FEMARA
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Oh, POOP. Had a big long post written and poof! It was gone!
Hugs to all who need them, congratulations to all who got good news.
Loved Momine's comment to me a while back after I had Xrays "It's not mets - your back is a train wreck - YAY!!!" Which is exactly how I felt.
Had my first session with new acupuncturist yesterday. Started out as a referral from my MO for joint and muscle pain associated with SEs from Femara. (It's a covered Kaiser benefit.)
Turns out the doc - who used to work in Kaiser - now has her own Acupuncture and Traditional Chinese Medicine clinic.
That had to be the WEIRDEST treatment I've ever gotten. First: moxibustion/cupping. She lights a fire in a glass cup and turns it over and whacks it on whatever part of your body is tight. Immediately it creates suction, and the skin (and underlying blood, and lymph) is sucked up into the cup. This improves the blood and lymph flow and gets rid of stagnated areas. It felt like a giant octopus on my back. This morning I have seven giant purple hickeys on my back. (Trust me, it was NOT pleasurable.)
The good news is that I had to lie on my stomach (for the first time since BMX in 2011 and Exchange in 2012) and my saline implants did not explode.
Then she stuck needles down the top of my head, straight down the middle. Needles on bone... yikes!
After that was done, she told me to go home, take it easy, massage the top of my head, and drink warm water - no ice water.
I see her again next week!!!
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Just started to Femara last week, I was wondering if this affects your bones does it also affect your teeth. Does anyone have problems with their teeth?
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Oh Blessings! I was getting excited about the free acupuncture I get for participating in a clinical trial. Now I just may be scared to call and set up my sessions! Oh boy!
Please be sure to report back if you noticed a difference. Sure hope so after all of that!0 -
Oh, BayouBabe - I think the problem was that I went in just expecting regular old acupuncture. I had that years ago, and there was no pain involved. (And no cupping!!!)
But this time, I have a really painful, acute back problem (anterolisthesis at L3/L4), and she (the acupuncturist) may have focused on that instead of the chronic joint and muscle aches from the Femara that I was referred for.
If you get it free, I would say go for it! Just ask when you go in what the plan is, and ask that they please explain every thing they do to you as they go along.
The philosophy is that the body has an continuous energy flow, and anything - illness, injury, surgery, even psychological trauma - can disrupt this flow. It goes from the top of your head to your feet, along pathways, or "meridians"... and each meridian corresponds to a different part or organ of the body.
Even if you and I were going in to the acupuncturist for the same reason, he or she would take note of where tightness and pain occurred in our bodies, and even the needle placement could be quite different.
This doctor told me I would be seeing her every week for several weeks, then maybe twice a week, then maybe once a month. So I'm not expecting any overnight miracles. But my brother says he feels relief in his back each time he goes to his acupuncture sessions!
Make that call!!!
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Hi friends,
I started Femara five weeks ago and let's just say I'm hating it! I can deal with anything for six weeks or six months but like many of us I'm looking at 10 years (my doc was pretty adamant; I'm very high risk for recurrence and have little kids to raise). Time to get proactive. Here's what I'm doing:
-exercising (trying to do some combo or walking and running for 45-60 minutes/4 miles daily-ish)... I'm "normally" a distance runner but I feel like a 42-year-old who's been body-snatched by a 90-year-old with one boob!
-as of today, putting myself back on L-Glutamine, which I took during taxol. Anyone have positive/negative experience to share about L-Glut and Femara?
-hoping to try acupuncture; need to call my oncologist for prescription
Any other ideas?? Many thanks for the support!
P.S. I'm in my second week of radiation; all well so far.
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Alaskamama,
I've been on Femara since late August and have experienced mild joint pain and stiffness...and then severe joint pain after 60 days that lasted about a month and was really scary. What I found is that exercise was the most important factor for me. I am doing well, now and if my onc told me I need to be on this for 10 years and that it would keep this beast away, I would be OK with that. I power walk for a minimum of 30 minutes each day and do significant stretching before and after. I still have stiffness when I get up in the morning or have been sitting for a period of time. And yes, I feel like an old lady!
MsP
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Alaskamama, I have heard many say exercise is good. Lucky for me I have been doing ok on Femera, since I am not a big exercise type of gal. I should be though.
Michele
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well tonight I took my last Femara, 5 years seemed like an eternity and I was terrified of taking the first pill as I had read so many negative reports about it, yes there have been aches and pains along the way but overall I have tolerated it very well and yes I was one of the ones when my onc said exercise was a way to help manage all the side effects I took her words and ran with them and now at 63 I have become a gym rat.
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Hbcheryl, let me be the first to congratulate you. No go out there and continue to work out and enjoy life without those pills.
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HB Cheryl! HIP HIP HOORAY! Congrats. Check in in a couple months please & let us hear about life after Femara!
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Wow, I haven't checked in for awhile and I've missed a lot!
Firstly, HB Cheryl congrats on not only getting through but getting fit!
