FEMARA
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Thank you Sandy. Working through sleep issues now. I was taking Cannabis to sleep, but going off of it this month. I was sleeping but still tired. Complementary oncologist says it interferes with REM sleep so that although you sleep like a log, you feel tired anyways.
Switching to Regenerest which is much weaker but works if I practice excellent sleep hygene. Takes a bit of discipline and the transition is not fabulotastic. But starting to sleep again.
>Z<
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Susan: I'm not very busy, so maybe I should GET busy so I won't be so fatigued. I returned to my Zumba class yesterday and kept it pretty low key and by the end of the class, could not raise my right arm because it made my breast hurt, but I'm sure that will get better with time. I'm also walking a couple times a week.
I will wait until my appointment with my MO in August and hopefully this sleep thing will get better.
ChiSandy: Valerian does NOTHING for me, nor does melatonin. Benadryl would make me sluggish too. Hydroxizine is also an anti-histamine, but doesn't leave me sluggish.
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FWIW, my dad's best friend is a top oncologist is another state and he told me when I was going through my surgeries to expect a lot of fatigue for the first year! He said just sleep whenever you can/feel the need. He's a big believer in it's ability to help you heal from all the chemo, rads and surgeries. I didn't have to do chemo or rads but still was sooooo tired. I'm one of those who never ever naps but did so almost daily for almost the first year so he was pretty accurate. But he also said exercise will help with any sleep issues as well as reducing your risk of recurrence almost as much as Tamoxifen or an AI. I took up regular exercise after my treatments and 4 years later find that if I don't exercise, my sleep suffers.
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lala - can you share what kind of exercise you do?
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Lala: My MO also recommended exercise and encouraged me to continue with Zumba and add 2 hours of walking a week. If our weather would cooperate, I'd be out there walking today. Tired of cold and rain! Unfortunately, I cannot nap during the day as it makes me nauseated when I wake up and then I'd never sleep at night. My goal now is to get to bed earlier, as I'm somewhat of a nightowl. My sleep has been off since starting the Femara, so I have to do whatever I can to TRY and get 7-8 hours a night.
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Nancy, I had sleep issues with both Femara and Arimidex. They got worse with time. I tried a variety of things exercise, melatonin, claritin, non of which worked. I then took a break and tried again no luck. I was sleeping two hours a night. Reading would not help because I would not get tired again until it was time to get up. Didn't try benadryl because it makes me feel wide a wake. I finally had to stop the hormone drugs. Waiting for my 2 year follow-up in June to decide what to do next. I reached the point where I was so exhausted that I could not function anymore.
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I do yoga stretch twice a week. I try to do 30-45 minutes of weights 3 times a week. I do intervals 2-3 times a week where I walk briskly for 3 minutes and jog/run for 2 and I do it for 30-45 minutes. And I try to do a long hour or so brisk walk once a week. I do all this at the gym and obviously some days I do a couple of these. If I go to the gym every day, I'll stick to just yoga for a day or do the long walk as my "day off". I try to do something every day for at least 30 minutes and preferably for 45-60 minutes. And I wear a tracker and try to get 10000 steps a day. This sounds like a lot of exercising but I count a day of shopping at the mall as a long walk! Gotta keep it fun or I won't do it!
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I couldn't tolerate letrozole so my ONC put me on Anastrazole ... way less side effects for me. It's worth a try.
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I have not been on Letrazole for a month. My MO took me off it to see if my ear ringing could be caused by it. My hair is falling out by the handfuls, its crazy. I have hair all over the place. Anyone else take a break from Femara(Letrazole) and have this happen? I am 4 hours away from the MO so took awhile to get a Friday afternoon appointment but do see her this coming Fri so I can ask her about the raise in my BP and Cholesterol and bone thinning while being on Femara. I saw a NP a month ago and she assured me there was meds for all those problems. I am not one to want to treat one side effect to get another. UFFF. Anxious to hear what my regular MO says about it all.
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I get ear ringing from any pill or supplement I take. Biotin works for hair falling out. Was also told cholesterol increase is minimal. Mine wasn't affected
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lala1... Very interesting that your dad's friend who is a top MO said exercise can reduce recurrence rates almost as much as anti hormone therapy. Seems contradictory when the SEs of these drugs make weight loss and exercise difficult. Would love to see more studies on this but fear they will be limited since pharmaceutical companies obviously would not pay for them. I happy for anyone who does well on these drugs. However that number is just too small. I also respect and support all informed decisions made. Good luck to all navigating this complicated disease.
