FEMARA
Comments
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Thank you Usha, my husband and I are actually contributing some of the pains to Femara and Levaquin. I have been on Levaquin for 3 weeks now. Levaquin causes some deep muscle aches and pains as well. I've got 3 more days left on the Levaquin then I'm done hopefully with it.
christy
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I just got appt with new onc. My other onc was not going to be in my network,so had change onc. Will be glad, the change will be good.
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Anyone having scalp pain from Letrozole......it seems to vasilate between being itchy and being painful?????
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Scottie that is the one thing that I thought I was alone in so your answer is yes. My hair has gotten so thin but the shedding seems to have now stopped.
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Thank you Chrissyb......I have also lost so much hair, but the scalp pain and itchiness is Isomething fairly new.
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I had itchiness everywhere and a hair on my skin felt awful! I am on a break from it now and that has gone away.
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Good to know it goes away....however I have another 4 1/2 years to go....yikes
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Hi Ladies, I have been on femera for about 8 months after completing 5 yrs of tamoxifen (in addition to surgery, chemo and radiation). The TAC(chemo) left me with lots of muscle and nerve pain that gradually went away after about three yrs. Now I am feeling totally beaten down by femera. I tolerated tamoxifen fairly well but femera is causing such fatique, muscle and nerve pain, loss of sex drive as well as lately I am feeling depressed and very unmotivated. Pre cancer I was so vibrant, working, exercising , raising a family, laughing etc. I just hate femera and am thinking of quiting. However my Onc says it is the new protocol to do 5 yrs of femera after 5 yrs of tamoxifen if you are at high risk for recurrance. Is the benefit really worth this poor feeling? I want to do all I can to stay NED but am feeling very sad thinking about the next four yrs of this . Will the side effects diminish? I need some hope !
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I had only been on it for 10 months but was having a terrible time with fatigue, pain, joint stiffness and arthritic SE (felt like i was 90 years old) so dr wants me off for 10 weeks. Will have to decide if I am going back on or trying a new one in January. I did not realize how bad i was feeling till I stopped taking it! Can not live like that for 5 years...
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Hi ladies, I have only been on Femara for about a month and other than some minor soreness sometimes (in the am when I wake up) I think I feel pretty good. I did start taking it at night and it has helped me sleep better. I like that I can take Femara and not have to give up my antidepressants. I would not be okay doing that. I sure do hope it keeps on working.
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Thanks for your input ladies, it always makes a person feel so much better knowing they aren't alone ! Ginger i think I will try and see my oncologist and see if I can take some time off also, I can't even remember how it felt before I had all these meds coursing through my blood, I long for a feeling of health and energy ! Cheers
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Hope, I would recommend exercise and anti-inflammatory foods. Like you I had some nasty inflammation issues after the chemo, and the femara can do something similar. Several online nutrition guides have inflammation scores for foods, but basically the idea is to get rid of refined starches and bulk up on the veggies. Onions and cabbages are particularly good, so I make sure to eat one or the other (in raw form) daily.
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Thanks Momine ! I have been trying to keep up with my exercise, but just feel so worn out and basically like you say, "inflammed" the next few days that it has been getting me down. My mood usually is elevated the day I exercise at the gym but it's the next few days that are bad. I think I'm going to get out my cross country ski stuff today and see how some fresh air will help also ! Sounds like you had a rough go of the cancer treatment, how are you doing now? I will definitely take your advice and check out the foods that cause more inflammation. What do you think about taking some Aleve to combat the achiness, I hate taking more stuff but maybe it will help my mood also if I'm not so sore every day. Keep in touch !
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Hope, you should ask your doc about the aleve. I don't take anything, except a baby aspirin every other day. It can be hard to drag yourself out to exercise, but I pretty much set it as a goal and think of it as medicine or my daily shower. I always feel better after.
My treatment was pretty intense and although I was lucky not to have anything go horribly wrong, I was really worn out by the end of it. The first time I went to the gym after my treatment, I almost fainted after 15 minutes on the treadmill. It gets better if you stick with it. Now I walk 1-2 hours a day and do 40 minutes of strength training 3X a week.
Getting outside sounds like a really good idea.
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hope, I was taking a tylenol each day, but a few weeks ago decided to stop. My hubby tells me that my moods have been better since I stopped the tylenol. (I cannot take NSAIDS like Aleve, so they weren't a choice for me.) As Momine says, it's important to eat as non-inflammatory as possible, and exercise does help. If you have allergies, stay as much away from your allergens as you can - they will make you ache much worse.