I have to agree MsP that exercise makes it soo much easier. I've always been into exercise and this year started running but I've had a number of setbacks, hip and then calf problems. I almost always do a daily 30 minute morning walk but since the calf injury I hadn't been doing much else and I was very stiff especially after sitting for a time. Well, on the 2 Jan that changed. I've been to 4 gym classes including cycle and Zumba in addition to walking. I saw my chiropractor today who us amazed how much I've loosened up since my last appointment. If you can, I would definitely recommend exercise!
I also recommend massage and I would love to try acupuncture....Blessings, keep us informed of your progress.
Interesting about cholesterol. I hadn't realised that may be an issue. I must look into that as well.
Gale, re teeth, I don't think there is a problem. My Dentist has recommended a tooth implant and I've asked him to investigate. I'll let you know what I can find out.
Chrissy, you are always a mine of knowledge. Can you add anything on the teeth issue?
Happy New Year everyone, may 2014 be kind to us!
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CHERYL:
XOXOXOXOXO
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Congrats Cheryl!!!!! Kiss the Femara goodbye and say hello to the new you!....woohoo!!! You go girl!!!
Gale, providing your teeth are in good order when you start Femara I have not heard of anyone suffering with adverse effects to the teeth from it. As always though, make sure you keep up with your dental appointments and do let them know the medications that you take so if anything untoward begins they can nip it in the bud so to speak.
Love n hugs. Chrissy
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Hi Alaskamoma,
Thanks so much for your post. I hate this too! I started on anastrozole and stuck it out for about 8 weeks. I'm a distance runner too (of sorts) and did a decent 10k early December and within a week could hardly get out of bed. I also work out and find that helps a lot. I don't exaggerate and am not prone to drama either--but these drugs are devilish. My MO switched me to Femara 12/28 and it's much better than anastrozole but not a walk in the park. I've had other SE's in addition to joint pain--mostly fatigue--but the most significant so far is the joint pain. The third AI is aromasin, which I understand includes steriods. I have an appt this Thursday for a Herceptin infusion as well as a MO visit so I plan to ask him about aromasin. Anyone have experience with it?
Please keep us posted. I'm interested in how acupuncture may help. ALL OF YOU--HAVE A WONDERFUL WEEKEND!
Gracers
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is anyone out there suffering with migraines as a side effect of letrozole
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Sandiesau I had terrible migraines but they have disappeared since I have been on Femara so for me it has had the opposite effect. How long have you been taking Femara? I do know that for some headaches are an early SE that does disappear after a while, maybe because you are prone to the migraines anyway your SE headaches are going over the the top and becoming migraines. Have a word to your doc about it as he may be able to give you something to alleviate them. Good luck!
Love n hugs. Chrissy
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Hi, Ladies, Pulsatile tinnitus update. (Never thought at 53, I'd be writing a sentence like that...oh, don't get me started...)
So this pounding in my left ear has got most everyone confounded but at least we are ruling out some of the nasty causes. I had a doppler US which showed a normal carotid artery (no blockage.) Normal hearing tests. Cardiology check up, fine. Went to the onc for my biannual check up and she wants me to keep checking up on this but didn't sound that worried. Doesn't think there's a BC connection. Went back to the ENT. Physical exam of head and neck are normal but he now wants to do a head and neck MRI. He was very sweet and said he doesn't think we'll find anything bad (no metasteses) but given my hx, we need to check everything. I am pretty terrified of scans post dx (diagnosed during a routine mammogram) but will be a grown up and go, as I want to be sure I've been thorough. Or as he said, get rid of that sword hanging over my head (nice of him to understand.) I have a feeling that this is due to arthritis in my neck and tight muscles. I've been spending too much time at my desk and am tense lately. Or, husband has been doing some research and says that 1% of women get tinnitus as an SE of Femara. Once I've ruled out any bad reasons I'll relax and chalk it up to yet another wacky Femara SE and grin and bear it. It does drive me crazy sometimes, though.
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sgreenarch,
Thought I should let you know I had this problem about 2 years ago. I developed vertigo and tinnitus, just happened full on one night and I battled with the problem every day for over 9 months. I had an ENT examination, had 3 MRI's of Brain/Head/Neck but nothing showed.
After doing some internet research, I decided that maybe it could be the Femara, however all my medical people said NO, it couldn't be that. In the end I queried it with my oncologist for a 2nd time, and he finally relented and said "well none of the other tests showed anything, so maybe you can have a little break off it, and see what happens", and totally left it up to me on how I would handle it, moving forward.
I went off Femara for 6 weeks, and at the end of the 6 week period, I was feeling a little better, so then decided to go back on the Femara. Within a week the symptoms got worse again and were as bad as I had originally been experiencing. I again decided to go off the Femara, but this time I stayed off it for over 9 weeks, and at the end of that period, it certainly had improved.
I then went back on the Femara and continue to take it. Occasionally I still experience vertigo symptoms, however it hasn't been severe like 2 years ago. I my case I have no doubts that my problem was caused by the Femara.
