FEMARA
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I was on Femara for about 2 years and 4 months, during which time I became extremely anxious, to the extent I didn't want to get out of bed and would actually pull the covers over my head and stay there until like noon, then get up in a panic for all I hadn't done. I was afraid if I was happy, something more bad would happen.
Femara turned me into a shrew - I could go from being frustrated with my husband (and not saying anything) to blowing up and calling him 'whatever came to mind'. A minute of two later I would realize how inappropriate I was and would apologize. It was like being possessed. Never got getter either. And I didn't handle 'situations' at all well like I used to. If something used to be bad I could do or deal with it and when it was way over, then maybe I would have a tear of two. Femara had my hysterical at times. Finally about 3 months before I was switched to Tamoxifen due to getting mets, my GP switched me to an anti-anxiety pill to take, low dose, three times a day. Wow, in two days I noticed an overall difference and about 4 days later I actually woke up and just got out of bed. No hesitation, no anxiety. No worry that to be happy would cause my world to fall apart again (how I felt when I was diagnosed with BC). And my joints don't ache on Tamoxifen.
Anti-anxiety pills I think take care of the anxiety and enable you to get in and be what you want to be and do what you want to do, which in turn lessens depression. Very few Dr's will put you on daily anti-anxiety pills and anti-depressants. They may put you daily on anti-depressants and give you a light small dose of anxiety pills to take when you need them, but I find keeping ahead of situations finds me taking less.
Now on Tamoxifen I just have really bad hot flashes. Sure, I have my down days, but I'm always up by 9am (don't usually go to bed until midnight) and more often 7:30. I'm better for the anti-anxiety pills I know. Soon I'm going to try and decrease the amount I take, because then if I get bad news in the future I'm sure I'll need a full dose again for a while.
My Dr also thinks being out in the sun for 20 minutes a morning before 11am without sunblock or sunglasses but you can wear a hat to shad you eyes really helps improve depression and anxiety. There is actually a syndrome: Seasonal Affective Disorder. As we live in an area that is sunny more than not, my Dr just said go outside every morning that the sun is out. I've been doing it a week and I think I feel lighter and happier. Why no sunblock or sunglasses or that it has to be before 11am, I have no idea why. Wouldn't hurt to try.
Now as to being crazy. Who would not be crazy to a degree when they have to cope with BC and the oncoming aftermath? I think there are very few 'normal' people in this world!
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I suspect that the time for sun exposure is: to absorb VIT D. The hours he specified are before the sun rays do their damage, so no need to wear sun block (which also blocks the part that makes our bodies to assimilate the Vit D.
I am not a 'sun worshiper' as for needing to lay out in it to get a 'tan', but I know my moods are brighter when the sun is shining...
Vickie
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maryah930, I've wondered how much letrozole might be contributing to my fatigue. I started it right after chemo (which can cause lasting fatigue); I started on lexapro (which can also cause fatigue) right before chemo. I was diagnosed with pernicious anemia (which can cause fatigue) 5 months after chemo ended. I have mild sleep apnea (which can cause fatigue). Teasing out what is causing fatigue on any given day has been a challenge. I've weaned off lexapro, I'm getting CPAP for the sleep apnea soon, and if those two don't help then the next step is to see if I can increase the frequency of my B12 shots for pernicious anemia (which is a B12 deficiency, not an iron deficiency). If all those fail then I may do a vacation from letrozole to see if that is the cause, or, I may see my doctor about going on either wellbutrin (non-tiring SSRI) or ritalin or similar ADD medication. I am hoping I don't have to go on any other meds, though...it's been difficult enough without adding a new set of side effects to the mix.
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During the first week after each chemo, when I was feeling my worst, I watched AbFab (Absolutely Fabulous) - all seasons. As sense of humor definitely helps.
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Hi
I'm off to see the onc on Monday and I know she will say '5 years on Femara so it's finished'. When I asked last year about continuing for longer she said there was no evidence that it was beneficial beyond 5 years.
My husband's argument is that I may never have needed it in the first place, BUT there's no way of knowing.
