FEMARA
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I think I'm already having some bad issues on femara, too. I just started taking it a month and a half ago, so if it's this bad already, I'm really in for it!
My fingers and especially the thumb movement is weakened. I just posted about it last week (up above) but it seems to be getting contiously worse. Is this normal arthritis caused by the AI? I'm especially curious because after seeing my onc and telling her about it, I noticed down in the routine tests/orders she had ordered a whole bunch of tests that seemed to be for rhuematoid arthritis, lupus, C3 & C4 complements--don't know what that is. She ddidn't tell me she was ordering these, so now I'm nervous (what else is knew!) When I get up in the morning my ankles are also really stiff and they almost feel like they can't take my weight--they feel like they might just crack under the weight. Help, please!
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Denise...After 5 months on femara, I decided to go off....mainly to see that the side effects WOULD go away! I, like most, had severe joint and bone pain, numbness in fingers and hands, and 2 (almost) trigger fingers. Without telling my onc, I went off on May 23. After doing much research and not really finding a whole lot, but still realizing this drug has a great history of preventing reoccurence, I decided to go back on it on July 5. However, I am only taking half a pill (1.25mg). I feel like, from what I've read, this dose does provide estrogen suppression. I am to the point that it's that or nothing, so it has to help. I have had an ooph, hoping that is an advantage as well. The only side effect that went away the 6 weeks I was off, was the numbness in my hands. I still feel like I'm 90 years old...not exaggerating...very hard to move. I never had ANY joint pain prior to starting femara. I was very fearful what 5 years would do to my body. Yes, I do fear what cancer would do as well. And what I've chosen won't be the right decision for many. Please research, talk to your Dr. and hopefully you will find the best thing for you. I'm praying I can tolerate 1/2 a pill!!! I do see my onc next week and will discuss everything with him at that time.
Joni
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Now that I am finished Herceptin, there will be a chance to see if Femara is the culprit for my stiffness. As for feeling like I'm 90 - well, I do feel stiff, and justified in some moaning and groaning - but this week I am going to stay with my 95 year old father who is coming home after several months in hospital and rehab. I feel positively spry beside him! It's all relative.
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I have had Osteo arthritis since I was in my 20's, so I take Glucosamine/Chondroitin daily and have for many years. I also take 2 Alleve every night. I so feel a bit stiffer than I am used to, but I guess because I already have arthritis, I don't really notice that as much. I was tested for RA back in December before all of the BC stuff started, so I am sure that I am RA negative at this point. It does run in my family, which is why I got tested. I will see how things go with the Femara until I have taken it for 2 months, then decide. I think the oncologist thought I was being a baby when I brought up side effects, but I am definitely not a baby. I was up vacuuming my house the day after my lumpectomy and I have only missed two days of work in 10 years, despite having had a hysterectomy and cervical disk fusion surgery. We'll see. If I get the same impression from the oncologist next week, I may change to someone else in the practice.
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HI Girls,
Question for you - does anyone else get a weird "rash" around their toes while taking Femara? I have been to the doctors and they said they believe this "rash" is from the Femara, the same as hand & foot syndrome from chemo. At first we thought it was athletes foot but I tried all the remedies for that and nothing helped. I notice that if I stop taking Femara for a few days it goes away so I do think the doc is on to something. Just wondered if anyone else has the same problem. It starts like big lumps then the itching and then the skin peels off in thick layers. I don't wear closed in shoes at all right now, thankfully it's summer, but I also notice it gets worse with the sun. It's quite bad just now so I have stopped the Femara for a few days till it goes away as it drives me mad, it's like having huge mosquito bites and when the skin peels off it gets sore. The doctor gave me hydrocortizone cream to help it heal but no sooner has it gone then it's back. It's bad enough having feet and ankles that don't want to touch the floor on a morning.
Best wishes
Gaynor
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Gaynor,
I have a rash that sounds like that on my hands- we were thinking it was from the neratinib trial I am in but could also be femara. I am using a steroid cream right now because it got so bad!
