FEMARA

NatureGal

Artsee - good luck to you on Friday. I know the feeling!

Blessings2011

Email to my MO yesterday:

Hi, Dr B!

Just confirming that I took my first Letrozole today... so far, so good!

No side effects!!! :-D

Reply from MO yesterday:

One day down !!!! And the crowd goes wild.

Keep up the faith.

Dr B

micheleboots

Blessings. Good job. You could be like me. I have no major problems on Letrozole. Keep up the good work.

Michele

sbab49

Blessings, continued good results for you. I put off taking Letrozole for 7 weeks due to all the horrible stories I have read. I finally convinced myself that I needed to give it a try and set a date. It has been 7 weeks and other than bothersome hot flashes not too bad. I hope it continues. MO assured me hot flashes will lessen in time, if not they are at least tolerable. She was not happy that I waited so long but pleased that I finally got on board. I wish all of us doing hormonal therapy the best of luck, and for those who have misgivings about taking it, it may surprise you and not be so bad. I am glad I decided to at least try. I have to say so far so good

BookWoman

I have been on it for about 6 months now. I usually have one or two hot flashes a day and some days I am a little achy--especially when I get up after sitting for a while. It really hasn't been bad at all for me. I haven't figured out why some days I am achy and other days not so much--wonder if it could be connected to what I eat?

Blessings2011

Thanks, micheleboots and sbab49!!!

BookWoman - You mentioned joint pain and your diet... I had pretty severe fibromyalgia for ten years. Then I went on a medically-supervised fast for four months, and soon noticed that my fibro pain almost disappeared.

I found out that the all the products were gluten-free... I am still gluten-free, but the joint pain came back full force on the Anastrozole.

Also, are there days when you move more than others? My MO said to make sure I keep moving every day, no matter what. Please post if you discover any connection!

cakes

Hi Ladies. I just started Femara (letrozole) 2 days ago and I will be on it for 10 yrs. I was told to take it every other day for 2 weeks at night with 8 oz of water then every night. If I get hot flashes I am to take Benadryl. I am hopeful I will follow in micheleboots footsteps and have no SE.

Keeping my fingers crossed.

Eph3_12

Interesting-titration. I just was told to bounce right in, no instructions as to time of day, etc. Eventually worked around to night time which is best for me. Good Luck cakes. I'm fairly SE free too

beergirl

Aussieched, sorry so long to reply. I don't check the boards often. I really don't know why my onc wants me to take femara for 7, or maybe 10 years. She wanted to switch me to tamoxifen at one point, but I said no because one of the main side effects of tamox is blood clots. My mom died from a blood clot when she was only 48. My onc also wanted me to take Prozac. I told her I wasn't depressed. She sent me to a psych who also said I was not depressed. My onc says my joint pain is caused by femara. I think it is arthritis, which she says I do not have. My primary care doc told me last week that I do have arthritis. Hummm, after reading over this, I think I am going to consider finding a new oncologist.

SusanHG123

Have not posted much. Am back on Femara after a break and being on amerason for a few months a break and back on this. Took breaks due to side effects. My MO wants me to try again because during this time my EF was dropping to the low of 35 and I was also experiencing SE of there. But, after 4 days the back and joint pain have returned in full force. I take Effexor ER for hot flashes. Sort of works. My MO and I plugged the numbers into the "magic" calculator last week and the drugs do make a difference-but I asked him at what cost. He was really unable to answer.

Now that is is cooler in NM and I am breathing better am going to try to walk again. Maybe that will help.

susan

Eph3_12

youlooklike-think I'd switch oncs too.

artsee

Another 6 months down and 6 to more added. He gave me a very thourrogh exam this time. Checked more lymph nodes than ever before. Must be because I'm off of the AI now.

The Gluten free diet definitely has taken away the pain from several people I know. Wheat is just plain bad I think.

LKSHER

I started on letrazole last night. Terrified of all the side effects I read about here or that it won't work or just everything. Port out on Friday and implants in March.

Love reading the stories about no side effects and long term survival with positive lymph nodes. I am hoping my low oncotype is a good sign for me. I come to this site to find success stories and knowledge. I plan to come back and help others like me in the future. Some of the ladies who do that here are so kind and wonderful.

Wish I could just not feel afraid and just be happy that treatment is over and look forward to getting my chest back to looking more like me.

Eph3_12

LKSHER, welcome. Hopefully, you be one of the MANY who take this pill with little to no SE. I am certain that there are thousands of women out there taking this daily who have no problems and that's one of the reasons we don't hear/know about them, because there are no problems. I count myself among the lucky ones-very little side effects & I feel it is working, because I keeping gaining weight (the AI's job is to decrease estrogen. Since we are all post-menopausal that means either the ovaries are no longer producing or we don't have any ovaries-my scenario. So the body makes estrogen out of stored fat-my body is a great storage container unfortunately) that's my main SE I guess.

gardengumby

LKSHER - there are a lot of women who have no side-effects. Don't worry too much about the negatives, and concentrate on the positives. This stuff helps beat back cancer. That's the BEST side effect there is. You didn't mention what your onco-score is. Glad to hear that it's good, though.

Gluten free helps stave off the joint and muscle pain - as does walking. Movement in general. The longer you sit in one position, the harder it is to move. Maybe not for everyone, but that's certainly the case for me. Some of us take a bunch of supplements, some not so much. But some, like Eph and Crissy don't really have SE's at all. And like Eph said, most of the people who have zero side-effects don't tend to post on this thread - they just go about their lives.

