FEMARA
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I'm now been on a "break" from Femara for 3 weeks. I am so disappointed --- my joint pain is not noticeably better. I have an issue with the lumbar area of my back, and an MRI did not indicate any cancer -- just degeneration of the disks. At 64 years of age, I've still got a lot of living to do, and the pain is not much fun. I also sleep fitfully - never stay asleep throughout the entire night. Would like to hear from others as to taking a break from Femara -- or suggestions about my back issues.
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Ginger, talk to your Dr. at once do not wait if you have swelling or puffiness. My BS PA referred me to a specialized PT who treats LE. Talk to them, I had LE about this time last year after my radiation treatments ended. It helped soooo much.
I leave for my Zometa infusion at 2:30 today, I am also having additional labs done to check my vt D levels again. Lets hope my bone density lose.
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Emegram...The solution that I found for pain and back issues is that I joined a 'yoga' class. The stretching we do is the best medicine for me. I joined a 'senior' group, so we don't keep poses for five minutes and we have a chair next to us if we get wobbly. I always said that senior centers are not for me because I'm not that old....but I do go for this class.
Stretching those muscles and joints is what we need.I also sleep lousy and am waking up every other hour. The last two weeks I drink a big glass of cold milk 20 minutes before bed and It has made a tremendous difference. I dream now, so I must sleep deeper. If I do wake up I can fall right back to sleep.lullu...I'm trying to get into the high risk insurance myself too and I'll save myself 2-3 hundred a month. That's huge compared to what I'm paying now.
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Emegram, I have been off Femara for exactly three weeks today also (I'm on Faslodex/Xgeva now instead). I've been waiting for some sign of things getting better, too, and just this week I am beginning to notice that my hands are smaller and more flexible and my feet are slowly getting better especially first thing in the morning. I'm still more stiff than I was before Femara, but it's definitely starting to get a bit better. Hang in there a few more days before you get discouraged!
I take calcium/magnesium, Vit D and melatonin one to two hours before bed. The melatonin makes all the difference for me. When I skip it, I wake up in the night a lot more.
I also recommend a powder called Calm. You pour hot water over it and it's lemony fizzy. It floods your system with magnesium. Your muscles will relax and you will SLEEP... and the next day your bowels will get a move on! ;-) Win win win.
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I also take melatonin as well and when I miss taking it, I have trouble getting to sleep. With it I get at least 5 to 6 hours of uninterrupted sleep. I'll have to look into the Calm powder. Is it in the whole food section of the store.
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Walker- I am being treated for LE by a LE specialist but she is away for 2 weeks. I do my manual lymph therapy every morning along with my ROM exercises. I am seeing my dr tomorrow morning.
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Walker, I get it at Whole Foods.0
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Chrissy .....................if the SE's of the Statin kick in...........try COQ10.......................take about 150-200mg a day .............I was in severe pain when I went on Pravastatin for a mild HA, and a nutritionist told me to take CoQ, and it worked..........................it is worth a try............just a little bit of advice..............
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Thanks Ducky but I already take CoQ10 , 300mg p/d. I've been taking it for about three years already and yes you are right, I think it helps a lot.
Love n hugs. Chrissy
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Chrissy,
It seems like I might've seen this somewhere else on the boards, but do you mind sharing again what supplements you take? (Anyone else who wants to chime in, please do!)
I just started Femara about a month ago and I'm trying to add some supplements to try and mitigate symptoms and keep inflammation at bay as much as possible. Right now, I'm taking melatonin (trying to build to 20mg), green tea extract, coQ10, fish oil (actually krill oil), and curcumin (if it will ever come in the mail).
I've enjoyed reading y'all's posts on hot flashes and insomnia, my two main symtoms from femara, although joint achiness seems to be making an appearance now. I'm committed to making a go of this, so whatever I can do to help out with the symptoms, I'm willing to try.
Thanks!
Steph
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Hi I have been on Femara for almost 2 yrs and 1/2 yrs and I have hots off and on it seems to turn on the side affects of menapause, like, I was taking a mood stabelizer but was much to strong that particular one was Effexor could not take side effects were horrible for me but has worked well for others. I just put up with it because it has stopped the fluid from coming back and around my lung called Pleural Efusion I have stage 4 it has been a blessing I am in the process of possible seeing a Psychiatrist to try a antidepressant to help but also for other reasons.
