FEMARA
Comments
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BoPeep -- I'm wondering if you should actually be consulting a rheumatologist? S/he would be able to prescribe suitable medication to control your pain, and would also likely put you on medication to help keep away your impending osteoporosis. There are also several OTC supplements that some of us use to keep our joints fluid and moving, such as Omega 3 fish oil (that is what has relieved my joint pain). Someone suggested bathing in epsom salts every day -- there are all sorts of things you could try -- just read through some of the threads here.
But before going off Femara, do try to see a rheumatologist. Wishing you well....
Linda
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Hi Ladies,
So glad to be back from my trip up north, BRRRR! Holly, I'll ask my Dr. about that Vagifem but doubt she'll let me use it. She was totally against anything that had estrogen it in, but it's worth a try. Thanks
Went back to work today, been off since my exchange surgery, and worked 4 hours. Was on my feet most of the time and they are hurting like before. It's hard to believe such a small pill causes so much grief for us. Hoping to start aerobics next week and that it will help again. My wrists are hurting and my right thumb as well. I think I'm going to go take some tylenol and take a snooze. Hope everyone has a peaceful night.
Kelley
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Hi ladies,
I have been on Femara since June 22nd. This week I've developed a trigger finger of the middle finger on one hand. The fun just never stops does it? In the morning I try not to close the finger and usually in an hour it goes away. Has anyone else had this problem?
Debbie
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I have a trigger finger on my right middle finger. I cannot figure out how this itty-bitty pill can cause so much havoc on my body.
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Hi Debbie: Yes! first the left hand finger, then 2 months later the right hand finger. Then about 6 months after that, the left index finger! I could tell (after the first one) when it was going to happen because the finger felt very stiff and achy for a couple of weeks. However, like you I don't have problems with it after the first stiffness in the a.m.
Linda
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Isn't this fun?!?! Other than being in constant pain, the thing that frustrates me the most is that other people (including family), just don't seem to get it. They look at me as if I'm nuts because I take the ramp instead of the stairs to come into my office building (foot drop). Apparently, people who drive sports cars aren't supposed to have handicapped permits, either.
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Jane, these are probably the same people who get terribly frustrated when they're in line at the supermarket behind someone with severe arthritis who has difficulty getting the change out of her wallet and holds everyone up
. We have very little patience with those with infirmities, until we begin to experience it ourselves, unfortunately.The s/e's of Femara frequently mimic those of osteoarthritis (in those patients who would likely get arthritis as they age) and I'm wondering why these patients aren't referred to a rheumatologist for pain control or exercises. At least rheumatologists have both the empathy and the understanding of the pain processes, whereas oncs are often at a loss with these kinds of s/e's.
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I saw my onc on Thursday and he told me to take one Tylenol Arthritis every morning like I would a vitamin. I get stiff when I uncross my legs after sitting for a while and I walk like I am in pain until the walking has loosened everything up. I try to play it off by getting up and walking fast until the stiffness is gone. I got to start taking my little piece of heaven, wonder pill by being put into menopause by surgery. I am 37 now and was diagnosed a year ago today. I tease my husband that he is going to have to get a hover round and that I am going to join a red hats society because I am having ailments well beyond my chronological age. I found out after a glamorous year of chemo, bilateral mx, hysterectomy (poor Tamox metab.), recon, and now Femara that I have severe Osteopenia in all parameters and Osteoporosis in my lumbar spine. I have taken one dose of Boniva and Monday I start on a twice a year Zometa infusion. Is anyone else using this (these) for osteo with the Femara? I feel like I could give my 87 year old (41 year BC survivor) grandmother a run for her money on ailments and meds. I don't think she is on this many things. She had that take everything off mastectomy surgery in 1968 and that was it. I would guess at this point she will die of something else. Should give us all hope that this beast can be beat I guess. Anyway back to my actual question......any fellow Boniva/Zometa users out there and if so any se's I should be prepared fpr? Thanks ladies!!!
