FEMARA
Comments
-
I joke that my batteries suddenly fall out. Will be fine then have to stop moving to recharge before I can functio
0 -
Please pardon my silly question. Upon reading this topic I hear many of you complaining of severe SE after taking Femara. I understand the action of this drug is basically to stop the production of estrogen (correct me if I am wrong). If a young woman suddenly stops the production of Estrogen I can see where many SE would occur. Its like suddenly going through menopause. As an older woman - 70 years young - I rode that menopause boat 20 years ago. I know my body still produces small amounts of estrogen so it would seem that if Femara were to stop my production, the SE would be less severe. Is that crazy logic? Or could I still face the same nightmare as many of you are facing? I have not started Hormone Therapy yet but am on schedule to begin very soon. Any comments would be appreciated.
0 -
Hi Frogie, I'm about 10 years post menopause and I've had very mild symptoms on Femara. I did get vaginal dryness so insert a bit of coconut oil every day. Some days I'm a little achy but that could just be old age. I also had very few side effects going through menopause - no hot flashes, etc
Wishing you the best, Lucky
0 -
Oh... THANK YOU!!! I have heard so many horror stories about Hormonal Therapy (should it be renamed HORRORmonal Therapy?). It is good to read positive comments.
0 -
~Frogie~
Let me add to this thread. I am 13 years past menopause and I have to admit it was not kind to me. I didn't have hot flashes...I had drop to your knees dripping sweats, day & night. I was a horror to be around and made my family miserable with my wild mood swings. Then, a year later, it was all over. The sweats stopped and I became a human being again. My intimate life suffered as well when I lost all interest for about 12 years.
I was diagnosed with breast cancer in December 2015. You can read my diagnoses under this post. I have been on letrozole (Femara) about 10 months. The only SEs I have is moderate joint pain in my fingers and knees. Glucosamine chondroitin, Vitamin D3 and extended release acetaminophen make it manageable. I also have brittle and peeling finger nails, but have been told it isn't the medication. It may be from the cancer. Anyway, not every one has the bad side effects and there is the possibility these effects will go away or lessen when I finish the meds. I am willing to put up with a bit of discomfort if it means I have a better chance of not having the cancer come back.
0 -
Frogie - I've been on Femara/letrozole for 7+ yrs (was only available in the brand name Femara when I started it but have been on several different brands of the generic form since). Have had no SEs with any of them. I was 19 yrs post natural menopause when started it at 63. I didn't have any issues with going through menopause either. (Have no clue what a 'hot flash' is.)Yeah - at 70 (71 next month), I have 'aches and pains' thanks to having been a very active horsewoman and active outdoors. Long before IBC DX, I already had a lot of osteoarthritis (in upper back) and was osteopenia (HUGE family HX and 44 at menopause - never did HRT).- it was only time til osteoporosiss.
Femara/letrozole is not to block the production of estrogen - but to prevent/limit the up take of estrogen based BC that have fed on estrogen. It is not for pre- menopausal women.
Unfortunately - the HORROR (negative) stories are the ones that are more noticed than Positive ones. There are so many positive 'stories' but - - -.
0 -
Those of us long past menopause—and whose menopause was quite tolerable (I still have never had an actual hot flash)—tend to experience milder SEs from AIs than our younger sisters who were put into chemopause, had ovarian suppression or surgical menopause (or whose natural menopause was recent and early). My PCP warned me not to get too complacent, because the effects are cumulative, but I’ve noticed only a little more finger stiffness and the return of “triggering” (index, not thumb, this time) over the past 2 months my pharmacy could no longer obtain Roxane (no longer made) or Teva letrozole and sold me Accord instead. I had almost no symptoms at all on Roxane, and fewer on Teva than I have on Accord. Keeping my actual Canadian-purchased Femara (got 2-1/2 mos. of a 3-mo. supply) in reserve till my pharmacy gets an even worse generic than Accord—my Femara expires in 2019; and I only have to take an AI—assuming no recurrence--through 2020.
0 -
I went through natural menopause about 13 years ago. It really wasn't too bad...except for the mood swings, but that might be because I had a teenage girl at home at the time who was giving us all kinds of grief. I had hot flashes that weren't bad, and I've continued to have hot flashes periodically since then, right up to a year or so ago. Once or twice a week maybe. With the Femara, I have been getting them quite often and to the sweating stage, which I'd never experienced before. They haven't been bad the last couple days, but I've only been on it for 3 weeks. I have had a painful trigger thumb for 4 months, prior to even have a BC diagnosis...and oddly enough, the last two days, I've finally been able to bend the distal knuckle, albeit with a click, when it hasn't bent for months! I have arthritis in my right hip and that seems to be worse than "normal" so I've been taking Motrin at night. Tylenol does absolutely nothing for me. I'll discuss this with the MO when I see him. I'll have bloodwork then too to see if my cholesterol has gone up...hope not, it's high to begin with. My BP so far has remained the same and I haven't gained any weight.