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lala1 - we seem to do similar exercise routines. I try for 10-15k steps per day and get that mostly at the gym. It is already unbearably Hot here in Houston and it is much better for me to exercise at the gym. I really enjoy Zumba and a class called booty barre. I also do TRX and a HIIT class. My current regime is Lupron injections monthly and I've had four, I was on tamoxifen for three months and now I am on femara, and we switched from Celexa to another antidepressant I can't remember right now that is supposed to be for joint pain and insomnia. I have a hard time falling asleep although I am insanely tired. I agree with the earlier post her about good sleep hygiene. I will take a hot bath with lavender bath salts and then do a few minutes of a meditation on the calm app I can usually fall asleep pretty quickly. Oh yes three mg melatonin. For me trying to manage exercise, sleep, a clean diet, and my three children is truly barely manageable. The first few weeks of tomorrow I was screaming at everyone and that seems to have calm down with the antidepressant switch and maybe just getting used to it. I have two more months before surgery and then all the rest – chemo, rads, more tamoxifen. It is very helpful to read that people all over the world are going through the same things as me and I am not alone.
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Your antidepressant may be Cymbalta, dsteaparty. My Zoloft, which I had been on for years, was losing efficacy, and I had several bouts of heart-wrenching crying while on Femara. My doctor helped me transition to Cymbalta, which helped w sleep when I took it at night. After dose adjustments, it has really been the answer to prayers
I was on AIs for a year and a half, and I became a disabled mess on them. My MO finally switched me to Tamoxifen, and I am so grateful for every improvement in my life. So why am I still reading posts here? I think AIs are still the best line of defense, but Tamoxifen may be better than quitting altogether.
Good luck with your Cymbalta. For me it has really helped with joint pain.
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Ozoner---I'm in a similar but opposite situation to you....I'm on Tamoxifen and have been for over 4 years but I'm following these AI threads because I'm coming up on the decision time. Do I continue Tamoxifen for 5 more years, swap to an AI or quit it all completely? Thank god for the new Breast Cancer Index test which hopefully will make the decision for me!
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Brutersmom: I feel that's what is going to happen to me. I was fine for the first couple days on Femara, sleeping well, but it has gone downhill since then. I fall asleep easily, but wake up in 4-5 hours. Sometimes I can go back to sleep and other times not. I cannot function feeling like I do today and I haven't even started radiation yet. I am going to talk to my MO when I see him in August. I actually would have preferred a long course of radiation (only doing 4 weeks) and skip the AI.
Snowgirl63: I'm hoping that I can switch to something else in August. And if my side effects get worse, I'll call before then. I have always had some stiffness in one hip, but now both hips hurt at night, so it's hard to find a comfortable position, which I'm sure is contributing to the poor sleep.
ndgrrl: I wouldn't want to take more meds to treat the side effects either. Makes no sense to me. I take a hair, skin, nail supplement because I was losing hair. Seems to help a little.
Regarding tamoxifen: My MO said the side effects of it are more "life threatening" types than the AIs, so he didn't even consider T. and said we'd go through all the AIs if needed to find the one that worked best for me.
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Lala, I came here for exactly the same reason. The thread almost scared me off of trying an AI because it seemed everyone was having a terrible time. I discussed it with my MO and he reminded me that I could always switch back to tamoxifen if I didn't do well on the letrozole. Fortunately for me, I am doing fine. If I develop side effects in the future that impact my life, I will switch. Right now, my one token side effect is trigger finger in one of my middle fingers.
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BosumBlues---FWIW my MO friend (who isn't my MO) said I could get the BCI test anytime. We were speaking this past Christmas, and at the time I was 2 months short of 4 years, and he said "You can take the test tomorrow. Heck, why not? At least you'll know." My next MO appointment is in a couple of months so rather than create a "thing" I decided I might as well wait till the appointment. But you could probably get yours done at your MO appointment next month.
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BB- That was one of the biggies that sent me back to Tamoxifen from Letrozole after 5 short weeks. Light my butt on fire and I would still be sitting on my bum. Horrible fatigue. I'm thankful that T is quite kind to me, hardly any noticeable se's. That and of course continual depression/anxiety zaps your energy. Hope Aromasin works for you. I was thinking of trying it but fear hair pouring off my head again. I'm liking having back to normal hair loss on T. Priorities I know..
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I've only been on Femara for 3 weeks and I'm a mess already.
I have had problems with sleep for years, since menopause. I took a low dose amitriptylline for years before it finally wasn't working anymore. In March, my PCP put me on hydroxizine. I took half or a quarter of a 50mg pill and it did wonders!!! Finally, able to go back to sleep when I woke during the night and slept 7-8 hours. First time in YEARS I had any energy, a clear mind, and felt refreshed every day.
Enter Femara: my sleep is HORRIBLE. Now, when I wake in the middle of the night, I feel jittery, like every hair follicle on my arms is moving, and I lie awake for long, long periods of time before falling asleep, only to wake around 5am, unable to go back to sleep. I'm averaging 4-5 hours of sleep a night, my brain is totally fogged, I'm crying at the drop of a hat, and my mood is horrible. I warned my husband that I am not responsible for what comes out of my mouth!!! I've tried to exercise, but I'm so tired, I can barely stand upright. This morning, I stood in my bedroom looking at my shoes and I couldn't figure out what I was supposed to do with them. I burst out in tears and wanted to crawl back into bed and just not face the day. And this is all after just THREE WEEKS????
