FEMARA

lahela

Do the hot flashes ever subside? I'm >>>this<<< close to stopping Femara because of them. I wake up six to eight times a night and frequently burst into tears because I'm so desperate for sleep, anything slightly strenuous sets them off during the day (even shopping is a killer), I can't spend more than five minutes in the kitchen (I'm a passionate cook and foodblogger!) and am absolutely dreading summer. I get a hot flash just from thinking about them! I tried Effexor and had a terrible reaction to it and I really want to avoid taking yet another medication to treat a SE of a different medication. I know the ooph contributes, but they are 10 times worse on Femara than they were on Tamoxifen, even after the ooph.

wintersocks

I too got horrid vertigo on 2 occasions (that lasted a while) and this was at least 3 months after staring Femara.. 

Tomboy

....does it appen when you drive?!?

chrissyb

Lahela, the hot flashes for me have almost disappeared.  They were truly terrible to start and like you I could spend but a few minutes in the kitchen.  I made sure I was under a fan or in airconditioning most of the time and drinking heaps of cooled water (not cold) seemed to help a little.

Kathec are you asking if I got the vertigo while driving?  When it was at it's worst I couldn't drive but once that part settled then even though I would walk into walls I could drive just fine.

micheleboots

I got virtigo about a year after starting tamoxefin...had all the tests and they ruled it as stress.  When I was stressed it was worse.  A vicous cycle of stress and virtigo.  Then it went away.  Then about two or three months after I started letrazole it popped its ugly head back into my life.   Had all the tests again and they showed nothing.  I blame it on the letrazole.  It's true I wish the frofessionals would listen to us.  This many ladies complaining of virtigo can' be wrong.

dventi

Thanks for feeback on vertigo... I love you gals!!~! Okay Ladies,  here we go... just came back from MO.. told him about vertigo.. I. had the document that says Letrozole causes dizziness and the words out of his mouth "It is not caused by the drug"... I said, "It says it right here"...He said, "in clinical trials it is not shown as an SE".   Says " don't take Letrozole for 1 week and see what happens...also said may change my drug"

Next step - refers me to my primary care physician

Soooooooooooooooo frustrating.... going to see my acunpuncturist tomorrow... then on to primary care if no results

chrissyb

Dventi just reinforces what I said earlier about them only reading what big Pharma gives them and results of trials that are financed by big Pharma............I'm with you on the frustration though.  Here's hoping you get a bit more joy from primary care.

Love n hugs.   Chrissy

SusanHG123

Hi Ladies,

I have taken melatonin for years prior to BC and did not have problems with dreams until I started the oral estrogen blockers or suckers. I have had vivid dreams will all of them. So vivid-some nights I actually get up and tell myself it was not real. 

My hair is really thinning on Femara. And I am worried it will more than thin. The hair on my arms is falling out-which it did prior to each time my hair fell out-this has happened 3 times. The hair on my head is getting very thin, the male pattern baldness is getting worse and worse. I know I should not gripe about this very minor SE when I have so many more-but it is like-just give me a little break here. Let me keep my hair finally. I have the bone, joint, and muscle pain. Weight gain. Just let me have some hair!!!!!

Hugs 

Susan

chrissyb

Susan I hear you on the thin hair but take heart, going from what happened to me, it doesn't completely go and should return reasonably quickly.  Oh so frustrating for you right now.

Love n hugs.   Chrissy

Blessings2011

SORRY - BIG LONG HONKIN' POST...

Ladies.... when you are reporting these vertigo SEs to your docs, make sure you are able to be very distinct as to what you are experiencing.

Dizziness can also be described as unsteadiness, light-headedness, "swimmy" feeling, off-balanced, inability to stand up straight, etc.

Vertigo is the illusion of movement.... the most common is the sensation is that the room is spinning around you - like you are sitting in the middle of a skating rink, and eveything is going around and around. Or it might be over and over, like being stuck in a hamster wheel. This is most commonly referred to as rotary vertigo.

Being able to describe your symptoms in detail helps to give the docs a better idea of what to look for.

I only had one horrid vertigo attack on Femara, but then again, I have four distinct vestibular disorders that cause not only dizziness, but vertigo, and I don't believe it was the AI that caused it.