Kristy
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After stopping my Femara for a month to see if side effects would lessen (not really), I am back on it, but with a few changes. I take the horrible little yellow pill at night and in the morning I take 2 Aleve tablets and 1500mg Glucosamine HCI. I truly believe my "aches" are better. I can't say I sleep any better though - hot flashes are still a major problem - but I do feel I can get through my day better. Now instead of feeling 76 when I'm just 56 - I feel more like 66! LOL Gotta be grateful for that at least. Hugs to everyone out there struggling with this nasty little pill.
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I have been Femara for two months and I have gained1 to 2 lbs per week. I can not keep gaining weight like this. Anyone else had weight gain on Femara? I'm going to see my onc. I started with Arimidex but I had terrible joint pain now with Femara no joint pain but weight gain. Help!
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SusanZ - Absolutely - weight gain is a side effect of all of the AI's - it's part of menopausal side effects and you've been thrown into the deep end of menopause with these drugs. I started on Arimidex also, then switched to Femara. I still have joint pain, but it's better with Gluclosamine and Aleve everyday. Best of luck
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susanz
I was post menopausal when I was dx. I gained about 22 lbs over the first 6 months on Femara. I didn't eat any more and some of it was because I wasn't able to do the exercise I had been doing but still it piled on. At 6 months the gain stopped thank goodness. At that time I was able to get back to some exercise but I think also that my body finally adjusted to the new 'normal'. I used to run 5 miles a day but sore joints mean I can't run at all now so it is walking and biking and tennis but they don't seem to burn up the calories like the running did - haven't lost any so far but am keeping at it.
Rae
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I am starting Femara on MONDAY. After 3 treatments of TCH I was in remission. Continued for 3 more treatments, and am now going to be on maintenance of Zometa, Herceptin and Femara. Yay!!
My first question is, is there a best time of day to take Femara. My next questions are - how many of you experienced joint pain and hot flashes? Also, how about weight gain? Just curious. Thanks for any help you can provide.
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(((I've been taken off of Femara and have 23 extra tablets - pm if you want me to mail them.. i know they are very expensive for some people))))
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I have not had one side effect to Femara at all. Each person is different. When I was first diagnosed in 2008 I was on Taxotere & Cytoxen and not 1 single single side effect except hair loss. Then I was on Tamoxifen and again not one single side effect but my estrogen came back and so did my cancer so I went on Abraxane & Avastin and again not 1 single side effect except hair loss. Now I am on Femara and guess what not 1 single side effect. I personally attribute this to the fact that I work out 6 days a week no matter what. And I have the cleanest diet ever.
I have talked to people who were on one drug and had horrible SE's and then they switched and never had another one again so I guess it just depends on the person. And I thank God every day that I was so blessed to not have any SE's
Jennifer
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Wow another forum to look for answers. I have been on Femera for 1 year. Hot flashes, insomnia, no libido, joint pain, night sweats, high cholesterol and severe digestive problems about once a week.
Will try the supplements for the pain and do find walking is best. Anyone else have problems with their gut? I have done the yogurt, pearls, cut way back on carbs and fats, but still feel like I have been prep for a colonoscopy every week.
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flachica - I find evening is best for me - but you may have to try both morning and evening - seems everyone has different reaction to the little yellow pill. Keeping my fingers crossed that you don't have major side effects on it.
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I now take Femara at night right before I go to bed. That seems to work much better for me. I did not have any hot flashes but major joint pain. It's been 1 year now and I think I have finally gotten the right combination of vitamins and exercise. I work out 4 times a week and that has really helped with the joint pains and the weight. It's been a long year but it is worth it. I have 2 grandchildren coming this September and I'm looking forward to dancing at their weddings.
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check out the arimidex link, one gal (MTG) included an article of a study that shows if we gain weight our AI won't be as effective i.e. we should be within the normal range weight wise. Boy that little pill comes with a nasty punch: for some of us it makes us gain weight and if we become overweight the pill is less effective. Gosh. I was on arimidex, then aromasin and maybe on femara in the fall (on holidays at the moment because of severe joint pain caused by the AI;s) The ones I took made be put on lots of weight, so does this mean I may as well have not taken the pill at all. Mmmm, I wonder, not a pleasant thought.
