FEMARA
Comments
-
mfm48 You absolutely are on the right track! I tell myself every day to get moving more. The days I listen to me I find myself more agile and with more energy. Of course, this is almost the end of my 5 years and I should have started talking to myself much earlier.
It's interesting that the side effects of the ooph sound very much like the side effects of Femara so perhaps you have already done the hard part.
The only thing I know for sure is that whatever happens to me is not necessarily what will happen to someone else. Also, whatever happens this month is quite likely to change in a while.
0 -
Hi mfm48 and welcome. So sorry that you are joining, but you will find a lot of comfort here. Everyone is different and there are no guarantees (I think we all know that by now)....but not all people experience difficult side effects from AIs and when it is such a powerful tool in your toolbox, you want to do everything possible to be compliant to the medication. I think that is particularly important if the studies indicate that all or some of us will benefit by taking this tiny pill for 10, not just 5 years.
I have been on Femara for 8 months and I will share my experience. I started taking the medication at night, but I had such sleep disturbances....difficulty getting to sleep, difficulty staying asleep. After a week I switched to morning and that has been best for me. After about 60 days on the medication, I started having a lot of joint stiffness and nerve pain (like zaps) from my hips to my knees. It was like sciatica. All of these symptoms were relieved with occassional ibuprofen and exercise. I have ratcheted up my exercise program and I wear a fitbit to measure my activity each day to a healthy standard that I set with my doctor. I still have stiffness when I have been seated or sleeping for a period of time, but within about 10-20 steps, I am back to the old me. I have not experienced any hot flashes or headaches or depression or fatigue, but I am 64 so I was probably well past menopause when I was DX. I had surgery, chemo and radiation and I was able to maintain a normal schedule all through treatment. I worked from home after my surgery with no problems, and I missed a total of 8 days of work during my 6 rounds of chemo. It wasn't fun, but after chemo and radiation, Femara seems like a walk in the park to me. I do strongly believe that a healthy diet and regular exercise is so very important to managing these side effects. I was always a daily "walker", but when I started taking Femara, I found that I needed to ratchet it up with more weight bearing walking and light jogging. I would estimate that I have doubled my activity in the last 8 months.
Based on what you are doing already, you are going to do great! And if you have any struggles...just come here for encouragement.
Love, MsP
0 -
MsP
YOUR experience sounds just like MINE!!! Femara at night, not good, Femara in the morning, best! I have developed some aches in my knees also after 8 to 9 months but realize these are SE's and nothing serious. So yes, everyone handles Femara differently so don't expect it to be all bad. And remember why you are taking it. That helps a lot! Good luck to all.
Amy
0 -
Hi Amy, I think it is so interesting how different we all are. The one thing I learned was that even though I wanted to know what "might" happen with my treatments, I still expected to have minimal side effects. I feel lucky that my onc acknowledges all side effects and considers it to be her job to support me. I know that some oncs dismiss side effects when they could acknowledge them and help their patients find strategies for coping with them.
Love to all today. (I am taking a break from work for a brisk walk before it gets too hot in sunny Las Vegas!)
MsP
0 -
Hi mfm: I am one of the lucky ones, well, lucky so far. I have had no SE's yet from the Femara/Letrozole. I just finished rads on Monday and I did not have chemo. I started the Letrozole a month before rads and so far all is good. I work full time and have changed my diet. I have lost some weight but have a lot more to lose. Am exercising some but that needs to pick up so I can get more benefit from the diet change. I am post-menopause and my MO did not want to put me on Tamoxifen because he did not want me gaining weight. I have enough of that LOL. I keep up with this thread and realize that there are a lot of women who are having difficulties with this drug but for me it has not given me any issues yet. I am supposed to take the pill for 10 years. So, I am not in the best shape, far from it, but I have made substantial changes in how I eat. I juice now as well and I think that has been the reason I have a lot of energy and did not have much fatigue during rads. I think the more exercise I can get in, I will feel even better. If I ever start to get SE's from the pill, I will let everyone know in here.
Welcome to this thread and I wish the best for you!
0 -
BigD, Lassie, MSPharoah and AmyQ thanks so much for your responses. I took my first little pill last night. I was so tired today. Not sure if there is a connection, but besides when I was going through chemo/radiation I never slept in the afternoon. I did yoga yesterday and went to the gym today. Taking Vitamin D, E, B12 and B6 and glucosamine. Trying not to make this the focus of my life, rather just another part of it. Appreciate you all being there.
