FEMARA

cfdr

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.

maryah930

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.

maltomlin

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.

gardengumby

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.....

Eph3_12

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.

jittersmom

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

cfdr

 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.

gardengumby

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.

chrissyb

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.

gardengumby

Chrissy that sounds nummy. Is it a premix you buy or did you make the flour combo yourself?

chrissyb

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

micheleboots

Gardengumby, you could always go to a Wheat Eaters Anonymous Meeting.  I hear they serve cookies made with that Laucke stuff Chrissy mentioned....

dorothym

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.

GrandmaV

dorothym,  it sounds terrible.  Have you tried any supplements to help with the side effects? 

chrissyb

Dorothy, have you consulted a good naturopath?  They can really help with the easing of the SE's.  

Love n hugs.   Chrissy

Lily55

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

Scottiee1

Lily, I've read here that some women take one every other day with some success....

worth a try.

micheleboots

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?  

chrissyb

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

GrandmaV

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.

sgreenarch

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.

Emeritac

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.  

micheleboots

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.

dorothym

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

dorothym

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

chrissyb

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. Chrissy

artsee

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.

aussieched

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

cfdr

I don't experience hot flashes as a "flash". I feel like my perception of ambient temperature has no relation to external reality. I can be sitting in a 72 degree room and put my sweater on or take it off multiple times for no apparent reason. It's annoying but compared to my other symptoms it's no big deal.

HLB

My hot flashes seem to be getting worse lately and I've been having night sweats as wellm which I've never had. I'm thinking its probably letrozole but a little concerned about the night sweats. When I was dxd with mets I had been having night sweats every so often for a couple months. My hot flashes started with the first chemo and lasted about 8 years but had subsided substantially. Then started L and had no side effects at first but now the hot flashes again. Does anyone have night sweats as a SE of the AIs?