FEMARA
Comments
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CelineFlower I have had vertigo off and on over the last three and a half years, the last in October last year. It was so bad that if I moved I vomited and it lasted for about two weeks. As you say, debilitating. This last bout has left me partially deaf in one ear.......really not fun when my hearing was perfect prior.
It is a problem that is suffered by many but vertigo is listed as a SE and it really annoys me when docs do not acknowledge SEs that are listed. Considering we rely on their 'expertise' I would prefer them to say they didn't know rather than say a definite no it's not related.........grrrrrr!
Hope you feel better soon.
Love n hugs. Chrissy
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thx chrissy...
and i agree its very frustrating...
only thing to do is stay on top of it ourselves...
That must really be rough loosing hearing ... i use gravol for the nausea.. but now i feel stoned all the time..
this is no life.. sigh
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My doc gave me Stemetil for the nausea and it worked a treat and luckily it's not one that leaves you feeling stoned..........I can't imagine how bad that must make you feel when your balance is off to begin with.
Yes, there are many things that we need to learn to manage ourselves but a good PCP is worth his/her weight in gold and mine is a treasure. He has given me his private mobile number and if I need anything or even have a question I just text and he answers usually within 30 mins or quicker either by text or call. I count myself truly blessed.
It's not a perfect life that we are left with but it is life and even finding the smallest joy in each day makes it well worth the living.
Love n hugs. Chrissy
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Celine, I did have a few incidents of sudden, brief and fairly extreme vertigo. It eventually passed. That is one of the odd things with the SEs on this drug, they seem to come and go.
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Dizziness is specific side effect label on my prescription. Have it rarely but had about same amount for years. Wake up with it so I think it must be inner ear.
Rohanna - I didn't start taking something for heartburn/GERD until last year so I attribute it to Femara. I know my weight is no help either. My doc made me switch from omeprazole (Prilosec) to ranitidine (Zantac) last year. I think it has to do with calcium absorption but have to ask at next visit the reasoning. Don't think the ranitidine works as well but you can take it 2x/day which you can't with the omeprazole. You can tell by the names they are different families. Protonix (pantoprazole) is more related to the omeprazole. Maybe call PCP and see suggestions or trade off to another GERD med. I would not give up yet.
And yes Momine I agree with side effects changing and the coming/going bit.
I had the sore hands/extreme sore feet for a few months but that has gone. I still walk like a 90 year old. Due for a Dexa scan here in a couple of months. No doubt it will show worsening osteopenia if not frank osteoporosis.
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I'm still 6 days away from starting Femara but I'm getting scared! I already have almost daily heartburn, arthritic hands and vertigo (benign paroxysmal positional vertigo for the past three years)... I just have to hope I'm one of the lucky ones, right?! Maybe if I've already got all the SEs without taking the drug, then it will have the opposite effect? I can dream
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Iahela you may indeed be one of the lucky ones as am I. I have very few SE and what I do have come and go. You never know unless you give it a go.........good luck!
Love n hugs. Chrissy
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Let me add to above that I'm far from the best at exercising. In fact I'm a
slug. And that was in the latest research postings from the Mods on BCO, reduction of pain with AIs. I know if I was more faithful -
ha more like just do it - about exercising I would feel better. When I got up
just now to warm up my coffee it was the 90 year old lady walk for a few steps.
I do what I want to do, play with my goats, shop etc. I am 61 so that in itself
contributes, that and I was menopausal long b4 BC hit. Doc was already watching
my bone density closely.lahela - The best advice and what I read again and again on here is that
most women on Femara are out living their lives. Not on here posting. People
come here for advice, that's why you may - and I say may - see the worse case
scenarios. Others like me, Chrissy, Momine just to name a few are doing what
they would be doing anyway given their age/BC status. I stay here for the
companionship. Absolutely agree with Chrissy above. I will endure most anything to not have BC rear it's ugly head again - and I've not found that thing yet I can't endure.Do know there are 2 other AIs to try also.
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Celine, YES. Not debilitating though.
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Lahela, I had bad SE's on Aromasin and Arimidex, but have had very few on Femara in the 3 months I have been on it. I hope all turns out well for you.
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RE: Dizziness and Vertigo...
I have four different neurological conditions that cause dizziness and vertigo. I do get a little light-headed with Femara sometimes, but not often.... and I'm really not sure it's the drug causing it.
If you do experience dizziness or vertigo on letrozole, make sure you report the right term to your MO.
Dizziness is kind of a swimmy, weird, walking on sofa cushions, light-headed, can't really see straight sort of feeling.
Vertigo is the perception of movement - the classic being "rotational vertigo", as if you are sitting in the middle of a skating rink, and the world is spinning around you. Another lovely version is the world spinning over and under you.
