FEMARA
Comments
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Thanks Chrissyb for your response. You and I have something in common besides having stage IV BC, I too am a uni boob girl, had my left breast removed some 7 years ago, then had a stage IV diagnosis Nov. 2012 and have been on Femara/Letrozole since Dec. 2012. Cancer was detected in a rib, sternum, and in both lungs. My next cat scans are scheduled for March 6th. Seems he is having them done every 4 months at this time. Yes girls, I'm out to prove my oncol wrong! LOL Thanks Tammy M for your response as well!
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I've been on Femara/Letrozole for 4 1/2 years now. The sore hands thing happened early on and then left. All sorts of side effects come for a little while and then leave. The most peculiar one is that one side of my face sometimes will flush and feel a bit "full" and the other doesn't. Knowing that's all it was made me feel much better.
The most real side effect is that I now have osteoporosis and need to take medication once a week for that. I couldn't have the bone density test on schedule to see if I might break a bone because I was in the hospital with the after effects of having broken a bone! That was over a year ago and is all sorted now.
Mostly the side effects have not stopped me from doing the things I want to do. It would be nice to have more limber joints, thicker hair and more energy, but these pale in comparison to keeping another recurrence of BC away. This time it was Stage IIb.
My oncologist says that five years will be all that's needed for me. Both the oncologist and my GP say there will be close monitoring ever after.
I wonder what people find who have stopped taking it - what symptoms disappear or reduce and how long does it take for those things to happen?
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I have been off femara since dec 2013. It took about month to get to where joint pain not as bad and hot flashes have almost gone. I feel a lot better. I pray I never have go back on it but, if ever do I would.
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Congratulations, nanna! You started this thread in 2008 and now you're done. Yay!
I almost made it to 5 years of Femara, but I started getting bad vertigo and eye issues that my onc switched me to Tamoxifen. Surgery fixed the eye issues. The vertigo and joint pain slowly went away, hair started growing, but the hot flashes got worse. I did find that when I took antihistamine for my allergies, the hot flashes subsided. I also have a lot more energy.
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Yay Nanna!!! congrats to your for getting through your five years!!! Here's hoping you never need to take anything like it again in your life.
Love n hugs. Chrissy
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Yes Nanna.....congrats on finishing 5yrs!!!!!.
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Chrissy, thanks for the tip! I'll pick some antihistamines up today.
Nanna, great news! Hope it's smooth sailing for you now.
SE question - does Femara cause eyesight issues? I was on Tamoxifen for 5 months and noticed a slight worsening, and recently it has suddenly got way worse but I don't know which one is the cause. If it was the T, will it improve now I'm not taking it? Obviously if it's the F, I'll need to get new glasses.
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Heidihill - Femara and VERTIGO??? So the room really was spinning around you?
Dang, I had a massive dizzy attack last week.. disoriented, disequilibrium, swimmy feeling, like walking on a waterbed.... I kept crashing into the furniture on my way to the bathroom...
I just chalked it up to MAV (Migraine-Associated Vertigo) and stress... but it's been YEARS since I had a spell like that....
Now that I think about it, I have had several episodes of very brief dizzy spells since taking Femara...
Did your doc say it was the Femara that caused your vertigo?
Rats. I REALLY don't want that side effect. I already have several vestibular disorders, and enough trouble standing upright as it is.
Edit: brain fart. I forgot I posted about dizziness and vertigo a few pages back. That was before my big attack....
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What antidepressant can be taken with Femara? Effexor? My psychologist is recommending I start taking one. PTSD is getting worse for me.
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I don't know. PTSD is so complex and needs specialized care. Just 'popping pills' is not the.answers. Unfortunately it is so often undiagnosed or misdiagnosed. PTSD is Post Trumtic Stress Disorder - anyone can suffer from it after ANY traumatic experience.
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Thanks, Kicks. I've never taken an antidepressant before - not sure if I will either.
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I take Zoloft with Letrozole......not sure what others are compatible.