Glenis
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Unlike most ladies on this topic, I am just about to finish my 5 years on Femara. I am scheduled to see the Onc. on 9/7. However, my current prescript. will run out before then and I am not going to get it refilled (which would be for another 3 months due to insurance plan). I am going to take the 30+ remaining little pills and celebrate my 55th bday (8/30) by not having to take a Femara that day. I have not had even so much as a three day's break in the five years and even if the Onc. wants me to continue Femara or switch to something else- I will have had a little time off. The side effects have diminished or just become a normal way of life now and I don't pay attention to them. I have had only minimal weight gain, but try to go to the gym and really work up a sweat 4-5 days a week. I am a three time survivor and don't take this decision lightly at all, but I think I will enjoy not taking the pill or at least having a break from it. Each of us has to make our own decisions so my thoughts and prayers are with each of you. To quote Lance Armstrong- "Fight like Hell".
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aspen-thanks for your post! Today is the start of my 9th month on the little yellow pill. I have joint pain, intermittently, hot flashes, fairly frequently, but I feel like it's better to take than not. I like your determination!
flachia-when I start in Nov '09, I was taking pill in AM & had horrible fatigue. Switched to bedtime in January. What a difference, for me.
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I have been on Femera for 14 mos now,i have the neuropathy in my feet,legs,hands etc,they affect me mostly at night while trying to watch tv in my recliner.My feet burn,hurt tingle and it goes up my legs as far as my knees so far.My toenails are ugly and they feel like they are growing inward,they're not.My wrist both hurt a lot of time ,and the right more than the left,i have to wear a brace on it when i drive.I also have some back pain,and pcp had me get a bone scan a couple weeks ago,nothing was found,thank goodness.
Jacee,how on earth do you cut that little tiny pill in 1/2,it's so small and slippery....
I was on aromasin first and the SE'S were much worse.
Oncologist had put me on Lyrica a few months ago,i didn't last 3 weeks on that,sufice it to say the se's to me were'nt worth it,as i told the dr,i couldn't live like that as it wasn't living.So i went off it,and yesterday he put me on neurotin,told me to only take 1 for the first week at night b4 bed,then the next week work up to 2 and so on til i'm taking 3 a day IF i can tolerate them....
Still have hot flashes as well as chemo threw me back into menopause,i'm 72 now and thought i was done with that,surprise!!!
All in all i take it a day at a time and do what i can,and for an old lady i do a lot,especially gardening.Most people don't believe me when i tell them my age,they think that both dh and i look good for our ages,he's 73,even the dr's have told us that!!
I also told the onc yesterday that my hair is still falling out and he said he has a couple patients that say the same thing.I had to get a finer strainer for the tub so all that hair doesn't go down the drain..
Hang in thei gals,we can do this!!!!!!!!!!!!!!!
Kathi
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Question,How come all my post say Edit delete under them,am i doing something wrong??????
Kathi
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Kathi-those "edit" "delete" buttons are options for you. Edit is for adding to or subtracting from your post. Delete is to get rid of it for whatever reason.
Joni
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kathi..haha...it was a little tricky to cut the little pills in half. Used my big Wolfgang Puck knife witha rocking motion. Got on a roll and cut them all in half at once! I DO feel much better only taking half...tho it's only been 2 weeks now that I started back.
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That's crazy Jacee,i can just picture you doing that.Me i have to use my fingernail to even pick it up out of my pill container.
Onc put me on Gabapentin aka neurontin for the neuropathy since i couldn't take the lyrica.We'll see how this goes.Fell yesterday,don't know if i lost my balance from the meds or slipped in the water as i was watering my potted plants.Didn't get hurt too bad,just a bunch of bruises,and scratched up my glasses and messed up the frame on them.Glad it wasn't any worse.Falling is a scary thing when you get to be my age.72.