0 -
velvet poppy - I take a nail and hair gummy with biotin and it is helped keepmy finger nails from peeling. I really was amazed because usually I can't see a difference with the vitamins very much but this was pretty immediate. My nail started peeling when I started taking tamoxifen and have been much better now since gummy.
Did we ever figure out when was the best time to take femara? I am still having a hard time staying asleep and falling asleep. I am pretty sure this is one of those things that we just have to try and try again and see what works with our bodies.
I hope everybody has a lovely day
0 -
~dsteaparty~ I have started taking biotin (5000mg?). MO said it could be four months before I start to see results, if any. I am just impatient because my hands already hurt from the letrozole joint pain and I miss having pretty nails.
0 -
Hey everybody.
I still hate Femara but I'm hating it a little less today. Wanted to share my experience in hopes it may encourage others who are taking it for treatment.
I've been taking Femara for about a year for Stage IV. A daily dose produces far too many side effects. My dose schedule is every other day, or two days on, one day off.
I tried Cymbalta for joint pain and it didn't work. Weaning off that drug was hell. Claritin helped a lot. Life saving. My shoulders and hips no longer ache constantly.
About 3 months ago, I noticed my hair and nails seemed to be thicker. Not abnormally, but AIs have destroyed my hair to the point that I wear hair pieces. Lately I've been skipping those. My manicurist noted how long my nails are. Nails have to be trimmed every month.
Hot flashes all but disappeared, except for when I re-start Femara. I have taken a couple of "vacations" from Femara, for a week or two.
I started to worry that maybe after a year, the Femara wasn't working, and that was why my side effects were improved.
My quarterly PET scan last week had the best results in years. Some tumors had resolved and all were less active. For instance, SUVs of 7 and 8 were now 2 and 3.
I had planned to ask my MO for another treatment but after these great results, I'm going to try and stay on it. My doctor reiterated that Femara "vacations" of a week or up to a month were fine; whatever would help me stay on Femara as long as possible.
I know that many of you are taking Femara as a preventive. I am not sure if I could endure Femara under preventive circumstances. For my needs, I'm just glad I can tolerate it.
0 -
Tarheel Michel - That is a very interesting outcome. I've asked about reducing the dose or adopting a different schedule and I've been blown off. I ,ay consider taking matters into my own hands. Like you, I have to be on hormone suppression. No choice.
>Z<
0 -
Tarheel Miche, thank you for sharing the information on Femera! I am on a daily preventative dose and the SE are really bad.. I am going to ask my ONC if there is any possibility of taking a day or two off per week.. So glad to hear you got great results your persistence has paid off!
Have a great day!
Ronnie
0 -
My oncologist okayed taking a half pill a day to address side effects. I told her I had seen on the drug insert that 20% of the usual dose was effective. I haven't done it yet but just bought a pill cutter! I asked the pharmacist if alternating days would be as good as taking 1/2 per day and he seemed to think that having a consistent daily dose was better, but he didn't really know and was just saying that on general principle.
0 -
you said just what I feel. I went to my MO to get help with a coping strategy for taking these meds. After one year on Femara I was almost wheelchair bound. I felt better on chemo. He had prescribed opioids 2 weeks earlier which allowed me to stand , however as I explained it could not be a long term solution but it would trigger migraines. I knew he didn't hear anything when his last words were for me to take a break from it so I could get my migraine under control. I also have fibromyalgia which he whould like to think is the cause of this pain and swelling but I have had the other conditions for 50+ years and this is different. Has anyone changed MO's after treatment? I have been so upset . Thanks for listening.
0 -
Racing-life, people change doctors at different times, if their needs aren't being met. We encourage people to talk with other doctors if you feel that you are not being heard. You certainly deserve the best treatment, and understanding of the full picture!
0 -
Racing-life, my MO would not listen to me either. I have been on Femara for almost a year, and my hands are all but crippled. I told my MO I had horrid joint pain and trigger finger in 4 fingers. She looked at me and said "This is not from the Femara, you need to go see an orthopedic surgeon." Well, instead of seeing an orthopedic surgeon, I went to see a different MO, who listened, agreed with me that Femara was the cause, and took me off of it. I have been off for one week now and really haven't had any improvement in my hands...yet. I will be off it for one month total and then I will start on Exemestane. I'm hoping my hands weren't too far gone to find relief. So, long story short, Yes, it is more than OK to switch doctors if you aren't happy. I am so glad that I did.