My hip pain/stiffness is worse, the hot flashes are tolerable but not fun, and my reflux has been acting up.
I shot a message to my MO this morning with my frustrations. He probably thinks I'm nuts and impatient. I guess I am impatient, but honestly, I can't live life this way because it isn't living! I'd rather not take any AI and take my 9% chance for recurrence.
UPDATE:
Just got a call from my MO's nurse. They told me originally to take the Femara at night, but she said, while there are no known interactions with hydroxizine, the Femara could be keeping it from acting like it should. She suggested taking the Femara in the morning with breakfast. She said sometimes, if the hot flashes are bad and there are mood changes, the MO will prescribe Effexor. I really don't like the idea of treating a side effect with another medication, especially one that has it's own set of side effects. Hopefully, it won't come to that. She is going to call me back on Friday and said to call her if things get worse before then.
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I would ask for Gabapentin instead of Effexor if you are just looking for hot flash control. Effexor se when you go off of it no matter how slowly gives many of us flu like symptoms for awhile. I hated it when I was on it for depression, pre cancer. If I didn't take the pill by a certain time, I felt sick. Just a heads up with Effexor. Never again for me.
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Artista, the Effexor would not be just for hot flashes, but for my mood/emotions and sleep. Someone I know who has lived with mets for 15 years said it was a Godsend, but did warn about taking it slowly going off of it.
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Hi. I've been taking letrozole since November following surgery for post-menopausal, early stage ILC. I've experienced what seem to be the usual side effects - hot flashes, night sweats, joint pain - but nothing too intolerable. I last saw my oncologist in February and she suggested fish oil for the joint pain, and I started taking 1,200 mg capsules daily. (I declined medicine for the hot flashes.)
The fish oil seems to have helped somewhat with the joint pain, but over the last few weeks I have been experiencing worsening heartburn and stomach pain. I stopped taking the fish oil today to see if it was causing the problem, but now I'm wondering if heartburn and stomach pain are side effects of letrozole (and, of course, there's the part of me that's freaking out thinking that the cancer has spread to my stomach). I'm due to go back to the doctor in a few weeks and will ask about it then, but in the meantime, I thought I'd ask if anyone else has experienced heartburn or stomach pain on letrozole? Thanks in advance for any information you can provide.
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Chloesmom,
I have been on Letrozole (generic for Femera) for a few months now and I too get extremely tired during the day regardless of what I am doing. I went from needing 8 hours of sleep to 10-12 hours of sleep. I sure hope it doesn't get worse or I will be sleeping for days...
Ronnie
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IADeb: I actually went through a really bad bout of reflux and stomach pain BEFORE I started take Femara...and since I've been taking it, have had only one small bout. I attribute mine to eating more raw veggies. I think I did too much too fast.
Ronnie: I am having fatigue, but I think it's because the Femara is messing with my sleep. I have been getting 5 hours of sleep max, though since one day of switching from taking it in the morning instead of the afternoon, I slept a bit better last night, but still wide awake at 5:30. What time of day you take your Femara?
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IA- I also started fish oil and found that it definitely gave me heartburn. Sorry but I think that is common!0
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I take krill oil, which is easier on the tummy than the cheaper generic fish oil capsules (and doesn’t smell as bad either).
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Hello, Femera Ladies. This is my first post on this thread. I started Letrozole 3 weeks ago. Thus far, the primary SE is joint pain. I have taken the advice of the wonderful women here and started daily yoga. That seems to have taken the edge off. I read somewhere about using Claritin to reduce the pain, though I'm not sure if that was for Letrozole or Zometa or both. I added that to my daily regime anyway and it seems to be helping.
With the joint pain off my plate (or at least moved to the side), the next issue is the hot flashes. Day and Night! They never quit! The flashes were tough when chemo forced me into menopause, but they are (of course) even worse now with the Letrozole. I have again turned to BCO for advice and tried Peredin-C. I'm not sure if this is really helping or not, but I don't want to stop taking it and find out that the grass is not greener on the other side. Looks like I need to adjust my budget for the electric bill this summer as I will be cranking the AC down to 60.
I've got my 1-month post-chemo follow-up with my MO tomorrow. I plan to discuss these SE's with him, but I'm sure that he'll tell me to do more yoga, and suck it up with the hot flashes. I have already rejected his suggestion on the mild anti-depressant to fix the flashes. I don't think there's much else he can do.
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Nancy618,
I take my Letrozole at night but perhaps I should change to the morning. Maybe that would help my fatigue as well as sleeping long hours....
Ronnie
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Ronnie3001: I wish I had your sleeping problems!
Too bad we couldn't split them in half and swap with each and we'd probably each have the right amount of sleep and energy!0 -
Nancy618,
I know its feast or famine.. hang in there!
Ronnie
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