FEMARA
Comments
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Nanna......congrats!!!!!!!....please keep in touch and tell us about all the wonderful new things we have to look forward to when it is our turn.....lol.....I have another 3 years to go......can't wait. I don't have any issues with sleep but joint pain is getting progressively worse the longer I'm on L. I'm determined however to stick it out as everything is still doable.
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GrandmaV – thanks for the research.
Chrissyb – so glad your SEs are manageable. Wait, they’re
more than manageable. From what I hear on other threads, you ARE the Energizer
Bunny!Thanks, micheleboots – I think I am taking the entire rest of
the Christmas season for myself!!! And you?Gardengumby – thank God for retirement. Unless I have an
early morning doctor’s appointment, which I avoid at all cost, I never set my
alarm, and sleep til I wake up. That makes a huge difference. Ohhh, I feel your
shoulder pain! In 2000, I had a shoulder reconstruction (done arthroscopically,
thankfully) and they cleaned up masses of scar tissue and bone spurs and shreds
of ligaments from an earlier fall. Prior to that surgery the pain was 24/7, and
felt like a gunshot wound. (Or rather what I imagine one would feel like since
I’ve never been shot…) Do you have any plans to have your shoulder fixed? I
hope your pain resolves soon… I know how miserable you must be.Momine – I think you found a perfect solution for your
back pain!!!! :-) Unfortunately, I can’t blame too much of my pain on housekeeping,
as we have retained the house cleaners we hired after my BMX. They do all the
heavy work. I just try to keep an open space for them.Scottiee1 – Hang in there! Are you exercising? My MO
SWEARS that’s the answer. She says she doesn’t care what I do, she just wants
me to keep moving, and doing as much (or as little) as I physically can. Every
day you stay on the drug is one less day you have to be on it in the future. Before
DH retired, I bought him a “Countdown to Retirement” clock that showed how many
days, hours, and minutes he had left to go. (It measures 5 years, so in the
beginning, wasn’t too exciting.) But I think maybe I could find it and reset it
and call it my “Countdown To Going Off Femara” clock… gee… just four more
years!!!~ ~ ~
Ladies with existing back problems – how many of you have
had MRIs of your back? As I look back, I think I have had only X-rays. As the
pain gets worse (and more frequent) I’m wondering if an MRI might be in order?
My diagnoses are from a few years ago…. Your
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Blessings, I did have an MRI for the back, about 3 years ago. that is how they found the herniated disk. I would defi itely recommend it. they can't see much on the Xray, as far as I can understand.
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I posted in the Stage 3 forum my Femara question and reposting here. Anyone been on Tamoxifen and switched to Femara? I haven't had se with Tamoxifen. Anyone previously on Femara and switched to the generic Letrozole? If so, have you noticed any difference going from the brand to the generic?
My ooph. surgery is next week and I'm switching from Tamoxifen to Femara. It is much more expensive than the generic but just found out my insurance will pay.
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peacestrength - I can't answer your question, but wanted to share this. When I was diagnosed and found out I was BRCA 1+, I had an ooph at the same time as my BMX. I was younger and not near menopause. My since fired MO, put me immediately on Femara. I had debilitating side effects. My new MO has said it is likely that my side effects were so severe as my body went from having all my hormones, to having a negative amount. My new MO has placed me on tamoxifen, said we will try again in the future with an AI, as after having a period of adjustment, my body may handle it much better. So my plan is to hopefully tolerate and be on tamoxifen for a year or two and then try the AIs again. Please consider staying on the tamoxifen for at least a few months, and then switching. Give your body time to adjust. I wouldn't wish the pain I had on the Femara or arimidex on my worst enemy.
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BayouBabe has a point.
Most women, as they get older, go through a 5 - 10 year period called perimenopause. The estrogen levels in their bodies gradually decrease, the side effects of menopause come on slowly, and eventually their periods stop completely. Going through menopause naturally can be difficult, but having friends going through it at the same time makes it easier. (Group hot flash, anyone?)
