FEMARA

Eph3_12

Merry Christmas fellow Femara-ites. Wishing you a 2015 filled with less side effects & more fun!

chrissyb

Merry Christmas girls!! Hope you are having a wonderful day spent with family and friends. May your New Year be filled with love, laughter and fewer side effects. Take care and be safe!

Love n hugs. Chrissy

Tammy_M43

Merry Christmas!! Have fun....I know I am!

enjoyevrymoment

Back and a bit less svelte (!) but just went for a big walk, I brought all the goodies in to work the day after Christmas. Us Femara girls cannot get away with that stuff I will vouch for that. Hope you all have a happy New Year!

ktab96

After 3.5 years, my Onc took me off of Femara. I was doing quite well but during the last year (especially the last 6 months) the side effects became intolerable. I had am having trouble walking and had to give up my Zumba, walking/running. Christmas shopping was a bear. I also developed the beginning of trigger finger on my pinkie. The pain in my feet, knees and pinkie was starting to keep me up at night. Anyway my Onc took me off of it. She will prescribe something else depending on how I feel in the next three months. She said it will take 30-60 days for it to clear my system. Hopefully I will be able to get back to my normal routine.

Depending on how I feel after 3 months, she may put me on Anastrozole. If my joints are still hurting, she will put me on Tomoxifin. My initial treatment plan was 5 yrs Femara, then 5 yrs Tomoxifin since my Onco Score above 10% without Femara.

Oh boy, I was doing so well up until the last six months (sigh)

Tammy_M43

Ktab96, 3.5 years was a great start. I hope the other meds are kinder to you!

ktab96

Thank you Tammy! My Onc said the same thing and was pleased I was able to stay on it as long as I did. I hope I will be able to tolerate the side effects from what is eventually prescribed to me.

IntheATL2014

I think I posted in Nov. when my MO wanted to switch me from Tamox. to letrozole. My first cancer (Feb), on the left, was ER -. The right side was ER+ (Oct). I told her I wanted to do more research before I switched. I have been tolerating Tamox. ok. I read comparative and longitudinal studies between the 2 - effectiveness over time and side effects studies as well. I was very unhappy with how common the really rotten side effects of femara/letrozole were. I am 64, I had early, small, stage-one cancers on each side (DCIS and IDC). No chemo or rads needed. The long term risk-of-future-cancer differential is not so great - just some percentage points. To me, quality of life is much more important than some percentage points. I worry about being physically miserable for years, just to shave points. Not worth it to me.

I also talked to my general practitioner, PS, and pharmacist to get their ideas and anecdotals. Their opinions were similar, that I should try it out and see what happens. I chose not to change over until I heal from my exchange surgery (5 days ago).

I am still very hesitant about switching. I could have side effects that could seriously compromise my quality of life and that it could take a very long time for the SEs to go away after stopping.

Also, my pharmacy carries letrozole made by Breckenridge pharmaceuticals. I have seen some postings about different SEs depending on the manufacturer.

Any thoughts or opinions about my deep reluctance?

fizzdon52

I don't get how you can knock it until you try it? Some people get hardly any side effects from Femara/Letrozole. I have been on it for over 6 months now. I get stiffness in some of my joints made worse by cold weather. Now that it is summer over here (New Zealand) that stiffness in my joints has gone. The other side effects I get are minor headaches, although I am now thinking I need new glasses. From what I have read Aromatase Inhibitors are way better for my type of cancer so I am glad I am taking it. I guess I have also decided that a lesser quality of life is better than not having a life due to this horrible disease and I will do everything I can to live as long as possible.

LindaE54

IntheAlt - My experience with Femara is much easier than with Tamoxifen.  Much less SEs with Femara.  Of course, it varies from one person to another. 

Linda

GrandmaV

IntheAtl- I agree with your doctors and pharmacist, Try it out and see what happens. 

IntheATL2014

Thank you all for your thoughts and perspectives and encouragement My MO's office called me yesterday, still disturbed that I have not switched yet. We discussed. I have my 2 week followup with my PS on Tues re:implant exchange. I am recovering well, so far,so I think it is time to make the switch and pray. I am glad to read that some people are doing well on Femara/letrozole. I hope I will be one of them.