edited for a forgotten word..oops
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Hello all my femara friends!! Boy, do I ever see myself in so many of these recent posts. I have only been on femara since July 09 (app 6 months) and in November I broke a rib (simple fall in the bathroom onto the side of the tub where I should only have been sore). The first part of this month I think I either bruised a rib or had a hairline fracture-different rib but same side. Had a PET/CT scan in December. Have not seen my onc. since the results but did see my family doctor on a routine check-up. He told me some of the results--best was significant reduction of the cancer. Also, a nuclear bone scan was recommended-which I had last week. Now I have an appt with onc. Thurs of this week. Depending on the results of that bone scan, I may be screaming and yelling in the dr's office; because I just don't know if I can continue on femara if it is affecting my bones the way my "simple" mind is thinking it does. Six months on this stuff and these bones acting like they are now!! What is it gonna be in 2 or 3 years?
Now, to get to some of the other side effects. At least, I think they are. Starting Saturday night I started feeling super weak (absolutely could not have fought off a butterfly!!) and until this morning I felt this way. Today I am feeling better--the butterfly, I could win against today. HA My daughter seems to think all this may have been caused by a change in my nerve medication. Good ole Medicaid will not pay for effexor anymore; so I was switched to zoloft 50--effexor was XR 150. Anyone know anything about these things?
Like so many of you, I don't think people even think you are sick at all. That little pill takes care of everything!! WRONGO BABY!! It might be helping choke a cancer and I wish so much that was ALL it would do. At lease once a week or more, there is a new pain. May only last a day or two but you still have to put up with it until it is gone.
What hurts me the most out of all of this is the fact that I have always been so independent. Took care of everything myself--did not need to ask for help at all. I am 63 and up until this crap started was a very young 63.
I have a question if anyone could answer, would really appreciate. Can you get a handicap sticker for your car if you are suffering from these side effects of femara?
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Kelley: The gyno was sure the onc wouldn't want me to use it either, so she advised me not to tell her. She said the risk was practically nill and the dose so low. She just wanted to improve the quality of life for me. I've been on it for over a year and everthing has been fine. I too see myself in so many of these posts and am so tired of people thinking I'm imagining all the side affects. At least we all know the score and can support each other. As I said, I'm on Femara for 5 1/2 years now. I see a lot of you are talking about bone loss. The really strange thing is I just had a bone density test by the rheumatologist (and yes he does think your pain is real) and he said I had the bone density of a 25 year old! How strange is that? I'm 49 by the way. So it hasn't affected my bones. In fact, I have stenosis of the spine, which is an "overgrowth" of bone. The rheumatologist still treats me like a Lupus patient, but we all know better. Would love to hear from someone who was on it for the duration and all the pain went away after. At least you would know there's a light at the end of the tunnel. As I type this, my wrist and fingers are throbbing and I work in a law office, so I am always on the computer. I am going to keep looking for that study to be published on recurrence patients and the use of Femara and hope for the best. Will try the aspirin too. I've been using Advil PM just to sleep, but I don't want to wake up!
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I have a temporary (1 year) handicap sticker from my onc due to the neuropathy and foot drop. I explained to him that the parking lot for my office building is about 4 football fields from my office and I work on the 4th floor. I also get short of breath very easily since rads as well.
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gauleyeagle,
Your weakness could definitely be attributed to the change to Zoloft. Can you not appeal a Medicaid decision? I don't know anything about Medicaid but anytime my insurance won't cover something my doctor or I appeal it and so far we have won. I don't know if Medicaid is like that and I think you will just as happy with Zoloft. Just a thought for the future though....
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gauleyeagle... I am newly diagnosed and was browsing this thread since I will most likely be taking hormone therapy at minimum. I noticed your comment about not being able to take Effexor XR any longer. I can't imagine how terrible you must have felt not being able to take it. My goodness! If I miss more than 2 days of my medication, I am terribly sick...nauseated, dizzy and can't function. I am 61, so very near your age. I had a bilateral mx on Jan. 5th. I'm waiting until I receive my OncoType score to learn exactly what my treatment will be. Just wanted to tell you that I hope you are feeling better. This is a wonderful place to find just what you need from friends you haven't even met yet!