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It's good to see the opthalmologist regularly if you are on anti-estrogen therapy. My onc said it was a rare side effect, specifically, the issue I had, which was called posterior vitreous detachment which caused internal bleeding. I had flashing lights and a giant black spots. The vitreous was re-attached and it's back to normal now, although surgery might not always be indicated. I thought the vertigo was connected to the eye issue but it could have been vestibular, but somehow mostly fixed itself with the switch to Tamoxifen. The vertigo would happen in the car or in the plane. Not a nice feeling but it usually helped to stop the car. Harder to stop the plane. Lol. It helps to lean back as well as to focus on a fixed object, which could be something on the horizon or the Exit sign in the plane. I do this as soon as I start feeling dizzy, even now. I should wear my glasses more often, as this also helps.
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Effexor - Venlafaxine is what I take they gave it to me as soon as I was diagnosed supposed to help with hot flashes but I still have them. It keeps me on a even pase mostly without the highs and lows. I never took one before but I think it helps a lot with the LOWS.0 -
Heidi, I think I will make an appointment with my eye doctor. Thanks for the heads up.
Hugs to everyone.
Brenda
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I have been off femara for 3 months and I feel so much better.
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Thanks nanna - that gives me great hope!
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Hi Nanna
can you tell me how you feel better? I am scheduled to go off in a couple of months and would love to know!!!
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Acne?!?!?! Seriously, I have more zits now than I had as a 16 year old!!!!! HELP!!!!!
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lahela, I had that too. I think it is from excess testosterone. Mine did go away eventually.
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hi all this is my first post. Been on femara for bout 3 yrs!!! Hate it lots of leg and back and joint pain!!! Some days I can barley walk and feel like im 90!! Ugh everyone said to exercise but when it take all I have to work every day in pain. It's hard can barley lift my legs to put lotion on!!! Sorry but it's just a bad day and so tired of feeling like crap!!! Love you all and so glad I found this site and have u all to understand!!! Donna
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Hi Donna and welcome. Have you spoken to your onc about the possibility of changing to one of the other AIs? Sometimes a change will relieve the worst of the SEs and still give you the protection you need.
Sure hope your days improve.
Love n hugs. Chrissy
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Has anyone experienced excess facial hair since going on letrozole/femara? I have additional blonde fuzz on my upper cheeks which is new.
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Hi Ladies,
I started my 3rd attempt @ Femara last week. Was taken off the first 2 due to SEs-primarily pain. Which was plenty and constant. I was on tamox last which had equal amounts of pain. My MO took me off tamox for 3 weeks, pain decreased, and he wants to try Femara again. Also tried ameridex somewhere between Femara tries. I refered to him as a sadist to the nurses. They laughed. He also put me on a trial of metformin 500mg twice a day and will increase to 1500mg/day in 2 doses. The research is interesting on decreasing the recurrence of tumors. May already know that metformin is an oral drug for diabetes. Has been used for years and years and years. I have had crappy SEs to most of the drugs. Did not finish Taxol as became toxic. Switched to Taxotere. Became really really toxic. Did not finish Herceptin. Due to major impact on heart. Got to 20 of the 52 weeks. This will be my 4th try @ an estrogen blocker after the try @ the estrogen sucker. My pain tolerance is really very high but the bone, joint, muscle pain gets extremely high on these drugs--for me. As I told my MO and RO-I do not want to live in pain and taking drugs. Drugs that hardly take the edge off the pain. Over the counter drugs-do nothing-even in high doses-other than kill my liver.
But, since I was last on this board I rescued a delightful 90 pound lab/golden/great pyronese mix. Roxie was to be a new friend to my 80 lb rescue English lab. I had to have my 14 year old dog put down due to bone cancer. Miss Roxie is about 2 and had been living in a foster home. But----she had not been socialized. She is good with people. And going out the dog doors to the back yard. But will not go to the front on a leash. AND---does not like it when I am gone. She is a redecorating dog and a bit of a chewer. Today she finished chewing the chair the English lab started 7 years ago during his adoption. And she chewed a Knitted Knocker. And a magazine or two. And redecorated 2 blankets and some pillows. And. She has the ability to carry a 10 lb weight in her mouth. I have not seen it-but every morning I put the weight by my desk and every night it is moved. Often to a couch. She makes me smile in between my saying Roxie! She also brings me something when I walk in the door. A roll of saran wrap. The phone recorder-ripped from the wall. A remote control. A skirt. I am now finally learning to close all doors, cabinents, closets. Of which she can often open.