Tomboy

I think that is a good idea. It sounds like you were ON tamoxifen, when your second, er positive tumor was found. That makes me think your body was not a metabolizer of tamoxifen, rendering it useless to you. And since your body did produce a second cancer,I can understand the oncologists' alarm. I hope femara is kind to you!

Joan811

i am an occasional visitor here - mostly because I am doing ok with the SEs.

I started on Anastrozole (arimidex) and got immediate joint pain and arthritic growths in hands. Even after switching to letrozole ( femara) no relief in the hands.

It is 3 years now and I have stiff joints and tinnitus. I do have to say that SEs level off over time. I have a statin prescribed, and that seems to blow the SEs out of proportion. It adds muscle pain to the joint pain and compounds mental processing issues.

I am trying to hang in there with the new statin until my SEs level off. It isnt easy.

Overall I do well and these SEs do not keep me from working or traveling. I am 66 and do best if I am active. I would suggest if SEs are tolerable to give it 2-4 weeks.

Lately I am not sleeping well and am taking more pain meds. Could be I need a better diet.

Joan

savgigi

Hi, Joan811. I also found problems with the combination of a statin and letrozole. I was having muscle pain that would wake me at night. I found if I take the letrozole in the morning and the statin at night, I had no more muscle pain. I still have some stiffness, especially in the cold weather. But most SEs are pretty much gone once I started taking my statin at a different time.

pgc091

Hi everyone. I have come over several times, but I read alot today that i can relate too.  I was given TCH in 2012 and went on herceptin every 3 wks with 2.5 of letrozole daily.  It was good to read that letrozole se come and go. I have been blaming vertigo on my blood pressure meds. I am afraid to go far because i never know when the vertigo will happen. I even got a walker. Does anyone else have this problem: I walk into kitchen take lids to pans out of dishwasher walk 5-6 steps to where they belong and suddenly I am shaking so bad lids are clanging, but i cant do anything till it passes. sometimes I sit and it will go away if i feel it coming on, but if not have to be carefully i could turn chair ovrr. i tell my cardiologist& onc, they just look at me. im 67 and just starting to enjoy being retired. Never dreamed id like being housewife. Glad I found this thread. Oh, I guess the hair loss hasnt hit me yet. i just got my hair cut for 2nd time since TCH and this time layered because it was so thick. Hope everyone has a good day. :-)

IntheATL2014

Again, thanks to all for your thoughts and support. I started letrozole last Sat. night. So far so good. Did not anticipate any immediate SEs anyway. Hope none sneak up on me over time.

I am 15 days post-exchange. First drain came out last Tues. Second one Tues of this week, along with Tegaderm bandaging and surgical tape. I am flying free now. Waiting for implants and FG to settle in and see how things are looking down the road. It will be a month before I see the PS - the longest time span between visits in a year! Is it possible that BC might be in my rear view mirror soon? Seems like it has been in front of me 24/7 since last Jan.

dventi

"@pgc091"- I have had intermittent bouts of vertigo- when I mentioned to MO - he said he never heard of anyone getting vertigo -- Oh really? The bottle says "don't operate machinery, may cause dizziness" . If you take it at nite maybe that will help - that's what I do . I also see an acupuncturist to help with symptoms too

---

ps . anyone get a funny taste in their mouth from femara?

canuck46

Just got back from the pharmacy after picking up my rx for letrozole.  The pharmacist handed me 3 separate bottles (30 each) and said they are 3 different manufacturers!!!  I almost started to cry.  I asked why couldn't they just stick with one manufacturer as last time I was switched it caused more SE's.  He said unfortunately the decision is made at head office about which products are purchased and I am certain it is a monetary decision.  So now I will try the three different scripts and keep track of which has the least SE's!!! Hopefully it won't add to the ones I already deal with.  Has this happened to any one else?  This is a large national chain drugstore.  Maybe my SE's will disappear completely - trying to be positive!!!!!