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Hi Angel and welcome to BCO and the Femara thread. I notice you were diagnosed stage IV only a few months after I was. How are you doing? I know all of this is really hard to come to term with but you will find that your consult with the psych will be a tremendous help as well as being able to talk to the ladies here because we really get what you are feeling. On BCO there is a special forum for stageIV and you will find a lot of girls there that can help with all sorts of things as well as give the best support and cyber hugs.
Steph on a regular basis I take Vit D (no calcium as I have excess circulating in the blood at all times), Magnesium (for cramps and it works together with the Vit D to deposit the circulating calcium into the bones), Fish Oil (can be Krill Oil but I use wild salmon oil), Vit's B12, B6 and B3 (a high potency Multi B is fine. The B Vits are water soluable so your body uses what it needs and you pee out the excess and your body doesn't store them), Tumeric (curcumin because of it's known cancer fighting properties) and lately on the advice of my doc injectable Vit K. There are warnings with this and if you are prone to clotting it is not I repeat not recommended but research being done on it suggests it has a very good anti-inflamatory properties as well as helping to convert carbs to energy. The effect is lasting about three weeks for each injection before I need another. I have found that I have far more energy, and the inflamation of my joints has settled to the point that even though I am to have a knee replacement, it is giving me very little pain in comparison to what it was. The good thing is it is also injestable but I get a better effect from the injection. Moving is also good for the se's of Femara or any of the AI's and if you can't exercise in the true sense of the word, walking as much as possible helps. I have found that jigging to music helps too as it gets the heart rate up without putting stress on the joints.
Gosh that sort of took on a life of it's own....lol.......this is just what I do and take and find it helps me but do check with your doc before taking anything new.
Love n hugs all. Chrissy
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Thanks, Chrissy! I really like the collective information here at BCO. I haven't heard of injecting Vitamin K. I'll have to look into it. I'm getting Vit D checked next week. The only other thing I'm not doing is the B vitamins, but I have to be careful with those. For some weird reason, they make my joint pain worse. That's not a new thing, though, and I think it might be related to the filler in the vitamins, more than the B vitamins themselves. Thanks again for taking the time to share.
Angel, I take Effexor. It was a rough couple of weeks adjusting to it. In fact, had to take anti-nausea meds to get over the hump, but I felt a lot of relief from anxiety and depression within a short period of time. I still have some side effects, like being thirsy ALL the time, but I'll live with it because I feel so much better since I started taking it. I'm not really sure it helps a lot with the hot flashes, though! I hope you find a med that works for you.
All the best,
Steph
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artsee:
I don't doubt your percentages are more current than what they are saying here in Australia, as it seems like every person who knows I have had BC hasa woman in their circle of friends or relatives that has been cursed with it too.
We pay less per month for our private health insurance than Crissyb here in our part of Australia, and we also have medicare, which is available to all citizens, regardless of age or income.
Sadly, with the cost out of pocket to me for 5 surgeries, including reconstruction, chemo and radiation, was about $30,000. The government provided medicare has waiting lists, and it was too dangerous for me to wait a couple of months for the lumpectomy or more than 12 weeks to start chemo. If I had chosen to wait, my aggressive and invasive tumor could of spread! Though if I had gone on the waiting lists we wouldn't of had to use our private health insurance nor pay.
bottom line in Australia is medicare health care is free to all if you are willing to wait and not be able to choose who operates on you or when you will get treated. I will say, I do also know of many instances where medicare has been made available for urgent care such as bypass surgery without a blink of an eye. For some reason, I hear more and more about women with BC being told it's ok to wait as BC tumors grow slow. Some do, some don't. sorry to ramble.
Artsee: I'm curious - is the $1700 a month you pay for health insurance in the US for the two of you or just you?
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I believe one of the side effects for the antianxiety meds is a high pitched and very annoying ringing in the ears.
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I believe one of the side effects for the antianxiety meds is a high pitched and very annoying ringing in the ears.
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justagirl...Ah, the old 'free' health care system. Hurry up and wait. This is so unfortunate for the people that do need immediate care. In that way we are so fortunate here in the USA. My issue from diagnosis to surgery was one week and my insurance paid all. Your question about my insurance cost is for the BOTH of us. Although my husbands deductible is $200.00, and mine is $2500.00 a year.