0 -
I agree on not making BC the focus of the rest of my life, like mfm48. It will never be the same life I had before, but I will not allow myself to become a professional BC 'victim' bedecked in pink ribbons. (If that sounds offensive to some I didn't mean it that way, but I think most know what I mean.). I just finished a year of treatment with chemo, Herceptin, and radiation and have started Femara. I decided to transition my body to it slowly, every other day for 2 weeks, and daily beginning this coming Monday. I hope to handle whatever side effects that might come, while leading my life the best I can and present myself as the person I was before BC.
0 -
Peaches - I started the Femara last Tuesday and have taken it every night. I feel a bit more tired than normal, and I've been having vivid dreams (I take it at night) but otherwise feeling fine. I would love to hear how you are doing on the Femara. Have a great weekend!
0 -
man, i have been taking it for two months now, and one thing i have noticed, is increased vivid dreaming, but nightmarish quality to em. last night i dreampt thier was a rabid bat under my blanket with me, biting and scraping me with its claws! and it hurt! and when i looked under the blanket, the bat was bigger than both hands, and had the face of one of those troll dolls that were popular when i was a kid, with a verybad haircut... almost like chemo-bald sparcity....eeew... it took me forever to get back to sleep! but not a smiling troll, this one had a look on its face like it was afraid...
0 -
What a coincidence, I too dreamed about a bat a few weeks ago.....hmmmm
0 -
April marks my year of attempts @ an estrogen sucker or estrogen blocker. Am going to try to stick with Femara. The dreams are vivid, so very real, and often outlandish. I have to get up and tell my self it was not real. Mine almost always involve someone I know and we are in danger. Thus, my sleep is impacted. I almost always take a long nap Saturday.
Still fighting bone, joint, muscle pain which my MO says I should not have this far out. Fine. Make it go away.
Saw my internal medicine doc this week. Had not seen my cardiologist since January and next appointment had been moved until June. She changed meds in hopes I would quit seeing black and dropping to my knees. Due to herceptin and heart failure. Damn cancer.
Happy Easter. Eat the ears first.
0 -
mfm48- Yes, let's do keep up together on our progress since we are starting at the same time. Tomorrow I start Femara daily after 2 weeks every other day. After 2 night doses I switched to mornings after not sleeping those 2 nights with Femara. No problems with sleeping when I take it in the morning. Have you thought of switching to mornings? I'll deal with side effects as and if they come, but right now I feel great. Suddenly I feel like my old self again. Maybe taxotere and carboplatin have finally worn off??? Heck, it's been 8 months since my last doses of those- good riddance!
I must be very prone to sleep/nightmare problems as I had to get off Chantix anti-smoking med for that reason and I tried Chantix twice. The drug worked beautifully on the smoking habit, but I couldn't take the nightmares. Always horrible animals climbing all over me. I put up with it as long as I could each time, but started having trouble getting out of the dreams even when I was fully awake and sitting up. Couldn't take it anymore and even 1/2 dose didn't help. With 2 sleepless nights on Femara at night I could imagine the nightmares would be next, so switched to mornings.
Good luck.
0 -
Hi all.
I started Femara just over 3 weeks ago and am relieved that so far it is treating me far more kindly than Tamoxifen was!
When I started thsi whole journey at the end of 2011 I was pre-menopausal. The period after my 2nd chemo in Feb 2012 was my last and I started Tamoxifen in August 2012.
That drug was hell for me... Cyclical depression, weight gain (and I wasn't small to start with), muscle and joint pain, mood swings and a general feeling of blah.
Since starting the Femara the depression seems to be lifting (hubby has commented) and I have had enough energy to join the gym! No weight loss but I feel so much better. I still have some muscle and joint pain (random) but not nearly as much as with the Tamox.
Hoping that it continues like this...
Jenn
0 -
I was on Arimidex for a year before the SEs became life-threatening, and earned me a two month drug holiday. Within 8 weeks, ALL my SEs went away.
Then I started Femara in August 2013. I was amazed that I did so well. In January, on the referral of my MO, I started seeing an acupuncturist. Even though I wasn't suffering the extreme joint pain I had on the Arimidex, I did feel that the weekly acupuncture was definitely helping me feel "looser" all over.
Well, in March, I got called for jury duty, then I got sick, then the doctor's schedule got backed up, and long story short I went 7 weeks without a treatment. Man - my joint pain and stiffness came back with a vengeance.
I finally got in to see her on Friday. She inserted one needle in my head (right side) that hurt so bad she had to remove it after only five minutes. It was in the meridian connected to the hands and fingers. Hmmmm....... the middle trigger finger on my right hand has worsened considerably, and the arthritis in my right-hand ring finger is swollen and starting to be fixed in place. Talk about blocked energy!