0 -
Annie- I was on Arimidex and had horrible joint pain my hips and hands were the worse. My MO told me to go off two weeks to see a Diff- I went off 1 month and I felt a whole lot better, like a new person, I am hoping this is the case with you and Femara. I had been on Femara and my cholesterol,. BP went up and my bones thinned and I am currently being switched back to Tamoxifen. It is so strange how each Dr has their own opininon on what works and doesn/t work. I was told by my MO that if I did not want to be on a cancer drug I did not have to be. I am only 3.5 yrs since DX so I thought the standard was at least 5 yrs- pushing for 10? confusing !!
0 -
ndgrrl, I am so hopeful that a month off will eliminate my pain. It is 24/7 and horrible. My new MO did tell me that Exemestane has the same side effects as Femara, but 50% of the women who switch drugs, are able to eliminate the side effects....so she thought it was worth a try. If I don't get alone with the Exemestane, she will try Tamoxifen. She did tell me that we caught my cancer early and surgery most likely cured me....and that everything else is just gravy! Well...to me...the gravy sucks worse than the cancer.
0 -
I can't get Roxane anymore so... my pharmacy offered Breck (for Breckenridge Labs). One month no sides, and no finger joint pain. Knee joint pain better too. I take it after dinner, feel a little warm after an hour or two. That's why I take it early so I don't wake up too warm. No flashes ever. Been on Letrozole for over two years.
0 -
Hi all. Been on letrozol for 8 months now. Besides joint pain and increasing hot flashes I seem to be more mentally cloudy, especially with word-finding. Sometimes can't carry on conversation without forgetting names of things or people. Driving me crazy. I work out 5 days a week and feel great while doing it, but tired and sore the rest of the time. Anyone with similar feelings? I failed a 5-day course of anastrozole earlier as first Rx. TIA for your comments.
0 -
HI Novmoon. I was on Letrozole for 7 months and have a month break now and will start back with Tamoxifen. You described me to a T- forgetting names and especially words. My hubby even noticed I could not find words. It was frustrating to say the least. I was on Arimedex for 4 months and felt 90, my hips hurt so badly and my legs and feet swelled up. that is when I started Letrozole and am going off it because my BP and Cholesterol went up and my bones thinned even while I am on Zometa infusions(trial which shows it can help keep cancer from the bones)
I hope you are able to figure something out and you have a good MO who listens to you.
0 -
Roxane was bought by Westward, which decided to stop making letrozole. Not sure if Teva still makes it—my area pharmacies can get only Accord or Sun. Been on letro for 17 mos., the last two of which have been Accord. Right hand index finger began triggering intermittently last week—and I have a 3-hr. farmer's market gig in Milwaukee coming up in a week & a half. So far, I can play, but not sure if the triggering gets worse that I can fingerpick at proper tempo. Stay tuned (pun intended).
To be fair, though, my R thumb triggered last spring and (8 wks after a cortisone shot) abruptly resolved the night before surgery. (My surgeon said that triggering is often self-limiting, as nodules on the tendons sometimes “lyse"—dissolve—spontaneously). And my L thumb triggered twice (finally requiring surgery) several years before breast cancer, much less AI treatment.
Doing personal training & cardio several times a week to keep the joints moving, muscles strong, and limbs flexible.
0 -
AnnieMF...so sorry you are suffering. I don't understand how any MO could tell you the joint issues were NOT from the Femera! It's the most common SE of aromatase inhibitors. IMO this is gross incompetence. Hope you find a solution. WE should not have to decide between QOL and recurrence. We must speak up for better treatment options.
0 -
I have still been able to get the Teva brand of letrozole here in the western suburbs of Chicago from a pharmacy that special orders it for me, and I heard there is another pharmacy in Downers Grove that will order it also. PM me if you want the name of the pharmacy.
Faith
0 -
Novmoon, it would be helpful to know which manufacturer you get your letrozole from. It should be on the bottle
0 -
My current letrozole is from AVKare. I started on Femara when it was not yet available in the generic form, letrozole. When it became available as generic, I went to generic form. I don't remember all the different brands I 've had. Can't say I've noticed any differences in the different brands. I've been on 'it' for 7+ years.0 -
My MO switched my dose time from evening to morning because I was having trouble waking up at night with hot flashes AND feeling like something was crawling all over my arms, then not being able to go back to sleep. The manufacturer is Accord. I don't have any issue taking during the day except the hot flashes, and the ones at night are fewer and far between, and while I don't wake multiple times during the night, I do wake up much too early, after only 5-6 hours a night, which is making me so fatigued. I started taking an antihistamine prescribed by my PCP prior to surgery which was a godsend, as I sleep 8 hours a night....now, it doesn't help anymore since taking the Letrozole. :-(
0 -
I picked up my first Letrozole yesterday. The manufacturer is Mar/Can, a Canadian company. I'm not sure when I'll decide to start taking it....
0 -
0