Motion sickness originates in the inner ear... which is so far inside your head, it is behind your eyeball. Sensors the inner ear get mixed signals as to where you are in space, and initiate the vomiting reflex in the brain.
OTC anti-motion sickness drugs like Dramamine can alleviate the nausea, but generic meclizine (25 mg) does the same thing without drowsiness. Unfortunately, it does have other side effects, so definitely ask your doc first.
The meclizine does not take my dizziness away but it does keep me from getting sick. Too bad one of the side effects is urinary retention... meaning I have to pee every five minutes, and only a thimbleful at a time.
One very effective vestibular suppressant is Valium, but it doesn't work for everyone, and it also comes with its own side effects.
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chrissyb, thanks for your response with regard to my 'roof of mouth pain' problem. I am supposed to have a root canal this a.m. thru a crown on right front tooth. But it appears I may have 2 diff. problems going on in my mouth. I talked to my oncol. nurse about the roof pain problem and she said that it's a first of hearing of this from possible SEs of femara/xgeva. My dentist gave me a special mouth wash and it helps just a tad. I feel I'm still in a dilemma. I don't want that root canal if that 'may be part of the problem' of my front tooth hurting. I just don't want to have that extreme measure if that may not be the cause. Can anyone relate or have had root canals during stage 4 breast cancer treatment?
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Naturegirl I was thinking, not sure if that's good or bad, I'm wondering if you are not getting some reflux at night and the stomach acid is not burning the roof of your mouth. Do you usually have a reflux problem? Stomach acid is pretty potent stuff and just a few drops could burn like you are describing.
Just a thought. I haven't had any problems with my teeth since stage IV so not sure which way you should go. I sure do hope you get some answers soon as any dental work at any time is a real pain.
Love n hugs. Chrissy
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Everyone, thanks for your kind responses to me. I can see we do all have differing side effects. I have bouts of dizziness as well and did not know this drug could cause that as well. I am going to confess, though, this tiredness and sleep disturbance are really getting to me. I take mine at 9 pm and wish it would let me sleep through the night. Also, the frequent trips to the potty are annoying as well. No wonder many women refuse to take this drug. The quality of life is pitiful. Guess I will discuss this with my MO next week. Maybe she will have some words of wisdom. .
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luv, thanks for the response. I'll talk to the onc about it when I go back next month. I don't exercise either because of the fibromyalgia but I may get out the Just Dance for the WII and start bustin' a move.
chrissy, I had some mouth issues too so I bought some Aloe juice and swish it in my mouth at night after I brush my teeth. It helps a lot!
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rohanna, as far as the indigestions goes - YES, much worse since beginning letrozole. I have to take the drug in the evening or else I'm too fatigued during the day, but I've found that if I take it too late in the evening, that then I'll have indigestion all night.
As for the dizziness, I have only occasional moments of dizziness. When they happen I feel like I'm going to pass out, but the quickly subside.
I haven't (personally) found that exercise helps those particular SE's at all, but I most assuredly does help the achiness and joint stiffness - though when I'm cold the stiffness comes on regardless of how much I've exercised. Ergo, I keep the house much warmer than I used to.
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So happy to report that today was a good day and that I actually felt really good and had energy. I did sleep better last night. Perhaps that is the reason.
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Dear ladies - has anyone had mouth sore issues with Femara? They are not too bad (kind of like an irritation in the mouth), and perhaps entirely unrelated to Femara, but I wanted to ask you ladies to see if anyone else had a similar experience.
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I suffer from mouth sores. They started about a year after starting Letrozole. You described them perfectly ......an irritation more than being very painful.
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thanks scottiie1 - I have been on Femara since last July just about 7 months, and this irritation started recently.
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I have been taking femara for fours yrs. I am seriously fighting with idea of quitting one year early. The side effects have never gotten better and over last six months have gotten worse. I am afraid to stop and afraid to keep on. When I spoke to oncologist at last appt three wks ago I was told that the side effects were 'in my head and the FDA would not approve drugs if they had all these side effects I complain about'
I can't find stats anywhere on the risk of recurrence between 4 and 5 years taking femara.
Has anyone else stopped before the five year mark?
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Pemurray, your onc said that? Is he on crack?
To be fair, some of the SEs could be confused with normal menopause or age-related issues. It may also be that menopause/age stuff can make the SEs worse. When I asked my doc which SEs to expect, he said the list was so long there was no point in going through it. He said to let him know what was happening and we would assess and deal as we went along. In my case, exercise has helped a lot and most of the SEs have faded a bit. But I know not everyone is so lucky.
I would urge you to get a second opinion, both on the SEs and the dangers of quitting early. I would also urge you to get a thorough physical, not with the onc, just to rule out any other issues.