For me, this is more proof that these acupuncture treatments DO work on joint pain and stiffness from the AIs. Fortunately, Kaiser has kept track of several clinical trials on this, and now offers it as a covered benefit.
Worth a try!
0 -
i wish i could afford it, but with no job yet, forget it...
0 -
Blessings, I am definitely going to look into acupuncture after reading your post! I have arthritis in my hands and I have now developed a sore area on the right side of my head. The middle trigger on my left hand also seems worse lately. I was thinking the sore area on my head might have a more sinister cause but I may look into acupuncture first.
Kathec, good luck with the job hunt!
0 -
Interesting about the acupuncture. I think its worth a try. I am taking the recommendation to exercise at least an hour a day - yoga 2x a week, walking 2 x, gym 2-3x and a bike ride if its nice. So far I am sleeping fairly soundly - I've always been an easy sleeper - but just vivid dreams. We went to Disney the week before I started and I dreamed I was in the Mickey's Philharmagic video. Then, of course, after watching Frozen with the kids, I swirled around with Elsa and we were wicked together. I'm going to try another week of taking the pills at night and see how I do. I am more tired than usual at night and I read somewhere that it could make you sleepy so I don't want to be drowsy during the day. Any experiences from anyone else re: sleepiness during the day?
So my last chemo was November 12th. That put me into menopause, but to be sure we had my ovaries removed on February 27th. That's when the joint pain started. I didn't start Femara till April 15th. So while I'd like to blame it all on the Femara, I think its also the forced menopause. When you can't ease into something your body gets a shock.
JennT and Blessings - glad the Femara isn't too bad.
Enjoy the day!!
0 -
Susan......I have been on Letrozole for over two years now and I'm still fighting bone and joint pain..
It is a S/E of this drug so not quite sure why your MO would say that.
0 -
I have been on femara for about two years. I was nervous after reading all the posts. I think everyone has a different response. I tried to keep an open mind. I was pleasantly surprised when I felt fine month after month taking the femara. I decided to take it in the morning. I started walking 5 miles a day (thanks to new puppy) and doing yoga twice a week. (Totally new for me).
After about 16 months my pharmacy switched generic brands. Within 24 hours I was in such pain and stiff as a board. I stuck it out for two weeks and then took the whole bottle back to the pharmacy with the request to go back to the brand I had been getting. They gladly made the exchange and the pain and stiffness disappeared 24 hours later. So now I have the pharmacy committed to getting me the manufacturer that gave me no side effects.
So now I barely think anything of taking taking the little pill. I take it in the morning with my stretches and coffee.
I think everyone has a different response. I had my share of side effects with most chemo drugs and everything else so maybe I was due for a good experience with femara.
Peace and hugs to all. Thank goodness for everyone on these boards. I have gotten so many words of advice.
0 -
I just want to ditto what MsP said about some oncs not even acknowledging that SE's exist. Mine is exactly like that and I resent it. I had a lot of chemo SE's and with each one she acted like it was the first time she ever even heard of that SE and I was the only one who ever mentioned it to her. Consequently I never got any help from her. I tell her I read all the online med sites and they all list such-n-such as a common SE. Plus you make friends going to chemo for a year and you talk and find out everyone has similar problems and she says the same thing to everyone- never heard of that before.
Heck, no one is blaming her for the SE- we just want help in managing them!! She is so busy I think she thinks if she ever started acknowledging and discussing SE's with everyone it would take too much time and there's not that that helps with some of them anyway.
0 -
ive been on letrozole/femara for 2 and a half years now. I have joint pain, primarily hips, shoulders and feet but also in my back. The back pain I cannot solely blame on the letrozole but it has certainly gotten worse since starting it.
Eating right and exercise help. Acupuncture does as well, for me. I take it at night as I get exhausted about 1/2 hour after I take it.
0 -
mfm, when I started Femara I was taking it in the morning and if I sat still for more than five minutes I fell asleep. The fatigue was terrible so I switched to taking it at night and I have no problems like that and haven't had for the three and half years I've been on it. I think it's just a matter of playing with the time you take it until you find the best time for you.
Jenn, so glad to hear that you are not having any problems with it and that the depression of Tamoxifen is lifting.
Love n hugs all! Chrissy
0 -
Thanks Kiango,
I think I'll try the non generic and see if it makes a difference! I tried Arimedex for 3 weeks and my Dr. switched me to Letrazole. I'm still wanting to reduce SE. Also thinking about adding "joint juice" (Glucosomine?) after reading all the posts.
Thanks everyone for all the great information. I hope to be able to share great insights someday. Right now Im still learning soooooo much, even though I'm almost done with treatment!
