FEMARA

Shrek4

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Momine

Day, thank you so much. It really helps to have an idea of the point at which it is considered a problem.

Shrek4

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Momine

Day, sounds like you are in good hands. Thanks again for the specific info, it really helps.

calm

Day, I have hair thinning as well from letrozole--I was post menopausal when I started on Tamoxafin for 2 years and then letrozole for the last year--I never encountered hair loss until the letrozole--was wondering what the gerovital shampoo does: what is special about it--also what special properties does argan oil have for hair? Just curious--Ihave never heard of these products.

Shrek4

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calm

Day, thanks for the info--I am one of those who like more 'data'. this helps a lot.

Ktml101610

Thanks so much for all the posts regarding hair loss. Sounds like for most of you it doesn't get too bad and seems to abate over time. It's somewhat comforting (unfortunately) to know that the side effects I'm experiencing are 'normal' and your coping suggestions have been helpful. Also nice to hear about the supplements that many of you have mentioned being on (either for side effects or to combat the effect of femara on your body period)- no one suggested anything to me. Have an appt in a couple of wks with the onc, so will bring that up.

Shrek4

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lightandwind

I take MSM powder, drink a teaspoon a day in water. It strengthens my hair, my skin looks better, looks more healthy and I feel better. Really helps with the pain and fatigue from Femara. There are some articles I've read that say it also has anticancer effects, especially for bc. There's quite a lot of info on it out there, but so far no real evidence base on that. Still it has enough other benefits that I take it.     

sgreenarch

Hi, Ladies, I'm a bit new here. About a month on Femara. I thought I was having more muscular pains than usual, but I can handle that. I've noticed now that I am so so so cranky! This is harder to handle!

Irritable, moody, depressed, weepy. Feel like I'm going through puberty again, or having turbo charged PMS. Also more tired than usual. Shouldn't complain, as I normally have trouble sleeping, but now seems that I want to sleep all the time. Sleep 8 hours and wake up tired. Exercise isn't helping. This doesn't feel like a deep depression, just overall sluggish moodiness. Really don't want to go on anti-depressants as I am already taking meds for asthma, too. May even feel better if I hear from some of you that you've had this and that, yes, it does pass?

Thanks, weepy Shari

chrissyb

Hi Shari I think what you are feeling is the SE's of lack of estrogen.......yes we have all felt them unfortunately. If they are really too much for you to handle it may do you some good to ask for a little something to help lighten your mood. As for the sleeping all the time, I was having the same problem until I started taking the little just before bedtime and that seemed to alleviate that all encompassing tiredness somewhat.



Hoping you feel less of the effects as time goes by.



Love n hugs. Chrissy

Momine

Shari, yes, I had a bout of what you describe. It lasted 3-4 weeks and then I snapped out of it. By week 3, I had decided that if it did not lift on its own within another week, I was booking a shrink appointment. Maybe I scawed it

Hope you feel better soon.

artsee

Hello from sunny AZ where I am spending the next 2 months. Sure beats the Midwest right now.

As I've mentioned before, estrogen or lack of thereof can do bad things to our bodies. All the side effects can't always be blamed on Femara. It does prevent the production of estrogen, that we know for sure.

My Onco said to take Aleve or the generic form. I do not put too many other meds into my body, except for the important vitamins. If there is an issue in blood tests, then it takes too much elimination, to find the culprit. I have recorded some of these issues in a thread I started called. " Crawling in and out of that dark place". Sometimes things get extremely stressful and I think since the BC, chemo, rads.....our bodies will never be the same. The effects we will have do deal with, as best as we can. My five years on Femera...were up and down. The bones and joints are more like an 80 year old than a 64 year old, thinning hair and skin....lack of that estrogen that kept us ' glowing all our b-4 C lives.

But the alternative is not where I'd want to be just. Too much to do.......:-)

Hugs, Artsee

sgreenarch

Wow. Thank you! I'm experiencing that guilty feeling of being glad I'm not alone in this but still sorry that we are all going through this. So it sounds like I'm not insane...just drug addled. Relief. I had similar symptoms while on lupron. This actually pushed me to get an ooph so I could stop that nasty drug. Like lupron, Femara is now being used as a fertility drug. Just read this. Wonder if they are related. Think both work on the pituatary gland? These are strong meds...