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Hello everyone! Hoping someone can help... I'm sure someone has answered this question...what to do with femara pain? Actually I'm on letrozole for about 1 1/2 years. I have hot flashes, trigger fingers, pain so severe in my wrist that I could not even open a door knob, finally got a cortizone shot which completely took it away. This is where my frustration lies...I have had severe knee pain,went away, ankle pain, after a few months..gone. This is how it goes, now it has settled in my shoulder and upper arms. Motrin helps a bit, but I'm terrified of taking NSAIDs long term because it increases risk of heart attack and stroke. I take curcumin, baby aspirin every other day, calcium, vit d., fish oil. Does chodritin work. Naproxen also tried..doesn't work like motrin. I can't sleep because of the pain. It diminishes when I'm not lying down..only certain movements affect it then. I don't want to stop this medication, even if it reduces my risk by a small percentage. But, right now, all this pain is too much.
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Theresanne another natural anti inflammatory is Boswellia Serrata. I take both it and Curcumin daily as I have bad arthritis and can't take normal NSAIDS to ease the pain. I don't know if because I take them I get no Femara pain or if I'm just lucky........lol. magnesium can also help with the muscle aches and assist in the bodies usage of both your calcium and Vit D.
Sure hope you can get a handle on your pain soon.
Love n hugs. Chrissy
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Thanks for responding Chrissy! I do also take magnesium supplement in the form of a product called Natural Calm. I was having alot of muscle cramping and that has helped with that. This shoulder pain seems like a severe tendonitis as was my wrist..dequavains (spelling?) tendonitis. I never ever experienced any form of muscle/joint/ tendon related pain before letrozole. Nothing. At least my oncologist agrees these pains are related..some do not. I will investigate/ try the boswella. At this point I'll try anything.
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Hi all,
Update -well, I opted OUT for a root canal on Wed. Went to my dentist, and asked if he would give me a round of antibiotics and to see what would happen after that. I'm on day 3 of antibiotics, pain is much better(but still there) in roof of my mouth and front tooth under crown. He told me that in two weeks, I would again have pain from my tooth. He also gave me his 'magic' mouthwash which I think is helping the roof of my mouth problem. He saw no mouth sores, just irritation. I also asked him about what he fills the root canal with when/if I do have the root canal down the line. I have latex allergies. He said he uses gutta percha, that is made of rubber. I did some reading on this prior to asking him, and I think it has latex in it. I told him this and he said I read too much and not to believe all that I read. Can you imagine? I'm trying to keep side effects and more problems at bay down the line. When does this stop?
chrissy, thanks again for your input. I do not suffer with acid reflux, thankfully, at this time. I may be headed for a root canal in several weeks, IF, the pain comes back. This way I think I have a better handle on the issue of pain. For the roof of my mouth, we'll have to see on that as well.
rohanna, hummm, aloe juice? I guess you can purchase it at A Health food store?
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Naturegirl, I'd be finding a new dentist.....as far as I know rubber, unless synthetic IS latex....be very, very careful...
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Hi Ladies, I wanted to share something with you all that may be of interest to some of you. My biopsy revealed that I was ER+PR- and HER2+. My ER was only 1% postive. I started AI's after chemo/rads in mid November. I had a hard time on aromasin and switched to Femara. I still had significant SE's--even with a lot of exercise--which I'm good about. Late January my MO sent my tissue block out to Genomic Health. They do oncotype testing which is generally done on HER2- PR+ women to help inform chemo decisions. But they use a different technique (not immunohistochemistry) to measure ER/PR. Mine fell well into the negative range so I can discontinue the drug. For me this is very good news since I had SE issues and with what looked to be very weakly positive ER, was of dubious value. For all you that are ER/PR positive, I know these drugs reduce recurrence a lot--a big win. If any of you are very weakly positive and having trouble with SE's you may want to ask your MO about further testing. Love and best to you all! Gracers55
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I started Femara a few weeks ago and I am already feeling like an old lady. I wish there was tissue that I could send out for further testing, but my tumors went away before they could be biopsied. My first dx. was TN. My second one was Er+ by 25%, Pr+ by 50% and Her2-. I don't know for the life of me what the third one was, and my onc thought it was behaving a lot like a TNBC, but I'm taking the Femara anyway because I have no way of knowing for sure.
Hugs to everyone,
Brenda
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Hang in there, Brenda, I am going to be starting Femara soon myself, and they say for 10 years, so we will see how it goes. Waiting for test results, all of which should be back when I next meet with my MO on Feb. 18. If all goes like we expect, then rads will start right soon after that with the Femara. I am ER+ 100%, PR+ 100% and Her-. Maybe one day they will come up something with fewer SEs, we can hope.
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