My son is a pharmacist and I asked him how long the drug stayed in your system (half life), it's 48 hours.
I'm reluctant to finish taking these pills and was thinking of buying them and reducing the dose to every 3 days. That way I'll still have a reduced level in my bloodstream etc etc.
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cfdr - I didn't have chemo. I can say absolutely that letrozole contributes to fatigue, at least for some people. For me (personally) tamoxifen was much worse, but letrozole makes me tired as well. With tamoxifen I didn't do anything but sleep and work. Zero energy. With letrozole, at least some of the time I have some energy. Tamoxifen didn't give me joint pain, but it did give me a bunch of other stuff - like extreme asthma and blood clots. According to my MO, I'm probably allergic to it. I'll take the joint pain.....
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cfdr-if you aren't taking Femara/Letrozole at night before bed, switch. I had terrible fatigue when I started the pill & was taking it in the AM;after about 6-8 weeks I switched to bedtime. Helped immensely.
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gardengumby...same here Tamoxifen gave me depression/bloood clots it just wasnt for me...Letrozole make me tired and joint pain, but generally feel "better" I take mine at night. i have come to the conclusion i just will always feel tired! lol
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Eph3_12, I do take it at night. My level of energy/fatigue is inconsistent...I can be feeling great for a week or so, exercising regularly, but it only takes a day or two of pushing the exercise to the next level for me to have a serious crash that lasts weeks. From what I read, that points to the B12 being the cause (you can "use it up" between shots), but others have said they've had similar problems post-chemo, too.
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I have found that if I eat wheat, everything is so much worse. I was tired of feeling "deprived" so ate wheat for about a week. What a mess!! I was in agony, couldn't move at all it seemed and I was so terribly depressed that I just sat and cried. I went back off of wheat and within a matter of days I am feeling so much better. You'd think I'd learn - it's not as if I haven't gone through this before. I think I'm a wheat addict.
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GG I hear you on that score as I just love my bread......any sort! But like you I feel so much better in myself that going gluten free is not such a huge problem anymore. Over here I have found one of the flour is do a premix gluten free bread that you can make yourself.......I had I gained it would be like all the rest, totally lacking in taste and appeal......not so, I made some the other day to just try it and it was incredible! Lovely thick chewy crust and lovely and tender inside.......I ate most of the small loaf in one sitting and without and spread to boot. I will certainly be making that again but maybe in a smaller loaf.
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Chrissy that sounds nummy. Is it a premix you buy or did you make the flour combo yourself?
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GG it's a premix and the company is Laucke. All I did was add water, mix and let stand then bake. I must admit that when it was mixing the smell was a little unusual but the taste was scrumptious. I'll check the box and let you know what's in there. I just looked and it's not available in the USA only England, that's what it says on the box.
The list of flours are, potato flour, tapioca flour, rice flour, grains (linseed, kibble corn, sunflour grits), baking powder, rapeseed oil, salt, sugar (a touch) and vegetable gum.
It also says on the pack that you can use this flour for normal baking but I use coconut flour and banana flour for that. Perhaps you can experiment and put the combo together yourself.
Love n hugs. Chrissy
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Gardengumby, you could always go to a Wheat Eaters Anonymous Meeting. I hear they serve cookies made with that Laucke stuff Chrissy mentioned....
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I've been on Femara for 2.5 years. I'm miserable. Very emotional, joint/bone pain, exhausted all the time, dry skin, hot flashes night sweats and difficulty sleeping. i feel like the poster child for side effects. I'm thinking about retiring 2 years early because the energy level is so low.
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dorothym, it sounds terrible. Have you tried any supplements to help with the side effects?
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Dorothy, have you consulted a good naturopath? They can really help with the easing of the SE's.
Love n hugs. Chrissy
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I stopped due to side effects, if i could reduce them by half i would go back on so suggestions welcome but i did try some things without success
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Lily, I've read here that some women take one every other day with some success....
worth a try.0 -
I have a question. When you ladies have a hot flash, does it feel like your having a panic attack. I get so jumpy, panicy, with my heart feeling like it'sracing. Is this normal?