Off to swim. Sometimes that helps. Thanks! Good wishes to my Femara friends! Shari

Linda-Ranching-in-the-mTns

When I first came to this thread, I was horrified by all the side effects descriptions -- until I realized that that the women who are NOT experiencing any side effects -- are probably out enjoying their lives and simply not posting here!

So -- to any New-bies to the drug -- and to these threads -- Not everyone experiences side effects -- and I have read many posts from women who had some side effects for a few months -- that seemed to lessen or even disappear within a fairly short amount of time.

I have only been on Letrozole (generic Femara) for a little over two months now.... and I am determined to NOT call every ache a 'side effect'. Our brains respond a great deal to our thoughts/fears -- and that we can worry ourselves much sicker than we need to be.

This is not to discount true (and sometimes debilitating) side effects that some women DO experience -- but if we add worry and fear into the mix, ANY side effects will be/seem worse -- aided by the toxic chemicals our brain will send through the blood stream in response to our fears.

My mantra so far is to 'Be Happy' and my aim is to just live life fully - sort of ignoring smallish aches and pains instead of helping them gain significance. If my ankles/feet hurt in some new way -- at least so far, I am claiming it only to be caused by yesterday's hike. (I hike 2-5 miles per day out here on the ranch over hill/dale and through forests). And I find that this 'ignoring' works pretty well! I keep on walking -- (maybe a bit slower or less far -- but still every single day) and the next day, or the next... I am finding that the 'new' pain has completely subsided -- and I feel perfectly normal again.

Don't know if these occasional/temporary aches/pains are related to the Letrozole or not. But I have 5 years of this drug ahead of me -- and I am not going to spend that 5 years anticipating problems that have not yet proved to be real!

And -- I VERY much appreciate the suggestions for treatment from those of you who have found relief... more tools in my tool box if I find I need them at some point in the future.

Diet/Exercise/Supplements can help with most side effects, too... so I am taking Vit D3, E, and glucosomine as well as a full-regimine of Natural vit/minerals... and at least so far, all my blood work is still in the very center of the healthy range, my skin/hair/nails are just fine -- and (only 3 months post BMX/DIEP recon and 2 months into Letrozole) I really feel amazingly great!

Linda

Eph3_12

Femara is a fertility drug???????????? How can that be? 

Shrek4

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Eph3_12

Well thanks for all that info Day.  Very interesting.

My onc has never run an estrone/estoradiol test on me.  I see her at the end of this month so I'm gonna ask her about it.  But I've had side effects so maybe she knows it's working because of that?!?!?!?!?! 

Shrek4

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HLB

I am not having SEs and I was worried that it wasn't working but my TM has gone from 116 to 33 in 6 months. Maybe its because I had already been in menopause for 8 years, idk.

jittersmom

I am on femera after being on Tamoxifen, and so far I feel better than when i was on Tamoxifen

I do have a question. Has anyone had a Reclast infusion for bone loss? i had one this week and had some strange side effects. The first night i woke up with the worst chills and headache, last night i sweated so much i had to chang my cloths! Today i feel ok. Just wondering if anyone had this happen?

Momine

Jitters, I have not had this drug, but was discussing it the other day with my doc. He said that you can get flu-like symptoms for a day or two, including high fever.

Shrek4

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HLB

Thank you Day :-D. Yes I'm very relieved esp for my parents. I hate how much they worry about this crappy disease.

sgreenarch

Want to thank you all for your responses.

To Linda, I completely agree with you. I think coping with this drug will depend a great deal with our attitude. Femara is my best shot (recent research shows that it beats the other AI's for lobular BC) so I am on it for the next 5 years, at least, whether i like it or not. I have decided that I can succomb to SE's and mope or try to live life, working around them. I don't want to minimize anyone's pain, but I find that a positive outlook helps to minimize the focus on all of these new problems. I exercise, eat well and take omega 3 and vitamin D3. Have better than avg bone density (so far.) 

Conversely, I do like coming to this list with questions. It is reassuring to find that many of these new aches can be attributed to Femara. I  understand that we can't diagnose virtually, and will check out any nagging symptoms that persist, but I welcome the real life descriptions that I can get here. The drug insert just doesn't do it for me. Day, I appreciate your info.

One nice SE that I hope lasts is that I am sleeping better on Femara than I have in years. Granted I am tired by 3pm, but at least I am sleeping well during the night. Have only been on F since mid January and I am seeing the hot flashes beginnning. Was happy to be rid of them after a year of intense ones following my ooph, but like everything else, they sure beat the alternative.