Please forgive me - brain fog - I may have discussed this before - but lots of us get something called BPPV: Benign Paroxysmal Positional Vertigo. Basically, there are rocks in our heads. Seriously. Inside the inner ear, there are fine fluid filled tubes that have hair cells that carry sound signals to the brain. The older we get, the likelihood that tiny crystals will form in this fluid. If a crystal happens to get stuck in one of the fluid-filled canals, then you get a big dose of vertigo.

The doc can assess this by doing a quick test - the Dix-Hallpike - in which you lie back on a table and turn your head quickly. The doc looks for an eye movement called nystagmus.... kind of like what your eyes would look like if they were watching each car on a long train go by. Depending on what the movements look like, the doc can determine which ear has the lodged crystal.

To cure this, you can do something called the Epley maneuver.... again, a series of exercises where you lay back and turn your head to the side. You can be taught to do these at home.

The reason I mention this is that BPPV is so darn common in the general population. It's not necessarily the Femara.

If it's a SE of dizziness, I would imagine the symptoms would come and go. You might feel very unsteady, you may feel like you always have mild car-sickness. A vertigo attack can leave you on the floor, unable to move, and very sick.

Depending on what other drugs you take, there is an OTC drug called meclizine which is an anti-drowsy motion sickness drug (like Dramamine).  It does have side effects of its own - one being urinary retention - so it's not for everyone. But it does relieve the nausea and vomiting from dizziness and vertigo. There are also stronger meds for this including suppositories and topical cream that is rubbed into the wrist.

(My undergrad degree was in Audiology... so I do blather on about this stuff.... ) 

lahela

Chrissy, thanks for the feedback.

Vertigo is listed as a frequent SE on the info sheet that comes in my box of Swiss-made letrozole. How can it be an accepted SE in one country and not in another?!

lassie11

Thanks for the explanation Blessing. I wondered about dizziness and vertigo. That means that I have not had vertigo but occasionally have dizziness - not enough to get excited though.

dventi

Blessings - thank you for all of the great info....!

Lahela - now that is soooo interesting that the SE sheet from Switzerland says vertigo is a frequent SE but not from the states.  I would love to hear the explanation for that!! 

SusanHG123

Blessings-blather on. I sure do when it is nursing related. 

And listed in other countries? Figures. FDA is so so....

Chrissy. Thanks for the hair info. I just looked @ a picture from Christmas and I had a lot more hair. I was on tamox then. Switched in Feb and have had massive hair loss. I have told my MO these drugs were invented or finalized by some snippy PharmD who hates his/her mother. Otherwise would have found at least one good SE-weight loss, glowing skin, perfect personality. None of which I have currently. Or, actually ever. Hmmm. 

Tomboy

....it was funny, sort of. i had to ask myself last night if i was getting dizzy from femara, but no, a couple more seconds proved it was an earthquake! it was the long and rolling kind, and though it is kind of exciting, the scaryness wins out! this was the third one i could feel in two weeks, and they are all happening at night. so when evever i feel the first one, i am just kind of on alert. when i feel the second one, i just make sure that things that could get damaged are safe. on the third one, i put together a bag with sturdy clothes and strong shoes, water, flashlight, pillls, jewelry and cash, and computer and phone by the bed by the door. easy to find on my way out the house! brrrr! scary...our house is two stories, smallish, and we live upstairs from our little workshop, we are both artists. it is stick built, with no internal walls, so it really does do some swaying! like a hammock. but i think that that is why it IS 90 years old! heres to a few more years!

BigDBeatingBigC

kathec, good luck to you!  Sounds like you are prepared, just in case you experience a big one.  That is good.  I have never felt an earthquake, here we worry about tornadoes.  Have not had one of those come close - yet, but did go through a hurricane when I lived in Houston many years ago.  That was scarry enough. 

chrissyb

OMG! Kathec do stay safe!  I've not been through an earthquake but I did experience a cyclone (I think you call them hurricane) when my children were young and that is such an eerie thing and very scary too.  It sure sounds like you are well organised.