Cherd
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I have been experiencing vertigo since starting Femera as well. I have had a head ct and it showed nothing....Now that I know that I don't have things lingering in my head I worry less and it seems to be bothering me less. I think stress makes it worse. I also experienced it with Tamoxefin and it eventually went away.
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Cherd and Micheleboots, thanks for your responses. As an aside, I think part of what goes on on these boards is simply validation. I know that there may be nothing I can do about this tinnitus, but it feels better to know that I'm not alone, crazy, etc. That others have had something similar. Of course we all need to check things out medically always (thank you BC) but if nothing is found, it just feels good to know there's a fellowship of all of us, listening to each other and supporting each other. So thanks.
I will go for the head and neck MRI but I will try not to be overly nervous. My theory is that this is Femara with a combination of muscle tightness and stress thrown in. I see that when I have a very busy (loud) day, when I'm moving around a lot, I notice the ear beating noise less. Very annoying sometimes, other times not. And I am forever aware of having gratitude for little problems like this:)
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Well I have been reading some of the posts in regards to Femara. Doesn't sound good at all with the side effects. I will be starting it in a few weeks. I had my implants recently removed and have been very sick prior to that so I did not want to start anything new. I just hope I can report that I am adjusting fine. Will keep you posted!
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Togetherness you will find that those that have problems post most........there are a lot of women who have almost no SEs from Femara and I'm one of them. Please don't borrow trouble till it knocks at you door, you may find you have very little problem with it after the initial getting used to it.
Good luck!
Love n hugs. Chrissy
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Prior to my BC dx, I was dx'd with four neurological vestibular disorders. At first they said it was "Atypical Meniere's Disease" which is a load of horse pucky, since there is no such thing. (My awesome ENT got really angry when he heard that - he said it was a "catch-all diagnosis" meaning that the doctor was tired of looking for answers. WOW!)
Anyway, I was very, VERY disabled by these conditions. I had very little balance, and quite a LOT of dizziness. I fell a lot. Some days I used a cane, some days I used a wheelchair. Once I got all the diagnoses sorted out (it took almost ten years), and learned how to treat or live with each of them, life got easier.
One of my strongest symptoms was tinnitus. It was so loud that it interfered with my hearing tests. I learned that there are HUNDREDS of causes of tinnitus... and much of the population has it. (I was also a bit OCD about it, since my background is in Speech and Hearing, and medical counseling.)
Learning to manage those conditions led to my symptoms decreasing considerably. I still have the tinnitus, but have learned (in the past 14 years) to ignore it.
I guess what I'm saying is that in the beginning I felt a bit dizzy from the Femara, and I was certain that if that was going to be a side effect, I would definitely be the one to get it bad. But after a few weeks, it went away. The tinnitus never worsened beyond the level I'm used to.
I think it's wonderful that we can come here and talk about our side effects and find comfort in the fact that we're not alone.
But newbies need to be VERY careful to understand that most women only post when they are having problems. Those who don't have SEs don't post. They are out living their lives.
I fought my MO for months, refusing to even consider taking a drug that could save my life... just because I'd been reading some of the horror stories here.
You can't possibly know in advance if you will have SEs until you try. You need to be brave and give it your best shot, and if it turns out you have SEs on one drug, you can ask to take a break, or even switch to another drug.
I gave Arimidex my best effort, and in the end, had to quit. Interestingly, Femara - while a sister drug to Arimidex - is stronger, yet has fewer documented SEs. I am determined to make this one work. So far it is.
If you are considering taking an AI, PLEASE don't base your decision on what you read on these threads. You may be one of the women who have very mild, or even NO SEs on a particular drug.
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Blessings, well said! Give it a try...we are all different!
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I too have very few side effects--as so many have been saying don't be afraid to give it a try!
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I've been on femara for nearly 6 years............it was extended from 5 years with my blessing....... I've been fine on this......ok I've had a couple of s/e, but nothing I can't cope with.........I'm still here.....and would rather take this drug than have the alternative.
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Blessings, you said it very well. I had problems with both Aromasin and Arimidex but Femara, after almost 3 months, is doing fine.
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I rarely post but am an avid reader, but I must chime in here. I too put off taking the Femara (Letrozole) for a couple of months due to all the adverse info I read here. Thanks to the encouragement and words of wisdom from chrissyb I finally set a date and started taking it. I have had a few minor se's but nothing to say that it has been a real problem. Thank you again chrissyb and I am so thankful that all your test so far have been good news in the mets department. You are such an inspiration to all of us and I am glad that I found this thread.
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Maltomlin- I agree, I'd rather take Femara than the alternative.
I've only been on Femara a short time and feeling well so far. I've experienced some muscle twitching but not sure if it's from the Femara. Anyone else experience involuntary muscle twitching?
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i wanted to add that since I retired and am able to get the amount of rest and exercise my body needs that my side effects have reduced dramatically.
I also went for acupuncture for a few months and that helped wondrously!! Massage is great, too!!
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