My onc started me on tamoxifen - I was supposed to do 2.5 years on each - but after 6 mos on tamoxifen I had a DVT and multiple pulmonary embolisms in both lungs.... so no more tamoxifen for me and I went onto letrozole for 5 years. This Thursday will be 2 years down and 3 more to go.

Sorry you had to join the 3C's (crappy cancer club), but glad to "meet" you.

artsee

We are post menopausal but our arenal glands and the pituarary gland continues to produce estrogen. Who knew???

LKSHER

Hi, Ladies. Thank you for all your kindness and support. My oncotype was 15 to answer GardenGumby's question. I took the letrazole again tonight. I didn't feel any different today, so that's good.

corky60

Ummm...I don't think the pituitary glad produces estrogen. From Discovery Fit & Health:

"Specifically, your pituitary gland manufactures eight different types of hormones: thyroid stimulating hormone (TSH), luteinising hormone (LH), follicle stimulating hormone (FSH), prolactin, growth hormone, adrenocorticotropic hormone (ACTH), antidiuretic hormone (ADH), and oxytocin."

artsee

So I should have said the Pituitary gland controls the activity of other 'hormone' producing glands.....one being the adrenals...and many more!

Blessings2011

Well, poop. (No pun intended....)

Have been on Femara for one week... and about 72 hours after my first one, I started feeling queasy, and now have had some, er, digestive pyrotechnics (diarrhea) for the past few days...(sorry if that's TMI )

Am also having some weird hip pain and knee pain that wasn't there with Anastrozole.

So here's the gazillion dollar question: how do we know what's a SE, and what's "just life?"

For example, I might have a regular old stomach bug. This queasiness may disappear on its own, and maybe I can stop the Immodium. I guess the only way to tell is to keep taking the Femara and see if I feel better soon.

We've been moving furniture (I've helped DH hoist a bunch of heavy stuff into the bed of the truck for donations...) so perhaps this weird hip/knee pain is a one-time-only event... And the answer might be to take it easy for a while and see if the pain goes away.

It's just really easy to blame everything on the drug...

I am proud of myself for actually getting my fat butt in motion. I've walked up and down four flights of stairs each time I have an appointment at the hospital. And even though I don't do regular exercise right now, I do wear my pedometer, and I'm averaging about 14,000 steps a day. That number used to be 1500.

Has anyone else had digestive disturbances on Femara?

Momine

Blessings, that is a seriously good job on the steps walked. Brava! I don't remember any stomach issues, but I take probiotics religiously and that may have saved me from such problems. Also, my docs swear, SWEAR, that letrozole SEs take several weeks to emerge. I remain a bit dubious about that, but that is what they claim.

Blessings2011

Thanks, Momine! But I sure didn't get those steps in today...

With my sweet, elderly little mom, whenever they gave her a new drug, we used to say "72 hours in, 72 hours out" - meaning that she reacted horribly to all meds, and we'd always see the evidence of that in three days. Then it would take three days to clear her system.

But with the AIs, I agree... unless you are terribly allergic to some ingredient, I don't think those big SEs would show up right away.

Like you, I swear by probiotics and take them every day.

BayouBabe

Blessings - When I first started Femara, I had diarrhea on and off for the first month. No problems after that. Hang in there, hopefully it will go away.

chrissyb

Blessings I too had the diarrhea but it didn't last long.......I have heard that it can go either way to begin with so hopefully it will settle soon.

Love n hugs, Chrissy

007_Kara

Coming up on my 2 months on Femara ... starting to feel the aches quite a bit now, especially arches and elbows.

Any supplements work best?? I started with Fish Oil supplements.

chrissyb

Kara I have found that a lot of the aches and pains are due to inflammation so I would suggest some natural anti inflammatories such as Curcumin and Boswellia. I also have arthritis and these help a lot with that.

Hope they work for you.

Love n hugs. Chrissy

007_Kara

@ChrissyB - Looks like I need a trip to Sprouts tomorrow to check out new supplements.

Blessings2011

Thanks, BayouBabe and chrissyb!!! Luckily, I have a Costco-sized bottle of Immodium....

gilbert

I haven't started any treatment yet. I have been prescribed Letrozole. After reading about all the side effects don't know if I want to. I'm mad at the onc. for instilling fear into me about the cancer coming back, telling the side effects are minimal. I'm already did my time with hot flashes and am stating to already have bone loss and joint pain. Why inflict more on my body if I don't have to. I don't know what to do. It's so easy for a man doc to say it 's what he would do if it would bring the chances of cancer coming back, and then he tells you the % of effectiveness is really rather low. I'm going to do radiation and am praying for real direction on the letrozole.

cakes

gilbert - I started Letrozole last week and I was told by my female onc to take it every other day for 2 weeks then everyday. Also, take it at night with 8 oz of water. So far no SE but I will keep you posted. After rads I felt like my "safety net" was gone; I knew the rads were killing the cancer cells so I was very ready to start the Letrozole the keep killing any cancer left in my body. As you can read on this thread, everyone has had different experiences. Keep doing your research and follow your instincts.

Regarding the bone loss, I had a Reclast infusion which didn't go very well. I have a reaction and was sick for 3 days. Again, this doesn't happen to everyone and I just won't have the Reclast again. I worry about my bones as I have osteopenia in my hips so I take calcium regularly to help the Reclast do it's job.

I hope I have helped......if even a little bit.