Kathi
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Kathi
I am sorry to hear you had a fall but I am glad to hear you didn't do any more damage to yourself than bruises and scratched glasses. Falling at any age over 40 is scary. My husband fell off his bike yesterday but he was unhurt and we were able to have a good laugh about it. He has a new bike with pedals that special shoes fit into and you have to twist your foot to get the shoe out of the clip. We were going along a boardwalk and he had to stop for a lady with a buggy and forgot about taking his foot out. I saw him in slow motion just fall over to the side - but hey presto, his feet both came out of the clips as soon as he hit the ground! We laughed on and off for the rest of the ride and he was VERY careful when we went out again today!
Rae
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Hi Kristyann,
I think I've found out what the "rash" is - it's a form of eczema called DYSHIDROTIC ECZEMA. It can be brought on by all kinds of things, stress included. You can google it to find out more. I was trying to find out as my family doctor said it was hand & foot syndrome but when I looked that up it didn't quite look the same and that usually occurs during chemo where as I found this started after all the chemo treatment was finished. I do think that by having gone through the chemo treatment it changes our DNA forever and therefore we are more susceptible to other things that our bodies never reacted to before. I do find that STRESS plays a large factor in most everything that now happens to our bodies, it's like having gone through the BC thing our bodies just don't tolerate things life throws at us like they used to do pre-BC. Having checked out the eczema thing I will follow the care instructions the website recommends and see if that makes a difference as I do not want to have to use steriod creams all the time as it's not good for skin to use it long term. I did try the zinc oxide cream last night and boy oh boy did it make a difference to the itching & burning so I know I will continue with that until this episode goes away.
Well have a good day everyone.
Best wishes
Gaynor
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Just an update....Started femara Jan....quit on May 23 due to severe pain in joints. Stayed off for 6 weeks. Started back on July 3 taking 1/2 a pill.
Finally went to onc. Discussed what I had done. He doesn't really like me only taking 1/2 a pill. But he noticed I had gained 12 lbs since last visit. I told him, I did good to get up off the couch, much less exercise, as much pain as I was in. This now puts me about 50 lb overweight. He agreed that if I take a full pill and can't exercise and keep gaining weight, my body will be producing alot more estrogen from the fat. He thinks losing the weight would be most beneficial. I asked him if it would be better to take a whole pill every other day, or 1/'2 a pill a day. He said 1/2 a pill would provide a consistent level every day. 1/2 is working much better FOR ME. Please note that he still doesn't like it, but he knows it's either that or nothing for me. I am able to do 3-4 miles a day walking...still hurt afterward, but I'm going to do it if it kills me!!!
On a side note, chest xray was clear, tumor markers are at 15 (CA 25-27). All lab was normal. Other than gaining 12 freaking pounds...a good report!!
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Sharing my femara experience - started in 11/09. Initially, fine - after a couple of months had a slight feeling of creaky joints in the morning (I am 46 and thrown into menopause early by chemo like many of you). By spring, still not too bad, but have no sex drive (sorry if tmi). Don't think I had gained weight, but could not seem to lose the 10 pounds I gained during chemo.
My onc. told me in June that yes, many women gain weight on femara, but she felt it was menopause metabolism related, and told me not to get psyched out - it is possible to lose weight on femara.
I started running (have never been a runner but have usually done some kind of working out). I LOVE it. My joint stiffness in the morning is gone, and I have lost 10-15 pounds and my other issue is completely resolved. It was hard to mentally decide to run but I figured if the contestants on the biggest loser can run, I can run. I started gradually, and at the high school track that is very cushy. Run two laps, walk two. I now can run 8 laps fairly fast.
Thought I would share!
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aprilgirl1-what a studette! I think I would pass out if I tried to run! But I walk several times per day.
I too have gained some weight. Scale doesn't say as much as I feel like I've gained & it's all settling in my stomach so I know it's the worst kind of fat!
I just need to ramp up my resolve to do something about it!
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GaynorI....For your exzema, try this....Get the packets of Domeboro...Walgreens....& try blotting that on the itchy spots. I mix mine with water in a little plastic container, blot it on with my fingers, & use it about 3 times a day...then refrigerate it...or not! Then I rub a little Caladryl on it. And you are right stress can REALLY cause any rash to flare up. Just don't scratch it! Makes it so much worse. Let me know....xoxoxoxo0