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Holly,
It's funny how your gyno wants you to hide that from your onc. I'll have to think about how I'm going to approach this. I see my onc in about 2 weeks. Many times I have wondered if taking this Femara is the right thing to do. My right hand and wrist have been hurting like crazy these past few days, along with everything else it's doing to me! I could go on my soapbox but that won't do me any good, I'd be back at the same place I'm at now.
Take care ladies!
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I asked my oco today about Femera have been on it since Dec. 8th and it is going extremely well. No side effects at all, every once in a while I will get pain where the tumor is and in the center of my chest where the swollen lymphnodes are. I take it at night and I sleep very well better than I have in years actually, I have been taking it at night since the beginning. I told the dr. that i thought I was depressed today and he said that it was a side effect of the Femera, so just see another month and see how I feel. That taking an anti-depressent might not be good for me taking that and the femera.
Sandy
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Kelley: You know I was talking about Vagifem and hiding it from the onc. The gyno is all for me having a better quality of life. She has many other patients who just wanted to feel good about themselves again as side affects from other meds are so bad. At least sex didn't have to be painful too. I blubbered all over her as finally someone was listening. Like I said it's a very low dose and doesn't get into your bloodstream. It's also not cheap, so you have to have a good medical plan. The onc doesn't even want to hear my Femara complaints as she says the bad outweighs the good, yadda yadda. Do you all find that your joints hurt a lot less in the warmer months? As soon as it got colder here (i'm in New York), the pain got a lot worse. Something as tame as raking the leave made my hands swell up. It stinks when you can't do what you want as you know the pain will follow.
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Ladies there is hope. It has been 1 year since I started Femara and slowly but surely either the pains went away or I accepted as the new norm ( I think the previous not the latter)
The only remaining problem is the fat cell situation. Since my body does not have any other source of estrogen it is telling my fat cells to brace themselves against all and any attacks and is actually armoring them lol... so I have gained about 20 on femara a total of 50 pound weight gain since this all started.
Staying active helps, massage helps.. I was a rower had to stop due to trigger fingers and achey joints then started slowly back (no drastic actions.. ) and now I am almost back to where I was. I gave up stilettos to crocs, clarks and good support shoes that minimized the foot pain.
So there is light in the end of the tunnel
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Ladies: I was given my first rx of Femara today. I've been reading these posts to see what others have experienced. The good, the bad and the ugly. I hope I don't have lots of side effects. If I do, I'll discuss some of the herbs and supplements I've read about on this thread with my onc. I'm glad all this info is available. Good wishes to us all. Jean
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I have heard a lot of women talk about trigger finger on here and my mother had sugery last year for it but I still really don't know what it means. Can someone explain?
Thanks.
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For me, when I close my hand into a fist, the middle finger on the right hand gets "stuck" down. It takes effort and sometimes assistance to pop it back up. This usually only happens first thing in the morning the first few times I close my hand, but last night it was happening in the evening as well.
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Holly, I know you were talking about the Vagifem and I appreciate the info. I may have to call my gyno and see what she can do. it's very strange, I haven't heard from her since she called to tell me I had bc, in August.(this was after the radiologist that performed the biopsy called me). I'm definitely going to talk to onc about the dryness and she if she recommends anything other than the replens cuz I don't want this to be my sex life! If I don't get anywhere with her, I'll have to consider other options and hide it from her!
I've only been on Femara since November, so I don't know about the weather thing. I live in Fl. and even though we just got done with a cold snap, it might not have been long enough. I'm tired now and need to go lay down. Take care!
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My gyn. said it was okay for me to use Vagifem, but my onc. said absolutely not. so I am not using it. I use coconut oil "down there". My onc. recommended Replens, but I don't like it, I find it irritating. I will talk to my onc. again about this when I see him in March.