I also take a number of supplements such as curcumin and ginger which IMO help. I've been on it (letrozole) a little over a year. I had such horrible SE's with tamoxifen that I only did it for 6 months. I don't want to change again, as my oncologist seems to restart the clock whenever I change meds. So for me, right now, a little under 4 years to go.
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momine, so true about the exercise, I could only do 10 minutes and start and walking up stairs totally winded me. Now when I bound up one flight of stairs I feel so grateful and I smile!
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Day, your post about the letrozole not causing the side effects, is important to reiterate. The drug is doing its job, blocking the estrogen, keeping it from fueling those breast cancer cells. The hair loss, joint pain, hot flashes, insomnia, are all symptoms of low estrogen. Make sure your vitamin d3 level is above 50. That has helped me for the last 10 months of taking the letrozole.
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Hi all I have just finished my years of tamoxifen. I also did a 5 year trial ( I got a shot of triptorelin) every month to shut down my ovaries. Because I was pre-menopausal when this all started. Now my doc thinks I should automatically be post-menopausal now naturally due to my age and the 5 yrs of chemically indused menopause. So he wants me to wait for 6 mths then start femara. I have been reading about the femara and I am spilt on it the pros and cons. It kinda was a blow cause I was hoping this was the end of BC because I did all the treatments and thought I was cancer free. Just really mixed feelings. I'm just looking to see has anybody had mild se from the femara if so what or how bad is it really.
Thanks for your help
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Janice, hi and welcome. I would describe my SEs from femara as mild, but it is probably very individual. Unbearable to one person may be no big deal to another.
I have (consistently):
Hot flashes. This is annoying, but not so bad that it really messes me up.
Painful joints, especially in my feet. If I have been sitting for a while, I feel very creaky (and cranky) as I try to straighten out my achy skeleton, but it passes. The foot pain is annoying, but for me bearable. I have had a bad back all my life, so compared to that, this pain is not that big a deal.
I have also had some SEs that came and went fairly quickly, a few weeks of weird depression is the the one I remember best.
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Oh, and about that there foot pain. I went to get some new booties today. I put them on in the shop and the pain was bad. I felt all sad that I wouldn't be able to get them, but then I asked for a size bigger than I normally wear. Problem solved. I wear them with soft, cushiony sock and it is totally fine.
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Janice, ChrissyB has had very few s/e's with Femara. She will probably be along soon to encourage you. It does seem to be very individual. Would say mine are close to severe.
Everyday the thought occurs to me to just stop, but somehow I manage to keep going! 2 years left to go!0 -
Momine and Jacee thanks for your input....I'm probably going to try it and see what happens and if it is unbearable I will quit it. Then again I don't know what menopausal state I will be in either. We never discussed if I was still premeopausal what course of therapy I would need. I'm just trying to get some more information before I make the decision.
Oh regarding se they are worse then the tamoxifen? The se I had with it was come and go hot flashes (mostly at night) which I think brought on fatigue, weight gain, mood swings, low sex drive and hit and miss depression.
Thanks again ladies
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Hi Janice I've had very few SE's from Femara and those I do are well controlled with natural medicine. The list goes like this:-
No sleep........changed taking tab to night time.
Aches and pains..........caused by lack of estrogen but controlled by taking Cucumin and Boswellia both of which are anti inflamatories.
Itchy sore scalp and hair thinning.
These three are what I call the on going but I have had for very short periods early days of me taking the Femara:-
Mood swings, dizziness and hot flashes (still get them occasionally).
You will find that ninety percent of the SE's are the bodies response to lack of estrogen rather than the bodies response to the drug.
I only took Tamoxifen for three weeks as I had an extreme reaction to it, aka it put me in hospital with a suspected heart attack. We are all different when it comes to reactions the only thing you can do is try it to find out how you will react. Always keep in mind there are some things we can do to make our lives a little easier and tolerable in order to get through all of this.
Good luck!
Live n hugs. Chrissy0 -
Day, sorry, I must have misinterpreted your Oct 19th post when you said the letrozole itself doesn't cause joint pain, the lack of estrogen does. In that post, your comment about it causing menopause x 20, was spot on. I've only been on it for 10 months, and so far, so good. We'll see what another year of less estrogen brings, and how many more SE's I can tolerate.
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Chrissyb thanks for your input
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Janice, in regards to tamoxifen, I don't think you can compare. I (personally) had a hellish reaction to tamoxifen, but letrozole, though painful, is doable. (I've been on it a little over a year).
I have rather severe muscle pain and stiff joints, headaches and fatigue. Massage helps.
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I agree, Letrozole/femara for me is doable apart from my thinning hair and a few aches and pains...not so bad.
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