However, surgical menopause takes that 5 - 10 year "phase-out" process and WHAM! Overnight, you are thrown into full-blown menopause. That in itself is a shock, as post-hysterectomy patients will testify to.
But to add in being of a younger age, the dx of BC, and all the surgery and treatment that entails, all that just magnifies the effects of no estrogen in the body.
I feel for those of you who were broadsided with all these SEs at once. I was 10 years post-menopausal, and 9 years post-hysterectomy when I got my BC dx. With the Femara, at least I knew more about what to expect, since I'd gone through many of the same SEs in the past.
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I started tamoxifen 10/24/2013 and had hysterectomy on 1/9/13 and then switched to letrozole one week after surgery. I had few side effects on tamoxifen and really had no major side effects on letrozole in the beginning. Starting this fall my shoulders and elbows really hurt. My MO doesn't think it is the letrozole, but has agreed to let me take a 10 day break to see if the SE lesson. I am going to do this in early January since I am really having pain in my shoulders that is getting worse and keeping me from sleeping at night. I will keep you posted on what happens.
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Does anyone know if Femara/Letrazole causes your feet to hurt and cramp? Fortunately this pain comes and then rapidly goes. I am accustomed to nighttime cramping of my feet, but not daytime. I am also stiffer than usual when I walk, but attribute that to being stuck at home nursing a horrendous cold and not getting my walking in each day.
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Thanks for responding. I have chemo pause and still continue to show menopause on my lab work - so I hope that the ooph next week won't cause me too many menopause related problems.
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Bayoubabe, it may have played a role, but I went through the same - ooph while not in menopause and then AI. It was a crash course in menopause, but the SEs were not that bad.
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honeybair, yes, foot pain is common and the best remedy is walking. So if you are not walking these days, it would make sense that it is bugging you more.
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Peacestrength, I took Tamoxifen for 6 mths and then changed to Femara. I had bad hot flashes and moods swings on Tamoxifen but minor on Femara.
I have also had a mixture of Femara and generics will no noticeable effects.
Good luck with everything!
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Nanna, congrats on finishing and feeling better.
I have been getting foot cramps since having recon surgery two years ago, but I blame it on the meds. I think it popped up about the same time as the surgery. I get them any time of the day but mostly at night.
Saw the surgeon yesterday to chat about getting mt ovaries out. I'm booked for valentines day. Yah me. How was recovery for those that have had this.
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Michele, I had an easy time with the ooph. In fact, I had a partial hyster and extensive clean-up of old adhesions. It was all done with the robot - DaVinci. I was in the hospital 24 hours, during which time I had a pic line and a catheter. Those made me very unhappy, but it was 24 hours, so doable. When I got home, I did have 3-4 days of being quite unhappy from trapped air and constipation, both of which were both painful and uncomfortable. I had a check-up a week after the surgery, and at that time I was cleared to resume walking, gym etc. My belly remained somewhat swollen for about 3 weeks, and I was somewhat more tired than usual (like tucking into bed late afternoon with a book) for 2-3 weeks. But I that was about it.
You may have some ruckus due to the sudden drop in estrogen. For me it showed up several months later, when I had a 3-week bout of depression. It eventually let up, but be aware that it can happen. Also, you will mostly likely experience some weirdness in the hoo-hah department, but don't let it get you down.
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Have a question for all of you wonderful ladies, and please please forgive me if has been asked already.
Been on Femara for almost a year. Good news is that hot flashes have let up almost completely in the last month (I know this may not be permanent, but, hey, enjoying for now...) Joint and muscle pain has been uneven. Started with hips where it aggravated bursitis and what is probably early arthritis. I found that not sitting for long periods really helped lessen this. Has always been in feet, shoulders, ankles, even hands to some degree, but I can handle this and moving around especially swimming, helps.( Early morning, or after long car trips...the worst!Really look 95, and I am 53, as I get up.) However, I am now suffering from two new ailments that I wonder if any of you have had, or have heard of.