And since i was on this board-my first grandchild is due in April. Cora will be here around April 10th to my 3rd daughter and her husband.
The *$&%&^ ex-husband is still gangling and prowling and attempting to scroll through the south. Am starting property settlement. So odd in NM you can finalize a divorce in about 20 minutes-touch heads-spit in a cup and be divorced. And do property settlement within 18 months. I am still hoping to do this without having to see him since he walked out the day my port was placed July 2012. Told my attorny I will pay extra if he keeps me out of court.
Sleep well ladies. Looking forward to catching up. Quick fast and interesting read. Wives of Los Alamos.
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I have been on Anastrozole since Dec. 2 until last weekend. I had horrible sweats daytime and nighttime. Those I was putting up with. Then I had a monstrous 4 day migraine (with aura) that did not respond fully to migraine meds. My oncologist suggested I try the brand name (instead of generic manufactured in India) but Arimidex is $1000 for three month supply for me. Yikes.
So, instead, I will start on Femara or letrozole. Anyone have trouble with migraines with Femara? How did you cope?
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Susan, sorry for all that you are dealing with, but very much enjoyed the positivity through out your post! Especially paying extra if you dont have to see the ex again. That's really priceless!
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hollyboo, I suffer from migraines but have not had any increase in frequency or severity since starting Femara nearly a month ago. Good luck!
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I started Femara on Jan. 18, 2014. My blood pressure had been low throughout chemo (like 115/58), but the past few nights it had been 166/58. I can feel it start going up. It is just before I take my femara and head to bed. Has anyone else experienced this?
I finished 6 months of chemo (CMF) in November. I was doing 40 minute walk/jog all summer during chemo and kept up exercising at least some when school started up and I didn't have as much time or energy. Then right after I finished chemo I ran fevers off and on for 5 of the next 10 weeks, including a bout with pneumonia. On top of that I had a persistent pain in my foot. A podiatrist put me in a boot for 8 week, until I saw an orthopedic specialist and was told I should not have been in the boot in the first place. Walking with the boot causes me to tweak my knee and hip. Coming out of all this, I feel weak and sore. I can't tell if my knee pain, stiffness, and weakness is the femera or the result of being laid so low after chemo. How can I tell what the new normal is?
I feel so blessed that I've made it as well as I have through the first year since my diagnosis, but I know I need to get stronger and to exercise to stay as healthy as I can. I'm having a hard time figuring out what to do and how to feel better.
Any suggestions? Thoughts on blood pressure? Insights on the "new normal?'
Thank you!
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GJ - my BP has been much higher than was my norm since I've been on letrozole, but I don't know that I can blame it strictly on the drug. The whole breast cancer thing is a rather stressful time, my body does NOT like anesthesia and my BP goes up when I'm put under.
It's easy to blame the drug for just about every new body issue - and maybe it is - but maybe as things calm down for you, so will your blood pressure. Mine has improved a touch since I retired. Still higher than I want it to be, so I'm also trying to cut down on salt (never have used much though), lose weight and exercise religiously. WTH - it's better to strive to be healthy no matter what anyway.
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GJ, my blood pressure has really spiked up since going on Letrozole and Herceptin. I. My blood pressure has been so high this this week that I have actually developed headaches. According to this website, these two drugs can cause blood pressure elevations. I saw my MO yesterday before receiving my herceptin infusion and shared my concerns with her. She said to increase the amount of my Lisinopril and after called my PCP this morning, he instructed me to do just that. My reading is still too high. Like you, I am very concerned. I tolerate both the letrozole and herceptin really well, but this blood pressure really frightens me. I will visit my PCP on Monday to see what needs to be done.
If anyone else has experienced problems like this, please share with us.
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