 

dventi

@canuck - I had same experience with a large chain. I request the mfg when I order the script and they always get me the one I want. I'm doing ok (usual tolerable symptoms) with the mfg Roxane- they have to call their distributor to get what you want. Let us know which mfg you do well with.

canuck46

dventi - Thanks, I will keep track for the next 3 months and see what happens.  I will then try to request the one with the least SE's.  Maybe I will find that they are all SE free!!!!! ( A girl can hope).

Hugs, Mar

 

MsPharoah

Savgigi, I wanted to thank you for your post about the combination of statins and Letrozole and that taking these two medications at the same time could cause increased muscle and joint pain. Like you, I was taking my statin and Letrozole in the morning. Changed that up about a week ago....letrozole in the morning, statin at night and I am much, much improved!!!! Thank you so much for sharing this information about your experience. I am not sure if it will help others, but it sure helped me. I am very thankful for these threads and follow this one every day.

MsP

savgigi

MsP, I am delighted that my experience helped you. Hooray for this board and the ability to share information!

gemmafromlondon

That is an interesting research project for you! It would be good to know if one manufacturer has made a better job of it than others. Keep us posted. All the best

dventi

has anyone had this S/E on femara? funny taste in mouth? All of a sudden

Thank you!

smrlvr

hi, ladies. I have been reading your posts for quite a while, trying to learn about the letrozole experience. Imhave a question for you. Imwas on tamoxifen until the first week of December. I had a hysterectomy in December and was advised by MO to stop taking it one week before the surgery. While on tamoxifen I had joint pain, but developed a pain in my right knee in the weeks before the surgery. When I went off the tamoxifen my pain went away and I felt great. After the hysterectomy I started letrozole and within a week the knee pain was back. It is only in my right knee. I have other aches, but this one is the worst. I am fairly active too. Have any of you had aches in one joint but not the other? I am beginning to feel like this is more than just SE of letrozole. Getting very scared. I am only 8 months out of active treatment. I also take supplements that I also stopped taking the week before hysterectomy, but I doubt any of them can cause this pain.

gemmafromlondon

Although I had slight knee pain in one knee due to knock on effects of a five year ago foot injury, neoadjuvant letrozole for three months prior to surgery turned it into agony - couldn't even turn over in bed or straighten my knee. Doc sent me for X-ray and said it showed osteo-arthritis and prescribed tons of pain killers. Came off letrozole at surgery twe months ago and whilst awaiting rads, and the pain has largely gone. I had other severe side effects of letrozole - constant hot flashes with drenching sweats blood pressure through the roof and racing heart so don't want to restart despite the bs insisting I should. Your knee pain may be due to something entirely different - who can say?!

KiwiCatMom

Dventi--I do get a strange taste in my mouth from time to time. Hard to describe, and I keep my mouth really clean because I have ONJ. But it's almost like a rotten taste? Kind of sour?

Gemma and Smrlvr - knee pain is the most common side effect of letrozole. And hot flashes. My hot flashes have gotten less frequent and less "violent", but the first year was pretty horrific. And night sweats. I'd be concerned about the blood pressure; mine has crept up a bit, but not bad. I take Celebrex for the knee/joint pain. I have osteoarthritis in my left knee and a bit in my right knee. I've tried other pain relief and the celebrex works for me. So keep trying until you find something that works for you. Also, I know some have switched to another AI due to SEs, and they've done better on the other one. So talk to your MO - you don't have to live with this pain. I have Stage IV and bone mets and all the bone pain I've felt is SEs, not mets (confirmed by scans). So keep after your doctors on this! Took me 4 tries to get something that worked.

Good luck,

Terre

dventi

@Terre.. Thanks.. yes same for me... kind of sour taste in mouth on and off. Thanks for sanity check!

Also having dental checkup... I believe the chemo has weakened my teeth too.

Anyone else feel their teeth have been compromised since chemo?

dventi

@Terre.. Thanks.. yes same for me... kind of sour taste in mouth on and off. Thanks for sanity check!

Also having dental checkup... I believe the chemo has weakened my teeth too.

Anyone else feel their teeth have been compromised since chemo?

Thanks again!