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Hi, I don't know whether to laugh or cry after reading posts at this thread begninning and end. Venting ~
About the time my oncologist said I could live until my 90s. Also, I could take 3 Advil in the morning and 3 Advil in the evening for "the tin man syndrome" side effect/joint pain, my husband and I said we'd think about his recommendation. I trust my oncologist; however, on the way home I told my husband, "No thank you." which he supports. There's something to be said for quality of life in our 70s vs. quantity. Treatment is helpful to many, I agree. Cure is the name of the game. Good luck and lots of love to all, CMG
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Hi all, I was on tamoxifen for 5 years and thought I would be done. Horrible depression for all those years. I stoped in Nov. and they switched me to Femera . I am SOOOO tired. the depression went away and I do feel like my old self, just don't have the energy to enjoy it. I called my Onc. and they say it has 40 % benefit in taking it.
Janet
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artsee - thanks for clarifying the $ issue on your health insurance.
Don't get me wrong, I am happy we have medicare here in Australia for all citizens, but I chose to go 'private' and not wait, so like you, I only went 10 days from when I first found the lump to the lumpectomy. Medicare paid some, private health insurance paid some and all of the private hospital, including operating room time, my yearly deductible is $250 per family member, but ouch in paying the balance. One 1 1/2 hour surgery I had, well the anesthesiologist billed me $3200 and medicare and health insurance together paid for $900.
Instead of getting my hair done, and manicures and pedicures, and vacations, I pay to fight BC! At least my femara only cost us $32 a month here.
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Yes, Femara was $568.00 for three years (every month) and now since June it went generic and I went "Yipee"!
How can you turn down $ 23.00 a month right?
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artsee - yes, I agree$$$$ !
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Are any of you still paying the big bucks for brand Femara?
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I'm just finishing up the last of my brand name Femara. Insurance will no longer pay for it, with the generic letrozole now available. Dreading the possibility of new s/e's! Is there a difference in the pink or yellow generics that anyone can tell?
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Hi friends: Been off the site for awhile, really trying to stay off this whole bc site, but problems bring me back.
Lulubee: The generic in NJ costs $17.00 a month at CVS.. letrozole is the name. It is cheaper than the help I was getting to pay for the cost of the name brand Femara.
Emegran: I just started to have severe back problems after years with no problems of back. I am in PT now and am having problems walking. I am walking with a limp. My primary gave me the prescription to go to PT and to take prednisone which I did, but my legs and feet go numb and are tingling. I came back on this site to see if any one else is having this problem. All in all I find Femara or its generic to be much better for me than Arimidex which really destroyed me. I was on that for about 6 months, took a break for almost 3 and onc put me on Femera. I am hoping that if this is the cause of my leg problems, at least I won't have to run around to anymore orthopedic guys. I also had medical minescus surgery in June of the left knee. I am on meds approximately a year and a half.
Thank you and Hugs,
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Ronna ........have they given you any testing or scans since you have been having this pain in your back? Do you have Osteoporosis?
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Hello everyone
I'm new to the boards though have been lurking for a little while. Have been on femara (generic form) since summer 2011. Have the joint pain especially in my hands -----feels like I just got arthritis overnight and had more trouble with trigger thumb at the beginning. Still get it occasionally, but not as much---although a morning last week my daughter wanted me to help her braid her hair and my fingers kept locking up as I tried to hold her hair----I couldn't help her and felt so bad. Something that is bothering me lately though is shoulder pain. If I extend my arm a little too much it feels as though my arm is coming out of its socket. It is worse on the side where I had my surgery. Has anyone else experienced this too?
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Yes...I think it takes a while for all the muscles to heal from the surgery. And with the s/e of Letrozole it can be pretty miserable. All I keep saying to myself is " what's the alternative"?
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Yes, I agree---I say the same thing too. The other alternatives all seem to have similar s/es. Sigh.
Wish this didnt impede on my everyday life so much....
We had snow on the ground last week and I stepped outside to throw a couple pieces of bread to the birds-----didnt think to use the other arm and just tossing that bread off the deck caused a pain that practically put me on my knees. Oh well, one day at a time---I have to keep telling myself that and make adjustments, I am missing my pre bc life today! Time to get moving---if I sit too long at the computer I have to do what I call my quasidmodo walk for a short time until I get the crinkiness out.
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I have had to go to a PT for my left shoulder for 6 weeks. Then after that got better my right shoulder is almost as bad as the left was. I'm doing my own PT at home.
Letrozole just keeps on giving.
My trigger fingers and thumbs come and go. I still can't figure out why some days are worse than the others.
I still have 2 1/2 more years to go.
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