I am having intense neck,upper back pain. It feels muscular, not skeletal. I can actually hear my neck creak (totally creepy) when I turn it from side to side. It hurts in the area where it seems a good massage would do wonders:) but I mean really hurts, especially after standing for some time. I wouldn't have even written about this if it weren't for the second wacky symptom, because I wonder if they are connected. I've developed tinnitus in one ear. I hear my heart beating from time to time in this ear and the ear feels stuffy. First thought it was swimmers ear as I swim a few times a week, but after a dr visit and a course of antibiotics didn't help, I went to see an ENT. He saw nothing wrong with the ear but gave the symptom a name, pulsatile tinitus. Scared me to death sending for for a doppler Ultra sound on the carotid artery, which luckily, thank God, showed no blockage. He also sent me for a hearing test which shows mild hearing loss, but not that different from a hearing test I had two years ago. This has been going on for about two months and sometimes it really drives me crazy. It is as if the noise around me fades to a background din and the pulse is louder than everything. I read somewhere on these boards (after searching tinitus) that sometimes the bones in the neck can shift due to arthritis, osteoperosis, etc and even a slight shift can impact the bones in the ear, which are very delicate. I had a bone scan recently that showed a slight decrease in bone mass since my baseline last year but I am still above normal. I am going back to the ENT this week as he seems to want to keep hunting for the reason for this. Loving medical tests as much as I do, I'd prefer to have a miracle insight from you great ladies, an AHA moment, so I can tell him...'It's just the Femara...'
Thanks!
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Sgreenarch, I had pulse tinnitus and I no longer have it. It was very scary though and i also had a carotid artery US to rule out a blockage. Mine was caused by erratic blood pressure and even though I was on blood pressure medication, I was having spikes and my elevated bp at the doctors office was being ignored. I changed doctors. Since I had my blood pressure medication changed, I have not had the problem. You may want to rule out HBP, just a thought. Sadly, I have no input on the neck creaking and pain.
Good luck....so very scary to hear your heart beating all the time.
msP
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Sgreenarch, I wish I had something wise and insightful to say. Some days I feel like I am in my 90s. Aches here creeks there..I just chalk it all up to the meds.
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sgreenarch, I'm with MsPharoah. I had pulsatile tinnitus a (before BC) few years back and when I got my blood pressure and heart rate under control it went away and hasn't been back. It may be blood pressure related. But on the other hand I do have tinnitus of a different kind (buzzing and ringing) that was caused from carboplatin that has been with me since last chemo about 2 years now and appears to be permanent. It doesn't seem any worse since starting femara, been on it 1 yr 9 months.
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sgreenarch - I have degenerative disc disease in my neck and upper spine. I have had surgery and placement of a plate and screws due to its severity. I have chronic pain in my neck and shoulders. It has worsened with the AIs. I can hear my spine when I move; sounds like my back is full of gravel. When a disc/nerve gets particularly pinched, the pain can be intense. Is it possible you have a pinched disc/nerve intensified by the Femara?
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Thanks for your input everyone. I will let you know how things go. I'm scheduled for ooph on 12/31 - what a way to bring in the New Year. My Femara has been ordered and will start after ooph.
Breast cancer sucks!
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hi. I have HBP since starting letrozole. Also since then have heard my heart beating in my head. It's creepy.
Since retiring I've made certain that I exercise daily. The exercise on conjunction with actually getting the sleep my body wants has REALLY diminished the SE's. I still get bad leg and feet cramps, and when moving from sitting to standing I look and feel like I'm 93 instead of 63... but I feel much better!!
In regards to taking tamoxifen prior to letrozole, I took yamoxifen for about 6 months. For me the leyrozole is MUCH better. On tamoxifen I was completely exhausted all the time. I had some truly strange aches and pains including ones in my feet that were so intense that I could not stand. In the end they finally took me off it as I got a lot of blood clots. DVT the full length of my leg and multiple PEs so that I started passing out... which is how come they finally did a scan on me...
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good morning, my first post.
I started Femara after the Aromosin stopped working after 7 month is ish. Now been on Femara for around 12 months. Far less symptomatic than the former drug.
Aromosin I had huge flushes all throughout the day whereas Femara I get one flush around 2 hours post swallowing.