Thanks Ladies, good weekend. Shari

Shrek4

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Linda-Ranching-in-the-mTns

I think the thing to remember here is that with Femara/Letrozole -- just like everything else in BC -- each woman is different, and will react differently -- both physically and philosophically.

Day -- It sounds like you really had a very rough time on Femara... and I think that you are right, that you were definately one of those who "got hit hard with the SE".

And, like I said in my earlier post -- I know that some women ARE hit hard -- and have some very debilitating SEs.

But -- The very first time I visitied this thread -- I absolutely freaked out, reading about the long list of terrible side effects listed here.

So, I had a VERY LONG talk with my oncologist -- because there was no way I wanted this 'extremely detrimental' drug in my system.

However - my oncologist assured me that her patients have experienced many more side effects from Tamoxafin (like maybe 30% with severe side effects that had to be treated with more drugs or even switch to different anti-cancer drugs).

But she has only had 'a handful' of patients with Femara/Letrozole SEs that required treatment or switching... plus she says that for post-menopausal women, the Femara/Letrozole is proving to be MUCH more effective than the results of all the studies of women on Tamoxafin. 

So, I "determined" to be one of (as she described it) the 'vast majority' of women who have few-to-no side effects. My oncologist in no way told me that I must expect severe side effects or it meant that the meds weren't working. My cancer is 100% ER and 100% PR positive. So using Letrozole(Femara) should be extremly effective for me. 

And -- if mental attitude has anything to do with health -- which I firmly believe it does -- then I will also do my very best to maintain the most positive attitude possible, and not look for SEs where they don't exist. 

I am in no way saying that people who have difficult SEs have them because they unwittingly 'wish them' into being ... but I DO believe with all my heart that just as we can 'worry ourselves sick' -- we can conversely 'wish ourselves' into the very best frame of mind for the best health possible for us. 

So -- to all the newbies here (which is the reason I keep posting here) -- Just as everything else in bc -- our bodies and our cancers are all DIFFERENT. A few people (like Day) have a very adverse reaction to Femara/Letrozole. But (accordning to my oncologist) the vast majority of women who take Femara/Letrozole do NOT experience severe side effects... and some simple supplements like D3 and Vit E and glucosamine and lots of exercise (like daily walking) can greatly relieve the (usually minor) side effects that you might encounter. 

I am no expert. I only started taking Letrozole (generic Femara) December 1, 2012. But I promise to keep posting here from time to time -- to let you know if my 'power of positive thinking' is working for me! 

I only know that thinking happy and living/thinking healthy makes the experience of even the most tragic set-backs be less-bad. I was primary caretaker for my wonderful Dad through his cancer, and eventual death -- and both Dad and I found the humor and humanity and BEAUTY of life -- in every step of the way. His grace, strength, and humor taught me wonderful lessons -- which have helped me immensely in coping with my own dx of cancer last spring and all the subsequent treatments and surgeries (including a double mastectomy).

And YET -- Despite the recent loss of my father and my own BMX -- I can honestly say that the last year has been the BEST year of my entire life.

How can that be? It is because my mind is full of new concepts -- I now see life as a powerful POSITIVE force over-flowing with intense intimacy and beauty.

Since I have been able to find new strength and insight through my father's illness/death, and my own cancer -- I know that I can also deal with whatever else is coming. 

At the very least, a positive outlook certainly can't hurt -- and creates a space in which we can live the best quality of life possible during occasionally trying times. I strongly believe that much of our pain and other symptoms are caused by our worrying them into existence. 

So, Yes, a few women will have severe side effects with Femara/Letrozole -- just like some people are allergic even to peanuts or bee-stings. Day, perhaps your thyroid meds or thyroid condition contributed to the severity of your Femara SEs, too. Some people are simply more sensitive to some meds than others. All bodies are not created from the same mold.

But I would sure hate for women new to the drug (and to these threads) to assume that unless they have terribly-debilitating and life-interrupting reactions -- that the drugs aren't working: That the worst side effects are inevitable.

My oncologist promises that no such thing is true.... for the 'vast majority of women.'

And I (for one) plan to be in the very-healthiest/least-affected group of that "vast majority"!

Best of luck to each and every one here!

Linda

Shrek4

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Momine

Day, lol on the unicorns and I agree. I do try to look for the bright side whenever possible and it does help me. But when I have been hit by really crippling SEs, in my case from the taxotere, no amount of positive thinking could drag me out of bed.