0 -
Forgot to say that I am getting the Femara brand not generic. Not sure if it makes a difference or not for what it's worth...
Also, I take it at night either just before or just after dinner. Haven't noticed tiredness, but last night had the weirdest clear dream/nightmare that was so vividly realistic...
Jenn
0 -
Hi
I have been femara for almost 5 years (in June). the things I have found helpful are: taking it at night, exercising regularly-- and generally just moving around more. It has been difficult to lose weight-but I have not gained any either. For the vaginal dryness, I use lots of Replens and coconut oil. Helps, does not completely solve the problem. I find myself a little fuzzy-headed and am hoping when I go off in June, that will resolve. We shall see.
0 -
Crazy dreams again last night. This time my brother (nicest guy) was in reality a serial killer. With bodies. Maybe I can turn my dreams into a really good movie script and make some money from this : )
JennT - I wonder if the generics make a difference. I had a generic for my chemo (Taxotere) and I had really bad skin rashes that my MO said she has only seen since they switched to the generic. After this dose is up I am going to ask to switch to the Femara drug and see if I have a different experience. I do note that the stiffness goes away in a matter of minutes once I get up. Its just after I sit down for a bit or first thing in the morning.
I did not work out yesterday at all and definitely felt the difference. I was exhausted by 8:30 and couldn't wait to crash. I do think it makes a difference. I did start with the glucosamine. Will see how I feel in a couple of weeks after that kicks in.
0 -
peaches12 - you are so right about those MOs who refuse to believe that SEs exist! There is nothing more disheartening than a medical professional who looks at you and says what you are feeling does not exist.
I once had the manager of the Physical Therapy department at a large hospital tell me that they did not offer myofascial release massage therapy for breast cancer patients, "because, frankly, no one has ever complained about what you are describing..." WTH? I was riddled with scar tissue and trapped in an Iron Bra! I felt like a complete whiner until I found the most awesome therapist who not only understood exactly what was happening, but also relieved most of my symptoms in one visit!
When my MO told me she was sad that I didn't come to her sooner with my severe Arimidex SEs, I told her I didn't want to be a whiner. Her response was "You're not a whiner! It's the drug! We KNOW it's the drug! We just need to work together to find something that works for you, so that you are comfortable."
Just hearing her say that made me feel much better. I felt validated and understood.
0 -
Blessings- I don't think MOs don't believe the SEs exist. They know they exist because so many patients have the same complaints. Some MOs just won't admit the SEs exist because they don't want to deal with them.
0 -
I had been so hopeful that I would not have SE's and the first two months were really good. I have had some things happen to me this week and am wondering if anyone has had any of these SE's on Letrozole.
Monday I went to work after taking off a week after my rads were done. I was at work maybe an hour and I started to feel really bad. There was a fullness in my head for lack of a better word and I could not walk anywhere without feeling the floor was tilted and I needed to touch the wall, grab a ledge, a door handle, anything to get from one place to another. My heart was racing and I felt like I was having a panic attack, but no reason for me to be panicked. I tried to type but it was so difficult and I had to go slow. I finally left in the afternoon after not being able to do hardly anything and getting home was hard. I was afraid of falling and was moving like I was 100. I did take the Letrozole that evening but I was pretty certain I was going to stop it and see if the SE's eased.
I also started having really bad night sweats and completely lost my appetite. On Tuesday I went to the ER because I thought it might be a neurological problem. I have fallen a couple of times and just had a brain MRI done to see if there was anything there. I saw a neurologist in ER who looked at my MRI results, took my blood, did an EKG, and did a full neuro exam on me. Nothing. They gave me some vertigo medicine and released me.
I have not taken the Letrozole since Monday and am still home from work. The anxiety and issues with walking and dizziness have eased but have not completely gone away. I still have zero appetite and am forcing myself to eat. I am walking a little better, still have the sweats. My MO told me to stay off the Letrozole and try it again next week to see if the SE's come back, which I understand because we need to know if it is this pill but I do not know what else it could be. This has been so frustrating and frightening and I don't know what to think. Every SE I google with Letrozole comes up.
Any comments would be appreciated.
0 -
I'm still learning a lot reading all the posts. I'm going to try Femara in place of the generic Letrazole. I figure it could well be worth the monthly $30 extra dollars I'll pay in co-pays, if it actually makes a difference. Does anyone have any idea how long I should give the change before I decide if I can tell a difference? I'll be in for at least a 30 day supply. Thanks.
mfm48 Please keep me posted on how the glucosamine goes for you.... that's my next step. Currently my supplements include CoQ10, Vit D, Calcium, & Fish Oil and an ocassional motrin.
0