Well, Monday will be 4 weeks on Femara, and so far, it hasn't been the horror I was dreading. A bit of stiffness when I am sitting in one position too long, some hip pain, nothing serious. Fatigue, but what else is new?
Hope everyone else is faring okay.
Hugs to all the Femara gals!
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ThereIsHope
Good to hear from someone who is near my age. I am sure there are a few more also!! And, Like you I am so glad to have found this site. We can all commiserate together and also share feelings and facts.
I am also inclined to believe what others have written here, the oncologist does not want to hear about any of the side effects of femara. Saw mine last week and was telling him about the shortness of breath and coughing--very similar to the allergy to my cat that my family dr. made me get rid of!! My onc, tho, just wanted to blame it on cigarettes because I smoke. Know I do not need to smoke BUT I did not have this problem until the femara was in my system about 3 months.
Got the results of the nuclear bone scan and there is cancer no other place in my body other than under my left arm and this is much smaller than when I started femara in July 09. Wonderful, wonderful--thank the Lord.
Does anyone know of a website I can visit that lists in black and white the exact changes made to medicare and medicaid that went into affect the first of this year? They will no longer pay for the fragmin shots that I have been taking for 6 months and I cannot afford $2700 a month. Onc said I will be ok; just everyone pray for me.
Will go for now. Hugs and prayers for everyone.
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My onc took me off the Femara yesterday. He said to go a month without to see if the SEs go away. If they do, then he's going to try Aromasin.
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Im filling my perscription of Femara TODAY....eeeeeeekkkkkkk?!
Ill start it Friday, after my 7 days of anti biotics. Oh the joy...We'll see how things go.
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Jane: What's the difference between the two? Just different companies? Can an Estrogen pos person use it? If so, maybe I can use it until the onc feels I can stop. My next visit with the onc isn't until March. Like I've said, it's been 5 1/2 years so far, so a couple of months more can't hurt. Will be very curious to see if your symptoms go away! And Kelley I am jealous that you are in the "warm" weather. Lived there (Pt. St. Lucie) years back, but the job didn't work out so I came back here. Kinda miss not freezing my butt off though as I love doing outdoor stuff. Not surprised that other onc's have forbid the use of the Vagifem. I'm on it for over a year now and the tumor markers, bloodwork, etc. have been fine. It's freezing in my office and also have Reynauds Syndrome, so my hands are very cold. Need to finally eat something and warm them up! Thanks girls!
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Aromasin is also an AI, like Femara, and, from what I've read, has similar SEs. Some people just react differently between the 2.
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Jane,
Keep us posted, and let us know if your se's go away... I hope for your sake that they disappear...
Lexislove,
We can keep each other updated on our experience with Femara. I just opened a 2nd bottle... I seem to be doing ok. Some stiffness, and aches... not too much in the way of Hot Flashes... but at night, I get night flashes... but we have an electric blanket, so it may be from overheating with the blanket... I tend to blame it on Femara, though. I have adjusted to the blanket, but still get these episodes once in awhile.
Harley
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I shudder to think as I am on my 66th bottle!!! I've been having hot flashs since my first experience with Tamoxifen, then Femara, which makes it 8 years now!!! Wish it would all go away. My honey says it's like sleeping with a heater 12 months out of the year. I have the fan going 24/7. Looks like snow here and all I can think of is I'm out of work in 25 minutes!! Thank god for the little things.
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Holly,
How long does your onc want to keep you on this? I know mine initially said 5 years but then mumbled something that sounded like maybe longer depending recommendations by then. I have the fan on at night all the time, too. In between night sweats, I freeze! I guess this is what life will be like for a while.
I started taking it at night to see if that makes a difference but haven't noticed anything yet. I have, however, started drinking this extra sleepytime tea at night and it seems to help me sleep better. Either that or I'm just exhausted! lol
Take care.
Kelley
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