fact that she could no longer do a full squat with both legs to pick stuff up off the floor.
I just said "Auntie - you are 92 years old. There is no reason for you to go around squatting down to pick up stuff. Let's get you one of those "reachers'. " I bought her one, and she was happy. (Of course, she was probably still squatting down to pick things up when no one was watching...)
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Cathy thank you for your kind words.
Blessings lmao at your sweet Aunt and her knee story........I gave up squatting many years ago as I could get down but not get up and as for picking up things off the floor? well I just bend at the hips......lol. I am so used to doing that, that i just do it automatically but right now if I bent to pick anything up I think I would end up flat on my face as I don't quite have the balance thing down with the new knew yet.......lol.
Love n hugs. Chrissy
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Question Ladies... When you take your Femara is there a label on the bottle that says take with food? Funny thing happened when I picked up my trial drug and Letrozole at the hospital pharmacy. On the paperwork that comes with the trial drug I was told to take both these together and do not eat or drink anything (other than water) one hour before taking them and 2 hours after. When I picked them up I was told to take with food. Seems there has been a change in procedure. Just wondered if same applied with just Femara alone? Perhaps this is only for the trial combo.Cathy
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The information paper printed off by the pharmacy with my prescription says....may be taken on an empty stomach or with food. I bet yours is protocol established for the trial.
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Cathy normally with Femara you can either or but if that's what your trial is saying it maybe the protocol needed for the new drug but so you still don't know if you have the real thing or the placebo they are making the protocol the same for everyone.
Good luck with the trial and please keep us up to date on how you are feeling.
Love n hugs. Chrissy
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Cathy, it sounds like you have gotten 2 different sets of instructions on taking your drugs. I would get this clarified by whoever is in charge of the trial. You don't want to do it incorrectly and then find out the trial results will not be valid because the drugs were taken incorrectly. It may be that the directions you got at the pharmacy do not apply specifically to this trial. I would want to be absolutely sure I was taking both drugs correctly.
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Thanks for letting me whine a bit, and you're right about sharing our struggles. I saw a friend of mine who had been diagnosed with breast cancer two years before me and was taking one of the AI's. I asked her how she was doing and she said just stiff every morning and every time I try and stand up. Guess it's true, misery does love company. I suddenly felt so much better, like having someone else say it made me realize it wasn't all in my mind.
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