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Michelle that's what mine feel like with the added bonus of chest tightness and pressure.......thank goodness they don't last long.
Love n hugs. Chrissy
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Michele, same here.
Dorothy, For joint pain I take omega 3 fish oil 6 grams a day (clinical trial), curcumin c3 complex 8 grams a day. I went from using a cane due to joint pain and stiffness last November and December to no joint pain and only stiffness in the morning after I first get up. For hot flashes my onco had me take 1000mg vitamin E a day and it tamed the nuclear flashes down to more of a warm flush, and the anxiety I have that preceeds the hot flash has lessened. For the bone loss, onco has me on 1200mg calcium and 1000IU of D3. After I started taking the curcumin my headaches are fewer and not so bad. I haven't found anything for my hands and feet falling asleep, but my pcp wants me to get a massage to increase circulation. So far I haven't had the money to do that.
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I posted a few days ago about hot flashes being preceded by what feels like panic, anxiety. Not that I wish this on anyone, but glad to see that this anxious feeling isn't unique to me. A SE is at least better than sudden onset mental illness:) I do notice that on days that contain less stress, I have overall fewer hot flashes, but on the other hand they wake me too. My GP suggested a very small dose of Xanax before sleep and tho I don't love taking extra meds, this has completely cured my insomnia and waking due to hot flashes.
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Started on Femara May 6 after 33 rad treatments. My knees and hips have been hurting intensely. Not a fan of NSAIDS so take tylenol once in awhile. Was taking Femara first thing in AM with other vitamins. I had an AhHa moment last week. How about takng it in evening. Started last Thursday evening. Knee and hip pains are drastically reduced. Hope this will help somebody.
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Chrissy, I too have the chest tightness and pressure. It started this when I started Tamoxefin back in 2010. I went through a whole bunch of tests to check my heart... I was eventually told it was stress and try to relax and not to stress. Funny how just asking this one simple question I get an answer from women who are dealing with this, and no running through a whole bunch of testing to find this out..Thanks ladies.
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One of my best friends went through b c at the same time I did. She has horrible anxiety each night about 8 pm. Her onc at md Anderson said it was part of the hot flashes
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The only thing I'm not taking is the cur cumin! I had thyroid disease before so never was a ball of fire, but this is insane
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About a two months ago I mentioned my tiredness to my naturopath and she said that my adrenals were in distress and gave me a compound called Adaptan. It contains Rehmannia glutinosa root, American ginseng, Wild Oats and lavender. I take two a day and slowly my energy is returning to the point I'm looking for things to do so I'm moving rather than wanting to just sit as I'm too tired and have no incentive to do anything.
I'm liking feeling this way and it hasn't taken chemicals to do get me feeling this way........I don't want to push anyone into using natural medicines but I have found through experience that it is a good thing to use a good naturopath as part of your team to get you healthy and strong again. Without mine I know I would be suffering with a whole lot of aches, pains and things I don't even want to think about.
Love n hugs. Chrissy0 -
I really think and learned a lot when the BC creped into my life that the anxiety and panic for some people causes the hot flashes...night sweats etc. The scariness of these feelings make the body go through scarey feelings which in turns makes people sweat. It's amazing to me how much our body suffers from the fright of this disease. If I think I may have a little pain, somewhere, just the thought of having the BC come back can put me into a full blown pain somewhere in the body. I"m not saying that Tamoxifen or any of the AI's don't cause hot flashes or night sweats......but other things contribute to them as well.
The more you 'dwell'.....the more you 'smell'........a little something I tell myself.
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Hello Maltomlin Just wondering how you got on at the Oncologist. Were you allowed to continue on the Femara, or do you have to stop. If you were advised to stop, can you advise your oncologist's reasoning.
It will be 6 years for me this coming December, and I am wondering whether to continue the Femara. One onc said it was up to me, another is advising that it might be best for me to start Tamox for a few years. I am finding it so hard to decide what to do, as I am experiencing major problems from the Femara with decreasing bone density and pain when I walk.
thanks Ched
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