Tammy_M43

Kathec, take comfort that older places are usually made to last...... I've often noticed your avatar, is it one of your artworks?

Tomboy

it is one of em. i was feeling very strong one day, and asked my man to take a pic of my back, and so he did, and i painted it from that. some of my friends thought it was weird to paint a self portrait from behind- and then they grew to really like it! my friend sally had it for about 5 years, till she passed from lung ca, so i inherited it back. i was 45 then, am 54 now. i see some ladies change their avatar, so maybe another one soon, if i can figure it out, and then take the time to do it!

thank you, chrissyb! i will try to stay safe as possible. now, cyclones and hurricans, now that is scary to me!

Momine

Kathec, I didn't realize you were a painter. You are good!

Blessings2011

kathec - 

AmyQ

Ladies, I am so happy to check in and read some of these recent conversations.  Up to this point, I didn't think I was experiencing any SE's from Femara but now I'm not so sure.  Frankly, if my experiences are SE's I'm so relived...I kept thinking progression in bones, brain etc but now looking back I really think my general malaise is SE. Yippee, I'm so happy it's probably SE's and not progression!!

Thanks!

Amy

dventi

So Im doing my own clinical study --lol!   Since I had the bad incident of vertigo, I stopped taking Letrazole (4 days now) . MO agreed to see what happens.... Hmmmmm no vertigo.......

So now, Im very scared to start it up again as I work and am afraid this will happen while in transit.    I want to have a discussion with MO and will ask him the following questions before making my decision on what to do next

Looking for your input as well as what I should be asking MO.    Thank you!!

1) Are there Other alternatives to Letrazole - can dosage be reduced?

2) If I don't take Letrazole what is the % of recurrence. 

3) If I do take Letrzole,  how does it increase my survival rate?

Thank you !!

Eph3_12

dventi, Jacee took 1/2 doses of the pill daily for quite a while.  I'm not sure what she's doing these days.  Can't answer the other 2 for you-doc would be who should address those with & in my opinion should have already done that.

BigDBeatingBigC

dventi, I was told that without Letrazole my chance of recurrence is 16% - with Letrazole, it goes down to 8% so no question it reduces the chance of recurrence significantly.  I am not having any SE's so far, but have been on it less than two months.  Your MO should most definitely answer those questions for you.  I have no idea about lowering the dose or what effect that can have on percentage of recurrence.  Let us know what your doc says.

lahela

dventi, ask your MO about arimidex or aromazin - mine said they were my alternatives to letrozole.

pabbie

Dventi: I'm seeing my surgeon today and will ask her about my % for BC to return without the Femara. But I'm thinking all of our recurrence numbers could be different. For me, my MO called taking Femara "Insurance."

I wouldn't suggest cutting the pill in half. I did that with Tamoxifen a lot of my five years starting in 2008 and could be one of the reasons I had a recurrence this year.

It looks like you are working and taking transit., so I can definately see your concern. Take care.

dventi

Ladies, thanks for you input!! 

Just an update on the next steps with Femara.. My MO called me (how nice!) to see how I was doing.  Told him no vertigo and I went to yoga and did "downward facing dog" without experiencing vertigo (LOL) . 

He said if I do not take the aromatase inhibitor, chance of recurrence is 15% and drops to 7% with drug.  Wants me to stay off drug until Monday, see how I feel and then will suggest another AI.   Does not want to reduce dosage of femara .

Blessings2011

Stats according to my MO:

- My chance of recurrence after BMX was less than 1%. (VERY tiny IDC tumors identified in biopsies, but were strangely missing in final pathology report....)

- Losing weight reduced my risk by 23%.

-Taking the AI further reduced my risk by 50%.

But as she keeps reminding me, my risk is NOT ZERO PERCENT!!! So I continue to do the things I know may keep me healthier in the long run.

p.s. - In case you were wondering, there is no such thing as "zero percent" risk of recurrence. It's just a fact of life. On the other hand, I believe I am cancer free as of December 5, 2011, and I plan to stay that way until I pass from extreme old age!!!

dventi

Blessings20 -  those are great stats!   I see in your profile that you changed from Arimidex to Femara..  What was the reason for that?  Just curious... Thanks