Aromosin gave me huge feet soreness, especially when getting out of bed first thing. Some days I would just topple over to the great amusement of my husband. Femara very mild. I do notice a lot of crying and unable to cope with the small stuff but this could be from the Lyrica which I started 5 months ago for the massive arm and hand pains post the bilateral mastectomy and a rather troublesome neck node issue. Lyrica is an amazing drug if you have nerve pain, more commonly used for epilepsy.
Did notice some hair thinning on Aromosin but this may have been due to the hair re growing in this manner post chemo.
For me it's a thumbs up for Femara. Might be coming off soon due to possible 3rd attempt with chemo soon?
Might be going on a trial chemo as there are heaps in Australia for BRCA 2.
Anne Landers
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Anne, great that Femara is not causing too many problems for you
Sgreenarch, I have always had back and neck problems but, after starting on Tamoxifen and a running program, I got hip bursitis earlier this year which then settled and became tendinitis. It has settled but I am still having soreness from time to time. I am now on Femara and yes I do seem like a 95 year old some days! I am 54 and find that exercise, particularly walking, and massages, especially in the painful areas really helps. I actually find the more I exercise the better I am. I am not sure how much us due to the drugs and how much to my pre-existing problems and age, I just know that if I keep moving I am doing better. Good luck!
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Hi, Momof3GreatKids – hope your drug holiday gives you
some relief from the shoulder and elbow pain… just remember that sometimes it
takes much longer for SEs to leave the body once you stop the drug. Hope you DO feel better soon!Honeybair – have you seen a Podiatrist for foot pain?
Turns out I had Plantar Fasciitis, and had to give up all my flat sandals, and
wear only shoes that could accommodate a Power Step orthotic. But it sure made
a difference, and other than some stiffness, I don’t have the big foot pain I
used to.Momine – My PS was my BFF when he gave me a catheter
during my BMX. No getting up to pee… how great is that? When I had my
hysterectomy it was LAVH – Laparoscopically Assisted Vaginal Hysterectomy. I
had three tiny incisions: one in my belly button and two down low on each side
where the ovaries were. It sure made recovery a whole lot easier.Sgreenarch – creaking sounds can be normal, or a sign
that something is wrong. For example, creaking sounds in the neck can come from
very tight muscles that are impinging on the vertebrae in the neck. Other
sounds (known as crepitus) can be signs of osteoarthritis. As far as pulsatile tinnitus goes, it is more
widespread than you think – with millions of people affected all over the
world. I commend your ENT for trying to find an organic cause. If none is
found, then there are masking devices and other ways to distract your brain
from noticing these sounds.Peacestrength – wishing you a successful, quick procedure
on the 31st, and a rapid recovery.Gardengumby – if I have to go off the Letrozole for any
reason, my MO says the third drug I’ll try would be Tamoxifen. Somehow the
blood clot SE just scares me. Several family members have dealt with blood
clots…Welcome, AnneLanders!
Hope all my Femara sisters are having a great weekend
with few SEs, and lots of good rest!!!0 -
Thanks so much for all of your responses so far. As always, we know more than everyone about what we've got going on
I have an appt w the ENT this week and will keep you all posted. It is good to keep ruling out things.
Thanks!
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Blessings, NOBODY who gives me a catheter is ever a friend of mine, lol. I was sore for 3 months after that last one. Yuck! Besides, I couldn't wait to get up and do stuff after my surgery. I was up and using my laptop (standing) a few hours after I came back to my room after the BMX.
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I made it though my ooph surgery - I'm in pain but it's manageable. I took my first Femara today.
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Peace, keep me posted as to how it was. I have one planned for Valentines day. Was it laproscopic.
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Michele boots - yes it was laproscopic. I have 4 incisions (belly button, ovary area and one lower). For me the worst thing is that my abdomen is still full of air - painful. Hopefully it will work its way through soon.
Another question, pharmacy stated that Femara only comes in 2.5 mg tablets - is this dosage what everyone else is taking on a daily basis?
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Peacestrength - Yes that's the only tablet made and is the standard daily dose.
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